The kindness of others

If it is one thing that i’ve learned on this special needs journey / belonging to this very special and exclusive club. Is that the many families that we have met, believe it or not on the internet, whether we met them networking, blogging, or even on facebook, we have met some of the most very special friends who’s love and compassion knows no limit. Are family is very grateful today for the kindness of A loving family that Natalie met on Facebook. On Sunday we took an 8 hour road trip to Peru Maine to pick up an Adaptive Bike that the Jamison Family so graciously gave to Hailey. The beautiful young girl who formerly owned the bike has the same type of C.P. that Hailey has, she no longer uses the bike and her mom asked if Hailey could use it! We were thrilled. (Thank you Erica). We have been looking for a bike for Hailey for some time now, this has proven to be an EXTREMELY DIFFICULT task. Hailey’s lack of core strength and mixed/low muscle tone makes it impossible for her to sit safely on just any bike, and the adaptive bikes typically cost thousands of dollars. We have been to a few bicycle shops trying to adapt or create our own bike to suit Hailey’s individual needs, but have been unsuccessful. So you can just imagine how happy we were to be given such a wonderful gift.

The idea of seeing Hailey be able to troll around on a bike like other children is heartwarming for me. She was so excited to sit on it. Unfortunately we discovered that Hailey is too small for this bike right now, but at least we have it to look forward to in the future. A very special thanks to the entire Jamison family for their kindness and their generosity. I know Hailey is going to enjoy her new bike as soon as she can reach the pedals! Hailey and Grampy trying to fix the pedals so that Hailey could ride it

Look at her desperately trying to make it work

Well its almost time!!!

This Thursday Hailey will become a big sister! Everyone is very excited/nervous, excited/nervous, excited and nervous. Sure i'm excited for my new grandson to enter this world, but also because I am going to be able to spend some quality time with Hailey. I have taken my vacation in ½ days so that I will be able to spread my vacation time throughout several weeks and be of more help to my family (Thank you Richard) I thought I could take advantage of this time off to do some of the things with Hailey that I never have the time to do. For several months i’ve been racking my brain trying to figure out some fun things to do while still incorporating therapy that she needs. Here are some of the activities that are on tap...we have signed her up for adaptive aquatics! Hailey loves to go in the water, and the heated pool is exactly what she needs to relax her tight muscles, only this time she will have a professional instructor working with her, instead of Grammy wading around in the pool. Ever since Hailey danced with Meghan at Impact Dance Co.

I have been emailing dance schools in our area trying to find a class for Hailey, she enjoyed it so much and seemed so comfortable trolling around on the floor, I really wanted her to be able to take a class like every other little girl who dreams of being a ballerina, unfortunately, I couldn’t find a class that was willing to take her, I finally contacted a woman who owns a dance/gymnastics school and she has decided to take Hailey in one day a week and do some creative movement type things with her privately. Although It isn’t exactly what I was looking for, it is still very exciting (wait til’ Hailey see’s the trampoline, she’s going to love it)! I believe that everyone should have the opportunity to dance and feel the music.

I’ve also been thinking about some crafty things, I believe that being creative is very therapeutic, and since Easter is just around the corner. I have a couple of Easter projects in store as well. I found this wreath on Pinterest and it got me thinking...

even though Hailey won’t really be able to do a craft that is so detailed, it sure will be fun to dump a box of Easter accessories, pastel eggs, ribbons etc. on the kitchen table and she can pick out what she wants me to glue on, tell me where to put it and when it is complete, she will be proud that she helped create this masterpiece and I hope it will make her smile everytime she goes in the front door. I also found this on pinterest... I know, I know, I actually hate these tacky egg tree’s myself, but it isn’t about me, I actually found myself outside today looking for the perfect branches, so that Hailey can hang eggs from each one and be proud that she created this too.

I have been wanting to try music therapy as well, Hailey really responds well to music, she loves playing the piano, and visiting her fathers studio. I just know she would enjoy it. It is so difficult to find the right balance, we have to constantly remind ourselves to just let Hailey be a little girl. So, I hope that these therapies are more fun than some of her other therapies.

" Between the earth and sky above, nothing can match a grandmother's love.

Sassy Grow up Cup

Hailey has a new cup and i’m so excited! Something most of us take for granted every single day is the ability to use our tongue, the ability to chew and eat our food, and the ability to drink from a cup. This is something that has always been very challenging for Hailey and for most people who have Cerebral Palsy. C.P. is a mobility impairment that affects the gross and fine motor skills, your tongue uses fine motor skills while eating and drinking, so you may imagine how it can be difficult for her to control her tongue. The ability to suck, swallow and chew is also compromised as well as the ability to speak. There is a famous myth that the tongue is the body’s strongest muscle...it’s not true, but it doesn’t make the tongue any less impressive, or less important. This is the way Hailey initially got her water...

