Friday, March 9, 2012

How to get a special needs bike


I will be the first to admit that sometimes I dream a little too big. Let me tell you of my Christmas morning fail. So when deciding what to get the kids for Christmas I knew that I really wanted to get Bro a balance bike. It's a two wheeler bike without pedals made for kids ages 1-3. I went down to our local bike shop and picked up a really awesome matte black bike with matching pirate scull helmet- super cute! After I took it home I started to think of all the fun he would have on this bike at the park and in the drive way, popping wheelies and squealing with glee. I then pictured Sadie feeling sad because she couldn't ride a bike.  The trike we first bought for her at age 2 has a push along handle and so that is all we could do was push her along because pedaling at that angle was super difficult for her. The wheels in my head started turning . I convinced my husband (meaning he didn't exactly say no but just gave me the "your crazy look") that if I could some how get a bike without pedals and that still had training wheels she could scoot along and have much needed bike riding fun with Bro. I had thoroughly convinced myself that this was the most brilliant idea and that I was a genius. The thought that Sadie might have a physical activity that she enjoyed made it all that easier to rush down to our bike shop and lay down a good little chunk of money on a shiny pink bike. The "bike guy" was super accommodating and put together the bike without pedals and made the training wheels a little more stable. I had dreams of my two children scooting around on there push bikes in childhood bliss.

Christmas morning came, we tried her "balance bike" and she went a little ways before saying she needed to rest. I thought if we just get out every day and practice that she would eventually get it and start to have fun. No such luck. I went to my Physical therapist with my frustrations. They had just received a special needs bike to demo so we put Sadie in it. There was all kinds of straps and buckles and her feet where even buckled to the pedals. Sadie peddled that thing around with very little effort and had the biggest smile of satisfaction on her face. I couldn't help but tear up, she was having so much fun on it. Her physical therapist showed me that because she didn't have to worry about trunk control she could focus on pedaling plus the angle of the pedals were positioned in a way to make it easier. "I need it! How much is it?" I immediately asked. Her therapist answered "probably as much as a used car". My heart sank. She then quickly explained that there was a wish list that we could get on, but it takes a while. It is through AMBUCS. I was all for it but it was a lengthy process. Let me break it down for you:

  • You need a super gung-ho Physical Therapist who agrees your child will benefit from this "mobility device".
  • Then your PT must write up a request and have your pediatrician sign off on it.
  • A mobility equipment company has to come out and get measurements to order the bike with all your childs specific needs.
  • The mobility equipment company submits to insurance and YOU WILL GET DENIED, but you need this denial letter to send in to Ambucs.
  • Yourself, your PT and any specialists willing must write a letter to AMBUCS as to why one of there trykes would benefit your child. Go  HERE  to get the other forms needed.
  • If your approved you will put on the wish list and then you wait. You are pretty much guaranteed to get one at this point but it takes from 4 months to a year.
  • Need help writing letters? Click here to see my sample letters

I got my letter of approval just last month. Now we wait. In a perfect world I would get this magical bike in a month when Sadie's cast comes off. That way she can start strengthening again. Apparently there are donors that go on the website and contribute. The faster they contribute to your child the faster you can get a bike. You can even shamelessly petition for people to specifically donate for your child which is what I will now be doing at this point:

Should you be a sympathetic millionaire here is what you can do to donate to Sadie's bike as we still need 875$ more dollars. Go to http://www.active.com/donate/amtryke > fill in amount from 10$ and up and click continue> click sponsor specific rider> fill in Sadie Smith-  CA.

I strive to make all our "equipment" as cute as possible. If you fancy my fancy ideas here are the links from my collage.
pay no mind that I totally forgot the number 6 completely:) I think Sadie will totally go for the cat with a mustache!


4 comments:

  1. I wish I was a millionaire because I would definitely contribute to the Sadie Bike Fund! It sounds wonderful and here's hoping you get it sooner rather than later! :)

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  2. We were able to get special needs bikes for my two boys with autism thru a charity called St. Louis Variety club. I don't know if you have one in your area....you might try to google Variety club....I, too, wish I was a millionare...I would definately buy one for your Sadie. She deserves one for sure. She is very lucky to have such a special mommy!! Caren Sue evans caren_evans@yahoo.com

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  3. I have.a special needs daughter that has multiple disabilities and I so much want her to have a adaptive bike they are so expensive I live in Atoka,Tn and I wish someone could bless us with one of these bike IM praying for a miracle. I want her to have one by Christmas do you know any organization that can help me out.

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