Painting for Hailey

For Natalie and all of "The Special Moms" out there

2012-02-08T04:12:00.001-08:00

Traveling Bears

2012-01-27T18:33:00.000-08:00

Do you know a child who would love a visit from a cute and cuddly teddybear who just so happens to have the same disability as they do? These friendly bears are on a very special journey spreading awareness, encouragement and love by visiting families all over the world. This mission was brought to life by a very young 7 year old boy named Elijah and his mom. They wanted to raise awareness for his diagnosis Pediatric Stroke, and thus the Traveling Awareness Bears were born.The effort took off and was even more successful than they could have ever imagined, bringing along the conception of multiple bears with varying diagnosis’s known as the Bearowicz family. The bears are allowed to visit the home of a very special little girl or boy for 1 week, and for individual circumstances up to 2 weeks.They arrive with a journal and a passport in tow. Each child gets to stamp the passport and marvel at how far and wide their bear has traveled to be with them. (pretty awesome huh)?The bears hate that they have to leave after just 1 week but they are mindful that their job is very important and they have friends around the world that need them too.The bear is allowed to go almost everywhere, to schools, Dr.s appointments, surgeries and even while they are attending horseback therapy lessons. The organization is to taking suggestions on other disorders, diseases,syndromes, and disabilities but for now the bears that are making the rounds are...Pediatric Stroke, Autism, Congenital Heart Defect and Rare Chromosome Disorders, lymphatic malformation, Chiari malformation, cerebral cavernous malformation, EA/TEF and they are also working on diabetes, epilepsy, leukemia, hearing impairment, ADHD/ADD.. Their goal is to eventually have bears for all of the things that affect our children. If you would like a member of the Bearowicz family to come visit your home for a week Click Here .The organization is currently in the process of becoming a non-profit 501c3 but in the meantime has a WISH LIST Please take a moment to see if you can help out with any of the items on their wishlist. They are not expensive items and some of you may have things around the house that would be helpful to them.Traveling Awareness BearsP.O. Box 1513O’fallon, MO 63366

I am the child

2012-01-25T04:17:00.000-08:00

I have posted this one in the past, but since I have so many new readers, I thought I would repost. It is so important for everyone to understand. I only wish I knew the author so that I could give proper credit.I AM THE CHILD(Author Unknown)I am the child who cannot talk.You often pity me, I see it in your eyes.You wonder how much I am aware of -- I see that as well.I am aware of much, whether you are happy or sad or fearful,patient or impatient, full of love and desire,or if you are just doing your duty by me.I marvel at your frustration, knowing mine to be far greater,for I cannot express myself or my needs as you do.You cannot conceive my isolation, so complete it is at times.I do not gift you with clever conversation, cute remarks to be laughed over and repeated.I do not give you answers to your everyday questions,responses over my well-being, sharing my needs,or comments about the world about me.I do not give you rewards as defined by the world's standards -- great strides indevelopment that you can credit yourself;I do not give you understanding as you know it.What I give you is so much more valuable -- I give you instead opportunities.Opportunities to discover the depth of your character, not mine;the depth of your love, your commitment, your patience, your abilities;the opportunity to explore your spirit more deeply than you imagined possible.I drive you further than you would ever go on your own, working harder,seeking answers to your many questions with no answers.I am the child who cannot talk.I am the child who cannot walk.The world seems to pass me by.You see the longing in my eyes to get out of this chair, to run and play like other children.There is much you take for granted.I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again.I am dependent on you in these ways.My gift to you is to make you more aware of your great fortune,your healthy back and legs, your ability to do for yourself.Sometimes people appear not to notice me; I always notice them.I feel not so much envy as desire, desire to stand upright,to put one foot in front of the other, to be independent.I give you awareness.I am the child who cannot walk.I am the child who is mentally impaired.I don't learn easily, if you judge me by the world's measuring stick,what I do know is infinite joy in simple things.I am not burdened as you are with the strife's and conflicts of a more complicated life.My gift to you is to grant you the freedom to enjoy things as a child,to teach you how much your arms around me mean, to give you love.I give you the gift of simplicity.I am the child who is mentally impaired.I am the disabled child.I am your teacher. If you allow me,I will teach you what is really important in life.I will give you and teach you unconditional love.I gift you with my innocent trust, my dependency upon you.I teach you about how precious this life is and about not taking things for granted.I teach you about forgetting your own needs and desires and dreams.I teach you giving.Most of all I teach you hope and faith.I am the disabled child.

The world needs art!

2012-01-22T18:49:00.000-08:00

Today's post was brought to you by Jewels, she wrote this lovely post after meeting Hailey at the Dance Studio... I am a dancer of IMPACT dance company, located just outside of Boston Massachuesttes. The companies founder/choreographer/most amazing woman ever is evolving a evening length work right now based on the movement of Hailey, a beautiful bright four year old with Cerebral Palsy. Hailey's Grandmother has a beautiful blog that documents their families journey, please read about this remarkable family here.Working on this piece has been emotional since day one for me. Working to promote Autism Spectrum Disorder Awareness has opened my eyes to the struggles so many children with special needs face, especially in social situations such as schools. It was wonderful to meet Hailey and hear her parents speak about how much she has opened up with children at school, and to witness her be completely open with a room full of strong dancers - not say in the least - was so heart warming. We all fell in love with Hailey the second she entered the room. Her sparkling eyes lit up and she went straight to the mirrors, admiring her beautiful face. We preformed a part of our peice for her, and she watched with rapt attention, smiling and giggling the whole time. The joy in her face is something I will never forget. It made me think about how much I take for granted - the fact I can move and have a body that is suited for dancing, I can walk I can run, I am weight training, I can articulately speak my mind- things she will not be able to accomplish because of her body and her brain. She is extraordinarily intelligent. After watching us she copied our movements exactly and picked a favorite part of the dance. I truly believe she will do great things with her life, she is too intelligent not to. Please follow her story at the link above and stay tuned for the progression of this piece. Todays post was written by Jewels She is one of the Dancers over at Impact Dance Company Boston

Child model with Down syndrome inspires thousands

2012-01-22T18:08:00.000-08:00

To see a video of Ryan Langston, Click on the link below. He is the young boy that everyone has been blogging about! Child model with Down syndrome inspires thousands

Best Grandparenting Blog!

2012-01-18T18:45:00.000-08:00

About.com is looking to give the 2012 Readers Choice Award to the best grandparent blog and “Painting For Hailey” has been nominated! This is the category that we are nominated in.Best Grandparenting Blog by an Individual Blogger

If you enjoy reading my blog and learning about Hailey and our families journey, please go over to the nomination page and nominate us. The five blogs that get the most nominations will make it into the voting phase. Nomination: Best Grandparenting Blog by an Individual BloggerAll you have to do is write in 3 pieces of information as follows: Name of Blog* “Painting For Hailey” Blogger Name (Real or Blogging Name)*Janet “Grammy” Harrold Blog URL/web address* www.janetharrold.blogspot.comSo head on over to About.com Thank you for your continued support and if you want to see our profile on About.com you can see it here

Mary Clare and Luke

2012-01-13T17:44:00.000-08:00

I just realized that I haven't been posting all of my latest paintings on the blog. I have been painting, just not posting them. Here is my latest, I hope you enjoy! Oh and head on over to my painting for Hailey fb page to see more.The shirt in my painting is different per moms requestMary Clare and Luke... so precious

The Photo

Who's next??? inbox me www.harrold.janet@gmail.comand thank you for sharing my paintings with your family and friends

"Inclusion Infusion"

2012-01-09T18:00:00.000-08:00

Inclusion infusion, that is what comes to my mind when I see this ad. The buzz around the special needs blogosphere is that Nordstroms and Target have really hit a bulls eye with their ads featuring this handsome young man Ryan. Ryan (who just so happens to have Down Syndrome) is included in both of these ads.

Often times our society excludes children with disabilities, too many times they are separated, stared at and picked on. It does my heart good to see these retail giants support and include Ryan. After all...he is adorable, just as cute as any of the other children in the ad. I shamely admit, that before Hailey was born, I had no idea that the special needs community is as large as it is, I not only had no idea, I never took the time to find out, or to care. It wasn’t my issue, After all, I was too busy, and it didn’t concern me. SHAME ON ME! But the reason I had no idea, is that I was never taught or educated about how or why people with disabilities were born, or how they should be treated. When I went to school the children with disabilities were in a separate classroom, away from everyone else, they did not participate in recess as we did, they didn’t have lunch when we had lunch, they took a different bus than we took to school. I thought they were someone to fear! After all, alot of the children in the special ed class couldn’t speak and they sometimes made loud noises and that scared me. I thought, they were behind closed doors for a reason, and I should be afraid of them. SHAME ON THE SCHOOL SYSTEM! But now that I am grown up and I have a beautiful granddaughter with Athetoid Cerebral Palsy. I know that people with disabilities are just beautiful members of this society just as you and I. They deserve respect, love, patience, understanding, acceptance and they deserve to be included in everything that you would want to be included in. I believe that if we see more often in the media children who have special needs (such as an ad with a child in a wheelchair, or leg braces, maybe someone with a therapy dog, or a child with a walker) If it becomes more commonly viewed, then it will become more accepted or more “the norm” and others will understand that people with disabilities are not people to be pitied but accepted, respect and included. As a granddmother who supports and loves her grandchild just as anyone else supports and loves their grandchildren, I have made several small attempts to try and make inclusion a priority. A few recent attempts that I have done to raise awareness. Some have been successful, others, not so much. But with these two retail stores putting there best efforts forward, I will continue to try and maybe, just maybe one of my efforts will catch on.One small effort that I make to raise awareness is this blog, it is a pretty well read blog, so I have to say that this effort has been successful. Another successful effort for raising awareness for C.P. is hiding a green Cerebral Palsy Awareness ribbon in my paintings, this has been sort of successful, I have many people who view my work as about it, and this gives me a chance to explain. Another successful feat was this years “Christmas Card Project” It was my hope to design a Christmas card that featured a child in a wheelchair opening up a present and enjoying Christmas just as any child enjoys the act of opening up a present.

These cards were sent and received by so many people across the world, thanks to the Cox family for allowing me to paint their handsome boy Carter and for sending these cards to soo many people. This idea came to me after writing a letter to “Blue Mountain” greeting card company and a couple of other companies suggesting they come out with a line that featured cards appropriate for and featuring the special needs community, this effort was rejected and makes me want to start my own line. I really want to do this and have been working on it, but I don’t have the necessary resources. Another effort that was rejected was my letter to Susan Lordi (Willow Tree Figurines) You have all heard of or seen these beautiful figurines. They claim to have a figurine for everyone or just about any occasion. I beg to differ, I love these figurines, I love the art, sculpture and the painting so much of these beautiful simple works of art that I contacted the owner and asked them to sculpt a child in a wheelchair, or in leg braces etc. They sent me a nice response but were unwilling to fill my request. This is an example of one of their figures, depicting a perfect family,

however it doesn’t look like my family. I would love for Hailey to see things that she can relate to. Not that she can’t relate to every other little girl that loves to play with dolls and watch cartoons, but it would be great to see a large company support everyone, just as Nordstroms and Target are doing. They are saying that our kids are just as adorable as other kids and they are treating our kids as equals and that goes along way with me! A big thank you to Target and to Nordstroms for the support!

Where It Counts

2011-12-27T18:44:00.000-08:00

Today I read this on facebook and just had to share :)Love the image too!

I'll never be on the cover of some glamour magazine.I'll never wear a crown or be a beauty queen.There are days I look like hell,There are days I show my age,But in my heart... where it counts I'm Beautiful all the same.I might not save the world,I'll never cure some deadly diseaseWon't fly above the treesBut I'll do my best to change the world a little each dayI'll do my best to make a difference,Touch the heart of someone as much as I can,Make a mark on the world where it counts.I know many who will try to put me down,Many who would love to see me fail,But I know who I am and that's where it counts.~ Written by K.D. Storm

Santa Claus

2011-12-23T08:00:00.000-08:00

This year I thought was a good year for Hailey as far as the Santa Claus thing goes. I wanted to know whether she was getting the whole concept about Santa or not, so I decided to ask her questions about what she was getting for Christmas. Obviously Hailey couldn't tell me in her own words, she doesn't speak, so my questions would simply be yes or no questions. Hailey is very good at shaking her head no and when she nods her head up and down for yes, it is much more of a subtle nod, If you are not paying close attention you just may miss it. The first question I ask her is..."Hailey, have you been a very good girl this year?" Hailey slightly nods her head up and down. and then I ask..."Hailey, is Santa Claus going to bring you lots of toys?" again her head slightly cocked and she is nodding up and down. So I continue... "Is Santa going to bring you a doll baby?' up and down again. "Is Santa going to bring you a truck?" this time I think i'm going to trip her up abit, but she slowly nods her head up and down again. Now I'm thinking she is just saying yes to everything I ask her. My next question..."Hailey, is Santa Claus going to bring you some new clothes?" She briskly shakes her head NO! Just like any typical 4 year old, she is not as interested in the clothes as much as she is the toys. The following day I went home and wrote her a letter, the return envelope was from The North Pole. When Natalie read it to her, she listened attentively as her mother read these words...

Dear Hailey, Rudolph just whispered in my ear that he can hardly wait to lead the reindeer with my sleigh full of toys on our long trip from The North Pole to your house!I will be making my list and checking it twice, please continue to be a good girl. I know that you are 4 years old now and getting so big! The other day I looked into my crystal ball and discovered that you are going to have a little brother soon.This is great news, I just know that you will be the best big sister ever.I must go now to check on the elves in the workshop where they are making all the good boys and girls their favorite toys. I think I saw them making a new doll house for you! We will be loading the sleigh soon and heading your way.Ho, Ho, Ho, Merry Christmas,Love,Santa ClausHailey's face lit up like a Christmas Tree!

Hailey with Impact Dance Company

2011-12-18T18:42:00.001-08:00

A while back I wrote a post called "A Dance for Hailey" Hailey's mom Natalie has a best friend who has a dance company called Impact Dance Company, it is a fairly new company but the dream to do this choreography has been in the making for almost 5 years now. Ever since Hailey was born with Cerebral Palsy, Meghan McCaffrey dreamed about doing a dance piece that would help others to understand and raise awareness for Cerebral Palsy and to celebrate Hailey and all that she has to offer. Well, today we had the opportunity to meet the dancers and the dancers had the opportunity to meet their inspiration (Hailey) The had the opportunity to observe Hailey's movements, and the way that she crawls,smiles,sits acts, and laughs. The next two videos are just so exciting to me, as I watch Hailey act out and perform with the dancers without any prompts from us, she was totally comfortable with what she was doing and even commanded the stage. One of Hailey's dancers summed up our morning by saying " We danced, we talked, we laughed, we learned and we cried" All of these emotions were present and I can't figure out who learned more. Us, The Dancers or Hailey. But I do know that it was one of the most positive experiences for everyone involved, and we can't wait to do it again.I don't quite know all the details at this point, but Meghan tells me she plans on doing this piece in a theatre, it will start out with some information about C.P., Possibly a video chronicalling Hailey's journey this far, and the finale will be a Rockin performance by her dance company that will captures the true spirit of Hailey. This is going to be a lot of hard work over the next few months, but I know it will be worth the wait! Thank you Meghan...head on over to Impact Dance Company become a fan and you can track the progress of this lovely and heartfelt performance for Hailey

Wheelchair Acceptance

2011-12-14T18:01:00.000-08:00

Well, yesterday was an extremely emotional day for our family. Though some of us handled the news better than others. It wasn’t a total surprise when Natalie called me to let me know the news. Hailey’s PT recommended that Natalie contact children’s hospital about getting her a wheelchair. There has been talk about this in the past, so I don’t know why it hit me so hard, but it did. Like a ton of bricks. I was at work and I just couldn’t wrap my head around it, I couldn’t get myself together and I felt awful when my waves of emotion took the place of getting my job done, but I couldn’t concentrate, I just wanted to go home and go to bed, put the covers over my head and wake up in the morning and discover it was all a bad dream. I felt compelled to drive over to Natalie (because I know she was feeling it even more than me) and hug her and let her know that everything was going to be o.k. Little did I know that she was already headed over to my house with Hailey. She said she was in the neighborhood, but I think that subliminally, she wanted to be with people who love Hailey. She knows that she can always count on us for support. We have all been through so much together as a family. I guess I kind of secretly hoped that Hailey would get to a point where she would be able to walk with assistance, and that one day the only thing that she would need would be help from a canine assistant. So to here from a professional that this is not the case, it just knocked the wind out of me. Now that I have digested and regurgitated the news, i’m o.k. with it. Why wouldn’t I be? As my husband says “Hailey is still the same beautiful girl today, as she was yesterday and will be the same beautiful girl tomorrow” I know this is true. So, as I usually do when I hear new developments about Hailey. I get on the internet and I talk to my blogger friends, the people who understand first hand about what is going on in our lives, because it is also going on in theirs.(special thanks to Cary from about the small stuff) I have to constantly remind myself to stay focused on the positive and not let these barriers swallow me up, and to remember that wheelchairs are just a good way of getting around if a person has trouble walking. I also know that there are others out there who do not have the mobility to use a wheelchair and I should be grateful that Hailey is a candidate for one. Just because Hailey will be using a wheelchair does not mean that we are giving up hope, that one day Hailey will walk. We will continue to challenge her to reach her own personal potential, whatever that may be.

