Lower functioning than we thought?

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Registered: 03-26-2003
Lower functioning than we thought?
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Wed, 02-22-2006 - 5:34pm

I was talking to my DH and my therapist (who is also Mike's therapist and autism specialist) about this today.

Mike is just getting further and further into his own head and harder and harder to communicate with. We have been working on the same 3 rules for the last 7 years and he still doesn't get it. He doesn't even realize often when he is doing one of those behaviors. Then when you try to do a social story or talk about the problem he can only follow the conversation for minimal turns and never comprehends it. It is very frustrating. Anyway, some situations have come up recently with behavior that DH and I are thinking we are going to have to go back to the token system we used when he was 3-4 years old. It is more a token system for more autistic type kids with visuals of his rules.

I mentioned to DH that I thought perhaps Mike was lower functioning than he appeared and we thought. He agreed probably so. I asked the therapist too. She agreed but added that he is on the verge of puberty and it may be puberty that is causing him to have more and more difficulties. That hopefully his brain will come back at 16 or so, lol. (FUN!).

Anyway, I don't have any questions or know really why I was typing this here. It is just on my mind. Socially/emotionally the therapist put him at about 4-5 meaning we only have about 30 years at this rate for him to grow up. Sorry. I will stop being snarky now. I am just tired and i have to go get them from school and go to hippotherapy.

Renee

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iVillage Member
Registered: 06-25-2003
Wed, 02-22-2006 - 5:54pm

((((((((((((((((((((((Renee))))))))))))))))))))),

I don't have much advice. He may well surprise you in a few years, but of course you don't want to do nothing until then.

It is difficult to face issues like this and know what is the right or the best thing to do. Do you think it time to look at other placement options for him?

Would fighting for more clinical OT help, do you think?

I am racking my brains here, trying to think of answers for you, but I am coming up empty(so far).

So here are more (((((((((((((hugs)))))))))))).

-Paula

-Paula

visit my blog at www.onesickmother.com
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Registered: 10-03-2004
Wed, 02-22-2006 - 8:31pm

Dear Renee,

And more ((((((HUGS))))). I am curious. Do you still have him in some mainstream classes or is he back in day class most of the time? I just wonder if that mainstreaming is not causing too much anxiety and overflooding his system with discomfort. I sure know that by week 5 and a half of Day Camp for Malcolm, we were starting to lose him --- and I now know we need to be so very careful, even more than we were, with future unsupported situations...

Yes, of course, puberty could be part of it but Mike is still young-ish yet. I also am nervous about puberty and what it can bring in behaviors, etc. But if you still have him mainstreamed, I think I would change that to safety of fulltime Day Class first and see if you get your boy back...? Unless there really is something he is getting out of being mainstreamed which is crucial for him to get at this point. Personally, if it's the slower academics, I might consider getting him a tutor or seeing if there couldn't be a small inclusion study group set up for him if mainstream class is causing too much disruption.

Just my thoughts, here, forgive if too personal. And of course, he may already be back in Day Class, maybe still adjusting back even? I can't remember where you all are with this situation right at the moment.

Sara
ilovemalcolm

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Registered: 08-26-2005
Wed, 02-22-2006 - 9:13pm
Renee,
I'm sorry you are still having such a rough time. It's so frustrating when you watch your child come so far only to regress back in some ways to where you began.Somedays I just want to pull my hair out because there is just so much to remember to do with the kids to keep them together and on task.They both have totally different sensory needs I forget sometimes who's supposed to be doing what.I have only two kids with problems and I find the stress of that almost too much at times so I can't imagine how you are doing it all and holding down a job without losing your mind!!! I think the token system could be very useful for him to stay organized and focused on the behaviors you are trying to target.It's very possible he is approaching puberty because kids start puberty now so much earlier than we did.Try not to worry!
((HUGS))
Teresa
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Registered: 03-26-2003
Wed, 02-22-2006 - 11:54pm

Thanks for your thoughts Sarah.

His mainstreaming is at the same level as it has been for the entire school year (I think we started 2nd week or so?) It did increase a bit at the beginning but he has been at this level since at least mid september, which for us is 1month into school.

We had his annual IEP in December and initially we were going to try to increase his mainstreaming mid year but it was decided then that it wasn't a good idea so he remains at the same. It is only about 1 hour per day. He does go at all because of academics and for the most part has been doing very well in mainstream per report. The academics of his class are drastically below grade level and his level. That is another huge concern. Mike is beginning to fall behind grade level some. It is hard to tell if it is because of placement or his ability. But they really provide him alot of 1:1 and extended type activities so I do think it is his comprehension that is doing it which goes back to the initial fact that he likely is lower in ability than he appears.

