The Waiting Game

The phone call came late Monday afternoon. The phone call we had all been anxiously waiting on. The phone call that every night Jacob inquired about. The phone call we all hoped could help.

And so Monday when I picked Jacob up from school, I waited for the question. Sure enough it came.

"Mommy, when do I get to go see that doctor?"

"Tomorrow," I replied. Jacob answered with a surprised "huh?" and a big smile on his face. He was so used to me saying "soon" or putting him off as much as I could because I simply didn't have the answer. But this time I did, and it surprised us both.

When the phone call came  Monday afternoon to set up Jacob's appointment at the Developmental and Behavioral Sciences Department at the hospital, I really figured it would be weeks before we would be seen. How shocked was I when they asked if we were available the following day. Of course I said yes. Somehow we would make it work. We had all been waiting for this phone call and I wasn't about to drag it out any longer. His appointment would be ninety minutes and with a child psychiatrist who would determine where we go from here.

To say Jacob was excited was an understatement. Never has a child been so willing to see a doctor. In fact, he was so excited that the next day, the day of his appointment, he told his teachers all about it and was counting down the minutes until Spanish was over, knowing I would be picking him up shortly after.

Surprisingly I wasn't that nervous about the appointment. Usually these sort of things make me anxious. My only worry was what if they came back after listening to us and meeting Jacob and said he didn't have Aspergers. What then? A crazy worry, I know, but from years of being told my son is fine, I think it is a worry that still sticks. We had made it this far, I wasn't about to go backwards.

After a short wait in the waiting room, we were greeted by the psychiatrist and two student doctors. Beings it is a children's hospital, they made Jacob feel welcome and secure right from the beginning. You could tell this was old hat to them. We all settled in. The doctor wanted to meet with us separately first to get a feel of the struggles we were having and asked that Jacob play quietly outside the door. That would be a challenge as Jacob never ventures too far from us, especially in a new environment. Jacob opened the door repeatedly, and I knew he wouldn't be able to do it. After explaining to the doctor that Jacob was also diagnosed with separation anxiety, one of the student doctor's joined him so he wasn't alone. I could hear through the door, Jacob filling in this young doctor hopeful on every animal fact he knew. There is nothing Jacob likes better than a captive audience.

The doctor asked us to describe our son. We started from the beginning, going over all the struggles, challenges, and anxieties that we see in Jacob. We also talked about his strengths and how he is an incredible kid. At the end the doctor said that he agreed that the Aspergers diagnosis was spot on. Whew! The words I needed to hear.

He then talked about how the changes by the DSM-V on Autism will only change Jacob's diagnosis to "Autism" instead of "Aspergers" next year once they go into effect. Again a sigh of relief. I was so worried that somehow with the changes Jacob would be phased out and suddenly "normal" and no longer eligible for any kind of services. I do have issues with the changes to be implemented, but that's a whole other post.

Many times as we were telling Jacob's story, the doctor responded with "Wow!" and would glance at the student doctor. I wanted so badly to ask, "What does 'wow' mean?" Is my child odd even amongst children with Aspergers? I know his fear of balls rolling down our street is certainly not your average everyday fear, but is it that exceptionally strange?

We discussed options and what to do next. Of course one option is medicine. Always a scary thought putting your child on a medicine that will alter their personality and has some alarming side effects. But it's a possibility we have to consider. If it is going to help Jacob, it has to be considered. I was happy that the doctor didn't seem to push it and said there was no rush. It was hard to gauge how he felt about medicine anyway. His statistics on the difference it made, didn't seem to make that compelling of an argument that we felt a definite choice one way or the other. We left that decision open for now.

After going over our options the doctor had Jacob join us. It was interesting to me watching him interact with the doctor. The doctor asked him about the things he likes, animals and baseball. A good ice breaker for Jacob making him feel at ease. And then he asked about fireworks at baseball games, which led to other things that Jacob is scared of, mainly the balls rolling down the street. I was proud of Jacob and how he answered the doctor's questions and tried explaining his feelings and fears, something that is not easy for anyone to talk about. 

Our ninety minutes was up. I think each of us could have easily talked an additional ninety minutes. We wrapped things up by deciding that our next step would be to try behavior therapy. Again a waiting game on a different doctor's schedule. Hopefully within the next month we would be able to get in for our first appointment.

In the car on the way home, I told Jacob what would be happening next. Naturally he wasn't happy with waiting and I hated giving him that news.

"Jacob, It's a process," I started to explain.

"What's a process?" he asked.

"Well, there are steps. This was the first step meeting this doctor. Then there will be step two. Then step three..."

"WHAT?  There's a step three!" he groaned.

I get his frustration. He wants his mind clear. He wants to stop feeling afraid. He wants to go to sleep at night without thinking scary thoughts. He wants results now, just like we do. But it is a process. A process with no real conclusion. For now I will let Jacob think it ends with step three. He doesn't need to know that this is a battle he will be fighting his entire life, these challenges associated with Aspergers. There could and will be many more "steps".

So this morning, I waited. Would that same question come up that Jacob has asked over and over for the past month since that initial contact we made with the hospital. But instead of the same old question, Jacob posed a new one.

"Daddy, when do I get to go to Doctor Two?"