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.
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.
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.
“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.
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.
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.
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?
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?
Autism is challenging. There, I’ve said it. But, I still like to have fun, and so does my son. So, one of the best ways we can vacation is to staycation. To achieve that summer bliss, we enjoy spending a weekend in a local hotel–our favorite is the Austin Renaissance Hotel–and enjoy feeling very far away even though we’re close to home.
The last weekend before school is a great time to get away. Most people with autism need constant scheduling and consistent routines. Well, that is not what summer looks like. I try to book special needs summer camps that provide my son a consistent routine, but even with advance planning, we’ve still had four weeks this summer of very little structure. As a result, his autism-induced nervous tics have gone into overdrive. He’s coughed all summer from anxiety, not from a medical condition. Yes, friends, we’ve seen specialists and therapists about this problem, we are just waiting it out until school starts and his routine improves for this to get better. It’s a waiting game with his tics.
We both needed a vacation.
Thus, we decided that the hassles of an airplane ride and the exhaustion of packing up weren’t worth it and opted to spend the weekend at a close-by nice hotel. We swam, we lounged, we hottubbed (is that a word? it should be), we relaxed. It was really nice.
So if you think your family cannot handle the stresses of a vacation, what about the pleasures of a staycation? For us, it really helped us achieve the desired “summer vacation vibe” without spending too much money (I think $139/night is a great deal) or even leaving the city limits.
For years, my son has lived in a place he invented called, “Northern Outer Space.” I once asked him where it was and he easily was able to tell me, “Up where they stir the Milky Way, above that, there’s a door, if you go through the door, then you’re in Northern Outer Space.” He loved playing there. He made up an entire culture there, with a people, The Sut People, an indigenous people that had their own language. Somewhere in my house of papers, I have the alphabet he created along with schematics for the Sut Town Library and other municipal buildings. But what’s an imaginary land without a Super Villain?
He created a super villain, Rex, that was always fighting the good guys, The Sut People, along with my son, and his Northern Outer Space friends, Emma and Ulysses. They had YEARS of adventures, probably five years and it was always the most interesting thing if he would describe what was going on in Northern Outer Space. He rarely wanted to talk about it, but he was seeing the “movie” of it for years of his life while we went about our lives, he was off in Northern Outer Space adventures.
And now, it’s gone. Vanquished because I encouraged him to have things in common with other children in his age range, I encouraged, the now new obsession, Annoying Orange. In my attempt to make him more “typical” and fit in better with his peers, I drove away one of the most unique things about him–his imaginary world. Perhaps it was destined to be so. He probably shouldn’t live in there forever. But, sometimes, I feel a pull between helping him be more like other kids (“typical”) and allowing him to spend all of his time deep within his imaginary world, a place of relentless creativity. As my son professes to be an artist, I want to create a space for that to become a reality. So, am I making him less artistic by exposing him to outside peer-appropriate influences? I don’t know. I guess time will tell.
I guess all moms feel guilt, but I feel particularly bad about pulling him out of his imaginary world since it was such an incredibly alive place. As alive as any place he might visit in reality. Plus, creating is an important skill for life. Obsessing on an existing cartoon, not so much.
I asked him why he spent all his time with Annoying Orange now and he said it was because Rex had been vanquished and that was the end of the Northern Outer Space saga. But, I can’t help wondering, what are the Sut people doing, now that they no longer have to live in opposition to their sworn enemy. I asked my son what they were doing now and he said, “They’re just relaxing.” So, I guess Northern Outer Space would be a nice place to visit. Hopefully, he’ll choose to return there someday.
Travels with autism 