Patience: the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.
Patience = something I don’t have. I really wish I did. It’d make life a hell of a lot easier.
My impatience leads me to a natural disinclination for doctor’s offices. I loathe going to the doctor. Inevitably, you spend more time waiting to see doctors than actually seeing them. It’s annoying. I don’t like it. ‘Nuff said.
I think perhaps this disdain led me to the overzealous idea of combining both my three year-old and four month-old’s check-ups into a joint appointment last August.
Not my finest hour.
Big C did what I would have done, were it socially acceptable. He screamed and ran in circles around the room, hitting the walls, and writhing on the floor. I feel you, Big C.
After some attempt at discussion with me, his pediatrician recommended he see a child behaviorist. She went on to say it might take six months to get in.
I thought she was joking.
Nope. She recommended a few books and more or less said, “Good luck,” and we were on our ‘merry’ way.
The doc was true to her word. Six months later (after some persistent calling on my part), we finally had an appointment to see this “amazing” doctor (not impressed).
My husband and I weren’t honestly sure what to expect. I, for one, was excited to hear what this behaviorist had to say. Finally, I thought. Someone was going to give me some real strategies to help my kid!
What we got was a claim that he might be “mildly autistic” (more on that in a later blog) and that we’d have to come back in a few weeks to confirm. She compared Big C to a news broadcaster. He had a lot to say, but much of it was unintelligible, random, and directed at nobody (was this a knock at news anchors?).
It took a few days for the potential diagnosis to really sink in. When it did, I cried (a lot), and felt guilty, embarrassed, confused, angry, scared: if you’ve been down this road, you know exactly what I’m talking about. Once it did sink in though, I was ready for action. I didn’t want to sit around anymore. I already felt like I’d lost six months; I wanted to get rolling.
Then the road blocks began popping up. When we got the official diagnosis of ASD, along with a gamut of recommended therapies, resources, and books to read, we discovered our insurance didn’t recognize this pediatrician’s diagnosis. She hadn’t done a full evaluation. We had to make more phone calls. Once again, answers of six-eight month waits was the norm just to get an evaluation. This didn’t include the additional months of waiting to get the therapies started afterwards. A genetics test was suggested. Wait time – eight months.
I was dumbfounded. I was being told my son had ASD and it was possible I may have to wait nearly a year to start certain therapies?
This was simply unacceptable, so my husband and I did some more digging. We found a place, a full evaluation center recognized and approved by insurance with only a three-week wait. It was new, so the long wait lists hadn’t developed (yet).
So we went through an entirely new health system and got the same diagnosis, but this time at least, we had the single sheet of paper our insurance company wanted to see.
That was two weeks ago. Now, we are in the midst of building our team of therapists for our son.
We’re the lucky ones. It’s been less than a year for us to get all of this figured out. My heart goes out to those of you who are still trying to get answers, who are still on waiting lists, who don’t have insurance, for those of you who simply want the best for your child, and are being told, sorry, you have to wait.
I’m rooting for you.
And please, let me know if you need someone to make a few nasty phone calls to get the ball rolling. I can be highly persuasive.
~Chaos Contemplated (for now)