Through all the medical crisis, poor ds has been dragged to the hospital on a daily basis. We've tried to accomodate his needs as much as humanly possible, but the poor kid has really struggled.
We made sure he had access to a tv, video games, and chances to play and have fun, and visit with kids (cousins and visiting friends). And time to do homework where it is quiet and spacious.
We tried to keep to a routine, and make sure he got up and went to bed at the same times, did homework at the same time, ate at the same times, all that kind of thing. I tried to allow him kid-time, to be free of the restrictions of the hospital environment. He was sheltered from the hospital talk.
But it's just not the same. We all know that. And ds suffered for it. He is frustrated, missing his normal life. (We all are.)
He started having meltdowns in school. And the school has no sympathy for him. We ended up late at the hospital one day, when MIL was not expected to survive the night, and we didn't get to homework. He actually did part of his assignment, but not all. I wrote a note to the school, explaining that we were there late, didn't get to do homework, that MIL is in critical condition, etc. He turned the assignment in one day late. So you know what they did? They still dropped his grade one letter grade for being late. It went from an A to a B, and it was written right on the paper that it was marked down for being turned in late. Which is what they do for any kid who turns in homework late. They have absolutely NO consideration to his circumstances. What a**h*les. No compassion at all. Ds was FURIOUS. (So was I.) And he crumpled up the paper and threw it on the ground. Can't say that I blame him. I felt like doing the same thing.
He had several meltdowns after that. Not surprising. When you're dealing with people who have no compassion to begin with, they aren't going to be supportive of autism either. I received phone calls to come and get him because he climbed under a table. (You know, why the hell can't they just LEAVE HIM ALONE when he does that? He'll come out in a few minutes. Instead they all throw fits, try to force him out, and make the situation worse.) Poor kid.
So we made some changes. He's rarely at the hospital anymore, which means I'm rarely at the hospital too. Dh feels the need to be there all the time, and I can understand and relate to that. But it's just not good for ds.
I had an early day off of work, so I spent time at the hospital while ds went swimming with his daycare. I wasn't able to pick him up until a certain time, so I stayed at the hospital. It gave me some good visiting time, and gave ds time to play. Or so I thought.
Turns out, playing at the daycare was a nightmare. The place just doesn't 'get' autism, and they don't accomodate his needs at all. I'm so sick of this. Ds ended up being bullied by the kids, punished by the adults, and spent all day just miserable. The only thing he did enjoy was the swim time, so at least he got something positive out of it. But I just have lost all hope where daycares are concerned. None listen, none care, none are any good for him. It sucks.
But since we severly restricted ds's hospital time, he has really bounced back. He's happier, fewer meltdowns, and life is much less stressful for all. Since I can't spend as much time at the hospital, I've spent time trying to cook real food for the rest of the family. We're so sick of restaurant and carry out, we could scream. So I made batches of chili and beef stew, and sent some to FIL. It's good to eat real food for a change.
But I'm so tired of the school and the daycares. I hate dealing with these places. They tell you they'll be supportive of your child with autism, but they aren't. They won't listen to anything you tell them. They don't want to learn. They'll try some crap that their own books and advisors suggest, but they won't put any real effort into it. They don't want to have to deal with it. The feeling is mutual. I don't want to deal with them either.
You can tell them your child has sensory issues, and loud noises, touch, and stimulating environments can be disturbing and frustrating to him, but then they get angry because he melts down during a fire alarm. They say they'll provide a one-on-one aide, yet the person is always missing when dh has a meltdown or takes off - she's used like a teacher's aide, instead of a student's aide. And they get mad that he melts down in the gym during a game of dodgeball. Idiots. We tell the daycare that he gets very upset if you punish him unjustly, punish him for something he didn't do, so the next time he is a victim of being bullied, they punish BOTH kids. And don't understand why my son locks himself in the bathroom because of it. Idiots. And the school tells us they are so sorry to hear of all that we're dealing with at the hospital, and if there's anything they can do to help ds with it, and then they dock him a grade for turning in one assignment one day late. A**h*les. I tell the daycare that he has autism and sensory issues, and when ds gets out of a warm swimming pool into a freezing cold locker room, they get ANGRY because he tells them he is too cold to get dressed. I looked at the caregiver and started to explain that he has autism and sensory issues, and the guy cuts me off and yells, "YEAH, I HEARD!"
