Autism

Matthew was "diagnosed" with autism spectrum disorder near the end of 2006 when he was three years old.  At that time 1 in 150 children were diagnosed with autism, 1 in 71 boys.  Now?

1 in 91 children are diagnosed with autism (boys yet again much higher, but no firm stat)

1 in 91 families changed forever

80% of marriages with autistic children end in divorce

So many families being invaded by this disease.

If there's so many of us, why do we feel so alone in this battle?
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I will never forget the day that my husband and I were called into the school to discuss Matthew.  I knew something was wrong, because they went out of their way to make sure that we could both be there.  I sat there stunned as I listened to the speech therapist describe a child that couldn't possibly be mine.  I fought back and held in an ocean of tears.  Up until 5 years earlier (when my nephew was diagnosed with autism) I barely knew how to say that word.  I couldn't look at B.J. I knew if I did I'd lose it.  As she continued to talk, I felt his hand grab mine, although I'm sure mine felt lifeless.  We listened intently to every word the school said, and told them we were open to devising a plan (an IEP they called it) to help him.  We thanked them for their compassion and prompt attention and left.  I watched my husband get in his truck and drive back to work.  I sat in the parking lot in my car and sobbed--then, I drove back to work.  The entire rest of the day I had this terrible feeling in my stomach.

We told people our news, and for the next six months or so we listened to everyone's "advice" and opinions.  We must have heard "There's nothing wrong with him, that school's crazy!" about 50 times.  But there was something wrong.  Maybe not at first glance, but there was something.  My mother in law tried to tell me she thought something was wrong nearly a year earlier, and I got very defensive and dismissed her thoughts. But I knew she was right.

Matthew was not affectionate, he would not look you in the eyes, he preferred to be by himself, he would spin in circles and to be honest there were just some weird random things that he was extremely good at.  He hit all of his milestones early when he was a little baby--but when he was around 15 months, everything slowed way down and continued that way for quite sometime.  He walked very late, was potty trained very late, and would never initiate a conversation.  He would memorize and recite several times throughout the day entire movies, shows, and books.  The sleeping was terrible, he would just not sleep--he would lay in his bed all night saying he could not turn the movie off in his head.  We stopped watching TV thinking this would help--it did nothing, the movie was still in his head.  All of his senses seemed to be heightened.  He used to hate going to Wal-mart, I mean it was terrible-- it wasn't until years later when he told us that lights were too loud we understood.  (Many autistic children can hear the sound fluorescent light bulbs make, that humming...)  People who loved him and wanted to hold him would approach him and he would scream at them.  The advice we were given?  Spank him, he needs to be spanked.  He shouldn't act that way around people.

Well- meaning, good Christian people--who didn't have a clue.

When people he knew and loved got haircuts, or changed perfumes he was afraid of them.  They don't teach you these things in birthing class.  This isn't in the "What to Expect When You're Expecting Book"  We would have a sudden change in our day, and have to make an extra stop on the way home or something, and Matthew would have a total melt down.

Life was difficult, and I felt so alone.  Alone, and guilty.  What did I do?  Was there something I could have done that would have prevented this?

Matthew seemed to be getting worse.  He didn't want to snuggle anymore.  I didn't hear I love you mommy.  He wouldn't look me straight in the eyes unless I made him.  I will never forget one day when he said something very sweet to me, and I realized later that it was a line from a movie.  BUT, he used it the right way, the character in the movie had said it to someone that they loved, so I knew in some strange way he was telling me he loved me!!  Matthew was in there somewhere and I refused to sit and watch my child go backwards in life.

I started reading, and researching.  B.J. would stay up all night searching websites and internet forums, looking for some sort of help.  We vowed together to do absolutely everything we could (our part) and put our faith and trust in God to do the rest.  80% of marriages with autistic children end in divorce...that is so surreal to me, because I cannot imagine being on this journey without my best friend.  B.J. is my strength.  When I want to quit, he always reminds me how far we've come.  He is the most amazing father.

In March of 2008 I read a book that changed my life, and was about to change Matthew's.  Louder than Words by Jenny McCarthy (I know of all people right?)  Jenny had recently been on Oprah talking about her son's battle with autism.  He was much more severe than Matthew, but nonetheless had some very similar struggles.  I read her book.  B.J. read her book.  Deb & Rodney read her book.  And we all decided to try the GFCF Diet like she tried with her son.  No Gluten.  (Gluten Free) No Casein (Casein Free)= GFCF.  That basically means no wheat, and no milk.  Which is in everything.  If the ingredients do not say wheat or milk, there's still about 300 more words that are used that actually mean wheat and milk.  Go to Wal mart tomorrow and find 10 products in the whole store that do not have one or both of these things in them.  For the first month we also had no "Natural Flavorings" because they are questionable ingredients.  I thought life was rough before!

Why did we do this?

There is an ongoing battle to what causes autism.  I won't go into all of the details that I believe.  But, we are convinced that Matthew has a leaky gut (google it) and when he does not eat foods that are difficult to break down, he doesn't have trouble.

We started with milk week one.  No milk, no milk products.  We gave him calcium supplements.  I kept a journal.  The end of week one?  I wrote in the journal--Matthew snuggled on the couch with B.J. and watched an entire movie!!  B.J. looked at me half way through with tears in his eyes and said, he's never done this before!  He's 5 and this is the first time he's snuggled with me on the couch like this!

Week 2 we took away wheat.  No wheat, no wheat products.  We had to get new dishes, because any dishes that had been contaminated with wheat before could cause problems.  Life was rough for awhile.  It took a lot of time, (and money) to find some foods he liked.  Some of them smelled so bad, and tasted absolutely terrible.

Nearly a month after being on his diet, I journaled:  "Today was a great day!  Your teacher told me today was your best day yet!  You answered questions appropriately and listened."

Matthew is now 8.  It's been a long 5 years.  I am so proud of him.  He is an amazing child.  He sees things in ways that most of us do not.  We have since found digestive enzymes that can help with some of the breakdown of foods, this allows Matthew to indulge occasionally and have a special treat.  He usually picks pizza.

He still struggles with some things.  He sees the details and misses the big picture a lot.  The first time we took him to the zoo he talked about all of the squares and circles, WHAT?  I said...did you not see the birds and bears, and elephants??  No, he saw the patterns in the fences, and the gates in front of the animals!  Anyway.  I just want people to be educated.  This is real.  One day these 1 in 91 children are going to grow up and be in our workforce, and be in leadership positions.  Some of these kids are not as high functioning as Matthew.  They will need to be taken care of.  Some will have to be put in homes.  Who will take care of them?  Who will pay for all of this?  Our country needs to take notice.  Below is the best video I have found on autism.  Please watch it.  You may someday have a child, or a grandchild with this very same issue....1 in 91.