There are just so many unanswered questions: I wonder if Hailey will use a manual wheelchair, or if she would be better suited with a power wheelchair? Will her motor limitations allow her to maneuver the controls like a joystick, or will she have the strength to push herself along. She will have to get used to it in school, at home, travelling etc. It will be quite different. I wonder about how the wheelchair will transport? If we need some kind of conversion van, or lift. I wonder if we will eventually need a wheelchair ramp? I wonder how Hailey will adapt to using this new mode of transportation? My sense and my hope is that she will adapt fairly well. Her strength, determination and perseverance will be tested once again. As I have said so many times before, I believe in Hailey, she has led the way for our family on this uncertain path this far and she will continue to lead us down this bumpy road, only this time she will be doing it on wheels!

"I know a great store that has countless toys for kids with special needs"

2011-11-28T18:49:00.001-08:00

It's that time of year when i'm asked on a regular basis "what are you getting Hailey for Christmas", or "what can I get Hailey for Christmas" "can she play with regular toys" "How about puzzles, does she play games" "does she still like books" ????????? It's because of the many questions I've decided to write a general guide to help others who may have someone in their lives with motor issues know where to buy and understand what they may like and be able to use. First of all no toys please, just money for her well needed and very expensive hippotherapy lessons, just kidding!First off I would just like to say that Hailey likes alot of the same things that other 4 year old girls like. She loves to play with her dolls, just the other night, I was playing with her in her bedroom, she lined up all her doll babies, stuffed winnie the pooh, elmo, mickey mouse and dora. (Hailey doesn't walk so she spends alot of her time on the floor) With my help,she covered each of the dolls with little blankets (well really anything textile that she found on her bedroom floor, things such as, nightgowns, sweaters, coats, towels and the like). After her babies were all tucked in, she dragged her basket of goodies over and carefully but with much effort, gave each baby a piece of pretend fruit. This took over an hour but it was then I learned that Hailey was a nurturer, she made sure that each baby had their nourishment. There were bananas, tomatoes, cucumbers, apples, and oranges strewn about on the floor next to each of them. In this respect, I'd say Hailey is like other 4 year old girls. As far as other games and puzzles that Hailey likes, they really have to be well built, made of hard plastic or wood,otherwise, because her fine and gross motor issues, she will destroy them. An example of what not to get her would be...anything paper, books, cards, crayons, etc. Or anything that requires you to hold on to in a controlled fashion or with small pieces, these types of things will be destroyed in minutes she doesn't have the control or motor skills to turn the pages of a book without tearing them, or she would crumple a card when she makes an attempt to pick them up. Small pieces are difficult to grasp etc. These are all things that we work on but are extremely difficult for Hailey to achieve.Natalie and Tom believe the best place to buy Hailey's toys from is Lakeshore Learning, they have store locations from coast to coast as well as a full service web site. Here are a few examples of toys that Hailey or someone with motor issues would enjoy.

Though I believe Hailey is getting too old for these now, she enjoyed them last year and this is the type of durability I am talking about.

Giant Knob First Puzzle SetLittle hands have no problem piecing together these adorable puzzles! Each simple puzzle has 4 wooden pieces with giant, easy-grip knobs—so they’re a cinch for kids to grab and fit into place. And, with matching illustrations right on the puzzle boards, they couldn’t be better for beginners! Four 9" x 9" puzzles come in a handy wire rack.EE439 • $39.95

Hailey had something similar to this last year, the large plastic cookies are a bit easier to grasp, as we helped her put her cookie in a slot the jar counted for her, she loved it! Count-A-Cookie Number JarsTots fill up cookie jars with tasty-looking treats…and build counting skills—piece by piece! 5 wipe-clean vinyl jars are labeled with numbers 1-5 and come in graduated sizes to build number sense and reinforce one-to-one correspondence. Kids match the cookies to their color-coded jars, counting each one as they drop it in! Largest jar is 5"; with 15 cookies.$32.99It is difficult for Hailey to hold a ball, she doesn't own these, but I believe these are something that she could grasp.

Easy-Catch Playballs - Set of 4Put a fun new spin on active play games with our easy-to-catch playballs! The playground-tough neoprene balls have a flexible woven design that gives children endless ways to grab and throw them—ensuring frustration-free play for players of all sizes. 4 balls, each 7 1/2".CE255 • $39.95I think Hailey really responds to music, these are a good example for someone a bit younger than Hailey, I think it would be a great way to keep them moving their arms.

Easy-Grip Jingle Bells - Set of 8With our easy-to-play bells, little ones always enjoy no-fail music-making! Each one has an extra-chunky plastic handle to give children a sure grip, plus three securely attached metal bells that jingle with every shake. They even come in cute animal shapes that kids are sure to love! Set of 8 easy-grip bells; fish is 4 1/2" long.DB952 •$24.99Hailey loves to be read too, I wonder if she would like these

Differing Abilities Book SetKids learn why some children wear leg braces, how deaf children communicate, what it’s like to live with autism and more. 5 books, each 24 pages.AB358 • $29.50She doesn't have these, she doesn't play with figures yet, I guess I posted them because I love them and think that it is a great idea to have figurines of people of different abilities.

Lakeshore Block Play People with Differing AbilitiesIncrease the diversity of your block play community by introducing our figures with differing abilities! Made of extra-tough vinyl, the dolls represent a variety of ages, ethnicities and genders…all with super-realistic details and adaptive equipment—from leg braces to a hearing aid. Tallest is 5 1/2". Set of 6 figures shown.RR759 • $19.95

I like this because Hailey can reach it, but since it is so expensive, I just might buy the magnetic shapes and she can play with them on my refrigerator, she "W" sits lot ( I know, I know, we try to correct her, easier said than done) ans she can reach the lower part of the fridge.

Stand-Up Magnetic Design CenterOur magnetic design center is so big, children can stand side by side while they create colorful magnetic patterns! Double-sided center features two giant magnetic write & wipe surfaces, plus a sturdy base to store magnetic shapes. Wooden center is 21" x 32" tall. Easy assembly.LA583 • $79.95 Jumbo Magnetic Design Shapes40 giant wooden shapes include circles, squares, rectangles, triangles and more. Large squares are 4".LA585 • $29.95Hailey loves her pretend fruit, this wooden set is very durable

Fruit & Vegetable Cut-UpsOur fun fruits and veggies let kids cut, slice and dice like real gourmet chefs! 18 plastic play foods stick together with hook & loop fastener, so kids can safely “slice” into each one…then press them together and start again! With 2 safe “knives” and cutting board—all in a 10 3/4" basket.FV526 • $29.95Last year Hailey received this gigantic peg board game from her Uncle, she needs lot of assistance when she plays with this, but she enjoys "trying" to stick the peg in the board!

My First Pegboard SetAs tots fit chunky, baby-safe pegs into our fun-shaped pegboards, they explore color matching, develop eye/hand coordination & build muscle control! The big, 9" x 9" pegboards are made of soft, flexible foam…and the jumbo pegs are 2" wide, so they’re a cinch for small hands to grip. Includes 4 boards & 40 pegs.DD645 • $29.95These are just a few of the many awesome toys that Lakeshore Learning has to offer. Whether or not you have a child with special needs, This store has toys that are strong and safe. It is definitely worth checking out!

The most beautiful blessing

2011-11-25T18:55:00.001-08:00

Well, we all know how much I really enjoy spending time with Miss Hailey and Thanksgiving certainly is a perfect time to reflect on all of the blessings we have in our lives. I would be lying if I said that it didn’t bother me to watch her struggle as she attempted to eat the whipped cream off of the spatula from the pudding pie that she and Natalie made for dessert. Of course I wish that such a simple task could be accomplished without such difficulty, but for Hailey, it will always be difficult. But we will never forget that the mere fact that she is here today is truly a blessing.

Life certainly has a way of throwing you curve balls, but it is how you deal with them that defines your character. I am so proud of the way Tommy and Natalie have grown both in maturity and character since Hailey’s birth 4 years ago. As young parents they have learned more about life lessons, health issues and therapy sessions, than most of us will ever learn in a lifetime.They have learned more than they should ever have to know. When you have a child with a disability it is important to be able to look past the medical issues, past the limitations and all of the challenges that someone like Hailey faces every single day.They even have to look past the ignorance of others. Instead the importance lies in seeing the beautiful and courageous little girl that Hailey is. After all, that is what defines her anyway... not her disability.

For others it may seem a bit difficult to see their blessings, especially in this challenging economy, some have lost their jobs, others their car payments or the luxury of enjoying a night out to dinner. To my family our blessings are quite clear. Hailey is our blessing. We see things a lot more clear than in years past. We celebrate every achievement, no matter how small. Our priorities have shifted and our lives have completely changed, because when someone that you love has Cerebral Palsy, (or any disability) it’s as if the entire family has Cerebral Palsy, and you know what, we wouldn’t have it any other way, because we will never let Hailey go through this alone. We count her as our number one blessing, not only on Thanksgiving, but every single day.

Assistance dog helps Ohio boy with cerebral palsy | The Associated Press | Health | San Francisco Examiner

2011-11-25T05:01:00.000-08:00

I WOULD LOVE TO SEE THIS IN HAILEY"S FUTURE...Click on the link below to read

Assistance dog helps Ohio boy with cerebral palsy | The Associated Press | Health | San Francisco Examiner

Balloon Therapy!

2011-11-16T18:07:00.001-08:00

This is a fun way to get those arms moving. I have to remember to do this more often with Hailey! This video was taken last year.
I actually got the idea of playing with balloons while going to a physical therapy appointment with my mom, they were trying to get her to move her arms by throwing a balloon. I thought wow, what a fun game to play with Hailey. So I went and bought a half dozen of balloons and this was the result, so exciting! We all enjoyed ourselves that night. Thank you Natalie for reposting.

2011-11-14T17:18:00.001-08:00

Believe in your childs worth no matter what!

2011-11-07T12:31:00.000-08:00

Certain Proof: A Question of Worth from Ray Ellis on Vimeo.

I posted this poem that I wrote for Hailey awhile ago. But I am posting again as it relates to this video!
Hailey
I believe in you.
Your impetuous determination tells me
that you will never give up.
You have so much to give,
and have given so much already.
I believe that you will stand tall.
We are beside you, and will always be.
There is no rush, so take it slow, one step at a time.
We are ready when you are.

Have you ever thought for one minute that your child could have been misdiagnosed with Cerebral Palsy???

2011-11-04T13:39:00.000-07:00

The chances that Hailey has been misdiagnosed are slim to none, but if your child has been diagnosed with C.P. Then this video is worth watching!

Awareness, it really makes all the difference in a persons life.

2011-09-30T19:35:00.000-07:00

Nobody likes to be talked down to or treated like they are invisible, but it happens everyday
to people who have disabilities or use wheelchairs to get around. It is not typically done on purpose, but is often because of the lack of knowledge or lack of interaction with someone who has a disability. More often than not when you first meet a person who has an obvious disability, maybe they are in a wheelchair, or maybe they are blind or have vision impairments. You become a bit uncomfortable, you are not sure what to say. Sometimes pity, fear of the unknown, general awkwardness and a lack of understanding makes you shy away from being cordial.
One of the ways to get past the social awkwardness is to know how to act or what to do in an unfamiliar situation, so educating yourself and others about disability is very important. I think it should be started at a very young age. I wholeheartedly believe in inclusion.
Inclusion is part of a much larger picture than just placement in the regular class within school. It is being included in life and by using one’s abilities in day to day activities as a member of the community. Inclusion is being a part of what everyone else is, being welcomed and embraced as a member who belongs. Inclusion can occur in schools, churches, playgrounds, work and in recreation. It is my hope to see people like my beautiful granddaughter who lives with Cerebral Palsy be more accepted and understood by society. I think I speak for most people who are touched by someone with a disability, when we see things in stores, such as Barbie in a wheelchair, or the occasional book that explains to children that being a little different is o.k. that they are people who are accepted by others and they are people just like you, who have feelings just like you, and they have a purpose in life, just like you do. That is why I decided to design a couple of Christmas cards that show children enjoying themselves at Christmas time, opening gifts and helping to decorate the Christmas tree. It is my way of raising awareness and acceptance. If I can get these cards out for Christmas, people will send them across the miles to their family and loved ones embracing and accepting disabilities and soon, we will be spreading awareness all around the world!

(Inside Text..."Hope Your Holidays Are Special"

If you are interested in these cards, please contact harrold.janet@gmail.com
Orders are being taken through October, cards printed on November 1st and in your home by Thanksgiving.

A Dance for Hailey

2011-09-24T19:14:00.000-07:00

Recently a good friend of Natalie’s opened a dance studio Impact Dance Company Boston
Meghan and Natalie have been best friends for years. Ever since Hailey was born Meghan wanted to choreograph a dance and dedicate it to Hailey.
In June, Meghan had applied for a residency program, unfortunately she was denied. I thought I would post her good intentions anyway. As a way of thanking Meghan for her efforts and hoping that someone who reads this may be able to support such a beautiful effort.
IMPACT Dance company is a contemporary based dance company that strives for captivating audiences through emotion. The sole purpose of IMPACT is to initiate a change by bringing dance to the forefront and raising awareness. We want to raise awareness by magnifying what is not stereotypically accepted or touched upon as frequently as it should be. IMPACT Dance company wants to make a difference in our society by utilizing our art as a statement to educate and inspire.
What is your overall mission or dance philosophy?

Impact Dance company wants to truly make a difference by utilizing dance in every possible way we can. A few ideas the company has is to host motivational seminars and dance classes for elementary, middle and high school students, put on benefit performances, support local charities, and create pieces dedicated or inspired by certain topics, causes or diseases.
How would this program affect your company? What would this residency mean to you?
This program would give the company the opportunity to truly experience a life changing event personally, mentally and physically. This residency will give us the opportunity to fully commit and focus on the creation of a new piece. Personally this residency means I will finally have the freedom to create a piece that I have been wanting to create for the past five years. This piece is very personal and I did not want to commit to it unless I knew I could focus on it whole heartily and could train my dancers mentally and emotionally for the subject.
This piece has been a dream of mine since the birth of one of my closest friend’s daughter, Hailey. Due to complications at birth, Hailey was diagnosed with Cerebral Palsy. There are many emotions surrounding this topic from the outside point of view, but I want to travel deeper and showcase the story of Hailey, her family, and her parents. I want to live the emotional roller coaster their journey has brought them to, celebrate their triumphs, their failures, and their happiness all through what I know best, dance. Their story is truly inspirational and it needs to be told.
How long of a Residency would you need and why?
We would need four weeks to accomplish the tasks I am setting up with this piece. For the first couple of rehearsals I would invite Hailey and her family to come interact with the dancers. First, I would ask the parents to prepare what they would want to share about their journey. Explaining their day to day life, hospital visits, school trips and activities they do as a family. Secondly I would arrange an informative meeting where the dancers can ask in depth questions regarding emotions so they can find a way to connect while they begin movement with the piece. Lastly I want to have the opportunity to watch Hailey. By teaching her dance moves, and observing her and her mechanisms we would be using the way she crawls, sits, smiles, laughs, and plays to inspire movement we would incorporate into the piece.
How would you utilize the studio space?
The studio space sole purpose would be to create and establish the choreography inspired by Hailey. The first week will be dedicated to the process of meeting the family. The second week of rehearsal we will incorporate movement from Hailey, finding a medium between what our bodies can accomplish while showcasing what we learned or were inspired by. The last two weeks would be used to finalize choreography and finish the piece.
Do you have access to discounted rehearsal space elsewhere?
Currently we do have access to discounted rehearsal space. However the only setback is that the space is very small. I would be willing to utilize the space to save money, but I know myself and my dancers would love to be able to use a bigger space for the last week of the residency.
How do you plan to participate in the Community event? How does this connect with your company mission or experience?
For the community event Impact would like to host a movement workshop for children with Cerebral Palsy and other forms of debilitating sicknesses followed by a performance of the piece created with the residency. The community event would convey
Impact Dance company’s mission statement perfectly. This would give us an opportunity to reach out and connect to the Cerebral Palsy community, raise awareness about Cerebral Palsy and perform with the intent to inspire and show support to the families of not just Cerebral Palsy children but also the families that have children with other debilitating sicknesses such as Multiple Sclerosis and cancer.
Meghan thank you from the bottom of my heart for being passionate about Hailey’s Dance. Good luck with your dance company and to all of your future endeavers.

My Artwork/ Aunt Sadies Candles/ The Jimmy Fund

2011-09-21T19:03:00.000-07:00

You have heard me say previously that one of my paintings had been chosen to be on the outside of an Aunt Sadies candle this Holiday Season. Well they are finally available for $20.00 plus shipping at The Jimmy Fund Store 100% of the proceeds go to raising money for patient care and cancer research. It was my honor to donate this image to such a good cause. It gives me pleasure in knowing that I can help out, even if it is in the smallest way. I have a very close friend who is currently battling cancer, it is an extremely difficult time in her life and the lives of her family, as they battle alongside with her, feeling helpless, but never, ever giving up hope that she will beat this awful disease. She is a very strong and determined woman with a heart of gold.There is not a question in my mind, I know she will beat it and as Christopher Reeve's said "Once you chose hope, anything is possible"

I wish this was a "scratch and sniff" then you could tell that scent of my candle is a brilliant and fitting Cranberry-Orange! I can just smell it now.

I've also been told that they will be carrying them in The Paper Store, but i'm not sure when.

