I’ve had that burning need-to-cry feeling in the tip of my nose for 3 days now and it won’t go away. There just isn’t a time or place that I can have a good cry and so I’m struggling emotionally to spite that fact that I really have no cause. There’s been no tragedy and our daughter’s diagnosis was expected, long awaited even. It’s a relief to have the label of Autism so that I can get her school to offer appropriate services and start therapy. Yet… I’m feeling bummed out and hermit-y. I don’t really want to talk to anybody for fear of a crying jag and also because it hurts to talk about my baby girl and be forced to really think about what Autism means for her. I can’t be bothered to get dressed. Jeans and a bra, how dare you? I just need sweatpants, to snuggle with my dogs and avoid the outside world for a while. It would be so nice to stop being a grownup for a few days.
We’ve been on this road since Stella was a toddler who seemed a bit more temperamental than one would expect. Over the past 4 years we’ve become more and more certain that there was something going on with our little one and have visited the Family Doctor or Pediatrician periodically to ask for help. Real progress came about a year ago when Stella was 5 and I told the Pediatrician point blank: “There has to be something diagnosable going on here. We need to start the process of evaluation whatever that is.” I got a referral to the Seattle Children’s Autism Center but no help immediately because they had a 9 month waiting list. I was already at the end of my rope and now they wanted me to hold? I had no choice so that’s what we did.
7 months later, 2 months before the start of Kindergarten, I was still waiting and becoming more and more nervous about how she would fair when I’d have to send her out into the fray without me, her advocate and the only person who knew how to handle her. So I visited the Pediatrician again, expressing my concern. She referred us to Occupational Therapy while we waited for the evaluation. Even without a diagnosis we could go to therapy and work on her sensory and social issues. I was amazed at how well she responded. They knew how to reach Stella in ways that made sense to her. It was an emotional experience to watch her understand concepts we had struggled with and to see immediate results. This helped my nerves immensely.
I also met with the counselor at her elementary school prior to the first day to let her know that I had a special kid who was, as yet, undiagnosed but who may have trouble in school. I tried to prepare our girl and to smooth the way as much as possible. By the start of school, she was super psyched and I felt as ready as I’d ever be. We’d already waited a year until she was 6 to start school which allowed her more time to mature and was hugely beneficial. What a difference a year makes!
Now, 3 weeks after the start of Kindergarten, we finally have our Autism Evaluation and have been given a provisional diagnosis in just one visit: Autism Spectrum Disorder. They say she has what was previously been referred to as Asperger Syndrome. The diagnosis is provisional because we still have to follow up with a Neurodevelopmental Pediatrician to do further physical tests. So far I’m told that she’s high functioning and that her physical symptoms seem mild.
Diagnosis is a relief in some ways because my husband & I now have credentials to hold up for the people who shake their heads at our concerns. Many believe that the “antics” of difficult or troubled children to be natural childhood behavior and that fussy parents like us just aren’t handling them correctly. This opinion has mostly come from our elders who perhaps take the differences in recent generations’ child-rearing methods as a personal affront. We have the benefit of science and research that simply wasn’t available to them 30, 40 and 50 years ago. So naturally there’s been a little fine-tuning to the task of raising young’ns.
It must seem smug and condescending when today’s new parents hold up our newfangled rules and standards in contrast to the way we were raised. I can only imagine how annoying that must be. Some naysayers try to tell us that many of these mental disorders didn’t exist 50 years ago (or today for that matter) and that somehow we’ve caused Autism or are just making it up. It’s nice to be able to say, “See? We weren’t kidding and we’re not the lazy, over-indulgent parents you thought.” My Mom calls it vindication, and I’m trying not to see it that way. Diagnosis really isn’t about (well for the most part anyway) saying told ya so and I don’t want to be that person. Advocating for our daughter isn’t about me but today I’m feeling a little self pity. I really need some time to shake off the sudden depression so that I can move ahead with all the energy and enthusiasm needed to keep fighting for her future.