Why are so many parents of individuals with disabilities disappointed with services?

Last week I attended a presentation on transition planning at AHRC on Maiden Lane, downtown Manhattan. I was somewhat startled by the across the board discontent of parents...

The presenters had not finished their first few thoughts before parents of individuals with disabilities were complaining that the services being promoted were not being offered or some variation on the theme.

Why does government delivery of services to individuals with disabilities not have a satisfaction survey? Why are the social service workers not held accountable? Why not explore other models whereby families can seek individualized services...rather than a delivery system so flawed in a bricks and mortar antiquated format.?

If the social service system delivering services to our kids were measured in an objective manner, would service delivery be much improved ? I think , so!

Sports, Hockey and Individuals with Disabilities

For years Stuart Flaum of the Disabilities Leadership Council searched for coaches who had an understanding for both competitive sports and individuals with disabilities. Well, we are very pleased to post this very first in a series of many articles on sports, individuals with disabilities, and their ability to handle TRANSITIONS.





You've Got a Friend in Me

By Nancy K.

Editor's note: The opinions expressed herein are those of the author exclusively.



“Am I going to skate with Anthony today?” Jake asked me on the Saturday while we were on vacation at the end of the summer.

“Do you want to?”

“Yes,” Jake replied.

There is no way to describe the feeling you have when you hear the words “Your child has autism.” My son was 14 months old when he received his official diagnosis. The neurologist advised me to get



my son early intervention, and get it fast! After the initial shock wore off, my husband and I moved into warrior mode. Over the years, Jake received (and continues to receive) countless hours of therapies. We have tried everything from supplements to social skills classes to cranial sacral therapy, and everything in between. He attended a private school program for children with autism. Now at the age of seven, Jake has been transitioned out of his private school into his home district with his peers.

Over the years Jake has tried every sporting activity we could think of. He took karate, gymnastics and music classes. We tried traditional sports, like soccer and t-ball, but Jake did not have any interest and would beg me not to take him. Finally, a friend of ours told us about a special needs ice skating program at Codey Arena in West Orange, N.J. Jake immediately took to skating and was soon asking to play ice hockey. Luckily, in the same arena, there was a special needs hockey team, The New Jersey Dare Devils.

The first few months were a bit rough, to say the least. Jake would spend more time trying to get off the ice than trying to learn the skills. However, when you asked Jake if he liked playing and if he wanted to continue to play, for the first time, he would say “Yes.” Finally, Jake had an activity that he had a passion for, looked forward to each week, where he truly fit in.

As the season progressed, Jake was referring to his teammates and coaches as his friends. The volunteer coaches, junior coaches, management and parents are the most caring group of people you would ever want to meet. Jake made a special bond with one of the junior coaches, Anthony. Each week he would ask me if Anthony was coming. As the season came to an end, I became concerned that Jake would lose some of the skills that he was working on, so I asked Anthony if he would be interested in working with Jake over the summer. I was thrilled when Anthony said he would love to.

Little did I know just how important their off-season skating sessions would become to Jake. Every Saturday, Anthony, a young teenager himself, met us at a local rink to skate with Jake. Each week, not only did we see more and more improvement in Jake's skating, Jake was talking more and more about his friend Anthony. On our last skating session for the summer, we were getting ready to go on our annual trip to Disney World. Jake and Anthony sat in the back of my minivan for a bit and held the most amazing conversation. Jake was recalling all of his favorite things about Disney and telling Anthony all about them. The conversation progressed so naturally. Anthony's father and I just stood back in amazement. Jake was so comfortable with Anthony. On the way home, I asked Jake what he was telling his coach Anthony. Jake responded, “Mommy, my friend Anthony.”

When you have a child who has autism, you live in a world of highs and lows. You live in a world where your child does not have many play dates, if any. You don't take things for granted and little moments are more special than the obvious huge ones. Thank you, Anthony, for what may have seemed to be a little moment, but in actuality, was one of the most amazing days of Jake's life