I'm not even sure what to say at this moment. Since Wednesday evening, my thoughts have been a jumbled mess. If given the chance to access WebMD (I am on a self-imposed ban) I would probably diagnose myself with a brain tumor, seeing as how coherent thoughts and sentences seem to be challenging, and I just feel like I'm floating off in space, completely uprooted from reality.
After working so hard for the last seven years to get to this point, and after thinking that we had done most of the heavy lifting already -- what with the surgeries and the endless testing and all of the therapies and the hours of IEP meetings and the abandoning of careers (and even part-time jobs) in an effort to stay on top of it all -- and that maybe we were in a nice spot, it's all been thrown back into chaos. I will say up front that I am thankful that it is not a chaos or crisis of physical health or survival (which we have done before, and which I never wish upon anyone), but it is still chaos and uncertainty all the same.
The appointment with Neuropsychology took almost 10 hours. I went into it thinking they would tell me, like every school district (and, frankly, every arm-chair quarterback who fancies themselves a physician, or who "means well" when it's really the most insulting and hurtful thing to say) that she was "fine" and that I was worrying over nothing. The evening before the appointment, I had a 30-minute phone conversation with the doctoral student who would be assisting with the testing, and while I was explaining my concerns to her about Bug, that stupid little voice in my head was on level 11, telling me that I was being crazy, making something out of nothing, being "one of those" kinds of parents.
But at the end of the day on Wednesday, when they sat me down, it was clear that there really was something going on, and that all of my concerns and feelings that something just wasn't right were actually... correct. I didn't want to be right, because of all that implied, but at the same time, it was such a twisted sense of relief, and a big Mental Thumb of the Nose to a lot of other people (I've had a chip on my shoulder about this for a long time, obvs).
Let's review: Bug has a chromosomal abnormality, a significant visual impairment and a neurological condition, all of which we had been led to believe were and would only in the future affect her physically. We know she may never get a driver's license. We know that she has balance issues and fatigues very easily. OK, that's fine. She can go to college in New York City or Chicago, or just find a very nice boy (or girl? I don't care) to drive her around. She probably won't be an Olympic athlete. Everything else is fine, we would always say. "It doesn't affect her cognitively."
Except, I learned this week, it apparently does. That's a whole new ballgame. A whole different league.
I had been noticing in the last year some other differences between her and other kids her age. There were things about school that did not seem to be connecting. She never began to fail, so my concerns generally fell on deaf ears, and her IEP began to be nicked away at (yet again).
Everything that Bug suffers from is more or less due to issues in the part of her brain called the cerebellum. It is the part of your brain that controls your movements, large and small. Neuropsych (Dr. R) tells me that 10-15 years ago, yes, the general understanding was that it was just responsible for motor skills. But that knowledge has changed, and they have learned that it is also a huge player in behavior and cognition. And that Bug's behavior and cognition are impaired as well. Like textbook impaired. They had these pained expressions on their faces (and a stack of assessments six inches high in their laps) as they're telling me this and I don't even know what to think or to say. That the story I have been telling myself, that we have been living, has been a lie? OK, maybe not a lie. Maybe a lie? Bug is bright enough to have covered up a lot of it to this point, but it's only going to become more apparent (like I had been noticing). So many things now make so much more sense. So many things about her behavior (not behavior in a negative sense; behavior in the pure definition of the word).
But what does this mean? They literally laughed when they saw her IEP. "That's it?" they said to me. "She doesn't have X, Y and Z?" I felt so embarrassed and ashamed, especially since I thought I was so 'on top' of everything. But at the same time, no. No she doesn't have X, Y and Z. I have been trying to argue on her behalf that she needs more support since the day she started Kindergarten but no one will listen to me, because she was never failing (as if one should only get help after they have failed, because that makes so much sense). This is partly why we were there in her office for this bananas marathon of an appointment. I need this documentation, this PROOF that *it* is there and it does exist and she needs a lot of help. Oh, reader, our poor little Bug is so out to lunch. It's adorable but also terrifying. She's an only child, so your encounter with her is likely solo, away from other children. On her own she is charming, smart and social. Surround her with children her age and you begin to see the differences.
