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.

I have a helper! Yay!!

Since I started this blog and began putting together the very basic ground work for making Jake's Place a reality, I have been having a tough time figuring out how I was going to do all of this by myself. I knew that I needed some help, but it had to be someone that I could really trust, would be motivated and caring, would have some experience raising funds, and I had to be able to afford them. What a task!

I was starting to feel a little down in all honesty, because I realize that trying to do this all by myself means that it will be a long time coming to fruition - there is only so much time I can put it on my own, and fund raising takes a LOT of time - but I honestly believe that the Lord is guiding me, so I knew it would all work out when the time was right. That time came faster than I had expected when last weekend I had a long conversation with Randy's birth mom, Carolyn, and she offered to come on board to assist me in making Jake's Place a reality.

Carolyn has been serving the Lord for over 20 years now, working in ministry and helping troubled kids. Over the past few years she has had a series of devastating blows, including trying to work from home while taking care of her seriously ill mother, so this opportunity was a God send for both of us; I get the help I need and she gets to work from home! We are currently in the process of trying to get a solid plan together and get the fund raising ball rolling, and hope to start making progress very soon.

Welcome aboard Mom!!

Raising Funds the Hard Way - wow $165K is a lot of money!

Yes, yes it is. But starting and running a first class therapy center takes a lot money. Horses take a lot of money. Feeding horses and vet care for horses and foot care for horses all takes money. Then they need blankets and barns and bedding and shoes and quality feed and sometimes special diets - and we haven't even gotten to arenas and trails and lounges yet!

My dad asked me the other day how I came up with the $165,000 figure, and I think my supporters/donors would like to know the answer to that question as well, so here is a general breakdown.

$22,000 - Training. I need to go through an accredited EFEL course to become a facilitator, and I also need to complete NARHA certification.

$75,000 - Down Payment on Farm. In our area, the type of farm we will need would cost about $750,000 ready to go. We can do renovations and repairs and updating ourselves, which means we can buy a "fixer" farm for about $500,000. We will need to put 20% or $100,000 down. We have about $25,000 in equity in our current home, which means we need to raise another $75K for our down payment.

$30,000 - Barn, Arena and Lounge Improvements. Since we will be buying a "fixer" farm, we will of course need to fix the horse part of the place up before we can start accepting clients. Fixing includes making sure stalls are safe, arena footing is safe, fencing is secure and safe, and that our lounge for parents is completed.

$24,000 - Six Months worth of Operating Expenses. We will need some time to get the improvements done and our client list built up before we can expect the center to start bringing in any type of income. Covering six months worth of expenses will give us time to get that accomplished.

$14,000 - Advertising, Legal and Office Expenses. We will need to do a big advertising push to the get the word out that the center is open, and to show the world what we have to offer. Before the first client arrives, we will need insurance and contracts and release forms. We will need computers and forms and office supplies to keep everything running smoothly.

There are quite a few things that aren't listed, like HORSES! and tack and equipment and a truck and a trailer and 1,000 other things. I hope to be able to contribute most of those items on my own, and I do currently have several people who have offered donations of horses and tack (THANK YOU!!). So that is a general breakdown of what we need funds for. It is a monumental task trying to raise that amount of money with no advertising budget and basically just sending out emails and posting on the web. But I have faith that the funds will come through, and that through the grace of the Lord, we will get to exactly where we need to be!

Jenny, Jenny, Jenny...

Oh Jenny McCarthy, I know you mean well. I know your heart is in the right place....but.

And it's a big but. I would hazard to guess that 95% of US parents, when told their child has Autism, heads straight for Google. I know we did - we researched and read and researched and read until we couldn't read any more. We wore out keyboards, I kid you not. We wanted to know, WHAT, HOW, WHO caused our beautiful little boy to have this terrible affliction.

We heard lots of theories about Autism, but the two that seemed to keep coming up over and over were that Autism is caused by Thimerosal, a mercury (50%) based compound that was once used as a stabilizer in vaccines (and many other products), and/or was caused by or exasperated by Gluten.