Some Facts from the Jimmy Fund's Website:
Beating Cancer
Cancer doesn't discriminate. It can strike anyone and it affects us all. Man. Woman. Child. People aged 8 days to 80 years. Every day, 3,000 Americans are diagnosed with the disease. But with your help, the Jimmy Fund is beating cancer.
How Your Support Helps
When you purchase holiday cards, e-packs, candles, and ornaments from Dana-Farber and the Jimmy Fund, you supply critical funds that enable the work of the brightest minds in science and the most talented clinicians to care for patients confronting cancer.
Your financial contributions have helped Dana-Farber rank as the number one cancer hospital in New England by U.S.News & World Report for 11 straight years. In 2010, Dana-Farber logged 142,169 adult and pediatric patient visits and infusions. Dana-Farber also offered 689 clinical trials that opened doors to new treatments for adult and pediatric patients.
Thanks to your support, Dana-Farber continues to make strides in the fight against cancer. In 2010, we:
Reached a milestone in cancer treatment with the FDA approval of Provenge®, a prostate cancer vaccine clinically tested at Dana-Farber and the first clinically proven therapeutic cancer vaccine
Opened the new Yawkey Center for Cancer Care, which will enable Dana-Farber to provide its trademark compassionate care to an increasing volume of patients and will connect our research and clinical programs more seamlessly than ever before
Expanded our efforts to make Dana-Farber's world-class patient care more accessible to patients living outside of Boston by partnering with South Shore Hospital, bringing our services closer to the 725,000 residents of southeastern Massachusetts
Received a 4-star rating—the highest ranking—from Charity Navigator, America's largest independent evaluator of non-profit organizations, for the ninth consecutive year for our ongoing commitment to maintaining a low cost-of-funds raised and being fiscally prudent
Every dollar raised through Holiday Greetings contributes to the financial resources necessary to accelerate Dana-Farber's pace of discovery, speed the application of scientific knowledge to help save lives, and expand the Institute's ability to provide its signature 50-50 balance between research and patient care.

"A Better Person"

2011-09-15T17:40:00.000-07:00

A Better Person

If you close your eyes you'll never see,
just how much she means to me.

All I ask from this day on, is to stand beside her and cheer her on.

She'll bring you places that you've never been,
and show you love from deep within.

She'll melt your heart a little more each day,
until it seems her disability has faded away.

But it's still there, i'll tell no lies.
It sometimes appears, to be in disguise.

You no longer see through rose colored glasses.
As this vision you once had, slowly passes.

The child you once thought of as frail and weak,
instead has made you implore defeat.

Her health sometimes may seem uncertain.
Yet through it all, she has made you a better person.

© Copyright 2011 by Janet Harrold

Hailey's first Hippotherapy session!

2011-09-11T18:46:00.000-07:00

So today was Hailey’s first hippotherapy lesson! We had been slightly anxious about how she was going to react. If Hailey doesn’t like something or doesn’t want to do it, her scream can be quite piercing. We really wanted her first lesson to be a good experience. We had our first visit to the stables earlier this spring, Hailey seemed to love the horses, but of course seeing them and riding them are two totally different experiences. Natalie had also been preparing her all week by showing her videos and pictures of children riding horses. I think the combination of the two really helped because Hailey did awesome!

A lot of my family and friends still don’t quite understand what hippotherapy is, so I took this off of The Bridge Centers web site. I hope it helps.
After you learn more about hippotherapy, head on over to read the article I wrote for Windrush Farm about how horses help with other disabilities as well.

About Hippotherapy
What is hippotherapy?
Hippotherapy is a physical, occupational and speech therapy treatment strategy that utilizes equine movement. The word “hippotherapy” literally means “treatment with the help of the horse” from the Greek word “hippos” meaning horse. Specially trained physical and occupational therapists use this treatment for individuals with movement dysfunction as part of an integrated treatment program to achieve functional outcomes.
In a controlled hippotherapy environment, the horse influences the rider rather than the rider controlling the horse. The rider is positioned on the horse and actively responds to his movement. The therapist directs the movement of the horse, analyzes the rider’s responses, and adjusts the treatment and horse’s movement accordingly. Specific riding skills are not taught (as in other therapeutic horseback riding programs), but rather a foundation is established to improve neurological function and sensory processing. This foundation can be generalized to a wide range of daily activities.
The unique nature of hippotherapy allows the rider to engage in activities on the horse that are enjoyable and challenging.
Why the horse?
A horse's walk and gait provides movement (or “sensory input”) that is variable, rhythmic, and repetitive. The resulting responses from the rider are similar to human movement patterns of the pelvis while walking. The therapist can observe and grade the degree of sensory input to the rider, and then utilize this movement in combination with other treatment strategies to achieve desired results. Riders respond enthusiastically to this enjoyable experience in a natural setting.
What are the benefits of hippotherapy?
Impairments that may be modified with hippotherapy include:
• Abnormal tone
• Impaired balance responses
• Impaired coordination
• Impaired communication
• Impaired sensorimotor function
• Postural asymmetry
• Poor postural control
• Decreased mobility
• Limbic system function related to arousal, motivation, and attention
Functional limitations that may be improved with hippotherapy:
• Gross motor skills such as sitting, standing, walking
• Speech and language abilities
• Behavioral and cognitive abilities
Who performs hippotherapy?
Therapists who perform hippotherapy are actually physical, occupational or speech therapists. Hippotherapy is the treatment strategy used by these skilled practitioners to achieve functional outcomes.
Does the therapist work alone with the rider?
Therapists performing hippotherapy normally work with a horse handler. This individual is charge of the handling of the horse during the treatment session. The handler has received extra training in handling horses specifically for hippotherapy.
How is a hippotherapy session different from Therapeutic Riding?
Therapeutic Riding is a general overall term that has been used for many years to encompass the variety of equine activities in which people with disabilities participate. When a therapist specifically utilizes the movement of the horse as a treatment strategy to improve neuromuscular function it is referred to as "hippotherapy

"What I would tell you"

2011-09-02T03:54:00.000-07:00

I read this post on kidz The site that I write for regularly, it is a collaboration of Mother's and their beautiful children who have special needs. This is a long article, but it rings true almost word for word for so many families. I just had to re-post.
If you are a member of the special needs community-you won't be able to stop reading...if you are not a member of our community-you probably won't finish this article...shame on you for not wanting to face what other's go through each and everyday.

What I Would Tell You
by Julie Keon

I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to — they just didn’t unfold in the way we had imagined or planned.

I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day ~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.

I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.

I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.

If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honor your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.

I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.

I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates… even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.

I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.

I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.

I would tell you to seek out other mothers like yourself. This is, indeed, the road less traveled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.

I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.

I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.

I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.

I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.

I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.

I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people — the cashier at the grocery store or your insurance broker or even your hair stylist — will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.

I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.

I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.

I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.

But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.

I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.

© Copyright 2011 by Julie A. Keon. All rights reserved.

www.whatiwouldtellyou.com

Can your child be featured on this years Christmas cards?

2011-08-25T18:29:00.000-07:00

I don’t know about you, but It would do my heart good to see a Christmas card that features children/people with disabilities. It’s all about raising awareness and I do that every chance I get.
But how are we going to do that you might ask. Easy... i’ll paint it! Then, i’ll make my painting into a card and have them to your door by December 1st just in time for you to send them along to your family and friends for the Holiday Season.The only problem is, I’m having a bit of trouble picking the perfect image, so i’m looking to the special needs community to send me images via email. If you have an awesome image that you think will make the perfect Christmas card for our special needs families, send it to harrold.janet@gmail.com If I decide to use your image, I will send you the original painting, a 16x 20 this is typically a $500.-$700. value, all rights to the image will remain mine and can not be duplicated or reproduced. Images must fit the following criteria: Only 2 images per email, (if I choose your image, I may also need you to send me a 4x6 image by snail mail) I am looking for something that any special needs family can relate to, an example would be an image of your child sitting in a wheelchair facing the
Christmas tree, admiring all of the beautiful lights, not a full frontal view, it may be best if you can’t exactly tell the gender or maybe this individual is in a walker standing in the snow among siblings making a snowman and totally included in the days festivities. I’m not exactly sure, I only know it should be rather general, something we can all relate to. We really don’t have much time for this project so start pulling out your family images of years past. The image below is a perfect example of what I am looking for, it is whimsical and fun without revealing the identities of this family, an element of surprise awaits them. This image would make a nice image for a fall greeting card, help me find the best image for a very special Christmas card .One that you would be proud to send to all of your family and friends. Deadline for photo submissions will be September 9th so don’t hesitate, Christmas will be here before you know it.
Oh, and I will post some of my favorite images on my new facebook page Painting for Hailey, so be sure to head over there and like my page. I will definitely be considering your votes!

My children's book

2011-08-22T18:42:00.000-07:00

Finally the price of my book has been reduced!

A couple of years ago, I wrote a children’s book for Hailey. Hailey loved to read and I loved reading to her. I never dreamed it would actually get published, but to my surprise it did! I was thrilled and beaming with excitement. But, the publisher was asking a ridiculous amount of money for this soft cover children’s book. The retail price on this book was $24.95 totally out of my control and way above industry standard. My discouragement led to anger and dismay and because I signed a 7 year contract, there wasn’t a single thing I could do about it. The few stores I showed it to loved it, but also thought the price was not justified. I decided it wasn’t worth the effort to try and get it out there. As long as I had one copy for Hailey, I was happy. So I discontinued my promotional efforts. Today I found out that the price has been reduced to $12.95 Yay! Now that is more like it. I only hope they keep this more affordable price.

For those of you who have not seen my book, but may want a sneak peak. This is what is said on the back cover.
Not your typical alphabet book, this beautifully illustrated book is filled with oil paintings and fun rhyming facts. Specific to the Boston Public Gardens, children of all ages as well as adults, will have fun reading this book while learning about nature.

A page from the book...

“Weeping Willow, such a dramatic tree,
at the edge of the water is where it should be.
With it’s branches hung low,
if you just take a look,
you might find me below it
curled up with a book.”

For those of you who already have my book, you probably don’t realize that a few of the illustrations actually tell a hidden story about some of my family. For example,
A few fun facts I bet you didn’t realize:

the illustration on the first page “A is for artist” is actually supposed to be me, standing in the Public Gardens painting. I love flowers, I work as a florist and I love to paint. Majority of the illustrations are floral related, and Hailey loves to smell flowers too.

also...the reason I put “V is for violin that the wandering minstrels play” is because my son (Hailey’s dad) was a music major and is passionate about music.

and last but not least... The “M is for magnolia” page has a young man sitting on a park bench reading The Boston Globe. That is because my husband is a pressman for The Boston Globe.

For those of you who don’t know my family, you would never realize these connotations. For those of you who do, it is easy to miss these hidden treasures that depict what my family is all about.
Thank you for reading. If you would like to purchase this book while the cost is reasonable you can go here

Amanda and Luke

2011-08-21T16:47:00.000-07:00

I finished this painting awhile ago but have been unable to post it because it was a surprise gift for the bridal shower I attended over the weekend. I'm happy to finally post it, I just love the colors in this painting and also the subject, hope you enjoy viewing. Congratulations to Amanda and Luke! xoxo

Windrush Farm Horses Helping People

2011-08-08T13:26:00.000-07:00

I have recently had the honor of writing an article for Windrush Farm. Windrush Farm Therapeutic Equitation is a nonprofit horse farm specializing in teaching physically, emotionally, and learning disabled children and adults to ride and work with horses.

Beautiful things happen when children with autism and horses are brought together
In this magic-like union! “Horse Play” is a program designed specifically for children on the autism spectrum who range in ages from 5-12. This summers program was well received by all who attended. Listen to a few things the volunteers had to say “ Lila improved a lot on speaking to the horse and became more confident giving verbal commands. I saw her fine motor skills improve as she worked with buckles and latches and becoming more comfortable grooming her horse.”-Casey
“At the end of the program Jon could put all his grooming tools in order and groom Chief all on his own, he seemed very happy.”-Erin

Each child got their own horse/pony to care for. Because the horse has a natural way of calming the child’s sensory system, they often times help their language skills to emerge.
Here is what Taylor had to say...“Jeff got better at grooming and touching Guiness, on the last day he could even do it by himself. He became a lot more verbal as the week went on.”

The children were encouraged to explore, process and enjoy the sights, sounds and textures found on the farm. This type of horse play was an unmounted approach, while concentrating more on contextual factors and interaction between them and their gentle partners. Fun and games were also high on the list, along with arts and crafts.

The parents were just thrilled as a sense of camaraderie unraveled in the barn. One parent marveled as she exclaimed “Every morning I asked Jon “Do you want to go to school or Windrush?” Jon loves school but he always said Windrush. He really enjoys his time here.”-Mary

An assessment from Susan, our very own instructor was that huge progress was made from each of the children as they developed unconventional ways of accomplishing motor tasks. She reminds us that we are all more capable than we think. Each child left feeling more confident than they came.

Watching with amazement as your child builds a trusting and equal relationship with the horse is pure joy. We believe that a very important piece of the puzzle is found right here at Windrush Farm. We believe in your child and when their comfort and confidence level grows, they believe in themselves.

Windrush Farm is an exceptional Farm that helps so many families in need. They have created a website that supports folks with special needs and their families in Massachusetts. It is designed to educate and walk them through all the different activities and therapies that involve horses. It then connects them with a program near them that offers what they are looking for. For more information go to their
website http://horseshelpingpeoplema.com/
© Copyright 2011 by Janet Harrold

Painting of Natalie and Hailey!

2011-08-05T19:07:00.000-07:00

My new favorite painting. A beautiful Mom with her beautiful daughter.

I perhaps owe having become a painter to flowers. ~Claude Monet

I am a delicate flower...you are the sunshine that helps me grow -Janet Harrold

Appropriate words can be as simple as hello or good morning

2011-07-30T20:42:00.001-07:00

My previous post was a reminder of words that may be viewed as inappropriate to someone who has special needs. One of my loyal readers asked me to do a follow up and mention a few things that would be appropriate words to say. I always try to keep in mind that some people are a bit more sensitive than others, but in my opinion if we just remember these three things kindness, compassion and a welcoming smile, the rest will fall into place. I totally understand that it is difficult to know what to say or how to act around people of different abilities, but please try and overcome this. A very simple thing to say is... “Hello” or “good morning”. Just the same thing that you would say to anyone else. Hailey is considered non verbal, she is certainly not non-vocal. It is always appropriate to speak to her directly, even if her response is not one that you understand, that is o.k. she is in the room, lets include her. My mom loved Hailey so much, but had no idea how to talk with her initially (miss you mom :( When she was at the house, she would look at me and say “how’s Hailey” while Hailey was right beside me, I constantly said, she’s right there mom, ask her. Now, that didn’t make my mom a bad person, she just needed a little help in understanding how to talk to her and when she finally understood, she would ask to speak to her on the phone every time she called. I would assure my mother that Hailey was smiling in acknowledgement of hearing her voice, and that made us all happy.
The same principles that apply to typically developing children apply to children who have special needs -just at a different pace to match their learning abilities. It is o.k.and even welcomed to introduce your child to Hailey, or if you know us, ask to arrange a play date. Like other 4 year old girls Hailey loves to play, she enjoys other children, she loves dolls, and going in the swimming pool. She also has many things that she doesn’t like, she has good days and bad days. She has a beautiful smile that helps to define her character, her disability does not. ( But don’t let that smile fool ya) Her scream is probably louder and more demanding than anyone I know, her emotions can go from one extreme to the next at the drop of a dime. Her frustration level sometimes seams higher than the tallest mountain. Her personality is her own.
Hopefully this has helped you to interact with people who’s needs may be different than yours. I hope I opened your eyes, your mind and your heart. Hailey has certainly done that for me.

Just a little reminder:

2011-07-20T17:29:00.000-07:00

Sometimes words and actions can be hurtful. Being the grandmother of a beautiful little girl who just happens to have C.P. I am reminded everyday how words can be hurtful, more often than not these words are not meant to be offensive, or hurtful, it is simply the lack of understanding.
So I thought I would just subtly remind people to choose their words a bit more carefully. I can’t tell you how many times in a week, Hailey comes up in conversation (well, hundreds of times actually, after all I am a proud Grammy). Very often when I happen to see or hear from someone that I haven’t heard from in years or perhaps it just comes up in general conversation that Hailey has C.P. It never fails, the dreadful words slip off their tongue effortlessly and without much thought “...Oh, i’m so sorry, that must be so difficult, is this something that she will grow out of” or how about this one...she will never have a good quality of life. Though I am well aware that her quality of life will be compromised, the reminder is unnecessary and I chose to focus on challenging her everyday and promoting her independence. These are the kinds of things that will benefit her best. I’ve heard people say that people with C.P. and other disabilities are not normal, and I can’t help but wonder who decides what “normal” is.
As defined in Wikipedia... In behavior, normal refers to a lack of significant deviation from the average. The phrase "not normal" is often applied in a negative sense (asserting that someone or some situation is improper, sick, etc.) Well, Hailey is not improper at all. Actually her actions happen to be more proper than the people who ask these silly questions or make these remarks without thinking them through. Now, don’t get me wrong, I am not saying that I didn’t do or say similar things before Hailey was born. I had no idea what to say or how to act around others who had a disability. But now I know better, and I want you to know better too. Always be aware of the impact your words can have on others. Teach your children that it is o.k. to talk to people who have a disability, otherwise you are not only sending my child the wrong message, but your child as well. I think it is all in the education, it is the process by which society deliberately transmits its accumulated knowledge, skills and values from one generation to another, so please, pass it along.

Well...it's official

2011-07-11T18:49:00.000-07:00

Well...it's official

Hailey is going to be a big sister! Oh, I guess that would make me Grammy again.

Though I am convinced that this is ultimately the best decision my son and Natalie have made for their family, I am also glad it was not my decision to make.

