I feel lost.......

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Registered: 03-27-2003
I feel lost.......
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Wed, 02-08-2006 - 4:17pm

I also feel completely miserable.......This is mostly a vent

Sam is having a rough time at school. He can't seem to focus at all and is getting into fights and into trouble during any slightly unstructured or independent work period.

He needs an aide and I've posted here about it. Each time we have a Team meeting I get some other accomodation for him, but I'm not sure how to get an aide.

I have to drop him off at the office in the morning now because he cannot go to the gym and line up. He used to be fine with it, but since Jan. he's been getting into fights every morning. I already pick him up at the office in the afternoon so he can avoid lining up at the end of the day.

Sigh......I'm just really tired and still mourning the loss of my "dream" child. Sam is pretty much incapable of doing anything independently without constant reassurance and redirection. If he hits any kind of little difficulty he, "can't do it." This goes for putting on a shirt with a neck line that gives a little bit of resistance and for reading because he cannot immediately recall the sound of a letter and is still mixing up some letters. His memory recall sucks. If he can't think of it right away he can't think of it at all. So when he gets into fights and I try to figure out what's going on he can't tell me because he either, "doesn't know" or "can't remember." Not that it would help much since he wouldn't remember any social stories, comic strip conversation about it blah, blah, blah anyway. And he misinterprets things and gets all mixed up about stuff nothing is getting through to him. No amount of rewards at home or consequences seem to help at school and he doesn't seem to really care much or understand what the big deal is anyway,

I feel like I'm working my butt off for absolutely no reason. I've been trying to reach some kind of equilibrium with this kid since day 1 and I've gotten nowhere. How is he ever supposed to function in the world?!?! He is a good kid, very funny and smart. But he has no drive to learn or do anything other than watch tv and play with his toys. He plays well with kids outside of school and is very outgoing. I've thought of homeschooling him, but if we have a long weekend or vacation time at home he'e a complete bear by the end of the week because he's so sick of me!!!! I think we'd both go bonkers.

Alright, I'll stop. I know that this sounds very pessimistic and hopeless and even perhaps resentful. Please if you feel the need to lecture me about all the great things about my son and how lots of people with ASDs make great contributions to the world - don't. I feel guilty enough, thank you.

Chrystee

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Wed, 02-08-2006 - 4:32pm

Nope, not going to lecture. What I am going to say is that I often feel just the way you do right now. And it rots and sucks the big one.

Will they grow up and be independent. I don't know. I don't know that anyone knows for sure. Sure lots have been able to but some haven't. No one can give us the magic crystal ball to know for sure and it is scary. I also often wonder if all the work and effort is worth it. Are they really making more progess with all this work than they would without it? I think that is natural to feel and question

I think it is hardest with our kids who are in the middle. It is the constant "I don't know's" that kill me. And then what kind of supports will they accept or be able to access if they need them. Sometimes I think (and I know that this likely sounds stupid) but if I had to have a child with special needs it would have been easier to have a child with more obvious and significant needs. Then at least you could know and accept them as is and hope for as much progress as possible. But all this constant wondering of if they will be independent and able to function just really gets to me sometimes.

My husband says I shouldn't worry about it now. That they are still young (10 and near 12). Worry about that when they hit transition age. I say that now is the time to worry. If I wait to late to prepare us and them for it they won't have a chance. How can you not worry about it.

Well, that is my own personal vent on this. Wanted you to know you are not alone.

Renee

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Wed, 02-08-2006 - 4:39pm

I can't thank you enough for your reply. I have had those same thoughts about having a child with a more obvious disability.

thanks

Chrystee

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Wed, 02-08-2006 - 4:52pm

Hugs, Chrystee.

No lecture, here, either.

I know exactly what you are feeling. I feel it often.

I know how you feel about a more obvious disability, if you will. My half brother has Down's Syndrome. I don't know how many times my dad has commented on how much easier it was to deal with the school and get help for that brother than it was to get help for my other half brother that is pretty severely dyslexic. The second brother looks and behaves "normally" but couldn't function in class. Gee, I wonder why. They didn't discover the dyslexia until he was in high school. At that point, he was done with it all. He had dropped out. He later went to an alternative school and graduated.

It is hard, it is uncertain, and it is draining. And we all understand. Vent away!

