I thought it went okay.
Then again I woke WAY to early. And couldn't toss n' turn back to sleep. Because all this mess was preventing me. So maybe I'm wrong?
I was asked if I'm ready for this? Trevy going off to school.
I was getting there. Until full days were mentioned. Seems the kids with more intensive therapy needs get the full-day treatment plan.
I am not ready for full days.
Aside from all the other reasons...my home-school mommy guilt would eat me alive. I've wrestled that one now for months. How can I home educate the big kids. And not the baby. The reality is...I enjoy the priveledge of homeschooling Toby and Bristel because I can. I have the ability. And energy. And in a way...it helps me deal with the guilt associated with how much I have to invest in Trevy's care. I suppose in a way I hope it fills that hole in their little hearts. And that someday. When they're all grown up. With munchkins of their own (because it's not until you have munchkins of your own that your eyes are really able to see some of these things). They'll look back and realize that at least a portion of our choice to keep them home (for
now) was made out of love.
That was a rabbit trail. That I may well yet delete.
The Trevy reality is that his needs are greater than what I have to offer. At this point in his life. Whether or not I am ready for Trevy to go to school is beside the point. Trevy is ready for school. The question now is...are they ready for him?!
I think what's weighing so heavily on me is how to translate all of this information about Trevy. Some of which isn't read in his very large file. Some of it is felt. And certainly the majority of it is misunderstood.
I have never really figured out how to bridge that gap.
Yes. He needs intensive therapy.
But no I don't think that means he needs to be in a self-contained class.
His little brain is free now. Free to learn. And absorb. And re-wire. And I want to redeem every single moment! I am convinced that an integrated (a classroom with both typical or "role model" and special needs children) setting is the best choice for him right now. I think being around peers that he can imitate IS therapy.
Three months ago? I was much less convinced of the importance of peers. Because, frankly, Trevy didn't really notice them.
But radical things happen. When radical rescue measures are taken.
The other piece of the Trevy placement puzzle that is weighing on me is his safety.
It never ever crossed my mind that he would not have a one on one aide. To me it was just a given. Seeing how I can't cook dinner without him strapped in the high chair. Or else he'll have chewed his way half through the closest electrical cord. Which by the way...would explain why I don't cook dinner very often these days. And I'm just picking on dinner. Truth is...I can't do anything without having one eye on Boo Boo Head Boy. Which is why we often run out of undies. Among other things.
Trevor needs constant supervision.
He cannot do stairs alone. He cannot self feed safely. Yes, he is capable of putting food into his mouth with his fingers (not utensils). No, he is unable to stop shoving when his cheeks have puffed to capacity. Choking = not safe. He cannot sit through more than 5 minutes of a TV show. And he doesn't even sit for that. He stands. Nose to nose with Elmo. For 4 point 59 seconds. Or less. More often less. And there are more examples I could think of if I'd had my coffee already. But Jonathan makes the coffee. And he's smartly still snoozing.
To me (seizure mommy humor) it was a no-brainer. He needs an aide.
But I was told that aides are not typically provided. Somehow I'm thinking that Trevy may very well be the most A typical kiddo in his class. I'm thinking he could possibly be the exception this year. Unless there's another little half brained kiddo running around here that I haven't met yet?
Which I expressed several times over. While also sharing that my positively number one concern is that he not just get any aide. But that it must be an aide capable of recognizing The Seizure Monster dressed like the one in this video clip. (editor's note: the link is now corrected to view Trevy's Infantile Spasms relapse) It takes special eyes. Someone who understands that every seizure is not a grand mal seizure. While also knowing that it could be. And someone who understands how imperative it is to catch it immediately.
It struck me in the wee hours of the morning. What a wonderful job the Epilepsy Foundation has done of removing the stigma associated with seizure disorders. Seriously. You say seizure...and people don't miss a beat. You say 100s of med resistant seizures daily...and they blink and nod like they hear it all the time.
In Trevy's case...I think a stigma (which to me means some sense of urgency) would help. We are not dealing with garden variety epilepsy here.
We are dealing with a kid who...up until 3 months ago...had more seizures in a day than there are seconds. A kid who had radical brain surgery to control them. A kid who is still at risk. Not just of seizures. But of refractory seizures.
I have not come this far to toss it to the wind!
I would gladly trade extra therapy for a set of eyes I trust on him at all times! I don't think I should have to trade. But I would. With parameters.
In my mind there are four qualified people.
And Miss. CNA. Who has worked with Trevy for almost a year now. And knows his seizures almost to the level of myself. Who has in the past...seen pictures snapped mid cluster and posted online...and emailed to ask if he was seizing.
Miss. CNA makes the most sense. Unless Grams is looking for work?