Waiting is the hardest part

Frustration. Anger. Worried. That's how I felt yesterday when the local children and teen mental health clinic finally called me back to set the appointment for Michael's re-evaluation...and the first available date is mid-August. The re-evaluation his psychiatrist ordered at least three weeks ago. And this appointment would just be to discuss what testing would be needed. Then, the actual test date will be set. So much for getting it done this summer.

Michael's new psychiatrist--who focuses on teens and teens with autism--requested the evaluation saying it's common to do one every few years since things change. No, they won't find that his autism and anxiety have magically gone away, but they may find other issues going on whether its OCD, ADD or something else that need to be addressed. The doctor told me that when kids are first diagnosed with autism that it can sometimes mask other problems that don’t become apparent until later on. Since last fall, Michael has been “off” – more anxiety, a higher tendency to self harm, behavioral changes and overall grumpiness (that last item might be related to his age).  First, we tried an increase in his medication and when that didn’t help, we again tried cognitive behavioral therapy – but that again failed to see any results (try asking a kid with autism about what he is feeling and you’ll see how that when no where fast). Next up was the referral to the new psychiatrist. That psychiatrist increased Michael’s medication again and recommended that the original psychiatrist who diagnosed Michael do the re-evaluation since she had a better perspective. That led (finally) to yesterday’s phone call.

I don’t fault the healthcare provider. Believe it or not, this is faster than it was five years ago when Michael received his initial diagnosis. We started that process in early October and I received his diagnosis the day after he finished second grade. I know I’m not alone. I talk with other mothers who struggle to find a provider that takes their insurance or they wait too for months to get in. There’s simply not enough child mental health specialists available. Last year, we took Michael to the world-renowned Waisman Center in Madison to have them review his records and look for any red flags. We waited six months for that appointment and only got in for that appointment since I was on a cancellation list. They called Tuesday and asked if we could be there Wednesday. I said yes. His scheduled appointment was still three months away.

I’m not telling you all of this so you feel sorry for me. I just want people to better understand some of the challenges children on the autism spectrum and their parents face. Michael had a rough year in school. If we had an answer earlier for his anxiety, it could have been better. I had hoped it would have been figured out this summer – especially if the doctor prescribed new medications since they can take awhile before you see any results – and now he likely won’t be re-evaluated until after school starts. (That evaluation, by the way, takes between four and five hours.) Then we’ll need to wait several more weeks before we get results. My goal now is to have a better handle on Michael’s diagnosis before his IEP meeting in late November. This will be a crucial meeting since it will cover his first few months of high school (yikes).

As much as the school staff has been super supportive, I’m sure they’ll be less than thrilled to learn we didn’t learn anything new this summer and we’ll be back to where we ended seventh grade. I sometimes wonder how long their patience with Michael will last. 

But for right now, I’m trying to stay positive: school ends next week so that stressor will be gone from Michael’s life and since I had the foresight to fight for him to be covered under Wisconsin’s Katie Beckett program, all of his medical costs are covered. I continue to hope that more resources are put into children’s mental health and more young adults consider it as a career choice since having more professionals to help children like Michael will benefit the community as a whole.