So we have a diagnosis, now what?

I never expected that after Jacob's diagnosis we would have all the answers. Nor did I think he would suddenly be cured of his Aspergers. But I guess I naively thought there would be more direction. Like I had said before, Jacob's diagnosis was not a surprise to us at all. My husband and I were both in a place of acceptance at that time. Not one tear was shed. We had already known for so long, I think we were both ready to go to the next step. But what was that? I guess I had expected we would leave our doctor's office with tons of resources. Places to go for support, therapy, different approaches to try, solutions to problems, diet recommendations. Nope none of that. Just a sheet with a few possible locations to try and some books to check out. The books were a no go. Many I had already read, and the others seemed just to repeat the same old information. It seems like every book out there on Aspergers gives you great info on what it is, signs and symptoms, but very limited ideas on what to do to help your child.

And so for the longest time we have been just getting by, taking each day as it comes, the good with the bad and riding the roller coaster of Aspergers. I write often about the challenges and struggles, but there are many good days as well. There are more times than not where Jacob is just like every other kid running the neighborhood playing with his friends, going to school, playing sports, and just being a kid.

But then night gets here and it's time for bed, and it doesn't matter how good of a day Jacob has had, his fears begin to show. Every night I have the same conversation with my son.

"Mommy, when are we going to see that doctor?" he'll ask me.

"Soon, honey. We are just waiting for them to call," I answer although I really have no idea how soon is "soon".

"But mommy, I really need to talk to that doctor now," Jacob will say and I can see how very sleepy his eyes have become.

"Jacob, you need to go to bed, honey. There's nothing we can do about it now."

"But I need to see that doctor to get these thoughts out of my head, " Jacob tells me.

It doesn't end there. The conversation goes on and on with Jacob repeatedly getting out of bed asking the same questions over and over regarding seeing the doctor. The doctor he is wanting to see is a psychiatrist. Yes, my son is begging me every night to take him to a shrink. And every night it makes me heart ache for my son. Every night I feel helpless playing a waiting game on someone else to get Jacob the help he needs. How bad must it be that a little boy of six wants nothing more than to find someone to clear his mind?

Autism resources are limited and many times there is a long waiting list to get in. Not to mention all the paperwork to be filled out by the parents and school regarding behavior. I know as we filled it out the other night my husband was getting tired of me asking the same questions just worded differently over and over. "Would you consider your child's behavior odd? Always, Often, Sometimes, or Never?" hmm....where is the box for "it depends on the day"?

But it's a process, a lengthy one at that. Fortunately while attending a book signing last month we connected with the Autism Specialist Director at our local hospital and she is helping us put a rush on getting Jacob scheduled to be seen. A rush means hopefully yet this month. I am thankful for that, but it doesn't make our nights any easier as we try to explain to our son why he can't just go see this doctor now.

It seems like over the past few months Jacob's anxiety has grown tremendously. A few times a week he is adding new things that "bother" him. I've tried explaining to him that everyone has things that bother them and things we are afraid of in hopes it would help diminish his own worries. But it hasn't helped. Yesterday it was his sister's new leapfrog computer that was bothering him. He didn't like the look on the yak's face when you pressed the letter "Y".  "Jacob, just don't press 'Y' then." I told him. "I have to, mommy. I can't stop." Looks like that's another toy that may have to casually disappear.

And so each day we patiently wait for a call from scheduling. And each night we spend trying to reassure Jacob that everything is fine. I just hope when they do call they have a few extra hours to spare as Jacob sure has a lot on his mind these days, and with a captive audience I'm sure he will talk for hours.