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.

Touring the Capitol for Autism

As a parent of a child with autism, I have taken many “trips” to the Texas Capitol building, and it is a gorgeous structure to tour. However, I’ve never been there as a tourist, not once in my eight years of trips as I’ve always gone there as an autism mom and advocate. I’ve testified at every session since 2007 (the first session that I knew my son had autism) on legislation related to disability services, special education and access to autism therapies. I have seen many interesting nooks and crannies of the Capitol building during my now eight years of autism advocacy and learned a thing or two about how laws are made and how advocates working together can make a difference.

I started my efforts with the 2007 Session working to get laws passed for the coverage of autism therapies and now just finished testifying at the 2015 session, again in support of access to autism therapy. One of the things that I learn is that slowly oh, so slowly, does autism law change. But, the few laws I’ve been able to see change have been well worth it.

This year I was speaking in defense of funding that is certain to be cut, and that’s a real shame, because my own child has benefited so greatly from the type of therapy on the chopping block–funding for Applied Behavior Analysis (ABA). ABA can help children with autism gain speech, reduce tantrums and allow them to more fully participate in life by helping them overcome some of their anxiety that keeps them homebound. I testified, not because my son would likely use this program, but because other children in the state need this opportunity.

I know for my own son, ABA helped him immensely. He’s able to leave our home, attend school without tantrums (well, very few) and speak in sentences, all things that were impossible to him 8 years ago. I’ve even asked him as I’ve watched him excel in school and manage his tantrums, “How did you accomplish so much?” and his answer, “the therapies worked.”

Sometimes the best trips are those not taken

In 2013, we were able to manage and enjoy the Austin Trail of Lights at Christmas time. It was a wonderful experience for us and really made our family feel like we had turned a corner in our son’s autism. It was something that for years he could not manage and then through buying a FastPass and paying extra to enter early, we were able to stroll through the lights and displays joyously as a family. For those of you who have autism, you know that getting to be out in public can be a challenge and this was a big event for our son. He loved it.

So, we eagerly bought our tickets to the 2014 trail event. However, our day that we chose, was cancelled and we were given the option of attending on the weekend to make up for it. And we just thought as a group, “no, that’s too crowded” to be fun. So, sometimes, you make the decision NOT to travel and that’s also a good part of the journey. Instead we watched a Christmas movie on TV at home and baked cookies and this activity still felt plenty festive.

We didn’t consider it a “failure” that we couldn’t attend, just a change in venue for our family party. Also, my son was very flexible, although disappointed that the evening we had tickets for was cancelled. So, that was another big step on our journey in autism–learning and accepting changes to our travel plans.

Have you had a time when NOT traveling was actually the best idea for your family? Leave us a comment and share your story.

Lady Bird Johnson Wildflower Center

On Black Friday, while millions were flocking to the malls and superstores for deals, my family relaxed at a beautiful Austin location–The Lady Bird Johnson Wildflower Center.

famgarden_nowopenImage from Wildflower.org website

The new “Luci and Ian Family Garden” is just wonderful. In fact, my son says it’s like “A Village of Wonder!” He could have stayed for a few hours which is really saying a lot because we normally just spend around 30 minutes at most places due to the usual cuprits–crowds, noise, or boredom. While we were there, he was wandering around and exploring and really grooving on the beauty of this new addition to the Wildflower Center. It’s “autism friendly” because there is just so much space to roam and no prescribed way that visitors are expected to interact with the park. This kind of natural setting + open areas = our most successful outings.

Also, as a bonus for the entire family, the Lady Bird Center boasts a restaurant. It’s small and quiet (perfect for keeping sensory overload at bay) and has several gluten-free options. Nothing specifically gluten-free, but there are options, like baked potatoes, salads and chicken dishes. From this limited menu, we were able to cobble together a very healthy meal for our son who is on the gluten-free, dairy-free diet that many kids on the spectrum live on.

On the Autism Friendly scale: Our family gives this family field trip location a BIG thumbs up for beauty, calm, and best of all, wonder.

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.

Flying with Autism

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.

San Antonio Way

As San Antonio is within an hour or so of our house, it is one of our favorite (and easiest) vacation destination. Each summer, if my son has “earned” it, through reaching his behavior goals (don’t tell him, but we arrange it to where he is always able to earn it!) we travel to a close-by hotel for a night away.

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La Cantera Resort, San Antonio, photo from Destinations Resorts

This summer, as with last summer, the travel fates smiled upon us and I was able to find a Groupon Coupon for a $149/night room mid-week at this gorgeous resort–La Cantera Resort, San Antonio. 

We swam, ate by the pool, took a beautiful nature hike on the hotel’s trails that wind around the golf course (NOTE: These trails are not ADA accessible.), and enjoyed a spa treatment. Yes, you read that correctly. My son requested a spa treatment “for a man” he said. So, we used the WoodHouse Day Spa services that are right on site. They were able to accommodate a child with special needs as long as I was present in the treatment room. My son chose a calming 30-minute hot oil scalp massage ($45). He was in heaven. It seems extravagant, but truly, it calmed him so much that it was worth it. Those of you with autistic kids know that calming their minds and bodies is a big part of the experience of parenting our special children.

We were able to secure a late check-out the next morning and then sadly said goodbye to our 24 hours of bliss at La Cantera. Hasta next summer La Cantera! 

Sleep Away Camp is a Dream Come True

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.”