Sorry if I was crabby

iVillage Member
Registered: 03-26-2003
Sorry if I was crabby
15
Sat, 01-20-2007 - 12:57am

I was rather crabby yesterday when I did stop by chat and have been not able to post for a couple days or offer support when I normally would have. Awfully sorry. Had some friends over tonight and starting to feel a bit better.

I am just stressed terribly now. Mostly I think due to the indicision of what to do with Mike after this year.

I admit it. I am scared. I am scared we can't make more progress and he will be that kid really hurting another in school. That he will never learn to control his impulses. He will never be able to lead a normal life. That it just goes down hill from here.

Some things have happened to kind of push these dormant feelings into the for front.

1) Got the Diagnostic center report for Mike the other day. Really no new answers in that despite the level of hope we had put into it. They made no recomendation for middle school. This bugged me the most. And then on the diagnostic issue, they explained my question, why I had that question, and what was typical of kids on the autism spectrum but they never answered my question other than to say they have ruled out mood disorders. I wanted to know a) where he fell on teh autism spectrum (and if he was truly regressing) and b) if he had comorbid diagnosis such as OCD, Tic disorder, etc. They also failed to write in the report that they ruled out ADHD which they had told me. I want that in there so the med question is PUT TO REST.

2) we have only had 2 offers of school visitations for possible placements for next year and haven't seen either yet. One is non-public school, the other is Cait's program which doesn't have openings. We still have no FRIGGEN clue where he is going and it is stressing me out.

3) Putting Mike in non-public makes me feel like I am giving up any hope for him having a normal childhood and teen years. No homecoming dance, no games to attend, no dances, no proms. Not that he would want to. I want him to have the opportunities. But it seems that non-public is our only option.

4) Had to take him off meds because they weren't working. He still agresses probably at least 1 time daily significantly (often more) and I don't know what the heck is going to happen to him if he doesn't learn to control.

5) pulling him out of basketball (yet another failure)

6) Some school troubles he is having.

7) decided to cancel the neuro appointment because I just don't see the use. At most they will do an EEG and tell me what I already know. That it is abnormal. Then they will want to put him on meds that I have already tried. I don't want to go there.

and finally 8) The sudden realization that I can't control this. I can't fix it. We have tried every path and every thing that I know. All I can do is wait for puberty to pass and hope his brain develops on it's own to a place that he can be independent. He is not fixable or curable.

DH asked finally the other day about trying other things when we decided not to go back to the neuro. Everything he asked had been tried multiple times. It was that realization that there was NOTHING we can do outside of what we are doing at home. NO one understands him well enough. We are more creative at home and it is slow progress.

Lately we have been hanging out with family and friends. All with kids who had started out way behind him and have gone on to develop past what he is able to do.

I am just really really frustrated and spent.

The only thing left is to just love him, pray and hope for the best. That realization sometimes is hard to accept. Particularly when I am a person who is constantly trying to problem solve and fix things. I have to accept that this is something I can't fix.

Renee

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iVillage Member
Registered: 10-03-2004
Sat, 01-20-2007 - 9:40am

(((((((RENEE)))))))

I am so sorry you are going through this big, big hard time emotionally! I mostly feel for you because you have been being hit on so many, many fronts all at once for so long!!! You must feel like you just have no reserves left for anything more, I bet. More (((((HUGS)))))

Of course I would think this, but I really don't feel that success in public school equates success in life. Here we have a very different situation, but I also feel that very successful people are homeschooled, and all sorts of other options besides public school. There are as many varieties of how success happens as there are different people in the world... And as for dances, games, etc., well, I never went to those because I absolutely HATED them, crowded, lots of opportunity for kids to show other kids disdain and clique-ish-ness. Again, not a requirement at all for success in life.

I would so love to meet and observe Mike, because he sounds like such a amazing mixed bag, funny and smart and warm, yet so very oversensitive and with such trouble in picking up social cues. That would make sense that the aggression comes from his lack of understanding of what is going on around him, and being SO bright, he gets very frustrated. He does need to have teachers who really understand him, no matter where he goes. And your description of Cait's program has not been the most encouraging, really, as Cait is much easier through the day than Mike, in a behavioral sort of way... And yet they don't seem to really "get" her, either.

Well, you know, don't get me started about our educational system for our kids, 'cause I am pretty depressed these days myself about that. Here in NYC, noone even has a clue about next year's placement this early in school year... And we start application process at beginning of year, even in summer!

