We went over to Marin and suffered through sessions with developmental pediatricians. Twice, actually: May and Nov. of 2005. We could see the whole rest of our lives laid out in front of us: some monotonous, gray, sad routine with all the color leached out, the way I imagine the Dust Belt in the depression.
All of this is natural and probably healthy. We needed to feel shock and sadness and a million other things. But we also needed to take care of ourselves emotionally and financially and think intelligently about our options. (All of this is far clearer in retrospect. I’ve since become much more able to sign a paper with words or terms on it that upset me if it’ll help Isaac and us get what we need.) I wish we’d been able to feel what we felt and then separate it from what we needed to do.
What I wish we'd done:
1. Realized that a diagnosis, especially at such a young age (Isaac was not even 2 at the time of the first session), does not guarantee anything and is essentially an interim progress report/guesstimate. It's current events, not prophecy.
2. Realized that, whatever our feelings about our child's potential and abilities and progress, the label did not have to reduce him in our eyes to anything less than what he was. It could have, certainly. But that was really up to us. The label did carry enormous potential to make our lives somewhat easier, at least financially.
3. Found out, immediately, what our insurance would cover with an appropriate diagnosis and what it wouldn't. Like casinos, insurance companies are not there for your best interest. But if you learn the rules, you may be able to get some coverage. What minimum info needs to be on the submission to get it paid? What will and won't they pay for? Will they reimburse speech? OT? An aide in the classroom? Floortime?
4. Where else can you get help? If your child is under 3, get in touch with your regional center; you will need to suffer another developmental evaluation, which will probably feel like piling-on (our head evaluator sort-of-joked that our son met “only five of the six criteria for autism, so he's almost there”—hilarious) but which can help you learn to manage all this. Regional centers can be great helps in providing support for services, classroom aides, and social support; in our experience, some of the people there were extraordinarily personable and helpful in guiding you through what can feel overwhelming. If your child is over 3, you will need to through this with the school district. This can have its ups and downs, but it can be useful in getting appropriate help. Isaac has really liked his district-provided school, and we’ve been very happy with and touched by the commitment and skill shown by all of his teachers.
I think that our biggest lapse was letting the paralysis get to our heads as well as our hearts. Emotionally, we were traumatized, but we weren’t going to make it any better by just feeling awful. Seeing what the right diagnostic codes could do for us, and what agencies could do for us, meant a great deal in making our lives easier; it was our own form of magical thinking to assume that somehow writing some numbers down on a claim form or getting assistance from various organizations would mean writing them into our vision of our child. That's just not the case.
The more you can remember that the world still works the same way--trust yourself and your sense of your child; don't fall into an emotional pit--the greater your chances of getting through the throes of we-just-got-diagnosis-X-and-omigod in one, or at least no more than a few, pieces.