Venting RE: adaptive bike

Here is my vent regarding Evan and the adaptive bicycle saga.....

First let me explain a few things. We live in California and there is an Agency called the Regional Center and they are throughout the state in different counties. This agency pays for therapy and equipment from birth to three and then if your child is deemed disabled enough or has a qualifying condition such as Autism they can stay with the regional center after the age of three. They will then provide necessary equipment and one type of therapy such as Warm Water or Hippotherapy.

I requested an evaluation for Evan to get an adaptive bicycle starting in February, he did not have a physical therapist at the time and so I had to rely on the regional center's OT to come and do the evaluation. She came and did an eval for his feeding chair to see if it was inappropriate for him and if he needed a new one and she was supposed to come out and do an eval for the bike. Well, I had not heard anything and she called me and we talked for about 20 minutes about Evan and the reasons I wanted a bike for him and his abilities.

A few weeks later I get an email from my service coordinator at the regional center saying that the OT has stated in her report that an adaptive bicycle is not appropriate for him at this time. Here is the wording from her report:

1. Tricycle- I am not able to recommend an adaptive tricycle for Evan at this time.I recommend that Evan and his family request that Evan receive more opportunities (or regular) opportunities to ride an adaptive tricycle at school or during adaptive PE. *Justification- Evan is unable propel or steer the tricycle at this time. He is dependent is riding the tricycle. Therefore, at this time: A tricycle is not considered as a therapeutic necessity or benefit.The family would like Evan to participate in a similar activity as his peers: Therefore, this is a request is seen as: a request for increasing recreational and social opportunities.

Evan did not attend a school that had an adaptive bicycle when she made this request. He will be attending a school in the fall that will have bikes there. He will maybe have 20mins a day to play at recess and one adaptive PE session a week in which he can possibly use the bike but this is not the only thing they will be working on. So I emailed our service coordinator again and said that she had told me earlier that someone had returned a bike to them and that Evan could try it out, and that is not what happened and that the OT never even evaluated Evan she just made her decision based on a phone conversation. I got a response saying that the OT had forgotten about the bike at the regional center and could we come and try it out on June 10th. I was so excited hoping that seeing him on the bike would prove to them that Evan would be able to ride it with practice.

You can check out our blog http://justinichfamily.blogspot.com/2008/06/no-adaptive-bike-for-evan.html to see how he looked on the bike and read about how they denied him for the bike again stating that he did not have the concept of how to ride a bike and he was just too young but he had potential. So while there I was so mad that I just had to leave because I did not want to end up crying or yelling at the service coordinator. I later left a voice mail asking if we could perhaps borrow the bike they had so that Evan could get the opportunity to use it and gain the skills that they said he needed in order to be qualified.

This is the response I go from her today after she emailed saying she needed to talk to her supervisor: I¢ve staff your request about borrowing the adaptive bicycle for the summer for Evan with my supervisor. Unfortunately, at this time we will not be able to borrow it to Evan for the summer. This decision was based on the OT assessment report conducted by Loreen Fong.

I know she should have checked her email wording before she sent it.

Here is what I responded with. I tried to sound calm but I was so mad. Thank you for getting back to me. I understand that Loreen Fong evaluated Evan and feels that he is not able to understand the concept of riding a bike, nor is he able to propel it himself. I do not have a copy of her new report so I do not know what else she added or changed. Can you please explain to me how he is supposed to learn the concept or how to ride the bike if he does not have any opportunities to learn. This is how most children get better at things which is with practice. I have tried to provide this opportunity but my resources which are commercial bicycles will no longer work for Evan.

We have tried a commercial tricycle, he is too big for them and does not have good enough trunk control to be able to stay on it for a long period of time. The next step up would be a two wheeler with training wheels, Evan is physically unable to ride this type of bike as there is no support whatsoever not really a way to add the support that he would need. I disagree with Loreen's statement that is a social request and not a theraputic request. Here are some theraputic long term benefits.
These benefits include:Bone Growth (evan's left leg is shorter than his right leg)
Strengthening of anti-gravity muscles
Development of hand/eye coordination
Opportunity for cognitive growth Respiratory activity
Development of Head & Trunk control
Social Acceptance
Improved self-esteem

Evan would get a great theraputic benefit from using his left leg to pedal or even having that motion simulated until he could do it on his own. Especially when his muscles are looser due to Botox, his PT stated that this is the time to work on strengthening. The motion of pedaling is a strengthening exercise.
Additionally, even though Evan does not talk he understands a lot and he knows that he is not able to be with other kids and do things they do, he stares at them through the window or tries to keep up with them on his feet or small tricycle outside, this is harmful to his self esteem and self confidence and emotions, so the bike would also be theraputic in an emotional way as well as a physical way.
Also, you saw how he was able to hold on using his left hand and if it came off he would work to put it right back on the handle, that is a huge thing for him. He has to use a lot of concentration to do that as his hand is so weak.

I have to say that I feel that Alta is doing a huge disservice to my son by not allowing him to at least borrow the bike to try to learn the things he is lacking according the the OT report. I am not trying to get this bike for the fun of it, I would buy it myself if I had the money, I want this to better my son's life in many different ways. That is all I ever want for him to help improve and provide as normal a life as possibe in spite of his disability. If Evan could talk he would tell you that he would love to have a bike to ride.

Perhaps, you can help me figure out how to get Evan the experience of bike riding that he needs in order to qualify for an adaptive bicycle. I am really at my wits end on how to help him w/o having an adaptive bicycle to practice and learn with. I would love to hear your ideas.

I ended the email there. Here are some ideas I have.
I am going to put Evan's name on the Ambucs National Wish List and ask around to UCP and Rotary clubs etc, if they could donate a portion or all of the funds. I have a friend at church who is trying to think of ideas.
But this is totally not the point. I just do not understand why they could not at least let us borrow the bike so that Evan can learn how to ride it. I am so mad and frustrated and this type of thing makes it so hard to deal with having a special needs child. I wish I could just run to Toys R us and buy him a $70 bike that has Diego or Thomas on it because that is what he loves, but I can't. If I had the $600-$2k that these bikes cost I would just buy it myself in a heartbeat.