New Nonprofit for Special Needs Travel

One of the special needs travel discoveries I made during 2017 was the existence of a travel company and nonprofit in Central Texas focused on serving families that care for a special needs child.

I learned about this incredible resource at an Autism Treatment Forum meeting where the group heard from speaker, Karen S. Duncan, MS, about her nonprofit organization, AWADAE (Adventures with Autism, Down Syndrome and Epilepsy). Ms. Duncan is a certified travel counselor who created AWADAE to help special needs families have the chance to travel together as a family. She arranges trips that pair therapists with families along with any other wraparound resources that a family might need to make their trips run smoothly. Currently, Ms. Duncan is focused on cruises and tours for these adventures.

Recently, I got a chance to sit down with Ms. Duncan for an interview, and I will be sharing more about this important nonprofit in future blogs.


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.

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 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.

Trail of Lights–Better late than never

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

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?

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?

Going to California, someday

My son has been asking for a trip to California ever since he realized that both the Ellen DeGeneres show and Disneyland were in the same area. Ellen’s show was one of the first things in the “outside” world that really captured our son’s interest and he used the Ellen show to slowly add social components to his life. You ask, “How can a talk show host help someone with autism?” Well, read the open invitation that I sent her to attend my son’s art show. I have taken references to town and his name out, to protect his privacy. P.S. Ellen did not come, but we still think that she will reach out in some way once the letter makes it way to her.

Dear Ellen,

I write this letter to let you know how very much you have meant to my son who has autism and has enjoyed and actually benefited from your show. You have been like one of our therapies and a big part of the astounding progress he has made in the last several years. He has made so much progress in communications and social abilities that we are having an Art Party to show off his creations. An Invitation was mailed to your offices today for tomorrow delivery.

Diagnosed with autism at age 4, my son’s first several neurology appointments were not very promising. One doctor said, “He’s my smartest child living deep in the bubble.” Meaning, very little could get his attention in our world, because he was so thoroughly enmeshed with his own. At 3, he didn’t speak, he was unable to sleep through the night, never answering to his name or paying any attention to other people. He would run off and scream if he was scared. I had one therapist tell me she was not sure if he would ever speak. We just redoubled our efforts and prayed and cried and searched for answers.

By age 6, after two years of intensive therapy, he was diagnosed at Johns Hopkins as High Functioning Autism. Since there is no known cause or cure for autism, parents are left trying to figure out how to help their children. We were encouraged to try play therapy, keep up the other therapies and to work to bring him more into our world, and less obsessed with his own interior world. Most therapeutic literature advises you to find the thing your child loves and to join him/her in their world and try to coax them more and more into ours. Little did we know that a TV talk show host (YOU!) would be one of the main things that our son gravitated toward as he continued to make progress.

He has been in therapies since age 4, lots of them—physical, occupational, speech, behavioral, social and on and on. We’ve spent a small fortune. But, it’s worth it. At age 5, he said his first complete sentence, “I am Jewish.” (we are not Jewish, he decided that he was). Then, he progressed to other very important milestones, but still the social awareness lagged for us. Out of desperation and at the urging of a social behavioral therapist, I started spending the afternoons after school watching TV with him. Oprah was just going off the air at this time and your show was moved from the mornings to our afternoon TV lineup.

And once he started getting to know you, he loved you. He would kiss your face on our TV screen. I think he might be more dedicated to you than Portia. At one point, he would tell anyone that would listen that he was going to marry you. (I have not explained that one yet.) He would get very jealous if you had other male children on and pout, “I am not Ellen’s favorite boy anymore.” He would scream with laughter at the “What’s so Wrong with these Photos Photos.” And he would not understand why he would get in trouble for saying words that he saw on your show, (Something like “Assman Funeral Home” or some other bad word he saw and repeated from “What’s So Wrong” segment got him in trouble at school) He never grasped why he was in trouble if he repeated something he saw on your show. His defense to “why did you say that?” was always, “I learned it on Ellen” thinking this was the perfect answer.

After you interviewed Johnny Depp a few years ago for Tim Burton’s Willie Wonka and the Chocolate Factory, he drew a picture for you. I had a poster made for you and mailed with your invitation to the Art Show.

Art has always been the world that he spent the most time in before he could speak. He would draw from 2-5 a.m. from the ages of 2-4. He would draw every second that he was not in therapy or school. I have saved many of these drawings and they really express his inner world well. For that reason, he has been begging for an art show (he requested Austin’s Blanton Museum or NYC’s Metropolitan Museum) and for his birthday, I rented a room at a restaurant and we are having a show. We hope that you can come. Portia is invited too. An invitation was mailed to your offices today.

To our son, A.E. (After Ellen), there are two types of people in the world, “People that like Ellen” and “People that do not.” One of the only questions he used to ask someone was, “Do you like Ellen?” Not, “How are you?” or “What is your name?” but launch right into trying to figure out if this was a person he could talk to or not. The deciding factor was always you. If they didn’t like you, he would not continue.

I know you have bigger fans, but you probably don’t have fans that have you as a part of their window to the world from inside their autism. Our son has used you and your show as a way to connect with others and to understand the larger universe (although some of your material is not how he should understand the universe because he’s so literal and you are a comedian). He even got in trouble at an art museum for dancing behind people like you suggested. He always does whatever you say to do. So keep it clean and legal, please!

We are forever grateful for the role you played in our child’s development. Who knew you were an autism therapist in addition to a comedian?