When Hailey was born with Cerebral Palsy our family had to learn a whole different way of life. We found ourselves in unfamiliar territory, as if someone had knocked the wind out of us. We were shocked, we were scared we were in disbelief. We listened attentively at what the nurses and the team of specialists had to say. After performing an MRI the words I remembered most were "Hailey has severe brain damage" So because of this I have always been deeply divided on the pregnancy issue, that is why I am thankful it is not my decision to make. There are many times when things get tough, but should that be reason enough to not have another child? I think the answer to that question is no. Having a typically developing child will be healthy for their family as a whole. Tom and Natalie are loving and nurturing parents, I really have nothing to worry about. So why do I worry? I worry because adding a new life to the family will definitely effect the family in many ways, I worry that a new addition will get in the way of Haileys Conductive Education and other things that are important for Hailey.(Is that selfish of me)? I think the overall effect on Hailey will be a very positive one. I think about the fact that Hailey will probably need the help from a sibling later in life after her parents are gone, and I think what an important role a sibling will play in her life for many years between now and then.(is that wrong too)? Many children with siblings with special needs develop a maturity and tolerance that other children don't have. Because of this i'm sure he or she will be the best teacher, role model and advocate that Hailey can have.
The impact that Hailey will have on a new baby is also positive, I know she will just love having a baby sister or brother. She will teach her brother and/or sister how to be accepting of others, she will teach them how to smile because hers is so contagious, she will teach them patience, and most of all she will show them, just as she has shown us unconditional love. She is going to be the best big sister ever, I just know it! So i'm going to stop worrying now, embrace the moment and let myself be happy, because I know that Tom, Natalie and Hailey are happy and that is what matters most, so congratulations to my beautiful family! I love you all so much.

A tribute song for sweet Caylee Anthony

2011-07-10T06:26:00.000-07:00

A tribute song for sweet Caylee Anthony

2011-07-10T06:23:00.000-07:00

Greeting Cards

2011-07-02T15:21:00.001-07:00

Growing up in Boston was a constant inspiration for me.
I love to paint the brownstones in the South End (especially in the
spring time when the Dogwood are in bloom), street scenes, traffic
lights, umbrellas,and most of all people. I love the human figure and
all of it's quirky imperfections. I need life in my work in order for it to
seem real. Recently I have taken some of my favorite Boston inspired paintings and made them into note cards, an additional fundraising effort to help send Hailey to Michigan again for another session of Conductive Education. I am honored to say that The Dana Farber Cancer Institute chose one of the images above(ducklings with the red sox hat) to help raise money for Cancer research and for patient care!:) It feels good knowing that my artwork is being used for such a good and worthwhile cause, just like it is being used to benefit Hailey. I am also proud to say that Cedar Grove Gardens is the first place to allow me to sell my cards, I must say that I enjoyed it very much to see a customer come in today and purchased 8 of them, she said she absolutely loved them! I eventually hope to also get them in to touristy type stores around Boston, they would be great sellers in a shop/cart in fanueil hall, hospital gift shops, stationary stores. etc. I would love to get them in the chain stores like The Paper Store or Hallmark etc. O.k., maybe that is being a bit too ambitious but you never know what could happen if they fall into the right hands. Another way that I thought of to get them out there was to ask friends to help out by taking 10 boxes and selling them to their co-workers and friends. Is this asking too much? Does anyone out there have any better ideas or connections.

Did you know that I accept commissions and the majority of the paintings you see here on my blog are painted from photographs? Did you know that 100% of the proceeds go to sweet Hailey’s Conductive Education? Can you help to get her there in October, maybe you know somewhere or work somewhere that will carry my greeting cards too? If so you can leave a comment below or email me harrold.janet@gmail.com

Professional Photo's of your child with special needs

2011-06-27T19:26:00.000-07:00

Pictures, pictures, pictures...Well, we all know how beautiful Hailey is, and her mom Natalie takes tons and tons of pictures of her. Everyone who meets Hailey says the same thing. “Wow, she has the most amazing smile”. She really does, her smile is contagious and inspiring, and truthful, her smile is like the sunshine to me, very warm and sensational, it brightens my day.
As many parents of special needs children know, having your child’s picture taken professionally is not always an easy task. Many of our children experience sensory issues and have a hard time with bright lights, maybe they have a hard time sitting in one position or have difficulty with head control. Why not Have a photographer come to the house. They can capture your child in their natural setting. This might make your child feel more relaxed. Well, a couple of years ago I wanted to have Hailey’s picture taken by a professional photographer so I had Jess from Boston Baby Photos come to our house. She was very good with Hailey, at the time Hailey was not very good with strangers and I was nervous that she wouldn’t be too cooperative, Jess did a great job of keeping her distance from Hailey while getting some really, really good shots of Her. You can see them here We have a beautiful photo book that we will treasure for a life time. Not realizing that it had been 2 years since Hailey’s last photo shoot, I figured I better call Jess again. We agreed on doing trade. She would do another beautiful photo shoot of miss Hailey and I would do a painting for her. I had so much fun painting her family, they look like they are having a great walk through the park. So whimsical and fun! If you are interested in a photo shoot from Jess and live in the Boston area you can contact her here. The photographer who has taken the photo of Jess and her family is here.

Have you had trouble taking professional photo’s of your child? If so, do you have any tips on how to make your child comfortable during a photo shoot, maybe he/she has a favorite toy that may help them feel relaxed.

Love spelled out in Sign language

2011-06-24T15:08:00.000-07:00

Happy Father's Day

2011-06-19T08:40:00.000-07:00

Any father plays an important role in their child’s development. But the participation of the father to a special needs child is significant. In honor of Father’s Day I’d like to dedicate this post to my son Tommy. We have all heard the expression that anyone can be a father but it takes someone special to be a daddy. Well, Tommy is a very Special Daddy. Most of my readers know that Hailey was born 4 years ago with Cerebral Palsy. Tommy’s commitment and dedication to his family is exceptional. I’m not quite sure how he balances work, Dr’s appointments, home life, school involvement and still manages to fit in a 4 week trip to another state so that Hailey can get the education that she needs to live a more independent life. After coming back home from the trip to Michigan, Tommy came home and immediately started making some of the furniture that Hailey would need to help her with her core strength and help her on her way to living a more conductive lifestyle. I have always been proud of Tommy as a son and as a person. But today I am most proud of the Dad that he has become.

Although I would like to take all the credit in raising the fine young man that he has become, I can’t . My husband Tom has certainly had a hand (o.k. maybe both hands) in raising him. He was a great example and leader, a symbol of strength and courage and an extraordinary family man, he raised the bar high and mastered the art of being a great Dad. So, we have promoted him to Grampy. He would go to the end of the world and back for Hailey, All she has to do is smile and Grampy melts, right there on the spot. Happy Father’s Day to two very special Dad’s.

Conductive Education at The CLC

2011-06-05T14:13:00.000-07:00

The Conductive Learning Center
Grand Rapids Michigan

Well friends, I have to say...The four week experience that we had at the CLC just may have changed our lives and our outlook on life forever! The people who work there are so dedicated and obviously devoted to the children who attend the center. Whether they are there for one session or if they are attending full time, the approach is the same and the goal is to promote independence. It concentrates on developing and improving gross motor skills such as learning how to sit, walk and hold on to large objects, as well as fine motor skills including learning how to hold a pencil and eat and drink. Many parents are surprised to see their child sitting on the potty for the first time.
The curriculum strategies are tailored to the needs and abilities of each student, many who have Cerebral Palsy, Spina Bifida and other Motor Challenges.
The Conductors are committed to teaching students to reach beyond what is expected. They include music and singing into a structured routine making it a fun and positive experience, so they can learn the necessary skills needed to live a more independent, confident and fulfilling life.
You can only imagine our excitement when they had Hailey up on a walker (with assistance of course) after only being there 3 days! We wholeheartedly agree with the program and want to see Hailey attending on a more regular basis. I’m not sure if that means moving to Michigan, or making the trip there more frequent. It is not even out of the question to open up a Center here in Massachusetts. Either way I have to get more aggressive in my fundraising efforts. Unfortunately Conductive Education is not covered by insurance.
Friendships are different now than they used to be, quality instead of quantity. The entire community welcomed us with open arms. The parents, the staff, and the program director were all helpful and inspirational. We felt a complete sense of belonging and unity. Families who understand, people who have never met us before opened their home and their hearts to us. It is the bond we share as families of children with special needs. Parents who have walked the road before us paved the way. The same families who have learned not to waste their precious time listening to rude comments, awkward stares and low expectations from Doctors.
To all of the Parents and Educators at The Conductive Learning Center in Michigan. I have just one thing to say. BRAVO BRAVISSIMO!

The House That Love Built

2011-05-31T19:04:00.000-07:00

“The House that Love Built”

The Ronald McDonald House of Western Michigan
Their mission is to provide a “home away from home” for families of children and youth
seeking medical treatment.

As I write this post I am sitting on the front porch of The Ronald McDonald House. It’s a beautiful warm summer night in Michigan, I am feeling extremely relaxed and blessed that I am able to spend the last week of Hailey’s Conductive Education session with her. Thank you to everyone who helped to make this trip a reality. We are very proud of Hailey for all of the hard work that she is doing, and the progress she is making.

This is the house where families meet
to continue their lives, to eat and sleep.
to find their strengths and dry their tears,
to look forward with hope to better years.

Bricks and mortar seldom reflect the true nature of a house. For that transforms a house and makes it a true home, it is not the structure itself, but the love and resilience of the family who finds comfort within. The staff and volunteers here are some of the kindest people I have ever met. Their compassion is genuine and they are happy to help in any way they can. Donated goods, services and volunteer assistance help keep expenses down. The house is extremely organized. It sits on 5 beautiful acres with a walking path, picnic tables, children’s playhouses. It has 17 bedrooms, a kitchen that has four kitchenettes, it has a recreation room, laundry room, dining room indoor play room and great room. I’m sure I have missed a few things. While we were there the house had many different donations of food. The Olive Garden brought food in one night, Starbucks contributes regularly as well as random outside contributions. They offer a shuttle service that can take you to Drs. appointments, to the Conductive Learning Center etc. One of my favorite things is when they bring in therapy dogs!
Occasionally we have thought about a therapy dog for Hailey, but only time will tell if she will benefit from one. In the mean time we can still appreciate and enjoy them. When you stay at the RMDH you get free passes to some of the local Museums, fitness centers and even a zoo.
The suggested contribution is $25 dollars a night , but no one in need is ever turned away because of an inability to pay. If you are considering sending your child to the Conductive Learning Center or if you have to travel a long distance to take care of your child’s illness, I would highly recommend staying at a Ronald McDonald House, currently there are 297 houses in 30 Countries and Regions.

Hailey at Conductive Education

2011-05-28T17:22:00.000-07:00

I just can't wait to join Hailey, Natalie and Tommy tomorrow at the Conductive Learning Center in Grand Rapids Michigan. They have been there for the last 3 weeks and Hailey has just one more week left of her session. We are extremely pleased with the progress that Hailey has made in the short time she has been there. So pleased that they are actually considering moving to Michigan so that Hailey can continue to benefit from this program. Of course the one big obstacle is the expense of the school. It is rather expensive so I will continue my fundraising efforts as well as help them in any way I can. Boston is ranked one of the best if not THE best in the country for its hospitals and schools, it's a real shame we don't have a Conductive Education Center here. It would benefit so many people in the special needs community.

Hailey Practicing how to side step

2011-05-26T17:07:00.000-07:00

Another thing that Hailey has been working on at Conductive Education is how to side step. Notice her getting off of the bed all by herself, that is a fairly new accomplishment for her. I am so looking forward to joining them in Michigan this weekend to attend her last week! :)

Baby sign language

2011-05-24T15:23:00.000-07:00

I found this resource through Kidz, a great blog written by many talented woman (including myself) I am honored to be part of the kidz krew. Thank you Tara for sharing.
babysignlanguage Now, don't let the title fool you. Though this is helpful for many babies even babies who do not have special needs, it is a place for any person who would like to learn some basic sign language. So many people can benefit from learning sign language, just to list a few, sign language not only benefits individuals who are deaf or hard of hearing, but also those who are non verbal. This could mean people with Autism, people with Cerebral Palsy, sometimes after having a stroke, people find themselves with speech impairments, teachers can benefit from learning sign language as well. The list is really endless. You never really know when you are going to need sign language.

The website contains these free digital resources, among others:

Free printable Flash cards
Free printable wall chart
Free Tutorials
Free video dictionary
Facebook Community
Learning just a few signs can cut down on the level of frustration you may have when communication is compromised. You don't have to be an expert in sign language to benefit from using it.
So hurry on over and start learning baby sign language today! Why not equip your child with many different ways of communicating! Leave a comment about who you think may benefit from sign language. Thank you for reading!

Ben and Daniel

2011-05-23T16:11:00.000-07:00

You may all be familiar with these boys, I have painted them a few times before. Ben and Daniel are the cutest and most delightful boys to paint. When Cary (there mom) from about the small stuff uploaded her vacation pictures on facebook, I just new there would be more paintings of them in my future. What I didn’t know was that she would want them done before Fathers Day! Oh gosh ,could I actually get them done for her before I leave to meet Hailey and Natalie in Michigan for the last week of Conductive Education?!?! Of course I will, because I know how much Hailey is benefiting from CE, and so I begin again raising money for her next visit. Thank you Cary for contributing to this wonderful cause! And thank you for sharing my artwork with your family and friends!

Hailey turns 4

2011-05-20T03:33:00.000-07:00

Today is Hailey's 4th Birthday, I can't believe it! Where does the time go. She is not home to celebrate her birthday she is busy working hard at Conductive Education. I just wanted to recognize her beautiful day and wish her the best. The funny thing about my blog is that I have thousands of hits over the course of a month and very few comments. I often wonder if people don't know how to leave a comment or if they just don't want to or feel it necessary to comment.I know my stats show that people read from many locations around the world, this would be a great time to show the love by wishing Hailey A happy birthday while I get a glimpse of who my readers are, let me know which state you are reading from in your message. Thanks! And my wish today for Hailey is that her birthday bring her as much happiness as she brings to everyone who she has graced with her beautiful smile. Your comments are welcome!

Dogs Lovers

2011-05-16T04:24:00.001-07:00

Doggonit, please vote for Ty!
So...as many of you know I love to paint, I’ve recently entered a contest that Dog Art Today and Mutt Lynch Winery are hosting. It's theirAnnual Dog Art Wine Label Contest. All artists are invited to submit one dog-themed work of art. The winning entry will be made into a label for their limited edition wine (only 500 bottles) and the winner will win a case of wine with the artwork on the label. The theme is “Naughty” so I painted a picture of my brothers boxer dog Ty chewing through a door. The text I wrote to accompany the picture reads For a nice treat drink Muttitage… rich in “anti BOXER dents” The voting starts today, you can vote only once per computer I would love it if you took a minute to vote and share this on your facebook with your friends. The voting ends on Saturday May 21st so please don’t waste anytime.Thank you in advance!!!!!!!! Janet

Please click on the link below to cast your vote! I'm #26
http://dreamdogsart.typepad.com/art/

Conductive Education Day 3

2011-05-13T17:37:00.000-07:00

If you want to see determination just watch our Baby Girl Go!
Keep The Faith Baby, Keep on Moving

So wish I knew how to add music to this I think Myley Cirus (The climb would be so powerful to this video)! "Ain't about how fast I get there ain't about what's waiting on the other side, it's the climb".

Hailey at Conductive Education!

2011-05-12T03:20:00.000-07:00

This is only Hailey's 2nd day and she is doing soooo good at The Conductive Learning Center! Natalie gives me daily updates and pictures. Here is a video of her marching with both knees while sitting down. It definitely brought tears of joy to grammys eyes. I can't believe that she is finally there, we have wanted this for Hailey for a couple of years now and for all of you who have helped to make this possible, through donation, love and time. Thank you! xoxo

Hailey is my Hero

2011-05-06T13:02:00.000-07:00

What would you do if you had a medical emergency and your special needs child or grandchild is in your care? I definitely hemmed and hawwed over writing this post. I tend to be a more quiet person
and like to keep things to myself when I get sick. I really didn’t want to announce it over the internet that I had, well, lets call it an episode. But the fact remains that an emergency can occur when you are alone with your child who is non verbal or unable to let someone else know that you are in distress? Hailey is my hero.

While I was looking forward to having a well needed quality Sunday spent with my beautiful granddaughter, things went terribly awry. We were shopping at our local B.J.s when all of a sudden I had an overwhelming feeling take over me. The first thing I thought of in the few seconds I had before I went down for the count was where can I go in the store that Hailey will be safe. I didn’t have time to explain what was happening to a store clerk nor did I have time to explain Hailey had a disability etc. I couldn’t even muster up the strength to get my phone out of my bag. I headed for the ladies room, I thought if I can get to a confined space and call 911 or my husband I can tell them exactly where I am and Hailey won’t be in the carriage or able to escape. (she doesn’t walk but she can scoot all around the floor) As I was pulling my phone from my pocketbook my girlfriend was calling in, I had enough breath in me to say I am at B.J.s very sick in the bathroom and Hailey is with me. Brenda was coming from across town and I thought it would be quicker to call my husband who was less than 10 minutes away. I needed him to get here so that he could take Hailey. Moments after that phone call, I could hear 8 woman coming and going in the stalls next to me (I tried to call for help, but my voice wouldn’t come). I couldn’t bang anything to get the attention of others, I was loosing consciousness rapidly. I am typically a very strong and healthy individual but something happened to my nervous and circulatory system that caused my blood pressure to drop critically low 70 over 50 and my heart rate and pulse plummeted also. Anyway to spare you all of the gory details, Hailey began to crawl away and escape underneath the door, I got down on the floor and said “you get back here and stay with grammy” she crawled over to me and stayed with me. I wanted to be able to touch Hailey and reassure her that grammy would be alright. Laying down immediately brought the blood back to my brain and I could feel myself coming back. That is what saved my life. Hailey stayed right with me. Finally a woman saw me on the floor in the handicap stall and said “are you alright” I said “no, i’m very sick, I have my granddaughter with me, she is non verbal and she has Cerebral Palsy, she cannot walk, I need her to stay with me until my husband comes but you need to call an ambulance ” Unfortunately the roads had been blocked because of a Parade and 45 minutes passed before my husband and best friend arrived to take Hailey. The ambulance got through but I couldn’t leave Hailey until I knew she was safe with a family member. Hailey was so brave and she stayed with me on the floor for at least an hour. I believed she saved life. If I had been at home when this occurred chances are I would never had gotten on the floor. Looking back I may have been able to do things a bit differently but when you have a medical emergency there is not much time to think. I wrote this because I know a lot of parents are home alone with children who have disabilities, we never expect that something will happen to us, but if an emergency occurs, what precautions do you have in place to keep your child safe?

