Bath time is over. Jammies are on. If all goes well, Philip will be asleep within the next thirty minutes. If things go like last night, it might be an hour. Even that isn’t so bad compared to the months of staying up with him until well past midnight.
While Philip quietly plays before his bedtime, I’ve been busy packing. Diapers-check. Wipes-check. Snacks-check. Spare clothes-check. Toys-check. Camera-check. Insurance card-check. Cash for parking-check. Driving directions-check. Directions to and instructions for the doctor’s office-check. Appointment list and referral-check.
Tomorrow morning we have to report to the Cleveland Clinic’s Children Hospital for the first set of autism screening appointments. Earlier this month we mailed in the packet of questionnaires. There was a sleep survey. A set of quality of life questions. Medical history. Some standardized assessment. There was a questionnaire that Philip’s teacher had to complete. Consent forms. Family history forms. We mailed in a copy of the pediatric neurologist’s diagnosis along with Philip’s IEP.
I have a feeling that, despite having filled in all of those forms and having answered so many questions, we will end up repeating a much of the same information tomorrow. And then being asked even more questions.
I know it has to be done. I know we need a diagnosis. A diagnosis is the key to services. A diagnosis gives us an idea of how to move forward. The diagnosis matters. If it didn’t, there wouldn’t be so much buzz around the American Psychiatric Association’s release of proposed changes to the criteria for Autism Spectrum Disorder (go here to read more about this on the Autism Speaks blog).
I’m not complaining. We’ve waited four months for these appointments. But am I feeling anxious.
Will Philip sleep through the night?
What else can I get ready tonight?
What last-minute things do I need to grab in the morning?
What should Philip wear?
Did I answer all of those questions on all of those forms the right way?
Will there be ice on the roads for our 70-some mile journey?
How hard will it be to find the facility?
Am I forgetting anything?
Will I be able to answer all of the questions?
Will Peter and I agree on the answers?
How will Philip handle the hour plus ride in the car and arrival at a strange place?
Will the doctors judge us and how we’ve been handling things?
Will this disrupt Philip’s nap schedule?
Am I going to cry?
All of these questions are rattling through my brain. I’ve had a knot in my stomach for most of the day in anticipation of tomorrow.
As I hoped, Philip is drifting to sleep as I finish typing. That means I can head to bed soon myself. We have to get up earlier tomorrow in order to make it to our appointments on time. I’ve laid out Philip’s clothes and my own for the morning. With Philip asleep at a reasonable hour, I have plenty of time for slumber.
If only I could sleep.
I’m linking this post up with the yeah write #145 weekend moonshine grid, two years after writing it. I have learned quite a bit about autism since then. I wish I could go back to the mom who wrote this and tell her, “This is not something you need to lose sleep over. There is no reason to cry. Everything is going to be okay.”