“Your son is on the autism spectrum.”
When I heard that, I expected to feel a variety of emotion. I did not expect the predominant emotion to be relief.
That’s right, I’m relieved to hear that my child, both my children actually, has autism. Because I can work with that.
Once I thought about it a bit, it made perfect sense to me. You see, I am an ISFJ. I am an introvert, which will come as no surprise to most of you. I could go pretty much either way on the middle two: information – sensing vs. intuition (intuiting would be grammatically correct, but I got it from the Myers Briggs website and didn’t feel I should police them…moving on…), decision making – thinking vs. feeling. But I fall pretty solidly in the judging camp when it comes to structure. I refused to own it for a long time because of that word: judging. I am a very tolerant and open person, so that thought truly offended me until I realized that the test was not calling me judgmental. Rather, it was describing my preferred decision status.
Sparky and I are very much alike in many ways, but this is the one area where we are polar opposites. He loves to have a ton of options right up to the last minute. I sometimes don’t even care what the final decision is, I just want it made so that I can move forward with it. A great example of this is in choosing restaurants. It was not uncommon early in our relationship to pull in to the parking lot of a restaurant, say Italian Oven, and have Sparky say, “Or we could go to Genghis Grill.” I would go ballistic and hit the roof (very quietly; remember I abhor conflict). I didn’t understand why he was torturing me this way. In his turn he didn’t understand why I was so upset when he was only trying to make sure I was totally happy with the choice. It took us years to work out a system for dealing with this, but we did and it works pretty well for us. I hadn’t even thought about it in years.
Until we started BeBop’s evaluation process a few weeks ago. The first session with the doctor was just for the parents. I had filled out most of the paperwork in advance, but they gave us a short questionnaire to fill out while waiting to meet the doctor. The last question asked what we hoped to get from these appointments. Sparky and I looked at each other for a beat and then we spoke at the same time. He said, “I want them to tell us he doesn’t have autism.” I said, “I want a diagnosis of autism.” We ended up writing down that we wanted clarity on the question of autism.
I totally get Sparky’s answer. He wants there to be nothing wrong beyond the sensory issues we already know BeBop has. Sensory issues are by no means easy to deal with, but Sparky and I each have our own sensory issues, so it’s a known.
I thought I understood the reason behind my answer as well. I want a diagnosis because it will be easier to get services for him. That’s true, but it’s not all of it.
I realized as we continued through the process that I also wanted validation of my continued concerns. Assurance that I’m not crazy, that there is something going on with him. We brought BeBop to the next appointment and I spent the first hour of it watching from behind a one-way mirror as he played with the doctor and answered her questions. Sparky was in the room with them, not to participate, but to help BeBop relax with this doctor he had just met. BeBop really took to Dr. Kelly and seemed to do very well playing with her. In fact, he seemed like a typical five year old. I began to worry that Dr. Kelly would wonder why we brought him here. That she would feel we were wasting her time. I talked to BamBam’s speech therapist about it the next day and she was very reassuring. She said that they wouldn’t have set up the evaluation if they hadn’t seen a cause for concern in his records. She also said that, if he did only have sensory issues, she would expect his social issues to resolve once his sensory needs had been addressed. And she was saying they hadn’t. That was like a soothing balm to me. When he started occupational therapy two years ago, he improved so much and so rapidly that we all thought it must only be sensory. And I’ve felt like a crazy, hypochondriacal, hovering mother because I continued to waffle on the question of autism. But now the speech therapist was validating that. Bless her.
Then we got the diagnosis and, in the hours following, I began to realize that I wanted it for a reason even more basic and entirely based in my personality type. I had been waffling for so long. We didn’t get him evaluated right away because he improved so fast, we didn’t want to label him, and we were getting him the therapy he would have had with a diagnosis anyway. So it shouldn’t have mattered, right? But still I kept waffling. Is he or isn’t he? I hate to say this, but I think I would have been disappointed had the answer been no. Because nothing would be resolved. I would still know something was wrong, but I’d have even less idea of what or how to help him deal with it. I hate being in limbo. It makes me feel frozen and helpless.
So of course I felt relief. Duh. Two years well out of my comfort zone on something as important as this? Nightmare. But now the “decision” has been made and my mind is free to move on to the business of dealing with it. And I’ll tell you more about that next week.