Adults With Autism Look for Programs To Help Them Adjust To World « CBS Philly

Adults With Autism Look for Programs To Help Them Adjust To World « CBS Philly

When a Good Day Turns Bad

I think all of us with autistic children can agree that a good day can turn bad in a split second. No matter how much we try to prepare, no matter how much we try to structure our child's day into something they can deal with, the truth is we can't control the world, and when you have a child with sensory issues, it truly is a big bad world out there. It often seems like no matter where we go, there is some horrible noise that Dylan can't tolerate. I had an appointment at the DMV last year to get an identification card for Dylan, so that we could get a handicapped parking pass for him, and they were drilling at the DMV, doing remodeling or something. What are the odds? As though the DMV isn't bad enough!!! On every vacation, we seem to encounter a maid vacuuming in our hotel every time we attempt to walk down the hall, or the carpet cleaner, or we go to use the resort pool and someone has an electric hedge trimmer, you get the picture.

Dylan was in a fantastic mood this morning, but as we crossed the street to go to school, a man on a riding lawnmower was just about blocking our path, with no alternative route. I always find myself thinking all sorts of nasty thoughts directed toward these people (why do they have to mow while everyone is coming to school, don't they know some people can't tolerate that noise, how rude to be mowing right by where we are walking) when, in reality, I know this is just a person doing their job and 10 years ago I would have made my way around him and not given it a second thought.

So now we have a good day turned bad. Dylan doesn't cry over sounds anymore, but he becomes quiet and retreats into his own world. When we got to his classroom he walked in and put his headphones on before he even hung up his backpack in the outside hallway. At least he had a plan, I thought to myself. I explained to his teacher that we passed the lawnmower guy on the way in, and she nodded understandingly. It might be a rough morning.

Here is something we have stumbled upon that helps Dylan cope with his sensory issues. Dylan and I love to make up stories about characters that are fearful of certain noises. Once we make up a story we tell it over and over to each other and add a bit more each time around.

I'll talk more about our stories another blog post, but I wanted to share with you one he wrote the other day about a little boy named John, who thinks he sees an elephant in his backyard (where there is an elephant, there is a usually trumpeting elephant sound).

Wishing you all a peaceful quiet day!!!

Seaworld Guest Assistance Card for Autism

We recently went to Seaworld and had a fabulous time. We seriously cannot wait to go back. First of all, I went to triple A and got us all Seaworld fun cards, where you pay for one day but get to return as many times as you want for the rest of the year. We went on a Sunday, and even though there was a free concert that day, it seemed so much less crowded than Walt Disney World. Dylan absolutely loved it!!! We sat too close during the Shamu show, and got absolutely soaked, but even that didn't ruin his day. They have a new Antartica exibit opening at the end of May so we plan on going back soon after that.

One thing that really helped make the day and easier day for Dylan was getting a guest assistance card, similar to what you would get at Walt Disney World. When you enter the park, head to the left and go to the Guest Relations area. You will enter thru a door and go in a small room where they will ask the special accommodations you may need, and , in Dylan's case, they also measured him. We requested to use Dylan's stroller as a wheelchair. Here is what the pass looks like:

Disney World Guest Assistance Card for Autism

If you have a family member with autism and are traveling to Walt Disney World, you can request a Guest Assistance Card which is designed to help accommodate people and their family members who have special needs. This has been our experience with the GAC: upon entering the parks, you would go to the Guest Relations area which is visible upon entry. If you are entering Epcot thru the International Gateway from the Epcot Resort Area, they can assist you at the regular ticket booths. The person you are requesting the GAC for needs to be with you at this time. You don't need to give the cast member your family member's diagnosis, but you do have to request specifically what accommodations you need. For Dylan we have historically requested "stroller as a wheelchair" and "alternate waiting area". They will make note of this and also how many people in your party and how long you are vacationing at Disney. With this pass we can use the wheelchair entrance, which in our experience usually puts you in an air conditioned quieter setting while you wait to go on the ride. One time while attending Mickey's Very Merry Christmas Party, when Dylan was about 3, the person at guest relations denied our GAC saying because it was a special event we wouldn't need it. This was a nightmare because the park was in a gridlock shortly after and we had to leave without even going on one attraction. After I sent a 3 page email to Disney regarding our experience in detail, I received an apologetic phone call and park tickets for the four of us, which was a nice gesture, but I would have much rather been able to enjoy the Christmas Party while we were there. So, lesson learned, if a Disney cast member tries to tell you you don't need a GAC for any reason, ask to speak with their supervisor, do not take no for an answer.

