I’ve started about 3 different posts on Stella, the Early Steps program, and her therapy (therapies, at this point). I’ve deleted them all for various reasons: too angry, too boring, too clinical, too long. To summarize where we are in bullet form:
- In October she was due to be renewed or kicked out. We fought to have her reevaluated, figuring we’d no longer qualify for participation, and were OK with that. We honestly didn’t think we needed much, if any, therapy at that point, and we wanted something to have as a baseline in case we did opt for private intervention at some point.
- Nurse Ratched came and evaluated our kid. In addition to spilling hot tea all over my living room carpet, she was impatient and seemed to be actively seeking for signals of autism up to and including my kid climbing on a chair and saying her ABCs. We weren’t impressed with her professionalism and her report was bunk.
- Somehow, some way, we not only qualified to stay in the program, they assigned us an occupational therapist. No goals were updated for anything else and the goals we had were obsolete by far. My first instinct was that for some reason, some one or some people wanted us in the program, either because we were just a nice, easy family to work with or because they perhaps need “success” stories to pad their numbers.
- The OT had one session and promptly announced that my kid didn’t need weekly OT, if she needed OT at all, that she saw no delays or deficiencies, and if anything, Stella was ahead of the curve in many ways. She felt she would have a struggle justifying billing for “services,” and that she would primarily just be coming by to play with my child.
This was all a relief. My primary goal was to get my kid caught up – to have her be “normal.” I walked a fine line between being angry at her pediatrician and Nurse Ratched for making us worry needlessly, getting impatient with some of the support staff and therapists, not wanting to challenge “experts,” and then sheer relief when thing seemed to fall into place. Will and I fought several times about various facets of this process. Not to toot my own horn, but I did a hell of a lot of research on childhood development during it all. While waiting for the bureaucrats to finally get their shit together and get services going for my daughter, I was taking steps on my own. Much of what I found and was utilizing was very similar to what I saw the “professionals” use. Don’t get me wrong: I’m not arrogant to the point where I think I’m a miracle worker or a speech/occupational therapist. I just do think that research, tenacity, and hard work can go a long way. I also know that even at “her worst,” my kid was borderline. But when you’re borderline, Googling stuff can convince you of the worst. Every. Single. Time.
So we’ve come to the point where we’re ready to bid the ES program a fond adieu. It’s no longer for us. And I can now say this not with anger or bitterness, but with a high level of confidence that we just don’t need it. The OT has been wonderful –all 4 times that we’ve seen her- in that she has been very validating of feelings I’ve had for a long while, that Stella is fine, and that any speech issue we once had was a delay vs. some type of disorder. The speech therapist and I had discussed a gradual phase-out for the purpose of ensuring that there were no “regressions” at the cessation of therapy. That gave me pause for a while, particularly as I study up on normal regressions in toddlers which occurs as you bring a new baby into the house. But I think that any regression will be temporary. Furthermore, the therapy is a burden, particularly if we don’t need it. It’s more shit to keep up with, more reasons to feel compelled to frantically straighten and clean my house. That’s not a bad thing in and of itself, but at this point in a pregnancy with Stella making laps around me, I don’t need it. It’s making me crazy.
Case in point, the OT came one last time Friday. Stella was taking a later-than-normal nap. I watched the clock for an hour, anxious as hell that she wouldn’t wake up in time. I finally woke her 30 minutes ahead of time, then panicked because (surprise, surprise) my kid wouldn’t eat lunch the second she was awake. Then I panicked because the therapist was going to be here, Stella would be hungry and act out, and therapy was going to go badly. The OT may reassess her opinion of my kid and change her/my mind about my daughter’s “condition.” What did I do? I gave Stella a damn Little Debbie snack cake for lunch, just so she’d eat something. I was worried that my kid wouldn’t eat and wouldn’t be receptive to the therapy she doesn’t need. That’s bonkers. That’s batshit. And I’m about to have a newborn added to this mix, with his naps and feeding “schedule” to contend with.
I can’t say I’ve had 100% success with the Early Steps program, but once we got through the red tape and to the meat of speech therapy, it certainly didn’t hurt. Again, I think much of the progress was largely fueled by us – both of her parents working diligently with her. I also think that in our case, this whole thing was a matter of my kid being too stubborn and too busy bulldozing her way through the world, exploring, to speak until she was damn good and ready. However, I am very glad that programs like that ARE around and available for families that do desperately need help and who have kiddos that won’t/can’t overcome their difficulties as easily as we did. And with budget cuts in all departments for programs like this, I absolutely do not want to take assistance that we don’t need for obvious moral and ethical reasons. Yet more incentive to bow out ASAP!
We are so very lucky. I feel a bit like we have a touch of parental survivors’ guilt. We dodged a bullet. Almost a year ago, the “A” word was thrown around – autism – and I went from dreaming of my little girl going to MIT or the Cordon Bleu to….not. We know folks who have children with problems that will be life-long. I feel sad for them – not that their kids are not precious to them and a source of great joy – but that their road will just be bumpier. There’s no way around it. I do feel as if I have a much greater awareness and empathy for them now than I did before. That is never a bad thing.