As for the tutoring, in fact they have just started that very thing for him. He is pulled out with 2 other typical children to work on writing for the big state writing eval in March. He is actually doing really well with that and has Cait's old 4th grade teacher. She was awesome. She has retired but is coming back for this tutoring and she is great with Mike. I just wrote to his teacher today about continuing the tutoring in other areas if they continue to offer it through the school.

Thanks for the thoughts. I think with regards to that we are on the same page.

Renee

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iVillage Member
Registered: 03-26-2003
Thu, 02-23-2006 - 12:08am

Thanks Paula for the hugs!

At least it isn't like a diagnosis all over again eh?

I don't want to change placements. Change is too hard for him and I really think he is in the best possible placement now. It is our neighborhood school and in a class where he really has made tremendous strides. His teacher gets him and will move mountains to meet her kids needs. He gets alot of 1:1 and still, compared to last year, is doing well.

It is just this weird thing were he is consistently appearing more autistic even to the point of appearing to understand less or be withdrawn more. It is like talking to a wall often.

Here is an example of how out of touch he is. I took him shopping 1:1 tonight to the store to pick up a rotteserie chicken, salad and bread for dinner. He helped me pick it out. Over all he was a really sweet kid and good helper in the store. Though he had to be brought back a few times, etc. He typically is great fun 1:1. We got out of the store and were loading the car and Mike says "Mom, so what did we get for dinner?". To which I answered "Mike you helped me pick it out remember and we talked about it a few times. What's for dinner?" his answer was a line in a funny voice "I have nooo idea!" So I openned up the bag and showed him and told him again, and I get "Oh, chicken. That will be good" like it was new. HELLO!!!!! Where you with me in the STORE!!!!!

I mean we have dropped off his sister at his grandparents for a sleep over. He went into the house with us and stayed for a few minutes. We got back into the car without said sister and went home. An HOUR later he comes in and says "Mom, where's emily?" "She's on a sleepover at grandma's remember?" "WHAT! When did she do that?" It is stuff like that all day long. Even routines. You have to get his attention and explain something is about to happen concretely and have him respond or he has ABSOLUTELY no clue despite whatever else is going on in the house. He is so inside his head that he doesn't connect with the world around him and it is more and more common.

We live 1/2 mile from the school. You have to make 2 turns to get to the school. He has NOOO idea how to get there but his 6yo brother can tell you all the turns to make to get to his granparents house 2 towns away.

The other problem is communication. I feel like I am talking to a wall. He just doesn't get it and misses so much information. He has this great vocabulary but just doesn't get anything that isn't concrete. There are tons of examples of that too. It is just so darn frustrating to be working on the same skills forever.

Enough venting. Thanks, lol.

Renee

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iVillage Member
Registered: 03-26-2003
Thu, 02-23-2006 - 12:11am

Thanks,

It would be very early puberty but Cait went through puberty early as well. They are both tall kids but not overweight at all (which is typical for early puberty) but the genetics are there for earlier puberty.

It may be the very very start of it. Or I have heard that some of the hormonal changes and such can start way before the actual symptoms start. Who knows.

Honest, I don't really think it is puberty. I think the therapist was trying to make me feel better perhaps or try to figure out why. She herself said it would be very early but Cait was early so it is possible. (Cait started her period at 10)

Renee

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iVillage Member
Registered: 04-11-2003
Thu, 02-23-2006 - 7:23am

Sending big hugs ((((Renee)))

Samantha

Samantha
iVillage Member
Registered: 02-24-2004
Thu, 02-23-2006 - 12:57pm

Renee,

I also just wanted to give some hugs too! I have those spacey moments with Nathan alot. He is always asking me questions as if he wasn't even in the room! He likes to disconnect alot, especially when he's at home. School is so exhausting for him. I also have to ask him questions over and over. It seems like I am forever spending my time trying to "snap" him out of it!

michelle

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iVillage Member
Registered: 03-26-2003
Thu, 02-23-2006 - 1:43pm

(((HUGS)))), I know it's so hard to come to realizations like this. I have no advice except to say, I know how hard it is, you're a fighter and he's got a great mom!

Betsy

iVillage Member
Registered: 03-26-2003
Thu, 02-23-2006 - 4:10pm

I wish I had something to offer other than a cyberhug....

((HUGS))
Christie

(we are going to start hippotherapy soon - I'm sure my son will love it (he is like Cait - he loves animals)

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