Thursday, July 23, 2009

Out With It, Already

Moment of truth. This will truly be an entry for a diary. I am spilling my guts for this one.

After a long month of deliberating, Todd and I have finally decided to come out with our big secret. It is hard to believe that it has only been a month. It feels like so much longer. Many of you know that our boys both have speech problems. At the suggestion of our pediatrician, we submitted them for autism testing last month. The results came a couple of weeks later. Jacob was diagnosed with Pervasive Developmental Disorder, or PDD. It is on the spectrum of autism. Christian's diagnosis has been a little harder to swallow - mild to moderate autism. There. I've finally said it. I have 2 boys with autism.

It has been a very hard decision to make this public. What will people think? Will they treat my kids differently? Will they cut us more slack? Probably my biggest fear is that a label will follow the boys for the rest of their lives. A label that can gain them the extra help they need, but disposes them to a variety of prejudices. They don't deserve it. They have done nothing wrong. I, like any parent I suppose, feel very protective of them, especially recently. We contemplated keeping the diagnosis a secret to protect them, but it is just a matter of time before they act out in public and people begin to draw their own conclusions. At least, this way, my hope is that people will try to understand.

I'm not too concerned about Jacob. He has made so much progress in the last year and a half that I have nothing but the highest hopes for him. You might say, I'm blowing it off. I know I, we, are already doing everything we can for him.

Christian is another story. After a year in First Steps, progress has been made, but it has been slow going. He is saying more words, and a couple of learned phrases. He runs and plays normally, is very affectionate, but is still lacking in communication. We are looking at getting him into a special school for ABA therapy. ABA is the most researched therapy and has the best outcomes. Fortunately, our insurance is under an Indiana legal mandate which requires them to pay for this therapy, which can be expensive. We are still at the beginning steps of getting him in the program.

I think I was pretty well in shock for the first couple of weeks. Now, however, the worry has started to set in for me. What did I do wrong? I was nearly a straight A student in school. How could this happen? Is God testing me? I worry about their future so much. I guess like any parent. Sleeping has been difficult. Worrying. I think I am starting to give myself an ulcer because I have a hard time eating without becoming nauseated. I have been trying pretty hard to keep my mind occupied. Just as idle hands are the devil's workshop, so it must be true of the mind. I have been reading non-stop (not books about autism) and playing meaningless computer games to try to keep myself from worrying. Todd seems to be handling it pretty well.
It is so hard to see my friends, and family for that matter, with their "normal" kids. Kids that talk. It makes me jealous, sick to my stomach. "They don't know how good they have it" I say to myself. What did I do wrong? I think Todd and I both think that sometimes. It has to be something genetic that has caused this. Something between me and him. I am the first to admit I have my OCD tendencies. Todd is lucky if he can pay attention sometimes - meetings, classes. We both pretty well instantly decided that we weren't going to have any more children.

Don't get me wrong. I don't mean for any of this to sound like a pity party for me, us. My friends are just starting to realize that I have not been myself lately and I don't know if I have the courage to mention it face to face. I guess it is now that I will find out just who my friends are. Who will be there for me when I need to re-focus? Who will give me a shoulder to cry on when the boys don't seem to be making progress? Who will be willing to share small accomplishments with me?

My new motto is "Go forth and conquer." Those of you who know me well know that I am so stubborn. Failure is not an option. I am focused on them and doing everthing I can so that they will be able to lead a normal, happy life.


The Fletchers said...
This comment has been removed by the author.
The Fletchers said...

Everything will work out.

I love you and the boys love you.

It's going to be alright.


Karen said...

I'm so sorry you've been having to worry about all this, Jen. I don't really know all that much about autism, but I'll be keeping you and your family in my prayers.