You feel like a candle in a hurricane
Just like a picture with a broken frame
Alone and helpless, like you’ve lost your fight…
It’s been a rough go lately. Between Nik’s lingering non-specific illness, sleepless nights, Niksdad’s demanding nursing school and clinical practicum schedule, and the specter of school not yet completely eradicated, I can honestly say that I have indeed felt helpless and like I have lost my fight. Don’t get me wrong, I won’t stop fighting for Nik, for my family, for myself. Well, if I’m completely honest, maybe myself a little —it’s always easier to put myself last when there are big challenges in our life and it feels like something has to give. But I am tired —too tired to stand today. (Forgive the self-indulgence which follows.)
On so many levels Nik is doing great. He’s recovered from our Texasinine dining experience and he’s still the same happy-go-lucky little boy he’s always been. The play and laughter are still present, though the eating anything by mouth still is not. He’s doing so much better now that he’s not in school. Except…
I know I’ve written about it a few times before so forgive me if I repeat myself —I’m too lazy to find the posts to link to. Nik’s been battling this odd “affliction” that no one can seem to identify. The lymph glands behind his right ear are chronically swollen —some days worse than others and some days causing more discomfort than others; the two are not necessarily mutual. Nik also has multiple nights of interrupted sleep from this same “affliction;” he will wake screaming in pain and hitting his head or biting his hand really hard. When this happens he is usually inconsolable. Advil given through his g-tube usually mitigates the worst of the pain after a while and he is able to go back to sleep for, oh, another hour or so. Then it all starts over again.
This behavior is not limited to overnights; it happens sometimes in the middle of a play or therapy session. This morning, Miss M got to witness it firsthand during feeding therapy. I thought she was going to cry because she was so upset for Nik. As quickly as it comes on, sometimes it can go just as quickly.
Throw in the lingering low-grade fever Nik’s been running nearly every day now since mid-September —in conjunction with the upper respiratory gunk, the ear infection, followed by the GI bug. Well, you might imagine that we are all a bit frazzled and concerned. Something is going on but no one seems to be able to tell us what.
Then, there’s the ugly specter of our school experience which isn’t quite over. You see, though we’ve had him home from school since September 17th, we haven’t yet officially removed Nik from school. I guess, technically, they can’t cite us for truancy since he’s not legally required to be in school. Still, the district might be able to argue that we are interfering with their ability to provide Nik’s free, appropriate public education (FAPE). The only reason this might be important is if we need to keep them in the picture after all. Though, one could argue that Nik’s IEP as it stands right now —still missing a speech/language/communication section with any evaluation of present levels of functioning as well as no stated goals and objectives, PT and OT goals which do not presume competence and do not address Nik’s significant sensory needs —could hardly be construed as a promise to deliver FAPE even if Nik were in school seven days a week!
I am still waiting for answers from Legal Aid. Meanwhile, school has scheduled an IEP meeting on the 15th for us to officially remove Nik and to “review the educational services for which Nikolas will no longer have access.” Ordinarily that wouldn’t make me anxious except I know that Medicaid now has a copy of the letter of medical necessity from Nik’s doctor. You know, the one that says he shouldn’t be in school due to his health? Yeah, that one. I am worried that they are going to try to use that as leverage to keep school in the picture and maintain responsibility for providing services. If that happens, we are back at square one as far as IEP’s go.
I can hear the old Clash song in my head, “Should I stay or should I go now? If I stay there will be trouble. If I go it will be double…” ARGH! Why can’t it ever just be a simple, cut and dried situation? And worse, why do I feel like the floor is constantly shifting under my feet?
I need to take some time to write out the pros and cons of each decision but I feel like I don’t have complete information for either case. On one hand, having school involved will mean slugging it out for an appropriate IEP; I already know that will involve due process and, possibly, litigation. Still, it would resolve the issue once and for all —hopefully in favor of increased and more appropriate services and supports for Nik. There are so many unknowns and the process can take so long. It could, possibly take us a year or more to get things sorted out.
On the other hand, if we simply cut school out of the picture, we run the risk that Medicaid won’t or can’t cover what Nik needs. Can we muddle our way through to cobble together some homemade program for Nik? Quite possibly, but it’s daunting and could have some pretty significant gaps in it —especially regarding speech/language/communication.
Why can’t I make a decision and stick with it and trust myself implicitly? Why am I so afraid of making a significant misstep? Why am I feeling so weak right now?
Why are you all so damned far away that I can’t come over and cry on your shoulder or drink tea (or something stronger) in the warmth of your living room or sit in the dappled sunshine in your back yard and recharge? It feels so hard to pick myself up and brush myself off right now but I know I must. But it’s lonely. Very lonely.
Even this doesn’t seem to help me today. Sigh…