I feel like I have to rethink absolutely everything. I have no idea now what the future is going to look like. I had banked on the fact that we had been told there were no cognitive repercussions. My brain is in absolute upheaval. I am dreading now the beginning of school. We had a terrible experience last year with her classroom teacher. I like the administration at her school more or less, but now I am going to come to them with a completely new set of "asks" (demands?). If we get another uncooperative classroom teacher this year I'm not even sure what I'm going to do. School has now become so much more Important. I mean it was important before, but I figured we would just have some basic accommodations, move her closer to the front, whatever! We're fine! She's fine! Now it's Oh Shit!
There's a private school here that caters to kids with "learning differences." I went and toured it at the beginning of summer, because, like I said, a little naggy voice was telling me to. I loved it there, but I wasn't sure we wanted to take that plunge. I've been living like an ostrich lately with my head in the sand, trying to distance ourselves from being "special needs," mainly because I'm so tired of having to justify why we do actually belong in that category. It's easier to pretend that we don't (except maybe it's not easier because I have *such* a hard time relating to people with "typical" children), because we don't have an easy "special" group to identify with. We live in the middle, and it's lonely and isolating and hard to find support. I felt like if we went to that school, I'd be essentially cutting off all the ties I had tried to forge with the Typical Kid Families (and I've been trying so hard, even though it's like sprinting through pudding).
But now I'm back to thinking, what if that's the best spot for her? Even though I know it's a difficult and loaded question, I asked her doctor if she could be successful in a typical classroom, and her response was "if she has an excellent classroom teacher and a lot of additional support, and X, Y and Z." Technically if we got that all into her IEP, great, but that's a big IF and then it has to be EXECUTED. I don't have a ton of faith in the school districts here (unfortunately). Ultimately if they cannot meet her needs, they are legally required to pay tuition at a private institution, but that happens 0.005% of the time (according to my math) and that could be YEARS in the making. Why make her suffer through that? That's not fair. I want her to be with her typical peers, but at the same time, I want her to be successful academically, and continue to love school and feel actual achievement. P.S. The private school is obviously $$$$$.
It's so hard. This whole thing is just so hard. It's a difficult pill to swallow. Everything about this is so stressful. I pray I don't give myself another ulcer (HA! BUT NOT REALLY.) I'm so, so thankful that we were able to get back up to Johns Hopkins this week, and I love everyone we meet up there, and it's amazing that all of her specialists and physicians and researchers there are women and it always puts me in such an amazing mood to be surrounded by such utterly brilliant women who are at the top of their game and are here to help and be on our team, but the two trips up to Maryland in less than a month have set us back several (and I mean several) hundreds of dollars between transportation and lodging, and that's not even including what we'll owe for insurance. Ball of Stress. I am a ball of stress! And I wonder why I'm having difficulty with coherent thoughts.
I'm trying to get over this feeling of betrayal that no one mentioned this even as a possibility before when she was first diagnosed with everything. Like how was that missed? Is she just such a unique case altogether that they thought because she didn't show any obvious MAJOR deficits as an infant/toddler/preschooler that we somehow had skipped that part? I want to call each and every one of them and ask them WHY. Dr. R tried to comfort me and say that many specialists just think within their own circle of knowledge and don't always tie it all together. I get that, but this seems to be a pretty big, enormous, elephant-sized thing to have missed.
So I'm firing up all of my engines again. We are going to be back full-steam in PT, OT and now, apparently, speech as well (that is if someone could please just return my phone calls for crying out loud). The school year begins in three weeks, and I'm going to see if I can bribe the Vice Principal to give me some insight on her teacher assignment ahead of the 31st when they're all announced (no shame here!). The reports from neuropsych will help me know how best to help her, and they have offered to call in to her IEP meeting for support. Her quirks (which are any child's quirks, really) have double meaning to me now, and I feel this weird rainbow of emotions (including dark-colored ones) when some of the really obvious ones show up, now that I know what they are. My chest hurts. Stay away from WebMD.
P.S. The only time I almost got teary in Dr. R's office throughout this whole thing was when we were talking about Bug's fatigue (which has such an intense impact on her life), and I used my usual example (because I feel like it's the most basic one) that Bug sometimes can't even make it through a grocery store trip without needing to ride/be carried. And you know what she said? She said, "So what! Who cares. Who needs to make it through a grocery store trip? There are so many other ways to do it. They all deliver now anyway." And of course she's right, and it took me out of my funk, and was a great analogy for a lot of the other dark shit floating around in my head. Thank you, Dr. R, for joining the team.
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