Independence is our goal!

Last spring break, when my son and I were en route to Salt Lake City on our way to the National Ability Center ski program in Park City, UT, we sat in front of a representative from Nike Shoe. I talked to him about how amazing my son was and yet was still dependent on parents or an aide to tie his shoes for him. And low and behold, Nike was already working on this, a shoe called the FLYEASE. Another really important piece of the independence puzzle for people with disabilities–shoes that work for people with motor challenges! Click here to read about it. The shoe was inspired by a teenager with cerebral palsy that wrote a letter to Nike asking for their help in creating a shoe that he could put on himself once he went to college. It’s a great story.

My son has since learned to tie his own tennis shoes, which as a teenager, is a great great victory for all of us. It means he is less dependent on an aide or a caregiver for getting dressed. He still wears all elastic clothes because zipping and snapping are difficult with his low motor planning, but he can now get his shoes on himself. Last year, he bought his very first pair of lace shoes.

Anyone with a disability can probably relate to my son’s sense of accomplishment when a new task that has been very hard to accomplish (years of occupational therapy spent trying to master this skill) is finally conquered. The first time he was able to tie something was on a hoodie he was wearing. We were in a restaurant and he screamed, “Mom, I am cured of my untying!” We are so proud of him!

 

Love this blog on wheelchair travel

Check out this really well written blog¬†about traveling in a wheelchair. What a great guide. And the layout of the site is just beautiful. Puts my little diary-like blog to shame. But, it gives me something to go for in the future. It also encourages me to get more opinions from my son as he grows up. He was a small boy when I started the blog and not one to have many things to verbally communicate. He’s made more and more strides in the last 5 years that I want to have a he said/she said blog post in the future. I do get his opinion but I’d like his voice to come through more clearly in future blog posts.

Happy Travels!

New York, New York

One place I’ve always wanted to take my son, who loves art, is to New York City. But, my goodness, the sensory challenges. And now, with the 25th anniversary of the passage of the American with Disabilities Act, the Metropolitan Museum of Art is highlighting its programming for people with disabilities. I am very very curious if anyone has experience going to the museum with an autistic child or adult. It’s a loud place, I was just there, on a solo trip in May. But, the art. Oh, breathtaking.

Austin City Limits Music Festival

My son, who is normally very afraid of loud noises, has asked if he can go to this year’s Austin City Limits Music Festival, known as ACL. I bought us two tickets. I have earphones. I have toilet paper (porta potties, yuck). What I don’t have is a plan.

I’m not even sure where to start. I’ve tried calling the ACL number listed on their website and it’s a recording for the music promoter that’s handling the ticket sales.

I need to talk to someone at ACL to see if they have some suggestions about how they accommodate people with disabilities at such a loud, crowded event. I’m really most concerned about the food issue, as my son is on a gluten-free and dairy-free diet for his autism. They search backpacks when you enter, so I can’t just waltz in there with his day’s food without talking to someone. Also, it would be ideal if he could hang out somewhere away from the music without having to leave, like a volunteer tent or something like that.

I know, I know, it sounds crazy to even try, but when my son wants to try something, I really go into action mode to make it happen. Perhaps we’ll get close to the gates and he won’t be able to manage the noise and crowds. Well, then, I guess this experiment was $180. I give him a lot of credit for even wanting to try.

My next steps are to call the City of Austin ADA department to see if they have any ideas. Do you have any suggestions, dear reader?

I’ll keep you posted.

ACL Festival and autism–Do they mix?

I know that ACL is technically ADA compliant, but does that mean that people with disabilities can enjoy themselves? I went to the Austin City Limits concert last weekend and it was amazing. In addition to seeing Fun. and Vampire Weekend, my secret mission was to determine if my son with autism could attend. He loves music and he loves spectacle, but I wondered if he could manage the crowds.

My initial diagnosis–no. I don’t see how he could handle the crowds. I hadn’t been in 10 years, and the throngs had grown from 30,000 to 75,000. Shockingly, most everyone there was pretty chill, so it wasn’t the type of people that I thought he could not manage, it was just sheer numbers. I thought “This is a really mellow 75,000 people, not crazy, just jam packed.” But, still 75,000 people.

I’m bummed he cannot manage it because I think he’d LOVE it. He would just be jamming out and loving life.

What are other people’s experiences with the ACL Festival and autism? With ACL and disabilities? Do they mix?