Hippotherapy

2011-04-20T16:36:00.001-07:00

I am just so excited I think I am going to burst. This is going to be a great year for Hailey! Lots of alternative therapy happening for her. Things that we believe she will benefit from. I’ve spoken about Conductive Education in great lengths, through conductors, other moms, and shown videos. I think you all understand it better now. In addition to attending Conductive Education in May, Hailey will also be starting hippotherapy when we get back from Michigan. The first time I read about hippotherapy was a couple of years ago while vacationing in Florida. I read about a stable in Ocala that offered hippotherapy to children with Cerebral Palsy, the article explained how being on top of a horse could help build core strength. When we got home from vacation we immediately started looking into the centers in our state, Hailey was too young then, but we believe she is ready now. We recently learned that there is a center about 45 minutes away from us!!!!! Sunday we went to visit the center to get more get more familiar with hippotherapy and also to see how Hailey would react. I think the photos say it all...Hailey loved it. We placed her on top of a pony and she wasn’t scared at all (she’s a little daredevil anyway). In fact when I put her on the ground, she tried to crawl right under the fence into the horses stable. I think she is ready for sure.
This is what we learned about hippotherapy:

Hippotherapy is a physical, occupational and speech therapy treatment strategy that utilizes equine movement. The word “hippotherapy” literally means “treatment with the help of the horse” from the Greek word “hippos” meaning horse. Specially trained physical and occupational therapists use this treatment for individuals with movement dysfunction as part of an integrated treatment program to achieve functional outcomes.
In a controlled hippotherapy environment, the horse influences the rider rather than the rider controlling the horse. The rider is positioned on the horse and actively responds to his movement. The therapist directs the movement of the horse, analyzes the rider’s responses, and adjusts the treatment and horse’s movement accordingly. Specific riding skills are not taught (as in other therapeutic horseback riding programs), but rather a foundation is established to improve neurological function and sensory processing. This foundation can be generalized to a wide range of daily activities.
The unique nature of hippotherapy allows the rider to engage in activities on the horse that are enjoyable and challenging.
Why the horse?
A horse's walk and gait provides movement (or “sensory input”) that is variable, rhythmic, and repetitive. The resulting responses from the rider are similar to human movement patterns of the pelvis while walking. The therapist can observe and grade the degree of sensory input to the rider, and then utilize this movement in combination with other treatment strategies to achieve desired results. Riders respond enthusiastically to this enjoyable experience in a natural setting.
What are the benefits of hippotherapy?
Occupational and Physical Therapists use engaging horseback activities to treat children as young as 2 years of age and throughout their teenage years. This increasingly popular method helps clients meet their individual clinical goals including: improved gait, mobility, strength, and balance; sensory processing and modulation skills; & endurance and independence. Therapists also target communication and behavioral skills through these therapies.
Functional limitations that may be improved with hippotherapy:
• Gross motor skills such as sitting, standing, walking
• Speech and language abilities
• Behavioral and cognitive abilities
Who performs hippotherapy?
Therapists who perform hippotherapy are actually physical, occupational or speech therapists. Hippotherapy is the treatment strategy used by these skilled practitioners to achieve functional outcomes.
Does the therapist work alone with the rider?
Therapists performing hippotherapy normally work with a horse handler. This individual is charge of the handling of the horse during the treatment session. The handler has received extra training in handling horses specifically for hippotherapy.

Keep them coming

2011-04-18T18:28:00.001-07:00

Well, it has certainly been my pleasure to paint these two paintings. I just love painting precious moments of children and these two images are priceless. What a great Mother's Day and Father's Day gift these would make.

A great Conductive Education Video must see

2011-04-15T03:27:00.001-07:00

For those who have been asking, this is a must see video...this is a great depiction of what we will be doing in Michigan with Hailey! Can't wait to give her this opportunity and thank you to all who have helped to make it happen, whether it was fundraising efforts, purchasing a painting or general support etc. This is the kind of thing your efforts have helped with.

creating art with your eyes

2011-04-14T16:32:00.000-07:00

The Eyewriter from Evan Roth on Vimeo.

Retrieved from ams vans blog.

An international team merged together in an collaborative effort to create a new way for artists to create art using only their eyes, and they succeeded by creating a very low cost solution that you can build yourself for less than $50 with free software and detailed video instructions.

The invention has been a lifesaver for artist Tony Quan, aka Tempt One, a legendary LA graffity writer, publisher and activist. He is now creating art again, something he has not been able to do ever since ALS left him completely paralyzed except for his eye movement.

“Art is a tool of empowerment and social change, and I consider myself blessed to be able to create and use my work to promote health reform, bring awareness about ALS and help others.”

The team has taken a projection device out into downtown Los angeles to display Quan’s art live as he drew it in his hospital room. The designs were visible from the freeway as drivers watched the creations take place.

The next step for this international dream team is to connect ALS patients together online to create eye art as well as build a network of software developers, hardware hackers, and urban projection artists.

This project was made possible by Members of Free Art and Technology (FAT), OpenFrameworks, the Graffiti Research Lab, the Ebeling Group communities, the Not Impossible Foundation, with additional support from Parsons Commucations Design & Technology.
Are you interested in creating an Eyewriter for someone? Learn how to build one yourself with the detailed 10 step process here.

learn more about the Eyewriter for disabled and paralyzed artists from their official website here.

Sedona

2011-04-13T04:06:00.001-07:00

WHAT A VIEW! I had lot's of fun painting this image from a fellow blogger and therapist, she supports my cause and has a great blog jam packed with occupational therapy tips, please visit Dr. Anne Zachry's blog and you will be glad you did!

To blog or not to blog...that is the question

2011-04-11T07:02:00.000-07:00

Some may think this is good information while others may wonder why have I posted this video, now predators know how to locate you. Well, i'm from the school of "knowledge is power" I believe that the people who are sick enough to be able to do such a thing already have the knowledge and those of us who are not need the heads up.

I have always been leery about writing online about Hailey and posting photos etc. It initially drove me crazy when pictures of Hailey were on Facebook. Because I don't have the education about all of the technical jargon, it frightens me,I am paranoid. To justify my blogging and sharing Hailey's experience with the world I will try and put it into context. I believe in this big bad world we live in we have to be extremely careful with our children whether it be on the internet or in our schools, at the park, in the mall at the grocery store and in our own homes for that matter. I believe the "real world" is just as harmful as cyberspace. Child molesters and predators are lurking everywhere. More often than not it is someone who we trust. A creepy uncle, step dad, teacher, priest care taker, the list is endless. We worry about our children constantly, and we should. Bottom line is that I don't completely trust anyone ever. Keep your eyes open, use your head, listen to your child and if your child is non verbal be even more conscious of her surroundings and always, always listen to your gut instincts.
So that being said, I would like to share the many benefits that I have found from blogging. First of all, I always, always question my own decisions. I question writing this blog in general, I wonder if one day Hailey will be able to read this blog and think to herself "why would my Grammy put my story out there for the world to read" well, besides thinking that Hailey is just an amazing little girl or maybe it is because I can't help but see the sunshine in her beautiful smile. I truly believe that this blog and others like it benefit many people out there with disabilities, it connects parents who are being judged everyday by people who have no idea what they are going through, and it also raises awareness for people who have no idea at all about others who are living with special needs.
By blogging I have discovered resources for Hailey that we would not have discovered had it not been for the internet. Conductive Education is the perfect example, this is an alternative program that we believe will totally help Hailey on her road to independence. It is a program that we would not have heard about from her amazing doctors, therapists or teachers. Reading other blogs about other children in similar situations has educated me and inspired me. In return I am able to do the same for other families. I especially like reading about others who are older than Hailey and it helps to hear them say that despite the many challenges that you will face, despite how difficult things may become, you are not alone and things are going to be o.k.
If and when Hailey is able to read this one day, I hope she will realize that through her journey, she was able to help others along the way, both with her struggles and her triumphs, and that Grammy did this out of pure love for her.

If you are a special needs parent and care to share how blogging has helped you and your family, please share your comments, I would love to hear.

ipad headrest

2011-04-04T17:21:00.000-07:00

Well, it’s almost here...what is almost here you ask? May is almost here, May is when Hailey will be traveling to Michigan to go to her 4 week session of Conductive Education! I’m very excited, I know this will be good for Hailey it will challenge her and it will teach us how to help her to be a bit more independent. This is great right??? Then why am I so nervous? I think part of my anxiety is the long road trip. Because of the amount of equipment Hailey will need, and the expense of renting a car for 4 weeks etc.etc. The kids decided it would be better if they drive instead of fly. My son Tom thinks I am crazy for worrying about this kind of thing, but that’s what I do. I worry about things that others don’t, it is sometimes a blessing and most times a curse. It will take a total of about 14-15 hours to get there from here. I know, I know it isn’t that bad.
The plan is to take 2 days to get there stopping in between, maybe for a little sight seeing excursion or maybe just to get a good night sleep before continuing on the road.
The pictures above show the ipad headrest that Tom and Natalie purchased for the trip. What a great idea to pass the time for Hailey! She loves to play games on the ipad and this will allow her to watch movies on Netflix and listen to her music as well. This nifty accessory is designed to instantly turn her ipad into a rear-seat in car entertainment system. I like to think of it as a portable drive-in movie for Hailey. O.k, o.k. I am already getting less anxious thinking about what fun she will have with this. I bet the time will just fly by and they will be in Michigan before I even have time to worry.
Grampy and I plan on flying down to meet them there the last week and driving back with them. It will be an educational experience for us all. I bet the education doesn’t end when CE comes to a close in Michigan but continues on that long car ride home as Hailey teaches Grammy how to use the ipad.
For my special needs families who are thinking this is a must have for their car, this headrest is put out by siig and only costs about $30.00

Blue Rose

2011-03-30T18:29:00.000-07:00

I remember seeing this written somewhere in the past but I can't remember where I read it. If I did I would give this person proper credit. If anyone knows the author, please add the name in the comment box. Enjoy!

Blue Rose

Having four visiting family members, the wife was very busy, so I
offered to go to the store for her to get some needed items, which included
light bulbs, paper towels, trash bags, detergent, and Clorox. So off I
went.

I scurried around the store, gathered up my goodies, and headed for
the checkout counter, only to be blocked in the narrow aisle by a young man
who appeared to be about sixteen-years-old. I wasn't in a hurry, so I
patiently waited for the boy to realize that I was there. This was when he
waved his hands excitedly in the air and declared in a loud voice, "Mommy,
I'm over here."

It was obvious now, he was mentally challenged, and also startled as
he turned and saw me standing so close to him, waiting to squeeze by. His
eyes widened and surprise exploded on his face as I said, "Hey Buddy, what's
your name?"

"My name is Denny and I'm shopping with my mother," he responded
proudly. "Wow," I said, "that's a cool name; I wish my name was Denny, but
my name is Steve."

"Steve, like Stevarino?" he asked.

"Yes," I answered. "How old are you Denny?"

"How old am I now, Mommy?" he asked his mother as she slowly came over
from the next aisle.. "You're fifteen-years-old Denny; now be a good boy
and let the man pass by."

I acknowledged her and continued to talk to Denny for several more
minutes about summer, bicycles, and school. I watched his brown eyes dance
with excitement because he was the center of someone's attention. He then
abruptly turned and headed toward the toy section.

Denny's mom had a puzzled look on her face and thanked me for taking
the time to talk with her son. She told me that most people wouldn't even
look at him, much less talk to him. I told her that it was my pleasure and
then I said something I have no idea where it came from, other than by the
prompting of the Holy Spirit.

I told her that there are plenty of red, yellow, and pink roses in
God's Garden; however, "Blue Roses" are very rare and should be appreciated
for their beauty and distinctiveness. You see, Denny is a Blue Rose and if
someone doesn't stop and smell that rose with their heart and touch that
rose with their kindness, then they've missed a blessing from God.

She was silent for a second, then with a tear in her eye she asked,
"Who are you?"

Without thinking I said, "Oh, I'm probably just a dandelion but I sure
love living in God's garden."

She reached out, squeezed my hand, and said, "God bless you!" and then
I had tears in my eyes.

May I suggest that the next time you see a BLUE ROSE, don't turn your
head and walk off. Take the time to smile and say Hello. Why? Because, by
the grace of GOD, this mother or father could be you. This could be your
child, grandchild, niece, or nephew. What a difference a moment can mean to
that person or their family.

From an old dandelion!

Live simply. Love generously. Care deeply. Speak kindly. Leave the
rest to God.

"People will forget what you said, People will forget what you did,
but people will never forget how you made them feel."

American Sign Language

2011-03-27T20:33:00.000-07:00

Sign language...hmmm...another way of communicating for many people, not only for people who are hearing impaired but for many children/people who are non verbal, some people who have autism use American Sign Language, others who have C.P. have found it helpful and so many others.
Hailey uses her Dynavox V at school to help her communicate and they are also teaching her a bit of sign language as well. Last year my husband and I decided to have someone come to the house once a week to teach us sign language so that we would be could keep up with Hailey. This year for Christmas we got our family an IPAD so that Hailey could use the proloquo2go app. Some people in the special needs world are referring to this app as “a miracle device.” I think it is important for us to have many different ways of communicating with Hailey if not with words.
Because we did not actually use the sign language steadily and regularly, I have already forgotten some of my signs. :( A couple of months ago my local library had the Program Director of the ASL Academy come in and teach some basic signs, I thought this would be a great opportunity for me to take a refresher course. I attended this workshop and struck up a conversation with The Director about the Academy. He told me a bit about his program and also offers a course on line. For so many families out there, finding the time to commit to a class seems nearly impossible. Taking the online class may be the answer for your family. I hope you find this helpful.

The American Sign Language Academy offers classes in American Sign Language in Pawtucket, RI, with over 90 students attending regularly. In addition, to accommodate those who would like to take classes but may be too far away or have scheduling conflicts, ASLA will be offering an on-line course starting in April.

The course utilizes 21st century technology with the benefit of teacher feedback. The idea is called the Blended Classroom. The cost for level 1 on-line is $125.00.

After registering for the course, students will be sent their course materials. They will go to the website and use are a password for the first of nine weekly lessons. They will see a video with detailed instruction. At the end of the lesson, students will need to set aside time to practice. After seven weeks, students will meet with the teacher (Manuel Martin) via webcam and do their first presentation. They will receive feedback from the teacher. In the ninth week, they will do their second presentation. After the teacher indicates the two presentations are successful, students will be mailed a certificate of completion and they will be eligible to go on to level 2.

Students will be able to access each lesson for the assigned week. If they miss a week, they will be allowed to go back to that lesson as a make up. Only one lesson may be repeated in this way during the course.

More than one student may use the course. However, each additional student will be charged $25.00 if they want to do their presentations for the teacher, receive feedback and receive a certificate at the end of the course.

In a few weeks, when the program is ready to be launched, information will be posted on the website. Contact us with any questions you may have.

Manuel Martin
ASL Academy
401 722 1022
http://www.aslacademy.org
http://www.facebook.com/pages/American-Sign-Language-Academy/219507895413

Core Strength

2011-03-20T20:06:00.000-07:00

I just love to spend Sunday afternoons with Hailey, we are not usually rushed for any particular reason. No school, no work...no worries. We can read as many books as Hailey wants to read, she loves to put about 10 books at a time on my living room chair and then come and get me to read them to her. She never tires of reading the same books over and over again. We watched movies together Dora and Tinkerbell. Hailey had to show me how to put the movies in the blue ray player, Grammie doesn’t have a clue how to work it. Thank goodness Hailey did.

Hailey has been accepted and will be attending The Conductive Learning Center In Michigan in May. We are very excited about this!
Because Conductive Education promotes development of the whole person, including physical, social, cognitively and psychological aspects, this intervention is not viewed as a traditional therapy but rather a multi disciplinary approach to improving the quality of life for children and their families. Hopefully Hailey will learn to gain control of her movements, increase her core strength and increase her level of independence. It may also help with potty training. The children and families who attend C.E. are taught problem solving skills that will allow them to develop unconventional ways of accomplishing motor tasks. Today we worked on core strength and neck and head control by sitting independently at this table that we fashioned out of a $7.99 ikea table and a towel holder that was bought at home depot. Hailey seemed to like sitting this way, but when she got excited she would let go of the bar, so of course she could not be left unattended. And of course, she still amazes me everyday!

If you have adapted any furniture in your home to help with core strength...please do share!

