Remembering the Journey to Receiving The Title...AUTISM

This is something I wrote quite a few years ago, but wanted to share it on this blog...

For a year prior to receiving the diagnosis, I hadn't really done much to help Justin because I grew tired of trying to figure it out.

I was taking Justin to so many specialists--each one painstakingly emotional. We started with our pediatrician who diagnosed him with failure to thrive and said his kidneys might not be functioning. Then off to the Nephrologist who said his kidneys were fine. Then off to the first Developmental Pediatrician who said that because Justin looked her in the eye and was social with her, he couldn't possibly have Autism, but he might have delayed myelination on his brain which would cause it to not grow and that's why his head was so small. From there, we were in the hospital so he could have MRI's and CT scans on his brain. It was growing--THANK GOD. That doctor sent us to a Geneticist who thought it was Williams Syndrome and ended up testing him three times for it because she was so convinced he had it. Negative every time--THANK GOD. The last specialist we saw was a very well known Neurologist. He did intense testing on Justin and said there was cause for concern but couldn't really give us an explanation as to what the concern was. He reassured us that because Justin was so good looking, he should do fine in school with his teachers and peers. Oh that's comforting! Glad we spent $5,000 for this guy to tell us that. Every specialist we saw did the same thing--they threw their hands in the air and said they had no clue what was wrong but something was definitely wrong. I was so frustrated. How was I to help my little boy if nobody could tell me what was wrong, nobody could tell me how he was feeling inside or why he would have screaming episodes that lasted hours. After all this, I decided to take a break from trying to figure out what was wrong with him and just focus on him.

As the year went on he had become more aggressive. He didn't feel pain. He really didn't feel anything. Disciplining was a huge issue, because he didn't care and didn't understand. He now feels some pain, but it's nothing compared to other children. I couldn't leave anything open or it would be destroyed. He has run out of the house numerous times. I found him early one morning at my NEW neighbor's house painting their garage. I was horrified. The plumber's daughter has a free ride to college thanks to Justin. Our carpet cleaner and I have become very good friends! I have had numerous things broken because Justin wants to hear what it sounds like if it hits the floor. He didn't understand action equals consequence so this sort of thing happened over and over. He ran away at the mall, at church on Christmas Eve (we found him in the parking lot jumping in the puddles), at daycare. He has walked right off the playground equipment not realizing he would fall. He has taken my knives and tried to sword fight with them. I had become such a paranoid mom, that I didn't even know how to relax. I had to be on guard 24/7 or something would happen. I would go through the motions of talking to him, disciplining him, etc., but It didn't do a bit of good. You can only do the same thing for so long with no result before you want to give up.

It was quite embarrassing when he would approach a stranger and smell their butt; or take the gum right out of their mouth because he wants to chew it; or ask to see their boobies; or screamed for hours on a plane because he couldn't stand all the people; or would throw something in a store and it hit someone. People would look at me like I was a moron for raising such a terrible son.

This was my life for many years. Just dealing with it. But I didn't want to just deal with it. I wanted answers. I wanted more for him; more for our family life; more for me. I used to think "why did this happen to me? Why do I have to deal with this every day?" But now I truly realize how honored I should be. I know that God chose me to be Justin's mom--knowing I am strong enough and brave enough to fight this with everything I have in me, so that he will not live like this forever. God knew that I wouldn't stand for this kind of life for my child and that I would go to the ends of the earth to find out what's wrong and find out how to heal him. And so my newfound journey through "RECOVERY" begun. I couldn't sit back and "deal with it" any more. I had to fight--like God knew I would.

Now that Justin was older, it was easier for a Developmental Pediatrician to see that Justin had Autism. Sure he was social--but not socially appropriate! A label doesn't change what we already know about Justin. It just gives us a direction to focus our recovery on and focus all our prayers to.