The Language of Autism

Autism is a unique affliction; it runs the gamet from causing mild speech delays to near total incapacitation, which is why it's called a Spectrum disorder. Children with a diagnosis of Autism are some where on this spectrum, and how they are affected can be amazing, and frustrating, and incomprehensible all at the same time.

Yesterday Jake and I took a trip to the grocery store. Jakey loves the store - he loves to "talk to the peoples" and look at all the stuff on the shelves and, well, SHOP! Although he's nearly six and weighs 55 lbs, Jake has just progressed to the point (within the last two months) where he can walk along with me instead of riding in the cart. Since he's started walking he rarely wants to ride any more, but yesterday the cool red race car shopping cart caught his eye and he wanted to hop in.

Our store has groceries on one side, and house wares, home and garden, etc. on the other side. As we walked in, I started to turn right to go to the garden center, and Jake said “NO, lets go that way!” pointing to the left toward the food. I said we would have to go to the garden center first.

After we finished in the garden center, we started heading over to the grocery section and I headed down the aisles which run north to south. Every time we'd turn down the east-west aisle, he'd say "almost there...a little more..." He did this for six aisles. "Almost there...a little more..." Finally we turned down the cereal aisle, and he said, “That one! That one!” and he pointed down the aisle which has the typical 1000 different cereals. I started walking toward his very emphatic pointing, and about half way down the aisle we got to the Apple Jacks. Jake has never had Apple Jacks, and since he has extreme food sensitivities to the point of choking and gagging on new things, I tend not to buy him stuff that he hasn't had. But Jake was adamant; "That one," he said, “I want that one!” I said, “Are you sure?? Because if I buy it you have to eat it.” “YES! YES! I want that one! It has game! That's cimmaninon (which is how he pronounces cinnamon)!” So I said OK, although I wasn't quite sure what "game" had to do with cinnamon. As I started to put the box in the cart Jake said, “NO! Jake box! JAKE BOX” so I turned it over to him.

Jake held the box the entire time we were in the store. Autistic kids will often grab on to something and seem to become obsessed with it - it could be a block or a crayon or a cereal box.
Usually when we are at the store, Jake will say "Hi!" to everyone that walks past him. Then each time he says "Hi!" he says to me, "I'm talking to the people!" It's thrilling for both of us on different levels, but for me it's really wonderful for two reasons - he is using the word "I", which took him a long time to master, and he is focusing on the people around him instead of his internal world. But there would be no saying "Hi" to the people yesterday, because Jake now had a cereal box! As we continued our shopping he was talking to the box, and I kept hearing "cinnamon game." I was distracted so I didn't stop and ask him what he was talking about , but just continued on to the checkout.

When we go to the checkout Jake put his box on the counter for the man to scan. The man looked at Jake and said, "Hi! How are you today?" and Jake replied, "I'm Jake!" And that's how this disease works - pleasantries that most children learn by the age of three can be lost on a person with Autism for years or even a lifetime.

We finished checking out and headed out to the truck, with Jake smiling and holding his box of Apple Jacks. After we got home Jake helped me carry everything in and then retired to his room for some quiet time. Although he loves to go out, anytime he is around people, lights, sounds and new sights, he needs some quite alone time to come down.

Some time later I was relaxing and I heard him opening something. “What are you doing? ” I asked. With that question he came running down the stairs yelling, “WATCH! I got WATCH GAME!” So I looked at what he was handing me, and sure enough, it was an XBox game that you wear on your wrist like a watch. I took a brief look at it (it looked HARD) and I asked him if he wanted to put it on. "Yes! YES YES!" So I put it on him and turned it on, and figured he'd break it in an hour or so and that would be the end of that. Imagine my surprise when 45 minutes later I went upstairs to check on him and he was on my bed, playing that game. PLAYING IT. He figured out all the buttons, what to do, everything.

I really shouldn't have been surprised, as he has several gifts that are in direct opposition to what the Autism brings us, but I think the dichotomy catches me off guard every time. How is it that he can't answer the question "how are you," but he can play musical instruments, do simple math, and figure out how to play a video game that has complex movements in 20 minutes? It's a strange, strange affliction this Autism; it's a terrible, wonderful thing.

Oh, and by the way - he did eat the Apple Jacks - and asked for seconds!

A Boy and His Dad

Jake is missing his daddy. As he told me today, "Daddy is my best friend. Daddy needs to come out of the phone now. Come home to Jake's house Daddy! And big music show!"