Art Exhibit

2011-03-12T15:09:00.000-08:00

I am very Lucky to work with a great group of talented artists. On March 24th our 5 man show will go up at Cedar Grove Gardens and will stay up until April 7th. An opening reception will be held Thursday Night march 24th from 6:30-8:30p.m. This is a great collaboration of Artists and friends and we welcome you all to share with us in the fun for a glass of wine and hors devours.
Above are a few samples of our work and below are short statements/bios from each of us. If you enjoy looking at this work, I hope to see you on opening nights. If you know a friend who may enjoy this, please share this link with them as well. We really appreciate it!

Janet Harrold-oil
Growing up in Boston was a constant inspiration for me.
I love to paint the brownstones in the South End especially in the
spring time when the dogwood are in bloom.
Every brush stroke I make on raw canvas is a stroke of love, I paint to raise money and awareness for Cerebral Palsy. To own a painting by me is to own part of my passion. I am doing something that I love to do for someone that I love. Proceeds from my paintings go directly to my granddaughters alternative therapies. To signify the cause, any recent work will have a green Cerebral Palsy awareness ribbon placed discretely in the painting.

June Alexandra- stained glass
As a stained glass artist and floral designer, I am always working with the play of color, light, texture and design. The dearest things in my life have been flowers, trees and the dogs I live with so, naturally, most of my art is concerned with these subjects. I spend part of each day in the Arnold Arboretum in Boston, MA communing with the trees, earth and sky and it is here that I find my inspiration. Nature has so much to teach

Mitchell Karas -oil and pastel
My paintings are based on my love for the natural world. They are my impressions of nature,beaches.marshes,gardens,forests,rivers and flowers. The images are a metaphor for my continuous struggle to find harmony and balance amidst the restless intensity of life. I am fortunate to be an artist because i can spend time exploring my feelings. I can look around and see the beauty in things and create more beauty from what i see.

Cat Thomson- oil
Painting has always been one of my favorite ways of expressing my inner world. It allows me to explore my emotions through the use of color and line, and I find it very freeing. Often, my paintings have been symbolic of events in my life, relationships or raw emotion. Recently, my works have focused on pieces of fiction, notably fairy tales, and their allegorical content.

Kristen Ahern- Photography

Emotion - that is my goal every time I pick up a camera and compose a shot.

It has taken me a long time to determine that photography is my life's love. After studying advertising and graphic design in college, I finally realized about 4 years ago that it was the art of photography that I needed to learn in order to start to speak to the world.
For me, a photograph is much more than a picture of something or someone. It is a visual representation of emotions, thoughts and moods. It is a way to speak without actually talking. Exploring a subject - whether a person or a thing - from all angles; revealing it's personality with light and color - this is always in my mind as I approach each subject.
Whether it's visually organizing a complicated scene to convey a message, or a simple, solitary subject emanating a mood, when I take a photograph that requires no words for explanation - I am in heaven.

Please feel free to leave us a comment
For more information on this exhibit you can contact:
Cedar Grove Gardens,
617-825-8582
911 Adams St.
Dorchester, Ma. 02124
or email me www.harrold.janet@gmail.com

Images for Cerebral Palsy Awareness Month

2011-03-04T19:03:00.000-08:00

In honor of Cerebral Palsy Awareness Month

To choose a profile picture to add to your facebook page and to help raise awareness for Cerebral Palsy.
Click here When I look at my newsfeed it is full of C.P. awareness messages from friends and family who have changed their profile pictures to support the cause.
From the bottom of my heart, Thank you!

Did you know that March is Cerebral Palsy Awareness Month

2011-03-01T18:24:00.000-08:00

This is a month specifically dedicated to raise awareness for Cerebral Palsy. This year the actual day falls on March 20th.
Since Hailey was born with C.P. almost 4 years ago now, (my where does the time go)? Any mom of a child with special needs can easily tell you where the time goes... it goes to the countless hours spent in so many therapy sessions, to hours, days and weeks spent in the hospital whether it be for an unexpected emergency, or a routine check up. Endless days and hours researching and grasping bits of information that will help you to understand his/her diagnosis better and help your child to live as independently or comfortable as they possibly can. I have always looked for ways to educate others about Hailey and this month gives me an opportunity to really drive it home. I would love to share with you, just a few little things that I will be doing this month in an effort to help Hailey and others who have C.P.
The first thing I did was write an article in the special needs edition of The Boston Parents Paper.
You can read this article here on page 10 of the electronic version of the magazine. I also made green ribbons and handed them out to friends and family who wanted to wear them in support of Hailey. I changed my profile picture to one that has a positive message about C.P. and encouraged my friends to do the same, you can find your own here. Another thing I did was to help raise money for Hailey’s Conductive Education by placing a few donation jars in convenience stores in my neighborhood. (May will be here before you know it and that is when Hailey will be going to Michigan for 4 weeks to attend Conductive Ed)! I have also suggested that friends join the event that Natalie started called “Cerebral Palsy Awareness Month” and I will be posting facts about c.p. on my facebook status quite frequently this month to help others understand just what C.P. is.
If you can add to this list and help others raise awareness please comment below.

You've come along way baby!

2011-02-28T18:51:00.000-08:00

Well, today I went with Natalie and Hailey to a Dr’s appointment at Children’s Hospital. Hailey has to have her hips x-rayed periodically to make sure that they are not being affected by the way she sits (W style) this is a common and comfortable position for kids with C.P. but it can dislocate their hips so the Doctors keep a close eye on her. I am very pleased to report that Hailey’s hips are perfect. I am also very pleased or rather amazed by Hailey’s behavior with the Doctors today. She let them do whatever they needed to do without a battle. She actually smiled for the camera (or should I say the x-ray machine) she watched silently and cooperated while they made a new cast for her legs, (she wears A.F.O.s to help her with ankle/leg support) she let the Doctor feel her spine and check her reflexes. All of this without a single peep out of her. I couldn’t believe it! Just last year I wrote a post about her screaming every time she went to the doctors. She would even scream when we pulled into the parking lot at the hospital. I have to admit, I never thought I would see this day with Hailey, ever! But, i’ve said it before and i’ll say it again. “Hailey never stops amazing me”

ipad give away

2011-02-26T18:02:00.000-08:00

A great opportunity to win an ipad for your child who has special needs. Head on over to Marissa's Bunny Marissa suffers from infantile spasms and her dad Mike is launching a foundation to support kids with disabilities and his boss is donating the ipads. The give away is based on Merit, so visit his blog for the details. Good luck!

A new look for "KIDZ"

2011-02-24T19:39:00.000-08:00

As many of you know, I have been doing a little writing in my spare time (which by the way, is really non existent). I write for a few different special needs sites. You may recall me mentioning in a previous post that I write for Kidz. This site is an amazing site that celebrates the ups and downs of raising children with special needs. The posts on this site are a collaborative effort of 12 bloggers and 1 fearless leader Tara. The Kids Krew contributer’s are all amazing woman who have children with different abilities, who share their knowledge and resources with thousands of readers each day, some who are veterans in the special needs community and other’s who are newbies and looking for as much information as they can possibly find to help them understand their child’s diagnosis. This past year Kidz received “The Top Blog Parenting Award” and has over 20,000 visitors each month! It is both an honor and a pleasure for me to be part of this effort that helps so many children around the world. On this site you can expect to find uplifting stories, poems, songs, activities, ideas, friends and resources. We are excited about the new design of the KIDZ site, so be sure to check it out. If you know anyone who may benefit from this site, please share the link with them www.kidzorg.blogspot.com I know it will help them, just as it continues to help and inspire me.

A small dose of the " Medicine of Music"

2011-02-21T10:38:00.000-08:00

After playing with balloons at a physical therapy session with my mom recently, I thought...what a great way to get Hailey to move her arms more, so this weekend I had a long overdue sleepover with Hailey. We had so much fun, we always do. I bought a couple of latex balloons at the iparty store and we started hitting them across the table. What a cheap, fun exercise, just listen to Hailey’s laughter in the second video, this does not seem like therapy at all and it is a great way to keep her moving.
If you listen carefully to the first video, you can hear a song playing in the back ground. It is a song I sent away for some time ago and was personalized for Hailey. It is from the songs of love foundation. This incredible foundation writes songs for children who face severe medical challenges. If you have a child who qualifies for this program, she will receive a cd in the mail within 4 weeks. Hailey absolutely loves this song, she loves that she hears her name in it over and over again. She cannot ask for it verbally, but in her ever so special way she asks for it every time she comes over. She smiles and gracefully extends her arm in the direction of my outdated cd player that sits on the kitchen counter. If for some reason we miss what she is pointing to, she will begin to sway and dance in her chair until I say “Oh, I know what you want” (insert Hailey’s smile here) you want to hear your song.
The mission of the Songs of Love Foundation is to bring healing music to chronically and terminally ill children across the country. The foundation is a national non profit organization. To date, Songs of Love has written more then 19,000 songs for children in more than 500 hospitals across the country and throughout the world. The pool of artists has grown to more then 350 songwriters, lyricists, instrumentalists and vocalists who have experienced the excitement of being able to give back with the talents they were given.

Music expresses that which cannot be said and on which it is impossible to be silent.
-Victor Hugo

A Valentines poem for my Sweet Tart "Just because"

2011-02-12T17:49:00.000-08:00

You have my heart there is no doubt,
my fragile flower, I can’t live without.
my heart is yours, as well my soul
I love you more than you’ll ever know.

A little girl, with long brown hair
her smile it spreads from ear to ear.
her words unspoken, I don’t care
I know she loves me, i’m well aware.

Her future holds no certainty,
but then again who’s does
i’ll just take it day by day
and love her just because.

xoxoCopyright by Janet Harrold

Exceptional Family

2011-02-03T19:53:00.000-08:00

A lot of you may recognize this beautiful family as Zak, Nathan and Renee Charlan from Exceptional Family T.V. “EFTV” Is my favorite online destination to visit for news and current resources and advice for children with special needs. Advice given from other parents of children who are living the “Exceptional” life. I credit this family for their humble approach and ability to expose their private lives to benefit others. I personally would like to say thank you for giving us a voice and a connection with each other, and for all that you have done to facilitate this “Exceptional” community.
If you would like a 16 X 20 oil painting of your child email me www.harrold.janet@gmail.com 100% of the proceeds go to Hailey's Conductive Education

Painting of Sofia and Carter

2011-01-30T06:33:00.000-08:00

It's been a little while since I have painted, and it sure feels good to be back at it. This beautiful little girl Sofia also has C.P. She has been going to The Conductive Education Centre in Halifax, N.S. Canada She had been taking classes with Ben and his mom Cary from about the small stuff Cary mentioned to her about my raising money for Hailey to go to The Conductive Learning Center in Grand Rapids, Michigan, she contacted me to paint this lovely shot of Sofia and her cousin Carter making music together at the piano. I sure hope she likes it! Our goal of getting Hailey to Conductive Education is getting closer and closer. We have started the application process and if accepted she may be attending the May-June session this year! If any of you are thinking that you would like a 16 x20 of your child painted in oil for $100.00, now is the time to contact me. This offer may change in the near future. contact me at harrold.janet@gmail.com

A Conductors Point of View on Conductive Upbringing

2011-01-25T15:39:00.000-08:00

My next guest blogger is Viktoria, she is a Conductor and now a step mom to beautiful India who has C.P. India is very fortunate to have someone with such expertise love and care for her, but if you ask Viktoria I am sure that she will tell you that she is the lucky one.

Thanks to Janet for this great opportunity to share. My name is Viktoria and I trained as a conductor-teacher 12 years ago. Since then, I traveled to and worked in several countries and worked with hundreds of disabled children and their families. I feel that each time at each place I’ve leant more than I’ve ever dreamed to be able to teach—not just about my profession, or disability, but about people. After ten years of traveling I settled in the USA with my fiancée, who—as life has it—has a daughter who has cerebral palsy. So it happened that I got to practice what I preach!
My fiancée’s daughter is 12, and she’s beautiful. Her name is India. She started going to conductive education camps when she was little, having to travel states and countries; now she goes to a regular school and is raised at home the conductive way. This is called conductive upbringing—something that I can’t describe without first explaining what it is NOT.

I apologize that I do have to complain here. It’s almost impossible to find useful information about conductive education on the internet (“conductive upbringing” is the correct translation of the original Hungarian term; “conductive pedagogy” is the pedagogy behind what is a way of parenting and a way of life). Almost everything that one finds after a Google search of “conductive education” is laden with capital errors and very confusing misinformation. Please don’t believe for a second, regardless of how many websites, parent or professional blogs, discussion forums etc. are trying to explain you that conductive education is a “therapy”, “alternative therapy”, “holistic method” or anything anywhere near these: conductive education has NOTHING to do with medicine, (neither “conventional” nor “alternative”), it has no place in medical journals, and no self-respecting medical professional should ever try to analyze pedagogy as if it was some kind of cure for an illness!

Doctors are incredibly useful. They might have saved your child’s life. Their opinion is relevant when it comes to their area of expertise: diagnosing and treating medical conditions. A lot of children with brain injuries have one or more of those underlying medical issues that do need medical attention and various interventions. However, their opinion about your parenting skills and pedagogy in general is not more relevant than anybody else’s as these are usually not their area of expertise. Pedagogy is a social science.

The confusion about conductive education has several reasons and it has been around since the beginning (conductive pedagogy has been around for several decades, but was hiding in Hungary behind the iron curtain until the 1980s). One of the reasons may be that the brain or spinal cord injury that causes the disability is usually acquired in circumstances that include accidents, hospitals, doctors; so one is likely to search for the solution there, and assume that if the injury is in the central nervous system, then the central nervous system has to be “doctored” in some way to eliminate the disability. The problem with this is that it is unfortunately not possible to do this. The injury to the brain or spinal cord is final and irreversible—any doctor knows this, even first-year medical students, and they are likely to tell you about this—hence the impression that “there’s nothing that can be done”. The doctor may even warn you of “certain elements” that may play on your despair, use your misfortune to sell you products and interventions that promise to reverse these injuries and that your longing for hope may dupe you into going for these (these are called “quack therapies”, and include stem cell therapy, hyperbaric oxygen therapy, magnetic therapy and many more). The doctor is right; regardless of what any of these charlatans claim, irreversible injuries remain irreversible.

The good news is that this doesn’t mean that nothing can be done. The way the disabled child is brought up will make all the difference between an inactive, helpless, dependent child and the active, motivated, independent one: that’s your power as a parent. The upbringing you provide, the opportunities you give your child to learn, to participate, to help themselves are all going to make the exact same impact as they would if your child didn’t have a disability. You wouldn’t question your impact in case of your typical child, why would you do that in case of your disabled child?

Conductive education schools, camps, or conductors who work directly with your family all serve the purpose of teaching you, the parent how to teach your child just about anything: how to motivate, encourage and help them to move, reach for toys, learn ways to change their place, to play, to communicate, to eat, to wash, etc.; how to organize your day so that you can fit everything in that you need to fit in; how to deal with funky behaviors and so on. It is a complete lifestyle “package” that is based entirely on common sense (which makes it incredibly difficult to describe!) Parents who are lead to believe by someone for some reason that conductive education is some sort of alternative movement therapy based on repetitive exercises superior/inferior to physical therapy loose out because even if they participate, they will not be able to raise their child in a conductive way therefore benefits, if any, will be marginal.

Pedagogy is a science but you don’t get the same quantitative proofs you get with Math. While studying to be a conductor, one learns a lot about the history of pedagogy, theories that came and went over the centuries and decades, theories that might have affected the birth of this very complex education system. However, conductive education is not based on any set scientific theories, it is just based on the aforementioned common sense and easily observable everyday facts: teaching might cause learning; more/better teaching might cause more/better learning; what you don’t even try, you may never learn; if you really want to learn something and you try, you may eventually learn it even if it seems against the odds at first; solving an impossible-to-solve complex task may become possible if it’s broken down to simple tasks and solved one after each; I could go on and on. There is almost nothing in conductive education that wouldn’t be observable in the way an average good family raises their kids or an average good teacher manages their classroom, but what is unusual about conductive education for the newcomer is that these everyday routines, parenting and teaching methods and techniques are applied to a broader population: disabled kids involved. This extreme simplicity of conductive education is what makes it so very difficult to understand for most. The results seem unbelievable because the disabled children do eventually end up learning and doing things they couldn’t do before, so everyone thinks there are some great and advanced scientific discoveries or “brain tissue recovery” and “brain rewiring” involved, while there is nothing like that. It’s the nature of people that they’re looking for explanations and it’s hard to accept that a major achievement of a disabled child is just a result of simple teaching and learning and not “healing”. That’s why we see a lot of descriptions of conductive education that try to make sense of it by providing these medical-style explanations of healing brains, but I can assure everyone that none of those are correct and every time you see one of those just click and go to the next page, because you’re wasting your precious time.

You should also quickly dismiss your source of information if you hear that you have to go to Hungary to get “real” conductive education, or that your child has to be in a group, or that you have to purchase the “original” wooden furniture that has been in use in conductive classrooms in Hungary. The truth is that you can learn to become a conductive parent in a very wide range of circumstances: if there’s a conductive education school near you where your child can attend full time that is really a lucky situation, but if there isn’t you can still try to attend one of the summer camps or you can try and get a conductor to come to your house a few times a year to teach your family. When this conductor got to know your family and your situation, you can even cut back on the costs of travel and whatnot and ask for their help using Skype and a webcam, at least some of the time.