A**h*le.
Sorry, I'm very frustrated with all of this, my patience and strength are stretched too thin.
I wish I could find a school, or even a single teacher, that can deal with my son with patience and understanding. I wish I could find a daycare that doesn't punish him for his differences.
The funny thing is, ds is pretty easy to deal with at home. We've got things running smoothly here. He's happy and productive and successful in his own environment. And in most any other environment, with the obvious exceptions of school and daycare. Yeah, I know, those are significant exceptions. But what do I do? I've taken him to psychiatrists, psychologists, behavior specialists, and therapists. They all tell me the SAME thing! They all tell me, "They need to provide your son with support. They aren't supporting his needs at all."
But they claim they are. They provide all kinds of supports. (At least the school does.) Of course, they admit that they don't do it like they're supposed to. They don't show him his behavior chart several times a day like they are supposed to. Funny, when they DID, his behavior improved, and when they didn't, his behavior worsened. But they insist that it doesn't really work anyway. Go figure. Oh, and they give him an additional table and a chair. So? He doesn't really need that, and we never asked for that. That was something they believed worked because that's what the school told them to do. We keep asking for patience. They show him NONE. We ask for understanding, they accuse him of being lazy. We ask them for suggestions on how we can help, they tell us to take away his video games. We did that and his behavior went ballistic. Video games are his obsession, his special interest, his perseveration, his lifeline. The therapists all challenged this. They said it was the worst thing we could do, and found the school's reasoning on this to be very misguided and uninformed. We ask the school to not touch ds when he is upset. They respond by dragging him out of the classroom. We ask them to allow him time to regroup, they insist he behave NOW. The daycare asks us for information about how to deal with our son's autism, then doesn't share that information with the other caregivers that work with him.
I suspect that the biggest problem we have is that ds is so high functioning, and often appears to be NT, that everyone expect him to *BE* NT. Isn't that the irony? If he were non-verbal for example, they would start out with the understanding that he's different and is entitled to accomodation. But since he looks NT, and often appears to behave NT, therefore he better act NT or he'll be punished.
I'm so tired of all this. I wish I could just pull him out of school and homeschool him. I can't afford to do this though. Especially now. I wish I could yank him out of daycares. Obviously I can't do that. But none can work with autism. Not one.
It feels hopeless at times. Not living with autism! That's the easy part. It's dealing with the outsiders. The school is hell. The daycare is hell. Home and family are the haven.
I know ds will be fine. He'll get out of this hell of school and daycare, and he'll find his niche. He'll be productive and he'll be happy. Really happy. He's very easy going, as long as you understand him and have patience and let him be himself. He doesn't ask for much really. And if you let go of the idea of treating him like you were treated as a child, he will thrive. Drop your conceptions of "lazy" and "spoiled," and you'll find that my son is incredibly sensitive, generous and tenatious. Let him be "lazy" for ten minutes, and watch him work harder than all the other kids combined for the next two hours. "Spoil" him by treating him with respect, just as much respect as your OWN needs deserve, by letting him do things his own way, and you'll find that when you respect him and his needs, he will also respect you and your needs, and he'll be very happy to work *with* you and not against you. Incredibly easy. But obviously too much to ask of a school. The sad part is, they would be shocked at how simple and easy this is, and how little they would have to do, and how much stress and chaos it would remove from their school.
I'm so frustrated. Not a 'give up' kind of frustrated. Just irritated that there isn't any place out there to help us. No school. No daycare.
No, I guess there is one place - the autism school. The only drawback there is that the school is tiny, and far more restrictive an enviroment than he needs (most restrictive as opposed to least restrictive), and they don't believe he belongs there. They understand our unusual circumtances though, and have offered to help get him in if we want to go that route. It doesn't seem like the ideal place for him for a lot of reasons. But neither does his current school. It doesn't appear to be any better for our son, but it doesn't appear to be worse, either. Can't we take a step upwards, instead of down or laterally?
I don't know what to do. All I need is that magic winning lottery ticket, and I'd open my own school. I'd hire people who are patient and kind. I'd hire people that love learning, and love teaching, and think learning ought to be fun. And I'd welcome the aspies who don't fit into the NT schools yet also don't fit into the autism schools, and give a safe haven to the kids who struggle against so much.
I can dream, can't I? :)
No comments:
Post a Comment