Tag Archives: autism

Austin City Limits Music Festival

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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.

Flying with Autism

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Air travel can be tricky, for anyone. It’s particularly difficult for children with autism, as the experience is completely out of their control, flights are delayed or worse canceled, and add in the noise and waiting, and you have a recipe for stress. That’s why I’m always a bit nervous when we fly. Not so much that I’m not willing to take big trips, but enough to where I have developed some travel routines when I fly:

  • I always check with my airlines about bulkhead seating 2 days before departure. This is the time when the airlines are assigning these seats. Bulkhead seats are typically, but not always, reserved for passengers with special needs.
  • I bring presents on board that are small, but fun, that will keep my children occupied, I give these out every 15 minutes for long flights. I have traveled with 20 presents before.
  • I introduce myself and my special needs child to the attendant when we board, so that possibly, they will know who we are if I need to request something.
  • I bring tons of headphones, videos, books, art materials, snacks, stuffed animals, and basically try to keep my children engaged the entire trip.
  • I have a story written with pictures that describes what we are going to do every step of the trip. (Google Carol Gray Social Stories for more information)
  • I hope for the best and plan for the worst. I have a first aid kit with me for minor health complaints. I don’t want my son crying in mid-flight because I didn’t have a band-aid on me.

We have been flying for years now, and except for one loud yell on a flight about 3 years ago that I think was related to a stomach ache, we’ve made it through hours of flights with no incidence.

Much of this is attributed to our work to prepare for the flights, but also, much of the experience is in the hands of the airline and the other passengers. If they’re helpful, we stay calm, if they’re rigid, we get nervous.

Our most recent flight was with American Airlines and they were absolutely great. We’ve also had good luck with Delta. I always call the airlines ADA number before the trip and list our son as disabled so that when we check in, they’re aware and allow us to pre-board.

I hope all of this information helps you on your next flight. What are some ways that you travel with your children with autism? I’m always looking for new ideas.

Sleep Away Camp is a Dream Come True

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I never dreamed my son could manage sleep away camp. His autism used to impact him so severely that he wouldn’t leave our house for days at a time if there was cloud cover. He hated gray skies. And now, he was a part of a camp experience (as an inclusion camper with a 1:1 counselor) where every other week, they went out of town. And this camp was not special needs camp with specially trained counselors and an itinerary with sensitivity to autism. This was for typical children and wouldn’t have the kind of daily structure that his brain craves for a successful experience. But one day recently he said, “I want to go on the camp overnights.” Dumbstruck I asked, “How will you handle this?” And in a very nonchalant way he said, “I’ll be fine.”

I’ll Be Fine.

Oh my.

For years we’ve managed his every new experience, through writing social stories (copyright Linda Gray), prepping him, preparing his caregivers, having lots of options if Plan A doesn’t work out, you name it.

And now, in early teenage years, he’s telling us, he’s fine.

And he was. We held our breathe, packed him up and let him go. For days he had to wander around San Antonio doing what the group was doing, managing the sounds, the sites and the smells of a large group of middle school kids. None of whom had autism. My son was the camp’s first overnight camper with a disability. He is breaking barriers, and more importantly, changing hearts and minds about what people with autism are interested in doing. Autism for him means not talking to others much, but he likes to be with others. That’s his brand of friendship–presence.

The week wasn’t completely glitch-free. On the last night, the counselors, not trained in autism tantrums, accidentally made the group late for a concert that my son was excited to go to. When they were late, he threw a pretty big fit on the bus, but recovered once they arrived at the concert venue. I think the counselors learned, “don’t be late!” as a primary autism imperative when traveling.

When he triumphantly returned home, I asked, “How did you do that????!!!”

And he said, “I just stayed flexible and survived the heat.”

 

Rumi reimagined

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rumi133528

My son is very gifted artistically. In fact, I’m working with a dedicated group of volunteers to launch an art website for him where we can help him one day support himself through the sale of his art. Here’s what he has to say about his artistic approach.

“I am like Rumi. Sometimes, I paint in the way of Rumi.”

If you are not familiar with the works of Rumi, a 13th century poet, mystic and so much more, I encourage you to learn more here.

Website for my son’s art will launch in Fall 2014.

Enjoying nature in a Walmart parking lot

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In a Walmart parking lot today, my son went over to a lone tree in a tiny “island of green” in the midst of a sea of concrete. He then straddled it, wrapping his entire body around it. It looked pretty odd for a large boy to do this to a tree. As he was getting the usual stares, I hollered at him to stop it and to come over to me and explain himself. When I asked him what he was doing, his reply was: 

“I was hugging the tree.”

Why I asked.

“Because it’s so wonderful.”

Some days, my son’s autism really does draw so much attention to us. He is in his own world just dancing around and being joyful and loud (that’s how his autism manifests itself), and I and his therapist and teachers are always trying to get him to conform to societal norms so that he will be accepted in society. Well, today I realized, sometimes it’s just wrong to pull him into my world. His world is so, well, wonderful.

