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!

ACL Rocks!

Well, we finally did it. We managed to make it to ACL (Austin City Limits Music Festival) and enjoy it without a hitch. My son and my husband enjoyed the Monsters and Men show on Sunday afternoon at the last day of the ACL Festival. Also, if you have a disability, there is an ADA station that you can go to near the entrance to the festival where they have ADA porta potties that are locked and only for people with a disability. They also provide you with an ADA wristband, and if there is room, you can watch some of the bands from an ADA access stage.

The one hiccup is exiting the festival. Once my son is done, he’s done. So, we needed an exit that didn’t require fighting our way back through the huge crowds. To hopefully figure out a solution, I wrote a letter to the ACL festival after we went and asked about next year’s exit plan for people that have autism and need to leave from another exit without fighting through 70,000 people to get back to the one exit gate. The promoters said they would look into this issue for the 2016 concert. So, we’ll see.

I never thought ACL would work, but my son asked to go, he said, “Pretty please, por favor.” So, how could I refuse such a polite request?

My philosophy on outings is…I just try different events with my son and sometimes they’re just not fun and we leave early, and sometimes, with the right supports, we can make it 20 minutes or an hour and that makes everyone really happy. When we left he was very proud of himself and said, “I made it through the whole concert.” Meaning, he made it through an entire act before leaving. We will be back next year!

Air Travel information

Trying to help other families like mine travel more easily was the reason I started this blog back in 2011. Air travel was the most challenging aspect of going on a trip for my son, so I spent a lot of time researching this area. Recently, the US Dept. of Transportation provided guidelines to airlines about travelers with developmental disabilities. To read the full document, click here.

Museums meet the needs of more diverse disabilities

I’m excited by the recent additions of more and more programs offered by cultural institutions to provide services to differing types of disabilities. For years, ADA has meant wheelchair accessibility, and that’s very important, but also important is meeting the needs of those with intellectual and developmental disabilities, those with visual impairments and other types of disabilities beyond providing a ramp into a building. Speaking from the perspective of a parent with a child with autism, I can tell you that my son benefits ENORMOUSLY from cultural institutions like libraries, museums, and concerts when he can manage the sensory issues. I’m happy to share that our local museum the Thinkery here in Austin has provided several days a year specifically geared to the needs of children with autism and other sensory issues. It’s a great way to enjoy things that typical families take for granted. We all want our kids to enjoy being kids. These community initiatives allow us as parents to help provide that. If you know of a good cultural program that benefits people with an intellectual or developmental disability in your city that you’d like to share, please feel free to add a comment and let us know about it.

Navigating Life in Texas

I have been lucky enough to work on a project for the State of Texas’ Health and Human Services Commission to help launch (in a very small role in a huge major multi-year effort) a new website that will help parents with children with disabilities and special health care needs find their way to services. It’s called http://www.navigatelifeTexas.org and boy, is it a revelation. There is so many ways that parenting a child with special needs is confusing and this takes so much of the guess work out.

If you know anyone that parents a child with special needs, I encourage you to have them visit the site: http://www.navigatelifeTexas.org.