All this being said, the way the parks are so extremely crowded anymore, we usually go on only 2 rides even with the GAC before Dylan has had enough, but it does help. Even under the best of circumstances navigating the Magic Kingdom and Epcot thru the masses can be a pretty grueling experience.

Rain Man - 25 Years Later

We watched the movie Rain Man the other night, hadn't seen it in years. Many of us saw this movie when it first came out in 1988, and I think it's fair to say we were both a bit shocked/ in love with the main character Raymond (Dustin Hoffman, Best Actor Academy Award). For many people, including myself, this movie was Autism 101, and even a doctor depicted in the movie admitted he had only heard about autism but never actually seen anyone with it. What made the autistic character of Raymond especially interesting was that he was an autistic savant, a condition where someone with an autistic disorder demonstrates abilities far in excess of what would be considered normal. In Raymond's case it manifested in an ability to count and do difficult mathematical calculations instantaneously in his head.

So where are we 25 years after the movie Rain Man was released? Well I think it's fair to say, the subject of autism seems to make it's way into the nightly news almost every evening. Some current statistics are saying that 1 in every 50 children has an autism spectrum disorder. If you don't have an autistic relative, chances are you have a friend who has a loved one that is affected. The days of autism being something a doctor may have only heard about but has never seen, are, unfortunately, long gone.

While I was watching the movie the other night, I couldn't help but wonder how Raymond's life would have been different if he had been raised in a loving home rather than an institution. Back then, it was commonplace to institutionalize children with disabilities, and sadly, parents were often pressured to leave them and even forget about them. ( you can read the story of Willowbrook here, but I warn you it's not for the faint of heart) I was also wondering how different Raymond might act if he had had early intervention therapies, or had attended a school that offered some inclusive settings with typically developing children.

We were joking as we watched the movie that we had to go in and check on our own little Rain Man and see what he was doing. Dylan is very good at keeping himself constructively occupied at home, usually by drawing, very similar to what the character of Raymond did in the movie.  Seriously, there were so many things the character in the movie was doing that reminded us so much of Dylan, it was pretty uncanny. I am very grateful that, 25 years later, we know so much more about autism strategies and therapies that can help provide a better quality of life for young autistic individuals and their families as well. However, as early intervention services for children have improved, services for autistic adults are still severely lacking for the most part. Let's hope that 25 years from now, we will be that much further ahead.

An Autism Strep Connection?

Many years ago when Dylan was being diagnosed, I remember filling out questionnaires and repeatedly coming upon the question of if I had a strep infection during my pregnancy (I did, strep throat). I cataloged  that in the back of my mind as yet another possibile cause of D's autism, but hadn't thought about it much since, that is, until recently, as the events of the past few weeks have unfolded.

Dylan woke up one morning with terrible leg pain. It got so bad he became almost unable to walk. Blood work revealed his inflammatory markers to be 3.5 times higher than normal. The doctors were at first thinking septic hip, and he was admitted to the local hospital and then the next day taken by ambulance (photo) to the Disney Children's Hospital in Orlando. They were planning on possibly doing MRI's, Bone Scans, and fluid extraction, but were undecided and in a holding pattern, because Dylan wasn't running a fever and his leg even started to improve a bit. Then, in what seemed like an episode of "House", some new bloodwork revealed an explanation where none of these test would be necessary. The problem with Dylan's leg was a case of post strep arthritis. Currently we are waiting for results from some heart tests, but even if they come back fine, Dylan will have to be on antibiotics for at least a year. I am happy to say he is doing well and seems to be walking normally now (even though his normal "walk" is anything but normal).

Apparently post strep arthritis is very rare. With that in mind, you can imagine my surprise when my friend Susan Senator, the wonderful author and autism advocate, reminded me the other day that her son Nat, who also has autism, had post strep arthritis when he was 10 years old. ( She had written about this in her first book) It had manifested itself in exactly the same way, with doctors also thinking Nat had septic hip initially. I have to wonder if this is just a weird coincidence or something more, some sort of susceptibility an autistic child might have. Just another reminder of how little we really know about how autism affects the brain, and the body.

A Special Artist in the PTA Reflections Contest

Here is my dear friend Mary and my son Dylan last night at the Daytona Beach Museum of Arts and Sciences. Dylan was receiving an award for being a county winner in the PTA Reflections Contest, in the visual art category, and his drawing is now moving up to the state level. The theme this year was "The Magic of a Moment" and Dylan drew the sun setting in St. Augustine, one of his favorite places (if we don't stay at a hotel with a snoring dad, but that's another blog post).

