A year ago, we took Callum to see a developmental pediatrician. And, because some of his symptoms were somewhat atypical, the doctor said he was hoping he might just be delayed. He felt there was a chance that it might not prove to be classical autism and asked us to return when our son turned three. We continued speech, occupational, and physical therapy and waited it out.
During this time, I read. And researched. And analyzed. And over overanalyzed. I blogged. And socially networked. And I had built up in my mind the moment when we would finally receive a diagnosis. I had envisioned a private room, numerous assessment papers, and difficult discussions of cognitive ability and prognosis. I expected to have it really hit me on some deeper level that I couldn’t anticipate and to maybe break down. I thought it would be the really big deal it has been for so many of my special needs parent friends.
So, yesterday, we drove an hour to the University of Florida, my mind drifting over different possible scenarios. I thought we would have a long wait in the lobby. But they called us back immediately. I expected a dreary wait in the examining room. But the doctor walked right in. I was ready for him to pull out all of the various assessments from the private therapists, Early Steps, etc. And I figured he would order up a full day of assessments at Shands.
Instead, he walked in, took one look at Callum stimming over a dangling cord, and said, “So, it doesn’t look like there has been a major change. I was hoping it might go the other way. But we are definitely looking at autistic disorder.” He asked a bunch of questions about his behaviors and speech. And he spent a little time interacting with Callum – asking him to draw, give him a high five, and to return his pen (of which he did all three). He then told us to continue all of his therapies and handed us a brochure for a University of Florida training program for parents – Child Directed Interaction. He suggested we contact the Gainesville CARD. And he handed us a lab order for chromosomal testing. And that was it.
Realizing he was intending to leave, I asked the question, “So is this paper a formal diagnosis?” The doctor looked at me and said, “Well, he was diagnosed a year ago, but I was hoping he would go in the other direction.”
So, not only was our diagnosis uneventful – it, apparently, happened a year ago and no one told me. No, really.
I suppose some might accuse me of not being terribly observant, but I submit that if someone had told me my son was formally diagnosed with autism a year ago – that I would have noticed. My best guess is that it happened following our visit and after the doctor or whomever graded the parent questionnaire he had me fill out before leaving last year. I realize it wouldn’t have made any difference in our day-to-day lives. I’ve known since early on it was autism. He has received therapies since the age of 19 months. He has received the benefits of Early Steps and qualified for ESE Pre-K placement. With the exception of possibly (but not terribly likely) receiving social security disability benefits and a tax break, nothing would be any different for him having that official label.
So, instead of experiencing a fresh wave of grief and anxiety or a surge of relief and renewed purpose, I was left feeling strangely blank and mildly disconcerted. Like when you follow two characters throughout an entire romantic drama – only to be left with questions of whether or not they will really end up together. It was anti-climactic, to be sure.
Except for the part where we left the doctor’s office to head over to Shands for chromosomal testing. And after handing over our insurance information, we were denied. The wonderful woman in the outpatient lab trying to get it authorized went above and beyond the call of duty. She explained that this type of testing cannot be conducted in the lab they demanded we go to. They demanded his primary care pediatrician see him instead. She (and we) patiently explained the need for a specialist. They then demanded that the specialist call in the authorization. The specialist demanded the pediatrician call it in. The pediatrician’s office swore to call it in. And then went to lunch. We went to lunch. We returned. The pediatrician’s office then said it would be three days. Then therapy called in the middle of all that and shared that Healthease had denied his therapies for the third week in a row and they would resubmit.
So, I discovered Children’s Medical Services across the hall. Children’s Medical Services is a group of insurance programs for kids with special needs. They were pressed for time, so the nice lady gave me a card with a phone number to call. I started to get a little teary. So, the nice lady insisted someone who could help me come out front anyway. And that lady turned out to be super kind and helped me to begin paperwork to switch him out of the awful state health insurance program he is in and into theirs. And then she suggested that I go down the hall and meet with a social worker to find out about anything else I might need to know about. And that guy was also awesome and directed us to some other resources.
(And all of these people making up the staff of the University of Florida at Shands Outpatient Lab, Children’s Medical Services branch, and Social Services branch restored my admittedly shaky faith in humanity. So a big “Thank you” to them. You folks rock. And a loud “Shame on you!” to Healthease of Florida. Like Aunt Em, I can’t say what I think of you.)
So on my personal D-Day, I am reminded of the truth about autism diagnosis. The label allows you to approach, but you still have to storm the beaches yourself. You still have snipers raining fire upon you. You will see and hurt for the casualties of those just like you, also navigating their way through their battles. And, if you finally reach safety, you will look back at the devastation these battles have left behind and wonder. Yet you will know that your child – and every child – are worth any sacrifice.
For in the immortal words of Winston Churchill, ” We shall fight…We shall never surrender.”
But first we need some snuggle time and to crawl in bed. A good book. A glass of wine. And some peanut butter fudge. Then, after a good night’s sleep, we shall commence fighting in the morning. We’ve had a long day.
So, what was D-Day like for you?
Or you might enjoy this post about diagnosis from Tales from Tangerine: “A Diagnosis…Sort Of”.