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

Wheelchair Acceptance

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"

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 Set Little 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 Jars Tots 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.$32.99 It 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 4 Put 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 • $39.95 I 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 8 With 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 •$24.99 Hailey loves to be read too, I wonder if she would like these

Differing Abilities Book Set Kids 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 • $29.50 She 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 Abilities Increase 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 Center Our 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 Shapes 40 giant wooden shapes include circles, squares, rectangles, triangles and more. Large squares are 4". LA585 • $29.95 Hailey loves her pretend fruit, this wooden set is very durable

Fruit & Vegetable Cut-Ups Our 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 • $29.95 Last 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 Set As 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 • $29.95 These 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

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

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!

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.

Believe in your childs worth no matter what!

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???

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.

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

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

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"

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!

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"

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?

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

Finally the price of my book has been reduced!

Amanda and Luke

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

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!

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

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:

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

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.