If you become a conductive parent you can raise your child the conductive way and provide conductive upbringing at home. That’s the whole point. Being a conductive parent means that you are a conductive parent at all times, morning, noon and night, in the sitting room, kitchen, bathroom, car, park and at the grocery store, not only at specially allocated times and places. It means that you’re aware that your child’s disability is not an illness that’s awaiting the cure so that he can become a whole person, but that he’s already a whole person, and he’s a lifetime learner like everyone else. You as a conductive parent are also a lifetime learner like everyone else and you’re constantly learning and discovering ways to help your child’s learning.

There’s a lot more to say, but I’ll leave it here for now. I would like everyone to know that it’s worth to be a conductive parent. It initially seems more work and may be emotionally hard—there are times when you don’t help your child, you let them struggle and that may make you feel bad at first—but you can expect a payoff soon. Children can be very well aware of their achievements and that can make them feel really happy. That’s how India’s father hooked on: after he got a glimpse of what his supposedly helpless little girl could do and the huge smiles that even struggles and tears eventually ended up in, he never looked back. Not many people do.

Thank you to Viktoria for sharing with us a Conductors Perspective on C.E. you can read more about her and India at Conductive Upbringing

Guest Post from Cary on Conductive Education

2011-01-20T17:51:00.000-08:00

As previously posted I have asked a few of my blogger friends to share their experiences with me on Conductive Education. Cary is my first guest blogger. Many of you may not know Cary, but you have seen her son on my blog before. After all, I have painted not one but three paintings of her beautiful twin boys Ben and Danial. Ben has C.P. and has recently returned back from the Conductive Education Center in Canada and Cary was kind enough to share her experience as well as give us lots of good information. Please show her some love by visiting her blog where she blogs about her families life with twins, one who happens to have Cerebral Palsy at
http://aboutthesmallstuff.blogspot.com/

If anyone else has an experience that they would like to share, please email me
www.harrold.janet@gmail.com

Background Information:

Hi. My name is Cary and I’m a mom to 3 year-old twins, Benjamin and Daniel. Ben has
Spastic Diplegia Cerebral Palsy. For him, this means that his gross motor skills are very
delayed, but his fine motor, speech and cognitive abilities are on target with a typically-
developing 3-year-old. Ben crawls, pulls to stand and cruises along furniture. He also
walks very well with a posterior walker and has even figured out how to run and jump
with it.

Conductive Education Centre Information:

Ben has done 3 one-week intensive Conductive Education sessions at the CE Centre
in Halifax, NS, Canada. The Centre is part of the Conductive Education Canada
program through The March of Dimes Canada. This is a very small centre with only one
Conductor…but that one Conductor is amazing!

The first one-week session that Ben did was done one-on-one with no other “students”.
The last 2 sessions were done with one other “student”, a 4-year-old girl who is very
similar to Ben.

Because this centre is so small, it is possible to choose the type of session you want to do.
Some students do intensive one-or-two-week sessions whereas others do sessions once or
twice each week. Since we live over 2 hours away, we choose to do intensive week-long
sessions, with a 2-hour session each day.

The cost of a session with Conductive Education Canada is subsidized by The March of
Dimes Canada. This results in a HUGE savings. Without the subsidy, the hourly rate is
over $150, but with the subsidy, we only pay $39 per hour. WOW!

Halifax-Area Information

Halifax, NS is very easy to access from anywhere in Canada as well as the eastern
seaboard of the United States. It has a good-sized international airport with flights from
Toronto, Montreal, New York, Boston, Philadelphia, Chicago and more.

The following hotels in Halifax offer suites:

Marriott Residence Inn
Cambridge Suites Hotel Halifax
Hampton Inn & Suites - Dartmouth

We have stayed at both the Marriott Residence Inn as well as the Cambridge Suites.
However, most recently we stayed with Ben’s classmate and her Mom at their vacation
home in Wolfville, NS. Wolfville is a beautiful college town an hour from the Centre.
For information on their vacation rental, check out their VRBO listing.

My Take on Conductive Education

Ben thrives while we are doing an intensive session of Conductive Education. He
loves his Conductor and classmate and really enjoys all the “play” that the Conductor
organizes for them to do. While Ben is there, I notice immediate results. He sits up
straighter, moves better and works extremely hard. Having a classmate is EXTREMELY
motivating for Ben. I personally find an hour PT session exhausting both physically and
emotionally. However, a 2-hour CE session doesn’t feel that way at all. At times it can
be exhausting, but I find it exhilarating at the same time.

At his last session, Ben worked on the following:

Putting on and taking off his own shoes and braces
Transitions from walking to sitting, sitting to laying down and the other way
around
Sitting nice and tall without slouching
How to fall forward safely instead of falling backwards
Independent standing
Walking with pediatric canes
And much, much more

All of this is done in a fun way that Ben LOVES!

After we get home from a CE session, my husband is constantly pointing out new things
that Ben is doing. And my response is always something like “Oh…we worked on
something similar to that at CE.”

"Hailey I Believe In You"

2011-01-16T09:41:00.000-08:00

I believe in you.
Your impetuous determination tells me
that you will never give up.
You have so much to give,
and have given so much already.
I believe that you will stand tall.
We are beside you, and will always be.
There is no rush, so take it slow, one step at a time.
We are ready when you are.

Anyone who follows my blog knows that we do have a goal of bringing Hailey to Conductive Education. I am not even going to attempt to explain what that means exactly in this post. It is a bit confusing and complex to explain and that I will leave up to the experts. The next few blog posts will be dedicated to Conductive Education so that you can get a better understanding from families who have brought their children to CE as well as Conductors who have dedicated their lives to Conductive Upbringing. I hope you learn and comment as well as ask questions if you have them.
I have been corresponding and getting lots of great tips for Hailey from a Conductor who lives in Germany. Susie Mallett has given us lots of great ideas to help Hailey with her core strength and strengthening her neck, sitting independently and making suggestions so that we can begin to develop a conductive lifestyle. She is an inspiration and going to be doing a guest post here real soon. She has also recently written a book, I have taken these words off of the back cover.
I am a British conductor living and working in Germany, and I write the Conductor blog.
I write about conductive upbringing rather than “”Conductive Education”.
I write for myself, for young conductors, and for families with children who are together on the long, long road of following a conductive life style, or who are just embarking on one. I write too for disabled adults and their families. Maybe some of my postings will be useful to you.
You can find out more about this on Susie's blog http://www.susie-mallett.com/
Check back often for posts on Conductive Educating/Upbringing and if you are a parent who would like to share your personal experience in this series, please email me at harrold.janet@gmail.com

"say it with symbols"

2011-01-13T19:42:00.000-08:00

“say it with symbols”
(my new favorite special needs resource)

Imagine not being able to say “help” or “i’m hungry” being able to speak is something that most of us take for granted everyday. If you have a child who is non verbal or has difficulty with speech then you know how challenging communication can be. It can also be scary as well as frustrating.
With today's technology, some of us are fortunate enough to have the ipad. The Proloquo2Go app provides a full-featured communication solution for people who have difficulty speaking. It brings natural sounding text-to-speech voices, up-to-date symbols. No doubt about it ,it is getting rave reviews, we are lucky to have one for Hailey. My only disappointment so far is that the symbols it has for communication are not the Mayer Johnson symbols that Hailey has been using since she started speech therapy with early intervention a few years ago. I hope it doesn’t get too confusing for her. She does however have the Dynavox, this computer does use the Mayer Johnson symbols. She uses it mostly at school. For those of you who use the Dynavox, you know that it is a great communication device. A little heavy and not so easy to lug around everywhere you need to go. Not everyone is fortunate enough to have one of these either.
A Great Solution:
I’d like to tell you about a site I have come to love www.sayitwithsymbols.com This site has so many useful things to offer and the prices are much more affordable.. I especially like the pre made communication books.
These books are light weight, colorful, and portable. They are a great solution for making choices. Because our kids need to communicate anywhere and everywhere, this book is a great solution for communicating on the go. It is a great back-up for high tech devices.Very useful at restaurants, at the park or at grandmas house.
Another item that I really love is the Board books photo album. All kids love to see pictures of themselves or favorite people and places.
The album has sturdy cardboard pages and notches have been added to the page edges to make it easy for those with motor skill problems to turn the page. There is even plenty of room to write your own story.
Become a fan on facebook http://www.facebook.com/SayitwithSymbols i’ve seen them give great discounts and even give away FREE communication boards!

www.SayitwithSymbols.com
Giving Greetings Publishing
1-866-544-9540

rsargent@givinggreetings.com

"I never knew"

2010-12-29T08:34:00.001-08:00

I never expected to feel this way. I mean, of course I knew that I would love my grandchildren when the day came. After all, I am a very loving, nurturing person. I knew when the day came for me to have a grandchild that I would be blessed and that I would feel elated. But I never expected to feel a love as deep and as strong as I do for Hailey.
That being said, the day that Hailey was born, and with the level of complications that she had, emotions were overflowing, questions surpassed the highest mountains and uncertainty scared the hell out of me.
After awhile, and one heck of a roller coaster ride, reality and acceptance sets in and love and admiration grows even deeper than you ever thought possible. Hailey is an amazing little girl who has taught our whole family how to live a brand new life, a life that we never new existed. She brings us to new places and gives us a new perspective on what is most important, she has shown us how to be better people and more accepting and aware of others. Things that we never thought we had the time to do. Well, suddenly I have time, because for me the world seems to have come to a standstill and all of the things that we thought were so important are now insignificant. I have learned that we take things for granted everyday. I never realized that we are the fortunate ones just by being able to do everyday simple tasks like being able to walk, or talk, or by being able to feed ourselves. Well Hailey has opened my eyes to the fact that those things that we take for granted everyday are not simple tasks, they are not simple at all for many people. Who knew? I’ve heard about people having disabilities, but really I closed my eyes to it all. I had no idea how large of a community it really is. Now, that is not to say that people who cannot do these tasks cannot grow up to be great people, who can teach us so much about life, real life. On the contrary, people with disabilities are by far the strongest and most determined people that I know. Kind of funny yet contradictory that we perceive them as people who are weak. They will endure more in their lifetime than many of us will even begin to endure. (And we think we have it tough. See, it’s that perspective thing kicking in again) I challenge everyone reading this, to start the New Year off with a new perspective, a new outlook on life and new found respect for people who have a disability. I never knew that such a world existed, and I never knew that I could love someone so deeply as I love my granddaughter Hailey, but it is true, I do...who knew?

God doesn't give children with disabilities to strong people: He gives them to ordinary, everyday people, then He helps the parents to grow stronger through the journey. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family. Author Unknown

"Good Intentions"

2010-12-26T11:35:00.000-08:00

At this time of year reflection on the past and resolutions for the future tend to occupy our minds. Resolutions are hard to keep for everyone. In families with special needs children it is even more difficult. It was my intention to do a post on New Years Resolutions then I decided that I hate making resolutions, to me they feel like added pressure and commitments and who needs more of those? So Instead I decided to post a list of “Good Intentions” I have derived a list of 10 good intentions or things that I will keep in mind in the upcoming year. Then I will post it on my refrigerator as a subtle reminder. Please add your suggestions to the comment section below.

1) Be patient with others who don’t understand and sometimes say thoughtless or hurtful words. Instead of being bitter, channel your energy into educating them.
2) Promote independence by involving your child in everyday activities. Even if it gets done faster by doing it yourself.
3) Ask yourself what small thing you can do in your community to help raise awareness for people who have disabilities.Then make those things happen.
4) Hug your child even more than you do all ready if that is possible.
5) Laugh...If you lost it somewhere along the road, try and find your laughter. It is in fact the best medicine (and you don’t even have to fight your insurance company for it).
6) Get involved in your child’s school. Volunteer to read books, or serve snacks etc. Meeting the parents of your child’s classmates can be a lesson learned.
7) Enjoy the moment. Don’t let the everyday hustle and bustle of life overshadow your precious moments. Savor the moments and enjoy them while they are happening. After all, there is no rewind button on life.
8) Celebrate the smallest of accomplishments. Praise and encouragement are two very important things to do for your child’s development.
9) Share what you have learned in your journey with other parents who have similar struggles, you will teach them and you will also learn from them.
10) Get off the Internet! Make sure that you are prioritizing your time with constructive play and quality time with your child. This is therapy for both of you without feeling like a traditional therapy and so rewarding too. Save the internet for when your child is asleep.

LOVE IS...

2010-12-19T19:38:00.000-08:00

LOVE IS...
When you care about someone and want the best for them even if it means putting your own needs last. Love is selfless. Love is when you see the best in a person even if others don’t care enough to take a good look. It is understanding their every word, even though they haven’t verbally said a thing. It is believing in them, when others think things are out of reach. It is appreciating them for who they are and not wanting them to be someone they are not.
These are just a few of the things that define love to me, what is the meaning of love to you?

"Giving the gift of Time, Quality time"

2010-12-07T19:22:00.000-08:00

Why not give the gift of time this holiday season? At the risk of this title sounding a bit commercialized, note that I am not selling watches, or clocks. For most of my life I have always worked in retail, this time of year is always an extremely busy time for everyone. Even if you do not work in retail you are still extra busy either working long hours, or shopping for long hours, there is just too much to do and never enough time to spend with your family. Having a special needs child there are the endless therapies, school activities, Drs. appointments, more therapies, more Dr’s appointments and I just want to remind you to breathe, take a moment and realize what is most important in your life. Quality time spent with your child and with your family is priceless. This year I have decided that I would not work overtime, and that I would not spend countless hours in the mall, buying things that my family doesn’t like or doesn’t need. But instead I have compiled a wish list of things to do with my granddaughter and with my family, things that I always wish that I could do, but never make the time. Well, you know what, life is too short, this year I am just going to do it! The first thing that I would like to do is decorate a gingerbread house with Hailey. Now, I am definitely not your typical grandmother, one who stays at home and bakes delicious baked goods (I don’t have the domestic gene at all, I could however paint you an awesome painting) So, I guess I will have to buy one of those pre-fab gingerbread houses that you buy already made and decorate it ourselves. I will buy lots of candy, gumdrops for the walkway, m & m’s for the rooftop and candy canes for the doorway. Maybe we will invite a few of Hailey’s cousin’s and have a gingerbread house party! Another thing that would really put us in the Christmas spirit would be to watch a live Christmas musical at our local high school. There must be a local school or play house putting on their own rendition of The Nutcracker. I don’t think it is necessary for us to go to a big playhouse downtown and pay for a high ticketed performance, just in case Hailey experiences a bit of sensory overload. She enjoys music and she might enjoy seeing little ballerina’s twirling around dizzily on the stage. We definitely should go around the neighborhood and see the pretty lights. I know she will enjoy that this year. Maybe we could take a train to New York City for the day, I hear there is Disney’s “A Christmas Caroll” train ride in Central Station. This may be too ambitious of a wish list, but, if nothing else, I vow to spend quality time reading books to Hailey, and cherishing whatever time we can manage together, because she makes me smile, and I think that I make her smile too.

"Another Painting"

2010-11-28T11:05:00.000-08:00

I’m sure these boys look familiar, this is the 3rd painting that Caryanne from About the Small Stuff commissioned me to do of her adorable twin boys. (Daniel and Benjamin) She was hoping to have it in time for her parents as a Christmas present and I wrote to her a told her that I probably wouldn’t get to complete it in time, with my mom being sick and it being holiday time at work etc. but to my surprise I actually pulled it off. Yeah! I absolutely loved painting her boys they are soo cute and Ben, like Hailey has Cerebral Palsy. If it isn’t obvious in the painting and I know alot of you look for this now. This time I placed the green c.p. awareness ribbon over their grandpa’s heart. If you would like a painting of your child, please don’t hesitate to email me at harrold.janet@gmail.com 100% of the money will go directly to Hailey for future therapies that are not covered by insurance. Such as Conductive Education, Hippotherapy etc.

Tranforming Bullies into Educators

2010-11-20T20:42:00.000-08:00

Often times children with disabilities are misunderstood as well as misrepresented. Typically developing kids just don’t understand why kids with special needs do the things that they do and the lack of education results in bullying and name calling.
I believe that kindness, compassion and knowledge are lessons that must be permeated in the classroom in preschool and reinforced into continued education. If we are surrounded by
individuals who are a bit different for whatever the reason, be it a learning disability, a figurative disability or a speech impediment, combined with educators who can explain why their abilities may be different than the majority, the students will be better able to understand the differences rather than fear them. Knowing and understanding why a person may be different will more often discourage bullying and name calling and promote compassion. We need to intervene early enough by educating everyone, students and teachers alike. Changing the overall climate of the school is necessary to foster a profound impact on school bullying as well as educating children at an early age about how to interact with someone who has differences and by raising awareness and encouraging friendships. What can we do as a community to promote these essential components to build a better foundation for our kids to be able to live in a place of peace and harmony?

Hippotherapy Poem "I Saw A Child"

2010-11-16T03:24:00.000-08:00

I Saw a Child
by John Anthony Davies

I saw a child who couldn't walk,
sit on a horse, laugh and talk.
Then ride it through a field of daisies
and yet he could not walk unaided.

I saw a child, no legs below,
sit on a horse, and make it go
through woods of green
and places he had never been
to sit and stare,
except from a chair.

I saw a child who could only crawl
mount a horse and sit up tall
Put it through degrees of paces
and laugh at the wonder in our faces

I saw a child born into strife,
Take up and hold the reins of life
and that same child was heard to say,
Thank God for showing me the way.

“No act of kindness, no matter how small, is ever wasted.”

