Tag Archives: autism

Going to California, someday

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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?

Staycation Vacation

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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.

Visiting Northern Outer Space

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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.

Austin’s Gluten-free, Dairy-free Dining Options

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Many kids on the autism spectrum are on special diets. I think one reason parents put up with the insanity of the gluten-free, dairy-free diet that autism doctors recommend is because there is so little else we can really do. Without biomarkers, we don’t even know what and where autism is in the body. So, diet is one thing we can control. I have seen some improvement for my son’s symptoms on the diet and each time I try to reintroduce dairy, my son’s agitation does seem to increase, so we leave it out.

But, when you’re traveling, having access to a kitchen and a specialty grocery store is rough. Luckily, Austin has plenty of options. Here are my son’s favorite places to eat:

1) Tarka–This Indian restaurant is a cheap, good place to get Indian food. Many dishes are made without cream or wheat. The staff is very helpful and understanding of differences.

2) Zen–When my son first started on the gluten-free, dairy-free (GF/CF) diet, I didn’t know where to go and we ate at this Japanese “food fast” restaurant almost daily. They know my son at the North Austin location we frequent and are willing to turn off their sound system when we’re there. I don’t know why restaurants even play music, it’s really nice when it’s quiet. I think my son improves the ambiance of most places by having them turn their music off.

3) Central Market salad bar–These grocery stores also have restaurants inside. We go to the salad bar for its selection and it amazes people at nearby tables to see a pre-teen boy eating seaweed and spinach salad. He really likes tofu and other foods that I don’t keep in the house, so it’s a win-win.

4) Chipotle–A chain of mostly organic meats and fresh ingredient Mexican food. My son and I were watching Oprah and came across a segment on how their food was locally sourced and the meats organic, and that was important to him. He’s funny. I never know what is going to impress him, but a restaurant with organic meat seemed to catch his attention.

5) Chuy’s–An Austin institution with locations across Texas now. This is harder for GF/CF options. Ask to talk to the manager to get a list of GF/CF items. There are few things on here that are purely gluten-free, dairy-free, but my son loves the carnival-like atmosphere and I love the margaritas. He says, “When you have a margarita, you will be in paradise.” He’s pretty dramatic, but he’s right.

If you have good restaurant options that are GF/CF in Austin, write a comment. We’d like to add to our list of options.

Five great places to go right now

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We are so blessed in Austin with abundant outdoor opportunities. I hate to generalize, but I will…I think most people with autism are calmed by nature. I have never seen my son throw a tantrum when we are hiking or walking or skiing or doing something active in a gorgeous natural surrounding. I’ve had lots of tantrums in my house related to media–can I watch more TV, can I watch that inappropriate YouTube video, can I keep playing angry birds and on and on. Therefore, when the weather is pleasant in Central Texas (this means not summer), there are lots of ways to enjoy what Austin has to offer. Here are five of my favorite outdoor picks:

1) Town Lake Hike and Bike–it can be a bit overwhelming with the crowds on a gorgeous day, but I find that looking at the lake and wandering around on the trail allows my son to get some much needed exercise along with allowing us a chance to look at downtown buildings and huge river cypress trees in the same view. The trails are free and accessible from the north and south sides of the lake.

From The Trail Foundation website, a view on the Hike and Bike.

2) McKinney Falls State Park–Located close to Austin’s airport in Southeast Austin, sits a little gem of a state park, McKinney Falls State Park. I try to head out there with my son before the summer drought because we enjoy wading and playing in the water at the “lower falls” portion of the park. The upper falls are really beautiful, but the lower falls offer visitors the chance to splash and swim in the portion of Onion Creek that flows through the park. It’s so close to Austin, yet feels so far away. There is no easy access to the lower falls for handicapped visitors. My son is able to walk without assistance and so can make the 1/2 mile hike over the rock formations to get to the water feature. Other areas of the park are ADA compliant. There are 7 miles of trails within the park and many of these are paved. There is a daily admissions fee of $6/per person, 13 and older.

3) Bull Creek District Park–There are lots of places to explore trails and falls within this Northwest Austin park. Here is a good map of the entire trail from austinexplorer.com’s website. We stick to the north part of the falls for it’s serenity. There are lots of neat things to see here, lots of frogs, fish and turtles in the water. Free.