 

 

Ski trip teaches confidence and courage

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It’s been three years since I had the budget or the time to take my son snow skiing in Park City, Utah, at the National Ability Center. And it’s expensive to get there from Austin, so this is a pretty big chunk of change just to ski for four days. But, after it’s over, I cannot imagine not having this experience for him. He’s super excited to go and it’s one of the only things that makes him spontaneously talk to people at school.

He’s still enthusiastic when we get home and his teachers and therapists all report that he is more social before and after his ski trip because he has such great memories of the trip and is motivated to talk because of this experience. For someone with autism, it’s a pretty big deal to initiate conversation and this is one of the only topics that seems exciting enough for him to overcome his speech disorder and social anxiety and plunge into having a conversation. Thus, ski trips seem expensive and frivolous when there are therapy bills to pay, but for our family, it gives us a chance to let our son shine in a way that he rarely does–socially.

Each morning as we left our condo to “hit the slopes,” he would gear himself up by saying, “Now I will gather my courage.” So, even though it was scary to him to try skiing, he conquered those fears and followed directions well. Also, he just adores Park City, Utah. When asked how he liked his ski trip, he said, “It’s like we are in a living heaven.” So, I think it’s pretty worth it to him as well.

Trip Tip: If you do go to the National Ability Center, make sure to book your child’s lesson far in advance, as far as you can, because I booked three weeks out and was on the wait list until we got there and almost did not get a lesson. The Center teaches skiing and other winter sports to children and adults with physical and developmental differences. Lessons are very reasonably priced, but it’s just the cost of getting to an expensive resort that will set you back financially. If you live in Utah, lucky you! And a final note, if you think your child will have problems with focus while skiing (pretty dangerous to lose your focus if you’re on skis!), ask the instructor to use the tethers and safety harness. Not every instructor likes to do this because they want to teach independence, but I wanted my son to ski safely more than I wanted him to ski independently. I’ll post a video next post.

Link

“Traveling with Autism” article in the Austin American-Statesman

I wrote this article a few years ago about the challenges of air travel with my son who has autism. Those of you with kids on the spectrum know that routine is pretty important. Air travel offers very little guarantees on routine. So, with this in mind, I’m going to re-read my own article as I am heading out next week with just my son, leaving my husband and daughter at home. Hoping for travel mercies! And good snow. We’re going back to the National Ability Center in Park City, Utah. More to come next week.

Trail of Lights–Better late than never

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trail of lights

Well, I’m running about a month behind on this post, but didn’t want to let the year go by without saying that The Austin Trail of Lights has special needs accommodations and we found the event to be a really great experience for our son with autism and our typically developing toddler.

The event was a success because they had early entry (around 6:15 p.m.) for anyone saying they had a special need, or at least this is what the organization told me when I wrote them an email asking about early entry, or special entry. However, I didn’t take any chances, and went ahead and bought the “fast pass” parking called the ZiP pass and the ZiP pass entrance, which allows you to enter 45 minutes before the big crowds of people and at the same time as the special needs visitors. I highly recommend this ZiP pass if you can afford it. I was told in an email from Trail of Lights that anyone with a disability could enter at 6:15, but when we got there, none of the volunteers were familiar with this, so I’m glad that I bought the early entrance package for $60. (I think that’s how much it was, if it was a little more, it wasn’t much more.)

My son cannot handle large crowds, so I went expecting to just leave right away, but the early entry allowed us to enjoy this experience together and I was so thankful for it. If you have a child with special needs, you know that it’s sometimes hard to find activities that you can do as a family and I was so grateful for the magical experience we had together at the 49th annual Austin Trail of Lights in Zilker Park. We will make this an annual visit as long as their are special accommodations. Without it, I think it would prove too challenging to wait in long lines and be so crowded while looking at the colorful displays.

So, now you’ve got 10 months to plan your visit for the 50th anniversary Trail of Lights coming in December 2014.

New Thinkery Museum is amazing

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I took my son to visit the new Thinkery Museum, formally Austin’s Children Museum, at a special Members event and boy was it a blast. There is 40,000 square feet of things to do, climb, create, draw and learn. What an improvement over the previous downtown Children’s Museum. The official opening is December 7, 2013. It’s just a great space for roaming around.

Currently, it does not have any special program for autistic individuals but I did speak with museum staff while I was there and they said that “sensory” days for special needs kids were in the works. I will keep you posted, dear readers. I also recommended that they speak with Dr. Wendy Ross, developmental pediatrician out of Philadelphia, PA, and one of the country’s leading experts on museum and airline accommodations for children and adults with autism. They are looking into accommodating kids like our kids in the future. We’ll see. But the space is just great, so I’m hoping that they are indeed able to find ways to incorporate autistic kids into the museum experience and really let their minds find new ways to experience the world.

Even with a crowd of wall-to-wall kids, here’s my son’s review of the Thinkery:

“It was really fun and really creative and I just played in it and it was so much good.”

If you want more information on the Thinkery, check out their website.

ACL Festival and autism–Do they mix?

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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?