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.

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.

Growing Up through Skiing

For several years now, I’ve been taking my son snow skiing in Park City, UT, using a wonderful adaptive program called the National Ability Center. They have recreational therapists that work with people with various disabilities teaching them winter sports and running summer camps. I cannot recommend this program highly enough, although it’s popularity means you have to get your child’s paperwork in months in advance. My son started in 2010 and this year was his fourth time going to Utah during the winter.

Here’s an interview with my son about the experience.
What did you think when you first tried to ski this year:
“At first when I went on [the snow], I was very scared, but then was very worried when I was ready to go, but when I was already skiing, I noticed that I was still in contact with my guiding. I did try to keep balancing.”
Did you enjoy it?
“Yes I did. I was making sure I wouldn’t fall.”
What’s great about skiing?
“It’s just that it has a great sense of because I love the snow. But, this year there wasn’t enough snow. It was kind of snowless.”
Would you like to go back again?
Sure.