4) City Park Beach–I’m not sure if that’s it’s official name, but that’s what I call it. Probably the only beach in the world with a sticker burr problem, Austin’s Emma Long Metropolitan Park boasts an actual beach on the frigid waters of Lake Austin. For a recent spring break, I took my son here every day and he swam up and down in the chilly water, while I waded with teeth chattering. This is actually a great place to go in summer when the outside temperature makes swimming more palatable. Sitting on the dock is peaceful and serene. There are loads of campers here during the major holidays, but during the week, you can be entirely alone with nature and of course the huge houses that sit right across the lake. I wish the city had bought that land as well so the view would be completely naturalistic, but oh well. There is a per car admissions fee of $8.

5) Art Park–This is what my son and I call the grounds of the Austin Museum of Art at Laguna Gloria. We will sprint over here on a school day before it closes at 5 p.m. just to take a 30-minute walk on the grounds. We hardly ever go in the actual museum, well, because my son wants to touch everything, and that is pretty much frowned upon. We enjoy strolling the grounds while admiring Lake Austin, the gorgeous Italianate-style villa originally owned by Clara Driscoll and the variety of sculptural works dotted throughout the property. My son and I love going here. It’s calm and cultured. The grounds are free to wander.

The Zoo is a Zoo

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Spring break is always rough for my son. I’m pretty sure he fits the usual autism profile of needing year-round school (oh, one can dream) and structured down time. It gets exhausting as a parent to run a week-long camp for a child with a short attention span, but if you’re going to survive the school breaks, you’ve got to do it.

After our spring break devolved from a much-anticipated ski trip to Park City (lingering bronchitis caused me to cancel), then to a stay at a Hill Country resort outside of San Antonio (reservations messed up our reservation), we settled on going to the San Antonio zoo for one of the days.

The San Antonio Zoo is celebrating its 100th anniversary in 2014 and it’s undergoing a great deal of new construction. It would be gorgeous and interesting if most of San Antonio had not also descended on the zoo on a stunningly beautiful mid-70s temperature Tuesday during spring break.

I would recommend not taking people no the autism spectrum to this zoo during spring break. It doesn’t have nearly enough space for the wanderings that people on the spectrum usually need and everyone is packed in there pretty close. It’s a great concept for neurotypical folks who want to be immersed in the experience, but not so good if you have autism and can get overwhelmed as my son was for our two-hour tour.

The zoo’s layout breaks a few of the cardinal rules for the needs of autism–there is no escape from the labyrinth once you’re in it. The African exhibits are great, but there is no “out of Africa”. Once you’re in this exhibit, you’re stuck and have to go all the way through it to exit. One of my cardinal rules for autism travel is, “Always have an escape route planned.” And the San Antonio Zoo, though lovely and interesting for typical brains, doesn’t provide this kind of leaving and returning that an autism brain sometimes needs to calm down and regroup.

And on this outing, I broke one of my own cardinal rules for autism travel, “Don’t visit places on the busiest days/times.” The zoo was packed that day for good reason–the weather was great and it was a school holiday. I have learned and continue to learn that you cannot travel with autism when it’s most convenient but when you have the greatest chance for success.

Because sometimes the zoo can be a real, well, zoo.

Traveling mercies

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Austin was lucky enough to have the touring Architects of the Air Luminaria interactive exhibit in our town and our son wanted to go. That’s the good news.

The bad news is the very very long line for this super cool experience. Friends, you know one of the biggest challenges of traveling with autism is difficulty with waiting. Oh, the waits and the fits and then the stares of other parents. It’s enough to make you want to stay home. But, this blog (and life) is about travel and adventure, so we prepared ourselves for a several hour wait. Bringing along an iphone loaded with games to pass the time, off our family went. We left an hour before the exhibit opened in hopes that we’d get a jump on the crowds. When we got there the wait was going to be around two, possibly three hours. So, wait and wait, we did.