Then her sucking got a little better and she was able to drink from this cup...It is the "Platex Lil Gripper" because Hailey also has trouble holding onto things the handles were key here and also the straw to help her with her sucking motion, the straw was also made of very hard plastic which was important so that it didn't constantly collapse like other flimsy straws. She used this cup for a long time. The problem was when Hailey tried drinking from this cup, often times she couldn't seem to concentrate on tipping her head back, so her head was always in the downward position, and when she sucked up, the water just kind of fell back out of her mouth

But now she has this cup. It's the sassy grow up cup. No spill, no spout. This cups looks a bit more appropriate for Hailey's age as well. She can experiment with getting the cup to her mouth without the liquid being gone by the time it gets there. Cuts down on her frustration level and hopefully she will get her drinking requirement each time she takes a drink and maybe, just maybe it will help her transition to an open cup.

The Life That's Chosen Me

The first time I heard this, I heard it on one of the sites that I write for on a regular basis, I am proud to be part of The Kidz Krew. We are a team of bloggers who write regularly about our challenges and our triumphs, we share knowledge and inspiration, we share ideas and we share tears. I have learned so much from these amazing woman, most of them Mothers to children who have special needs. If you haven't been over to the site and want to learn more about children with special needs you should head on over to Kidz This song really helps to relay a strong message, if you listen to the words you may better understand the life that so many of us live.

Source: kidzorg.blogspot.com via Tara on Pinterest

Adaptive Bikes

Looking for and finding the right bike for a child who has poor muscle tone and other related issues can be an overwhelming task. We have looked at so many for Hailey and have come up completely empty. Last spring we purchased a bike for her and then had to return it as it did not suit her specific needs, but recently Hailey has been offered an adaptive bike by another parent who Natalie networks with and we are so blessed and I hope it will be a good fit for her. After doing the necessary research, we discovered how difficult it is to find the proper bike. I was so pleased to run across this helpful article written by the Friendship Circle Blog I have listed only a few options, but to see the entire list and their links please visit their site.

Trailmate Mini Tike The Mini Tike is great for young children that have mobility challenges. The low step-through design makes access easy. The bike comes with a rear basket and additional options are available. Price: $379 Ages: 3-6 Purchase from: Trailmate

Skuut Wooden Balance Bike The Skuut is a wooden bike for children. It has no pedals and no training wheels. The Skuut is perfect for learning balance, steering, coordination and independence. Having mastered balance on the Skuut, the transition to a traditional two wheeler bike is easy. Price: $60-$70 Ages: 2-5 Purchase from: Amazon.com

Glide Bikes Glide Bikes use special balance bike technology that allows children of all needs and skill levels to quickly and easily learn how to ride a bike. The low center of gravity and ease-of-use makes it easier for children with special needs to ride a bike. Price: $100-$300 Ages: 3 & up Purchase from: Amazon.com

Fat Wheels Fat Wheels is great for adults or children with special needs who have balance issues but want to ride a bicycle. Fat Wheels come in a variety of sizes. Price: $90-$200 Ages: 4-8 Purchase from: Fat Wheels

AmTryke Therapeutic Tricycle The AM-12 AmTryke features a combination hand/foot drive. Designed to build strength and coordination for a wide range of children with disabilities. The hand /foot cycles are intended to stimulate reciprocal movement and increase range of motion. Price: $750-$900 Ages: 5-12 Purchase from: AmTryke

MacKenzie and Griffin

I love this one of Mackenzie and Griffin from Georgia Soo Adorable

"Just The Way You Are" Matty B

This video has been on the special needs circuit for quite some time now, but it makes me smile every time I see it. I wonder if Bruno Mars has ever seen it?

SIgn Language Video

As some of you know, awhile ago my blog was nominated for the About.com "Readers Choice Award" for The best Grandparent blog, I recently found out that I am now one of the top 5 contestants (Whoo Hoo)!!!!! Thank you for those who took the time to vote for me. I appreciate it. But anyway, the reason for my blog is while I was taking the time to peek at my competition, I ran across a blog called "Grandma's Briefs" (I couldn't help it, the title of the blog peaked my curiosity) When I looked at the blog I was pleasantly surprised to find a video that she had made after learning some basic sign language from baby signing time. This is all the rage for typically developing kids to be able to communicate earlier than they are able to speak. It cuts down on frustration and is also known for encouraging speech at an earlier age. I also need to get up to speed with my sign language in order to be able to keep up with Hailey's communication, she has learned a bit in school and I want to be able to understand her when she is trying to tell me something. I hope this helps dome of you as well. Thank you to Grandma's Brief's If I don't win the contest, I hope that you do!

"Just Because"

This was a poem I wrote last year for Hailey on Valentines Day.
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.

xoxo Copyright by Janet Harrold

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

Traveling Bears

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 Bears P.O. Box 1513 O’fallon, MO 63366

I am the child

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 in development 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!

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

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!

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 Blogger All 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.com So 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

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 request Mary Clare and Luke... so precious

The Photo

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

"Inclusion Infusion"

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

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 disease Won't fly above the trees But I'll do my best to change the world a little each day I'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

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 Claus Hailey's face lit up like a Christmas Tree!

Hailey with Impact Dance Company

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