Crystal

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Wed, 02-08-2006 - 6:04pm

Chrystee,

Just want to let you know you are NOT ALONE!!!!

Hearing "I don't know", and "I don't remember" is SO familiar to me. I get that from Alex all the time. I feel like I just can't get across to him, no matter how we approach it. It's so difficult to teach right from wrong sometimes.

Not a lecture, but do what you can do to push for an aide. It sounds like he really needs one.

Laurie

Laurie

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Registered: 08-26-2005
Thu, 02-09-2006 - 12:10am
Chrystee,
((Hugs))
We all have those times when it just gets too much. Just know you are doing the best you can and that you'll get through it.
Teresa
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Registered: 03-27-2003
Thu, 02-09-2006 - 2:01pm

Chrystee: OMG, every mom on this board probably feels this way at some point. We're having a tough week this week with Colin as well....very similar to what you describe.

I wanted to share something Colin's OT told us. When something has pushed his sensory buttons enough it causes him to operate from the "primative" part of his brain and he is stritctly in "fight or flight" syndrome. Those are his only 2 options, and frankly, we see those options MANY times a day. He tends to fight 1st if applicable and then flight results in hiding in closed safe spaces (or running away to the bathroom which makes school really mad). The OT told us that when Colin is working from the primative side of his brain, the part that knows about social stories, regulating behavior, etc. is simply turned off. SO is his memory. It's strictly sensation and no words or recall can be put to it. Our OT stressed that the important thing to do is be as over-nurturing as possible because there simply is no way for him to recall the who-what-when-where or why of the situation, just his feelings.

As we have started to address things from a "feelings" standpoint, we are slowing starting to get to a point where Colin can actually tell us some of what was going on at the time. For us, this is a huge accomplishment because it means he's not going as far or as deep in his responses and more of our joyful and adorable little boy is remaining "present." Now, if only the progress wasn't so D@## slow! And, if only what was "wrong" with Colin was something the school could put their finger on, define and react predictably to, but alas, that's not our course with this one.

We'll be meeting Tuesday with the Principal and school psych. about "disturbing" behaviors.... :-( again.

(((hugs))) to us all!

Jackie

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Registered: 01-19-2005
Thu, 02-09-2006 - 2:22pm

Dear Chrystee,

You can see you are definitely not alone. I have also felt like you do too, I think I probably even posted something here about it. It's ok. This stuff is really hard and it is really scary. We all understand. I don't think I can offer any better words of comfort than what others have written, but I wanted you to know that I have had similar thoughts too.

My guy is still little, but we are already having the "I can't do it" issue and when he is unrepsonsive to questions (mostly about school) I get very frustrated. Interesting what Jackie wrote about "fight or flight" I wonder if that is why he can't ever tell me much about what he does at school?

Hang in there and don't beat yourself up either.

Sending hugs,

Katherine

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Fri, 02-10-2006 - 11:06am

Thanks guys.......that helped *alot*

Sam is definately in fight or flight mode often at recess. We deal with it often at home too and I know how to talk him down. It's usually sensory related(he's cold, he bumped his toe....etc.) But at school he has noone there to intervene and he goes from 0-60 so fast with nothin in between. Only I can tell when he's going to blow because his face goes all blank (can you say "no affect!") Then he strikes.....like a cobra. So it doesn't really look like he's upset because he seems in control, but his dad and I know better.

OT and sensory diets don't seem to help with that or with the inappropriated social behavior either. Even when he isn't revved up, he can't seem to remember that it's not ok to rub your body on other people or make farting noises constantly. I think those are just perseveration issues; he thinks it's funny and gets stuck and can't transition out of the silly behavior into work mode. We can tell him it's time to stop at home, but I think the teacher think he's avoiding work or just being willful.

I really like the idea of asking how he felt at the time instead of what happened. I had been thinking that if I could figure out what set him off, I could coach him on what do to if he gets into that situation again, but I think the feelings are the key since they can happen any time in any situation. Then we don't have to worry so much about the problem with generalization. Thanks! Excellent advice. Now I just need to work on helping him pick up on what his body feels like so he knows that he's starting to get annoyed before he gets too annoyed (his favorite excuse for belting someone, "he annoyed me!)

Thanks guys!

Chrystee

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