Life with a special needs child is often a series of ups and downs. The past few weeks were one of the downs. This week we seem to be back on the upswing again. It's often like that - sometimes it's two steps forward and one step back, other times it's one step forward and 374 steps back. At least that's how it feels when you're down deep in the trenches.
The meeting at Maya's preschool was difficult, but better than expected. The smartest thing we did was to bring Maya's psychologist with us to the meeting. As we prepared for a confrontation, Jay realized that perhaps we hadn't shared enough about Maya's issues with the school, that perhaps their seeming utter contempt for her difficulties was born in part out of ignorance rather than general asshattedness (yes, that's a word. I just made it up. Funny, my spellcheck doesn't like it.) L (the psychologist who's been working with Maya every week for a year now) was able to present Maya's issues to the director and the teacher in a much more objective, dispassionate manner, which gave her the credibility that we as parents lack. She couldn't be seen as just making excuses for poor behavior the way we could.
As we spoke, it became clear that the teacher himself knew almost nothing of this (I can't believe they didn't fill him in better). The director knew some, but she had reached a number of her own very erroneous conclusions which were really coloring her response to Maya, and had probably infected the rest of the staff as well. By seeing her as manipulative rather than overwhelmed and overstimulated, she was responding in ways that are not at all appropriate to Maya. This is the same woman who flat out told me that I would be doing Maya a tremendous disservice by putting her into a special needs kindergarten (where she would have a maximum class size of 12 instead of 36, where she'd get all the support services she needs, and where EVERY SINGLE PROFESSIONAL involved in evaluating or treating her agreed that she needed to be) and tried to make me feel like an incompetent parent for choosing that path. (No, not going there, I'll just get aggravated all over again.) Because Maya has a tremendous range of function - from extremely high to much lower - appearances are often deceiving. If you see her at a high functioning moment, as she often is for things like circle time, you would be hard pressed to see her as a child needing any kind of support or accommodations, whereas if you looked at longer periods of time her challenges would be obvious. The director was basically looking at a very small slice of "Maya" and basing all of her interactions on that. Unfortunately for Maya, that sample is not representative.
Once faced with the reality of Maya's special needs, which include severe anxiety issues and difficulties with change (hello, new teacher! The director had been claiming that "it's been a month, she should have adjusted by now, therefore this behavior is simply bad behavior. Mama bear claws coming out now...), sensory processing difficulties, and major challenges with expressive language (the ability to have a normal two-sided conversation, as opposed to the ability to physically make the sounds) she was forced to admit that perhaps she'd been taking the wrong approach with Maya, judging her unfairly and holding her to a standard that she is not capable of right now.
We spent about 90 minutes there, talking both about where Maya is now and about practical means of helping her. I also had a light bulb moment when the director told me (for the first time) that the worst of her tantrums were coming at about 3pm, and that during those episodes there was no reaching her. The director tried to force me into letting them have her nap again. My response? Over my dead body. She's nearly 4.5, she does NOT need a nap and hasn't been napping at home for over a year and a half. Without the nap she's going to bed at 9:30 or 10, with the nap it was often after midnight! No way no how am I agreeing to a nap. The director tried to insist that her behavior was the result of "cumulative fatigue" (my ass it was!). Of course her behavior was ratty, she was more than likely starving by 3, which would just about guarantee a severe breakdown. With all of Maya's food issues, she often ends up eating nothing but carbohydrates for lunch. All that rice or pasta is fine for giving her a quick energy boost, but then sets her up for a major crash a few hours later. I asked them to give her a piece of fruit or other healthy snack while the rest of the class is napping.
Knock on wood and positive thoughts to any deities you may or may not believe in, there's been a huge improvement in her behavior so far this week. I don't know whether it's the snack or whether it's an improved attitude on the part of the staff now that they have a better understanding of why Maya behaves the way she sometimes does, or even whether she's just finally adjusting to the new teacher, but things this week are on a very much needed upswing.
We're still in the middle of evaluations, but the official diagnosis is now looking like a psychological, as opposed to neurological, one. After countless rounds of testing they have finally ruled out PDD (the autism spectrum). Maya has a number of traits in common with PDD, but hers they now believe stem from anxiety and SPD. They did refer her for an EEG and bloodwork, but that is mainly to rule things out. None of this really means anything in terms of what therapies she needs or how to treat her, but it does mean that they're more optimistic about the long-term. They were particularly encouraged to see that she is using more meaningful, symbolic play than she was 6 months ago.
Oh, and she aced her speech evaluation today. As always, there's still a long way to go, but she's moving in the right direction again, and with that I feel as if a 4-ton weight has been lifted off of my chest, at least until the next low when it will come crashing back down again.
For now though, things are good and my sweet loving girl is back.
And another one for the "life is good" file - after a three week illness plagued delay, Jay and I are finally going away tomorrow. We'll be gone for two nights and will not be bringing a computer. Catch you all on Thursday.