Dylan knew we were going to the museum last night because people enjoyed his artwork, but I don't think he really understands the concept of "winning" a contest for his art or that his artwork was chosen over others. With that in mind he quickly got the idea that we were going to the museum and he would draw for everyone. He said he wanted to draw "Baby Monet" which is one of his favorite Baby Einstein logos. I let it slide because I didn't want to sour him on the idea of going. He went and got out his suit that he wore on New Years Eve, and he insisted on wearing it, tie and all.

When we arrived at the museum everyone was already in the auditorium. I somehow had it confused and thought that the reception part was first. The winners were supposed to sit down separately from their parents but when I said he needed assistance, the woman in charge kindly looked at him and said, "Oh, you must be Dylan."

Sitting down in the front with Mary and I, Dylan was behaving beautifully. It was funny though because everytime a camera flash went off, even as we were sitting there he would very loudy say "cheese" (you just can't prepare for everything). When everyone clapped Dylan clapped along robustly. I would say there were about 10 adults on stage including the man who ran the museum and the superintendant of schools. A few of them started giving "speeches". After about 15 minutes I looked over at Dylan and he was quietly crying but trying to keep it together, just tearing eyes that he was trying to wipe with his hands. Truth be told it was after 7 pm and we had both been up since 5, and I know that it wasn't at all what he was expecting. Instead of trying to console him, because he wasnt disruptive I decided to let him suck it up and we rode it out. I whispered to him that it wouldn't be too much longer, but that was all. Finally we had to walk up the dark stairs to the back of the stage so we could come out when they called his name. While up on stage, he had to go down the receiving line and shake everyone's hand, which I am embarrassed to say he hasn't had much experience at. So, with my help, he did shake everyone's hand and they would say "congratulations", and he would respond by saying "congratulations" back to them. It was obvious he was trying to be big, and gracious, and he knew he was supposed to say something but wasn't exactly sure what. He received a lovely certificate and a gift card to Barnes and Noble. I don't think Dylan understands what a gift card does, so hopefully we can work on that this weekend when I bring him there to spend it.

I'm pretty sure he thought we would get to leave at this point, but we sat down again and the museum curator started giving a speech. I noticed the silent tears resumed so I motioned to Mary and we decided it was time to go. In the reception area, there was a lot of delicious food and Dylan immediately grabbed a huge cookie and suddenly looked so content again. Mary and I made ourselves a couple plates of food and off we went with our food "to go."

On the drive home Mary and I were discussing how great Dylan did, he had no idea what to expect and I know the setting stressed him, but he really kept it together and even displayed some social grace. I figure there will be more art awards for him down the road so he may as well get used to it!

Dylan drew his award winning entry on his ipad, with a program called drawing pad, and using his finger. He drew it in only a couple minutes. It never takes him long to draw because he always seems to know EXACTLY what he wants to do!!!

Special thanks to my dear friend Mary for coming with us!!! Love you Mare!!!

Every Picture Tells a Story.....

Welcome to my new blog! Here is where I will share some stories and adventures of my 8 year old son Dylan. He is an amazing little boy and there is so much I want to tell about him. In this picture I'm guessing my little guy was around one and a half. Some other autism parents may see something familiar here. We are all enjoying Disney and Dylan is studying the layout of the bricks. His attention to detail was evident at such a young age. Unfortunately, at that time, it seemed to come at the expense of paying attention to the world around him. We knew at 15 months that Dylan was on the autism spectrum, having taken him to Dr. Amy Wetherby's First Words Project in Tallahassee, and Dylan was most likely starting to receive some Speech Therapy and Occupation Therapy at around the time the photo was taken. Those early trips to Disney were especially painful to me, as Dylan seemed oblivious to all the things that so delighted typical children. How scary and uncertain those days were. We had many people trying to prepare us for the possibility of him never being able to speak or draw a line on a piece of paper. I'm happy to report that not only can Dylan verbally express himself but at age 8 he is already an award winning artist. That amazing attention to detail is really paying off!! I hope you will continue to follow this blog as I share some wonderful past and present stories, and talk about what worked for him and what didn't. For the most, part, I will say that Dylan has done things when he is ready, and often that has seemed like magically overnight. What an amazing adventure it has been so far!!!