Daddy has been deployed since June, and if you think it's tough for mainstream kids to get through a deployment, you have no idea how hard it is when your child is Autistic. Many people with Autism have a very limited - if any - concept of time. Hours, minutes, days, weeks, months... all are meaningless to Jake. About this time last year we figured out that a "day" had to be related in the time between the sun rises and sets. I don't say to Jake "you have school tomorrow" I say "When the sun comes up again, you have school!" When Randy left for his deployment, I made calendar pages for June, July, August, September and October. I put little school buses on all the days Jake has school, and little birthday cakes and balloons on relatives birthdays, and the holidays each have their own symbol. Each night we mark off the current day, and we look at the calendar to see what awaits us tomorrow.

Jake seemed to be doing pretty good right up until September. See, Halloween is his favorite "Daddy" holiday. Randy carves elaborate pumpkins for Jake and we decorate the house and we bake cookies and cupcakes, and then we get him in his costume and Daddy takes him all over the neighborhood, which is teaming with kids. Jake loves to ring doorbells and always tries to walk right into people's homes - he wants to check out there stuff! So by mid September, he was getting angry whenever we did the calendar. He stopped speaking to daddy when he called on the phone, and he stopped wanting to cross days off.

Randy knew right away that Jake was mad at him, and it was getting tough for him as well. He is the best daddy I know, and adores his little boy. So one night I had a talk with Jake, and finally he blurted out what was wrong - Daddy home for Halloween? Oh. So THAT was the problem. Randy is scheduled to return home in September of '08, and due to manning levels it did not look like he would be able to get home for a visit at all. It was with a heavy heart that I had to tell him that I finally figured out what was wrong - Jake wanted his daddy HOME for their holiday.

It as a surprise for all of us when a few weeks ago Randy put in for leave and got it - just a few days - spread right across the Halloween weekend. I was anxious to tell Jake that daddy would be home for him after all, and I promptly went and put daddy on the calendar for the day he would be home.

Yesterday Jake took me to the calendar and pointed at it and said "Make x's for daddy!" He thought if we x'd off all the days between yesterday and the day daddy is scheduled to come home, it would mean daddy could come home now. I haven't quite figured out how to explain to him that I haven't mastered time travel yet, but we can only accomplish so much in each 24 hour period!

Jake has been talking to Randy again every day. He wants to make sure that he's still coming home and that they will do Jake's other favorite thing, go to "the big music show." The big music show is the movie theatre, where they watch movies together and eat popcorn and sip on diet coke. Tonight he came up to me and took my hand and said, "Daddy helping people?" "Yes," I said, "Daddy is far away helping people." "Jake want daddy home now. Daddy is Jake's best friend," he replied. Yes Jake, your daddy is your best friend - and your biggest fan.

Controversy - The Spice of Life

I knew when I started this blog that there would be people who don't agree with me on various things - some of my views on Autism, how I plan on running my center, how I fund raise, etc.

Below is an email that I received and my reply. I wanted to share it here because I think the points made by both sides are important.

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You are quick to judge successful treatments like the GFCF diet[P.S. it is not hard] and also enzymes are another helpful thing for the kids gut. Why be negative about a cure for many of the kids with autism, not all or even most but many, many, many.....
Mike

And my response:

Hi Mike,

I am not negative towards the successful cases at all! I just think it is irresponsible of anyone to put those treatments out there as THE CURE for autism. It works for some kids and that is a wonderful, beautiful thing – but it doesn’t work for everyone. As for it not being hard – well I’m glad that it wasn’t hard for you! My son choked and gagged and threw up just about everything we gave him, and finally just refused to eat. It was an extremely painful process to get him switched over, and several other parents whom I talked to said the same thing. I can only talk about my personal experiences and the experiences of other parents that I know. (Which unfortunately is quite a few.)

I will post your email up on the blog as well as my response, which will include this: I am in no way suggesting that parents should not try GFCF diets. Some children do respond very well to the diet, and for those children it is a Godsend. My point is that as parents, you should enter into these dietary changes with an open mind, but do not pin all of your hopes on them – because unfortunately dietary changes for many kids make no difference in the severity of their autistic traits.

Thank you for taking the time to write!
Beth


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I know as well as anyone that there are many, many purported "cures" out there. What may help one child may not help another. I think it is up to all parents to decide what therapies to try in an effort to make their childrens' lives better, happier, and more productive, but having your child's best interest in mind means that you must think carefully and clearly before entering into ANY therapy. It is a very sad fact that there are people out there who will prey on parents and offer therapies for autism that not only don't work, but can be physically and/or psychologically dangerous. While I do not think GF diets in any way fit in this category, I do feel like this is a great opportunity to put the warning out there.