You may really find that his aggression stops if he goes to the non-public school, BTW, because he simply may not have the level of over-stimulation and perplexing social situations he does currently. Malcolm's aggression only came out in bad school setting and we were very surprised by it. Now being homeschooled (with lots of playdates, social skills groups, etc.,) we never see that at all. And the basketball was going fairly well until you had a conflict, right? You being there is still pretty important for him, that's true for us, too.

Wish I could say more to help. You can get that report rewritten to include the ADHD, right? Will you have more discussion with the diagnosticians, can you bring up these concerns again? Of course, the workload is always so endless, endless... OMG

I get how down you are from your itemization... That's a lot of items. I am concerned for you and wish we lived closer.. I'd come over and watch your gang so you could get more time off.... Take you out dancing... Shall I rev that Lear jet and send to CA to get you for a night on the town here in NYC, with a few Cabana boy escorts? Don't pack a thing, we'll go for manicures, hair, makeup and outfits at House of Cisco!

More (((((HUGS))))))

Sara

iVillage Member
Registered: 04-11-2003
Sat, 01-20-2007 - 10:02am

((((Renee))))

All I can offer is hugs and support. I do understand your feelings. I have many of the same feelings about Hannah. Its not the same situation, I know, but those feelings of frustration, lost opprotunities, not being able to fix it, nothing left to try...I'm right there with you.

Samantha

Samantha
iVillage Member
Registered: 02-20-2001
Sat, 01-20-2007 - 11:01am
(((((((((((Renee)))))))) I am getting teary reading your post.

 


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iVillage Member
Registered: 12-22-2003
Sat, 01-20-2007 - 11:46am

Renee~

I wish I could properly express to you how sorry I am that you're going through this. But since I can't say anything that will directly help your situation, I'd like to just say this~

In my world, you're one of the "ultimate autism moms" ~ you've been there, done that...over and over again...and by sharing your wisdom you help bring hope, comfort and peace to the rest of us. I have no doubt that somehow, someway, you'll be able to determine what's best for Mike, and then you'll do whatever it takes to make it happen. That's what a hero does, and (like it or not) you're a hero. Not only to Mike, but to so many others. Yeah, that's a lot of pressure for one mom...but you have a gift, and somehow, someway, you'll make it work.

(((((Renee)))))

Amy

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iVillage Member
Registered: 03-20-2003
Sat, 01-20-2007 - 9:11pm

I was saying in chat last night that my brain was stuck in "this is going to be my life for the rest of my life" mode, and I needed to get back to "one day at a time" mode.

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iVillage Member
Registered: 04-07-2003
Sat, 01-20-2007 - 11:41pm

I'm so sorry this has been a bad time for you. Although it doesn't change your feelings of helplessness, Mike is fortunate to have the parents he has. At least he'll have had the best possible chance to succeed. I hope there's a silver lining for you soon!

iVillage Member
Registered: 11-28-2006
Sun, 01-21-2007 - 1:38am

{{{Renee}}} I have typed and deleted about 5 posts so far. Nothing I say could sound better than the things I have read in this thread.

All I can say, is its so hard when you can't control something that means so much to you. Its hard, its depressing, and it can drive you crazy.

Ya gotta find a way to let it go and find some kinda peace.

Another hug going your way {{{Renee}}}

Avatar for maresgood
iVillage Member
Registered: 03-27-2003
Sun, 01-21-2007 - 1:00pm
Renee, I was just checking the posts this AM & read yours & felt like this is something I can relate to & I also have concerns & worry about for Sarah. It's easy to get depressed & frustrated. Do not compare your kids to anyone else's. I used to do this & it made me angry. There are kids better off & those far far worse than Mike. This too shall pass... You are a good Mom & know way more about AS than the educators. I would go w/ the public school setting. Put Mike on a waiting list for Cait's program. Because he's a sibling, your chances of getting in are better. You know the drill, keep bugging them & calling them if you have to! She sounds like she is in a good program. Is it a public middle school in Vista? I feel like public schools have more resources for our kids. Hang in there kid. We all are hanging on by a thread @ one time or another. Take Care~ Mary Ann
iVillage Member
Registered: 09-13-2006
Sun, 01-21-2007 - 8:39pm

I would really like to be able to say more; to say something that would be helpful in some way.

iVillage Member
Registered: 06-03-2006
Sun, 01-21-2007 - 9:30pm

Amen to what all the others wrote.
Renee,i hope somethings fall into place for you very soon.

take care of yourself. you take excellent care of your family and the members of this board.

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