Something I don’t talk about very often in my outlook on the future. It’s not that I’m hiding something from all of you, it’s just that I don’t like to think about it.
Why? Why don’t I like to think about the future? Because I fear it.
There is so much going on in my life that I barely have a chance to think past the moment, but when I do, there are things that weigh pretty goddamm heavy on me.
Right now I’ve been very preoccupied with Gavin. He’s been staying with his Grandparents since October of last year. It’s worked out really well for the part. Gavin’s in a safe and loving place. Our house is no longer filled with his destructive rage.
That’s good for all involved.
Having said that, right now we have no idea what we are going to do when school let’s out for the summer.
I don’t know how we are going to work this out.
He can’t come home, the trauma he’s inflicted on everyone, especially Lizze (his main target) is far to extensive.
Having said that, even if we wanted to bring him home, we couldn’t. Gavin has Reactive Attachment disorder and one of his manipulative weapons of choice is the tantrum. We’re talking extremely loud, long, violent and self-injurous fits of rage.
These should not be confused with your run of the mill Autism related meltdown. These are two very, very different things.
Anyway, he very prone to these fits of rage when he’s at home because we have to run a tight ship in order to keep everyone safe. Gavin doesn’t like restrictions and so he rages, in order to try and get us to back down.
On its own, this would be bad enough.
However, since this whole autonomic dysfunction/crisis thing came to light last year, things have become much more serious.
Basically, if Gavin throws a tantrum, it could trigger a life threatening autonomic crisis (as it has in the past). We can’t afford to take that chance. Every time he goes into a crisis, there’s no way to know if he’s going to ever pull out of it.
When he’s at his Grandparents house, things are more relaxed and Gavin doesn’t have to interact with others the way he would at home.
His stay hasn’t been tantrum free but they are much fewer than if he were at home.
Anyway, because of his fragile health, we can’t send him to a summer camp or anything like that either. He basically, can’t do much, physically, anymore without triggering more autonomic problems.
I fear that coming home may be our only option this summer. That thought keeps me up at night because I know what bringing him home would do to my family and so does Gavin doctors and our family therapist.
We will do our best to work something out, in order to avoid this but nothings for sure and that’s scary.
If you’ve ever dealt with a reactive attachment kid, you are likely all too familiar with the damage they can inflict on a family.
We’re stuck in a no win situation. This is the very definition of damned if we do and damned if we don’t.
His mental health issues limit what we can do for his physical health issues. His physical health issues have kept him out of treatment centers because he’s far to fragile and no one is equipped to deal with the physical health side of things.
Our options are very, very limited. There is only one thing that I know for sure.
He simply can’t come home.
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Can you find caretakers to watch him at your parents house alternating with a few hours at home a week? You could use DDD hours if you have them to cover a portion of the cost.
can I get you to explain what an ‘autonomic crisis’ is please?
@Guest Super simplified, it’s a change in the involuntary functions of the body that can range from mild to life threatening. Like very high or low blood pressure or heart rate, or sweating, or altered mental status. Sometimes there are triggers, sometimes it is just too complex to figure out. It’s very common in mito disorders.
@Guest kbrower1975 sorry. I missed the comments here. Basically, the part of the brain that controls things like breathing, heart rate, blood pressure and smooth muscle control like vasodilation doesn’t work right. When things go really bad, it’s called a crisis because all of the above is no longer properly controlled.
I just read one of the posts – Yes, what about PCA services or “support staff” services as my son only qualifies for .5 hours a day official PCA services. Through a county waiver, which I have to pay for – but it’s based on your income (my son’s father only pays $15 per month). It has saved my life! I don’t have half or 1/4 or 1/8th of the situations you have and my son qualifies. Maybe you did note something about this in your prior posts and I missed it. I just wonder – I’m in Minnesota – maybe in your state – they don’t offer the same, but I would think they would offer something???? I surely hope so. As for the way off future, I used to put it off and not worry about exactly like you as the day-to-day operations are hard enough. But, now, my son is 17 – will be graduating in two years – then what? It scares the crap out of me.
Well, Gavin knows what he can’t do, right? Presumably he doesn’t want to have an autonomic crisis and keel over either, and maybe the threat of that happening would stop his tantrums…oh wait what am I talking about. Gavin isn’t the most logical of creatures.
MeaghanGood You’re absolutely right. He does know what he can and can’t do. The problem is lacking the capacity to implement that knowledge. He’s experienced global regression and his cognitive ability is diminished. He remembers how much he can drink, but I don’t believe anything would stop the tantrums. 🙁
lostandtired MeaghanGood And, from what you’ve said about his manipulativeness, maybe he might be more likely to throw tantrums because he knows you’d panic about the idea of him keeling over, and maybe then he’d get what he wanted.
MeaghanGood he’s already done that. He’s also faked his symptoms before as well. It’s truly a no win situation. 🙁
Doesn’t Gavin get extended school year? With his documented regressions, it should be at the least, a summer program through your son’s school. At the best, a full year school. A family I know with a severe autism kid (not RAD, I know) gets in home services through the school on the weeks there is no summer program or regular year program. Is he eligible for PCA hours? I know he has fragile health, but there are other people that could possibly help out during the free times at his grandparents’ home … there are lots of mito parents out there and a lot of us are willing to help out other people as we’ve been in other ugly situations where it seems there’s no good answer.