Our son had even tried waiting the day before, standing in line with a therapist for an hour before giving up, unable to manage the crowds and the noise. He was determined to try again. I was proud of him for trying but not sure we could do much better. For more than an hour we walked and ran around and tried to entertain him. At one point, I headed off with my daughter and struck up a conversation with a lady out walking her dog around the park we were waiting in. I told her about our two-day attempt to walk inside the exhibit.

“Oh, there’s a line for special needs. I’m sure you can go up there and ask.” But seeing all of the people waiting in line, I didn’t want to “cut” even though our son was getting precariously close to giving up. While I was standing there debating with myself about asking for an accommodation, the dog owner (or was she our guardian angel?) strode up to the front of the line and got us a special needs pass. I let her. I never even got her name. When I went to retrieve my son and husband, our helper was already gone. I wanted to thank her and didn’t get the chance. I did get to thank the touring manager who O.K.’d our request but not the mystery dog walker.

I’ve had experiences like that before and it always make me certain that fate, or luck, or guardian angels is on the side of special needs families when they travel. Traveling mercies indeed.

My son, oblivious to the negotiations involved to get us near the front of the line said, “See I told you waiting isn’t so hard for me.”

So, what’s Architect of the Air exhibit anyway. According to their website:

“Each luminarium is a dazzling maze of winding paths and soaring domes where Islamic architecture, Archimedean solids and Gothic cathedrals meld into an inspiring monument to the beauty of light and colour.

The luminaria are designed by company founder, Alan Parkinson, who started experimenting with pneumatic sculptures in the I980s. They are made of a plastic produced uniquely for Architects of Air. Only four colours of plastic are used to generate a great diversity of subtle hues.”

When you step into the inflated “Luminaria” with its different “rooms” there is a wonderful glow from the colored plastic walls allowing light to filter in at interesting angles. One room has colored windows, like stained glass, and my son exclaimed in happiness, “Look at the stained glass. It’s a cathedral.”

My son was motivated to wait in line (not something he will normally manage) by his deep love and obsession with visual forms. The “Luminaria,” as the inflatable creation is known, looks like an inflated cathedral of colored plastic that you enter and walk around in (without shoes) or lay down in against the soft inflated walls. There is calm music playing in the background and the constant whoosh sound of the entire structure being inflated is quite relaxing. Listening to the music he said, “I hear beauty. I am in a lullaby land.” The whooshing and the near silence of the participants gives it a very spiritual feel. Or as my son said as we entered, “This is a new kind of synagogue,” and he got down and bowed in prayer. It was a beautiful mystical moment.

Thank you guardian angel of Austin for helping us have this wonderful experience.

All I want for Christmas is a passport

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Traveling with our son is pretty complicated. We have to write social stories, pack all of his food for his autism diet, and troubleshoot as much as we can with the condo we’re renting, to make sure that there will be no obvious problems for our son’s sensory issues.

We have gotten very used to doing lots of homework, preparation and mental jujitsu to manage our son’s anxiety when we leave our house. Each and every time is a challenge.

But, oh, so worth it.

Whenever our son has a new experience, he adds it to his creative world. And we are enriched from it. He speaks rarely, but when he does, it revolves around where we’ve been and where he wants to go.

When he was asked what he wanted for Christmas he answered with serious focus, “I want a passport.” Why? “So, I can go to faraway places.”

Oh, my wish is for the world to get flexible enough to handle our son’s autism and allow him to experience all that he wants in this world.

Santa did grant our son’s wish. Santa brought Jackson a passport application in his stocking. Now, we just have to figure out how to get him on an international flight.

National Ability Center

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We adore taking our son to the National Ability Center in Park City, Utah, for the week-long autism camp. They have a fantastic staff and programs. Plus, what’s not to love about Park City in the summer. When I told my son we were going this year, he said, “Oh, I’m a star at the NAC.” That’s why we go. There’s horseback riding, swimming, hiking and great opportunities to learn new skills. But, more importantly we make this trip for the feeling that he gets when we leave. As we were driving out of Park City last summer, a voice from the back seat marveled, “I cannot believe what a sports star I am.” My husband and I were overjoyed.

If you have a kid with autism and you can afford to get yourself to Park City, go. The camp is affordable, it’s the flight and hotel that costs you. If you are within driving distance, then you are, as my son would say, a “lucky dog.”