I've always lived my life by the "everything happens for a reason" perspective, so it was during all of this researching and reading that I finally understood something about myself that I hadn't been able to figure out - why I had spent 4.5 years in college studying Molecular Biology and another 3 years working in research before I finally called it quits and went into business for myself. I mean I enjoyed research, and I did some good work while I was still in that life, but the fact was it was not my passion, and I had always known that. I could never really figure out what drove me to learn it - it's not exactly the easiest subject to learn - but when I found myself submersed in research abstracts and science periodicals studying Thimerosal and the effect of Gluten on the human body, I had one of those AHA moments! This was something I knew something about, and I was really anxious to discover how so many parents had come to the conclusion that vaccines were the culprit. Bring on the science!

Well, I hate to tell you this Jenny (and all the other band wagoners) but as of today, there is absolutely no factual scientific evidence to support that vaccines in any way contribute to Autism. And here's another one especially for you Jenny: your son is around the same age as mine. Jake was born in 2001 and had the "suspect" vaccines in 2002. But you you know what? They had already started to discontinued the use of the mercury compound Thimerosal in 1997 as part of the FDA Modernization act of 1997. Most vaccinations today do not contain Thimerosal at all, and the ones that do have such ridiculously low amounts (micro grams and lower) that my fillings would be doing more damage then these vaccines. (They've pretty much phased out mercury in fillings as well, but I've still got some real old ones in there!)

As for Gluten, there are some correlations showing that some autistic children when put on a gluten free diet show some signs of improvement, NOT CURE, but improvement - but as we all know, correlation does not equal causation. My son has gone through some amazing changes over the past five years, and during that time he's also started wearing under pants. AHA! Under pants cure Autism! Well...not so much.

I, as well as anyone, understand the intense desire to find out what causes our children's ailments, and I personally have been caught up in that all consuming desire to find someone, ANYONE to "blame" for Jake's Autism. But the fact is that while it may bring a sense of relief to point a finger and say AHA! Thimerosal! and AHA! Gluten!, the really hard truth is - and I'm sorry, because I know it's painful to hear - but the fact of the matter is that all of those claims are based pretty much solely on junk science and personal anecdotes.

I am thrilled for Jenny MacCarthy that her son showed great improvement after a change in his diet. Unfortunately for my son - and thousands of other kids with Autism - becoming gluten free had absolutely no effect what so ever, and the process the family and the child has to go through to become gluten free is painful and arduous. (Although I can imagine it would have been much easier for us if we had an in-house dietitian and gourmet cook on staff!)

Jake, for example, is very food taste/texture intolerant. He cannot eat a vegetable or most fruits. He will gag as soon as they go in his mouth and he will then immediatly throw up. His main diet staples are corn dogs, toast, peanut butter and jelly sandwiches, and plain cheese burgers, with the occasional grilled cheese or quessadila thrown in (oh, and he loves brownies). He is so sensitive to taste, that if you give him a different brand of corn dog, he cannot eat it. (And yes, we're sure he's not just seeing that the box is different. I was a research scientist, I know how to do a blind test) So as you can see, just about every thing that he eats has gluten in it, and making the change to gluten free products (they really do have gluten free corn dogs! And waffles!) was more than a little painful.

So to Jenny MacCarthy - thank you so much for doing your part to bring Autism back into the minds of the general public, you've just made it a lot easier for researchers to raise funds - but I wish you would have done a little more research before you labeled a "cause" to this disorder.

And to all of my wonderful, loving, caring friends and family who I couldn't do any of this without - you can stop sending me links to Jenny's interviews and articles and book now. I've done my homework, and I have a little different reading list. :-)

Calling all Internet Shoppers!

We'd like to invite you to shop Jake's Horse Place Internet Mall!

If you already shop online, you know what a safe, hassle free, and comfortable way it is to shop. Our mall offers lots of the same stores you probably already visit on line - stores like Target, Best Buy, and even Walmart. In fact, our mall features over 500 great stores, so you are sure to find just want you're looking for, and best of all, Jake's Place will receive a percentage from every purchase you make. It is a win-win situation, and all you have to do is show our mall from this link.

So please save our link Jake's Horse Place Internet Mall to your favorites, and pass it on to your family and friends. We appreciate YOU!