2010-11-12T19:04:00.001-08:00

Being fairly new to the Special Needs Community it sometimes amazes me the amount of kindness that strangers show me when I least expect it. (It is also sometimes unbelievable the ignorance of strangers, but we’ll save that for another post) You may remember my friend June from alexandra glass art she is the artist that helped me make the C.P. awareness ribbons that I featured on a previous post. Well, this past weekend June attended Roslindale Open Studios. I decided that I would visit June and show my support for her work by paying her a visit. We also took the time to stroll around the neighborhood to see the other Artist who were displaying their wares in hopes of showing off their creativity and hopefully selling a few things. I’m so glad we did. We entered upon this one particular artist who makes handmade jewelry from the rocks that she finds on Cape Cod. Now, jewelry is not something that I wear often, I very seldom get the opportunity to go out and I don’t like to wear jewelry while I am working. But while peeking over June’s shoulder at the stone earrings I noticed an awareness ribbon that caught my eye. I picked them up to show June and the woman who made them asked me if I had a personal connection to the awareness ribbon, I said “yes, my granddaughter has C.P.” she leaned over to me and said “then take them for her”, I said “oh no, I couldn’t, she is only three years old and she doesn’t have her ears pierced but thank you” She insisted and said “then you wear them in her honor, then she can look at them all the time”. I was just so touched I asked her if I could give her a hug.
I write this post in hopes of paying it forward. Please be kind and show the love by following this link you never know, you just might find something that you have to have or you may even find a Christmas gift for someone that is special to you.

Music to my ears

2010-10-31T18:10:00.000-07:00

Move over Liberace... this weekend Natalie, Tom and Hailey went up to New Hampshire to spend the weekend with Natalie’s aunt Christine. They had a great time at the petting zoo, apple picking, and trick or treating. Christine gave Hailey a gift and this one really struck a chord with me. She gave her her very own Baby Grand Piano! Growing up my family didn’t have much, but we did have music, most of my family were self taught musicians. My father played the guitar and the harmonica, my sister played the guitar and my brother played the drums. Coinsidently his son also plays the drums and my uncle went to the New England Conservatory of music. So it was no surprise when my son Tom(Hailey’s daddy) came home and said that he wanted to attend St. Paul’s (better known as The Boston Boy Choir) where he studied music and learned how to play the piano. He later went on to graduate college as a music major. “When Tom played it was intoxicating to me”, there was a sense of calm when he passionately ran his long slender finger’s up and down the keyboard. Due to her Cerebral Palsy I know that Hailey doesn’t have the dexterity in her fingers to play the piano like her dad, but it sure does my heart good to see her play and respond to music the way that she does. It makes me wonder how many of you have children in "Music Therapy" and if you do, how has it helped your child?

Lantern Festival

2010-10-29T16:44:00.001-07:00

I just can’t get enough of quality time spent with my family. Last weekend was the Annual Lantern Festival, such a stress free beautiful night, my husband even skipped out of work for a couple hours and joined us this year. :) as thousands of people walked around the pond with their children dressed in their halloween costumes, proudly carrying their handmade lanterns made out of plastic bottles and tissue paper, with a candle to light the way. It felt like were taken back in time or in a fairytale. It was beautiful to look across the pond in the darkness and see all the lanterns lighting the way. Natalie did a great job helping the kids make them this year and Hailey loves to participate in arts and crafts projects, so it was a win, win for everyone. Her costume this year is a dragonfly, she picked it out herself. She also had quite a good time modeling it while her mother took some great pictures. She looks so animated in these shots, we are not sure if Hailey will walk, but it looks like she is going to fly.
Tell us your fun halloween stories.

Different Points of View

2010-10-25T12:39:00.000-07:00

Different Points of View --Cards written for the differently abled in mind and in heart.
These cards are never intended to offend anyone.
Last May while I was looking for a birthday card for Hailey, I realized that what the Hallmark cards had to offer for 3 year old girls were popular and current cartoon characters such as Dora the Explorer, Mickey Mouse or generic cards that displayed a prima ballerina in all her grace and elegance, high on her toes in her beautiful pink pointe shoes. That is when I realized that they didn’t have a card that was a bit more specific to Hailey’s grace. I didn’t see a ballerina in A.F.O’s or a little girl celebrating her accomplishments as she walked through a field of daisy’s in her new walker. So I began to write a line of cards so that when I wanted to give my granddaughter a card for her birthday or a card for encouragement, I could chose a card that was a bit more relational to her.
I began to write text and I am happy with the text that I have written. My drawings however have me a bit concerned. I wanted to paint them in soft demure colors and keep them simple and child friendly. After emailing them to a co-worker I am starting to second guess myself here. I would really appreciate everyone’s honest opinion here before I spend more time, effort and money on this particular project. Above are some images and below is the email correspondence of myself and a co-worker. An example of one of my favorite cards will read as follows.

“When it feels like the whole world is staring at you...just smile”

His Response to my images:
Janet i never want to offend or discourage ..but i expect honest responses when i ask for your reaction so....my first reaction is to be disturbed (obviously the subject manner is sad) 2nd they look juvenile like a kid painted them..however that may be the look you wanted to achieve so there is an innocence to them that's sweet i think you wanted the paintings to say i am handicapped but i am somebody and i can achieve to be what ever i want to be and i am ok and just like you....its ok to look at a person with a handicap on this card or in this world but i guess the reality of it is a bit hard to take...this is my perspective maybe someone with a handicap would be reassured or reaffirmed by an image of someone like themselves...i know these are preliminary drawings and dont necessarily represent your end goal but that was my first reaction i guess the girl and the dog is a bit softer and more gentle to look at...and if she had a smile that was ear to ear i would find it a more pleasing image let me know if my response seems fair.
My response:
Hi,
You never offend or discourage me. I asked for your first impression and you gave it to me. i wanted them too be soft and simple....so they didn't look to harsh. I realize it is hard too see but for a lot of people this is the reality of their lives, even if others chose to look the other way. Your reaction just makes me more aware that these kind of cards need to be in as many stores as poss. If people got used to seeing them more it would help to raise awareness and hopefully blend into the Norm (whatever that is) I appreciate your honesty.

I realize that I am putting my self in a very vulnerable position on this but, i've got to know before I keep investing in this. The question goes out to my "special needs" friends and my "Not So Special" friends (just kidding) Is this something you would like to see more of, or should I throw in the towel?

kicking and splashing

2010-10-19T18:20:00.001-07:00

Usually when I bring Hailey swimming she seems to be pretty happy to be in the water. She doesn’t move around as much as I hoped despite all of my efforts in engaging her in the water.
None the less, the warm water is so good for her tight muscles, and so we continue to go.
This week there was a crate of rubber duckies and fishies on one side of the pool. Hailey dipped her hand in the crate and pulled herself out a fish. We played with him and submerged him under the water until his belly was filled with chlorine. Then of course, we dumped the water on grammies head. Not only did Hailey think that this was funny, but she just loved kicking and swimming from one end of the pool to the other and when she was done letting the fish spit all over my head she would line them up next to each other on the wall of the pool, before I knew it, it was time to go and she had 6 ducks and 6 fish lined up in a row and the crate was empty. We had fun and made progress today, I just can’t wait until next week!

Exceptional Family

2010-10-15T19:16:00.000-07:00

Well, it’s official episode 2 just started on Exceptional Family T.V.(To link to the video introducing me and the other bloggers)click here and then select "This Week" I am both honored and proud to do my small bit in contributing to their show. I will be writing a weekly blog from a grandmother’s perspective trying to convey the importance that the role of extended family plays in the life of a child with a disability, and also about the fun that Hailey and I have together. eFamilyTV focuses on parents/families/caregivers raising children with special needs. I hope that you will follow me and the other bloggers as we raise awareness and educate the rest of the world about the realities, struggles and triumphs of amazing families raising children with special needs. It helps parents connect with each other through open discussions and share ideas about therapies, equipment, adaptable toys and everyday stories. I have learned so much about Hailey’s disability by reading and speaking with other parents/grandparents who are living the same life. You can too. Pictured above are just a few images of my "Exceptional Family"

2010-10-13T17:23:00.001-07:00

"Double Trouble"

2010-10-01T18:32:00.000-07:00

You may remember these two adorable twins Ben and Daniel, i've painted them in the past. (they also remind me so much of my own twin nephews Mickey and Orlando when they were that age)Ben has Cerebral Palsy, like Hailey. The first painting I did Cary,(their Mom) from here was touched when she noticed that I put my trademark Cerebral Palsy awareness ribbon over Ben's heart. This time I placed it near Daniel's heart because i'm sure his love for his brother is great. I hope she likes it.

"Her Voice"

2010-09-29T13:37:00.000-07:00

Her voice so soft, like a whisper.
Most times even approximate, but none the less
it is sweet music to my ears.
Janet Harrold

Sign of the Week – Please

2010-09-29T03:42:00.000-07:00

Sign of the Week – Please

I'm Now Writing For "Kidz Krew"

2010-09-27T19:32:00.001-07:00

I have recently joined the “Kidz Krew” and will be writing monthly blog entrees for the site. This is both an honor and a pleasure for me to be able to write for a special needs site. Most of my loyal readers, friends and family know that I mostly write about my granddaughter Hailey who has Athetoid Cerebral Palsy. It is my mission to raise awareness and educate people about C.P. and this is another great opportunity to be able to do that. The Kids Krew contributer’s are all amazing woman who have children with different abilities, who share their knowledge and resources with thousands of readers, some who are veterans in the special needs community and other’s who are newbies and looking for as much information as they can possibly find to help them understand their child’s diagnosis. On this site you can expect to find uplifting stories, poems, songs, activities, ideas, friends and resources, many resources. If you know anyone who may benefit from this site, please send them here I know it will help them, just as it did me.

"The kind words of strangers"

2010-09-26T16:28:00.001-07:00

After a very busy week at work, what better way to unwind than to have a sleepover with my favorite granddaughter, I know she is my only granddaughter but secretly she will always be my favorite, I know she will. This morning we went for our usual walk exploring the neighborhood, counting all of the cars, stopping at all the stop signs, smelling all the pretty flowers (o.k., o.k., so I let Hailey pick a few) today is Natalie’s birthday and she wanted to pick a few for her mom, what’s wrong with that? We listened to all the birds chirping and Hailey pointed them out to me each time they flew from the house to the tree’s. I decided to take her to the park up the street from my house. As we were walking by a bus stop a young boy about 10 or 11 years old was sitting on a bench with his dad waiting for the bus, as we casually strolled by the boy said “hi”, I stopped and told Hailey it was o.k. to say hi to him. Hailey smiled and didn’t say anything, the observant young boy asked if she was handicapped. I explained “she doesn’t talk and she doesn’t walk yet, but we are working very hard at helping her do that”, the young boy said you should bring her to Children’s Hospital, they will help her. I told him we do regularly go to Children’s and they are doing their very best to help Hailey. Not satisfied with that answer the boy continued to let me know that his younger brother didn’t speak well and they got him a tutor, and even suggested we do the same for Hailey, In a very persistent manner, I explained to him that Hailey has her own speech therapists and people who are working with her to help encourage her voice. Again, he was still not satisfied with my answer and urged his father to write down the name of the tutor that they used for his younger brother because he now can say juice and that is just one words that were difficult for him to say prior to the tutor, the father took out a pen and wrote something down on a piece of paper and handed it to me, the proud young man said “call him, he will help her to talk I know he will”. I looked down at what the man wrote and it read. Sorry, I don’t know his name and number. I looked at the father and gave him a wink and I thanked the young boy who was so eager to help Hailey. As my day continued, I just couldn’t get the young boy’s sweet words out of my mind. What are some kind words that others have said to you that you will never forget.

Sign of the Week – Wind

2010-09-21T18:12:00.000-07:00

Just click on the sign of the week to learn wind!

Sign of the Week – Wind

Family life stories: Advice for families

2010-09-20T18:22:00.000-07:00

Family life stories: Advice for families

How to Learn American Sign Language

2010-09-19T18:27:00.000-07:00

Teaching your non-verbal child how to sign can really cut down on tantrums and frustration. It can easily replace stress and guessing games if done correctly.
To help build language comprehension you need to pair the sign with a verbal response by doing this they help each other. The sign can act as a verbal prompt. For example: If you say the word car, while giving the sign for car, your child will understand that you expect him or her to make verbal approximations, even if he/she doesn’t say the word perfectly, they may make an effort or an approximation if in fact they are able to. Another thing that I have heard other parents of children with C.P. say is that they don’t teach their child with Cerebral Palsy sign language because they don’t quite have the dexterity in their hands, and though that is most likely true, and it is the case for Hailey as well, you still may be able to adapt a few signs to his/her ability. If it isn’t as perfect as a child who is deaf and has great control with their hands, it’s o.k. You will still be able to understand what they want because they will do it THEIR way. Start out by showing them just two words at a time, keep it simple, chose two words that you wish your child could say, or communicate to you. I think one of the most important signs that you can teach your non verbal child to do is the sign for “hurt” there is nothing worse than when your child is crying and crying and they cannot tell you what is bothering them. If they learn the sign for “hurt” you may be able to narrow it down by finding out if their ears hurt or their throat hurts etc.This is not the easiest sign to learn because your child doesn’t always have a boo boo. You may start out with something like “more” or “eat” or maybe “water” but eventually learning the word hurt can be a life saver. If you are considering sign language for your child as an alternative way of communicating, below is a chart of the alphabet in ASL you may want to get familiar with. As you begin to learn certain words the alphabet will be helpful, but for now, baby sign may work better for your child who is just starting out. Rachel Coleman is a woman who has a child who is deaf and has a child who has C.P. she is an amazing mom and the founder of http://www.signingtime.com/, these are the best c.d.s for teaching your child sign language and the best part is they will have fun while they learn. So come on, give it a try, what do you have to lose. Your determined child just might surprise you!
How to Learn American Sign Language

Our Little Bookworm Loved her first day at school

2010-09-15T04:08:00.000-07:00

"Swimming, swimming, swimming in the pool"

2010-09-13T06:47:00.000-07:00

Hailey and I tried a new pool yesterday, we love it. We had previously been swimming at a pool that was convienant, but lacked some of the necessary things that would contribute to her much needed aquatherapy. The pool that we had been visiting regularly didn’t even have a proper place for me to be able to lie Hailey down and take her wet bathing suit off. I had to do this on the counter of a sink. This was not good for Hailey as well as the people who needed to use the sink. The showers didn’t work properly and the water temperature wasn’t kept warm enough in the summer months to be beneficial for Hailey’s stiff muscles. The last couple of times I noticed Hailey wasn’t moving around as much as she used to. The water temperature was just too cold causing her muscles to stiffen instead of relax. Warm water is the most beneficial to children with cerebral palsy because warm water relaxes stiff muscles. Cold water can have a freezing effect on muscle spasms, making the task of swimming difficult. You may ask why swimming is such a great therapy for Hailey, because the buoyancy of the water relieves stress normally placed on muscles by gravity. The water also gives her a grander range of motion and coordination, allowing her a chance to build muscles and improve coordination. The sensation of water on the body is good for neurological development.
I decided to look for a new pool to bring Hailey to, and I found it! This pool is handicap accessible, has large stalls where I can now have some privacy and a comfortable place to lie Hailey down and get her dressed, the showers work and the temperature is always 83 degrees. Though we don’t have to use this type of feature yet, they even have a lift to lower handicapped individuals down into the pool!
The rules of the pool are a bit more strict, we have to wear a bathing cap, I thought Hailey was going to flip, but she kept it on and with the cap fitting snug to her head, The only thing that I could see was her pretty little blue eyes bobbing around the pool in excitement!

"Lifes A Beach"

2010-09-07T07:01:00.000-07:00

Life’s a Beach

Since the summer has all but come to an end and Hailey will begin school on Wednesday we thought we would do something as a family and enjoy the outdoors while we could. As you may have guessed by the pictures, It was a beautiful day at Nahant Beach. The water was a bit too cold for Hailey’s liking though, we spent more time on the sand than in the water. After a few hours we decided to get something to eat. Hailey was so tired by the time our food came that she began falling asleep sitting in the chair. Her eyes closing every time Natalie put a bite to eat in her mouth. As the waitress began clearing our plates, (Hailey still fighting her sleep, eyes closed, head down, practically face down in her plate) The waitress says “will that be all”? Hailey picks her tired head up...she’s not going to miss this opportunity no matter how tired she is, and just as we taught her to ask the waitress for what she wants, she uses her sign language and asks the waitress for “ice-cream please”. It was the perfect ending to a perfect day.

A Walk in the Dark

2010-08-30T21:28:00.001-07:00

Well it definitely wasn’t dark when we headed out after dinner, it was more like dusk. We just had so much fun strolling around the neighborhood we lost track of time. As we went along from street to street Hailey was fascinated with the STOP signs, of course we stopped at every intersection and pointed up at the sign. I said “STOP” and Hailey silently smiled with her pointer finger while thrusting herself back with excitement. It was a perfect night out, someone must have lit a fire because the smell of a burning fire place filled the air. When we approached a quaint little house with a beautiful garden, we couldn’t help but stop there and smell the pretty flowers. I also couldn’t resist picking an orange marigold for Hailey, it just matched her dress perfectly, she held on to that flower the entire walk. As a desperate attempt to go over her colors I thought it would be fun to point out the color of each car, as we walked pass them I would say, “see the blue car” and Hailey would respond in her sweet soft voice “aah” (her interpretation of car) a few steps later I’d say “Hailey look, there’s a red car” she would point to it and say “aah” and before I knew it she was navigating our way through the neighborhood pointing left “aah” then right “aah.” this simple game had become so pleasurable. Hailey really has taught me how to slow down, how to enjoy and appreciate the moment. We were having such a good time together I didn’t want the night to end.