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Old 09-19-2006, 11:35 AM #1
Busymommie Busymommie is offline
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Default Rileys IEP-mixed feelings

Rileys IEP was a dream, it was so nice and simple, all of her needs are being met. Her teachers are awesome and so willing to do what is in her best interest.

I did find out that they are afraid to wake her up when nap is over, She has been taking 2 hour naps at school almost every day. Which I am sure is contributing to her all night parties. They felt like she needs the sleep, which she does. They are a little scared that waking her up will cause a seizure. But they did say that when she wakes up she picks up quicker and better grasps what they are trying to teach her.

My only concern is that she will be visiting a typical 1st grade class for things such as library, PE, recess, art/music. I asked her teacher what level she was working at. She said that it is hard to say where she is because her skills are so scattered. Most of her educational skills are still at pre-k level, while others are mid-kindergarden. One of her big problems is getting things from her head to the paper.

My worry is that with her skill still not being anywhere near 1st grade how well will she fit into a 1st grade classroom even if it is just for enrichments? Her teacher made a valid point, since it is mainly for social reasons, she knows many of the kids from last year and they all are in 1st grade. I know the argument can be made both ways and I am really unsure about it. She hasn't started going yet b/c she is napping when that class has the enrichments. After next month we will worry about it.

Her teacher also said that this is the last year she will be classified as Developmentally Delayed. Remember last year when I was so upset about it? I was crushed to start even thinking about it. But she did say that with her health issues she could be classified as OHI (other health impaired). I know it doesn't change who Riley is but it still stings.

On another note, There is a Wrights Law seminar coming here next month, actually in about 2 weeks. I am going and can't wait!

I think that is about it. I wish we could post pictures like before I have some great shots...
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Denae- Mom to
Riley (9)- Lennox Gastaut Syndrome & Charcot- Marie-Tooth
Brittany (11) a Prissy Princess
Sarah (14) Aspergers Syndrome
Victoria (16) Above Average Teenage sister
Jade (11) my niece, but now also my baby
Jacob (6) Possible Aspergers, but we have to sort through his anger/abandonment issues first
Jackson (4) The sweetest little guy you will ever meet.
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Old 09-19-2006, 01:05 PM #2
Dmom3005 Dmom3005 is offline
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Personally I think it will be to Riley's advantage to stay with the
group of kids that know her and she knows. THis way she can keep
making strides in the social way. If you were to ask them to hold her
back to advance with the kids in the kindergarten now, then she would
have to get to know a whole new group of kids. And start all over.

This way the group will already know her, they will be excited to see
her, and they will be ready to get things going so she can participate.

I'm also guessing you will see lots of advancement in her socially. And
at times we have to accept one growth at a time.

And the OHI is a good place for her to be put.

Donna
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Old 09-19-2006, 02:17 PM #3
RathyKay RathyKay is offline
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Quote:
Originally Posted by Busymommie View Post
Her teacher also said that this is the last year she will be classified as Developmentally Delayed. Remember last year when I was so upset about it? I was crushed to start even thinking about it. But she did say that with her health issues she could be classified as OHI (other health impaired). I know it doesn't change who Riley is but it still stings.
I think I may have a real-world support group. Samantha was in a combo 1st / 2nd grade class a few years back and made a few older friends. One of the friends has an older brother with autism. The mom and a few others get together occassionally while the kids are in school to talk about whatever anyone wants to talk about. On the downside, most of the kids are 6th / 7th graders (versus my very young 1st grader). And, most are autistic. The youngest kid (until Tom) is 8 years old. And he has epilepsy! (Okay, I *really* shouldn't be excited about that, but it's something we have in common.) Anyway, we got together about a week and a half ago and had a nice time. I think they meet anywhere from once a week to once a month, depending on how things are going.

The one mom keeps asking if Tom has a diagnosis. I've told her in the past that Tom has brain damage and all his "troubles" are a result of that. We've been offered PDD by our neuro, but haven't decided we need it. We've never been denied services. Tom is definitely delayed and no one is arguing (which is both good and bad/sad).

So... to the point of this rambling... she told me not to let them label Tom mentally retarded. She said they (the school) would "give up" on him with that label. She knows another mom who got her daughter an autistic label, even though it isn't a good fit, just to avoid MR.

I'm not sure how true this is, if it's just our school district? county? or state? But, I wanted to throw it out for you to think about. OIT doesn't sound like a bad way to go, given the choices.

And yes, I remember last year when you were upset about MR. Probably, because I felt like I was seeing the writing on the wall for Tom... and I don't want that either. Mr. Kay and I were actually discussing it a week or so ago. I tried looking up guidelines on MR and couldn't find anything along the lines of "at age 8, developmentally delayed becomes MR." I did find some IQ and MR stuff that was interesting, but I don't know what Tom's IQ is... and I'm not sure I want to know.

Anyway, I'm all in a tizzy. Tomorrow I take Tom to have a heck of a lot of blood drawn for the DAN! doctor. Then, we repeat it in two weeks... although, not as much blood that time. In addition, I've taken him of all multi-vitamins in anticipation of the bloodwork, and I think he does better with the supplementation. After all the blood is taken, then we're upping his supplements and we'll see what happens.

(((Hugs))) Because it doesn't hurt to have a hug. And if you learn anything more of interest on the MR, let me know.
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Mom to Samantha (10), Claire (9), and Tom (7). Tom is developmentally delayed with poor vision, lousy fine motor skills and epilepsy. His seizures are pretty well controlled through diet - dairy-free, gluten-free, rice-free, and coconut-free.
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Old 09-19-2006, 07:26 PM #4
langansmom langansmom is offline
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(((((hugs)))))

I also agree that the social time with the peers she knows is a great idea. I am sure those kids love that little redhead!!

I also know what you mean about the label. I hate labels- more so since Langan started her journey but I have always had a problem with it. OHI sounds like the way to go in my opinion, too. I am so glad the school is so wonderful!

(((hugs))) to you and to sweet Riley!
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Old 09-19-2006, 08:26 PM #5
lisa6wks lisa6wks is offline
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Busymommie,
Just wanted to let you know that two of my students (self contained class for children with multiple disabilities) are in kindergarten and first grade for inclusion. The kindergartner stays for about half of the kindergarten day and from the way you describe Riley, she is definitely more "typical" than my student who is in a wheelchair and is non verbal. Kindergarten has been great for him, he is more involved and happier than he was last year when he only attended circle with kindergarten. He has a one to one aide with him who facilitates his interaction with the other children and adapts the tasks so that he can participate as well. All in all it has been a great experience. Inclusion is much easier and more effective in my opinion in the earlier grades when the children have more time time for socialization. Also they are much more able to accept differences in others and to learn from their teachers and other adults in the classroom.

Hope this helps a little,
Lisa
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Old 09-20-2006, 06:32 AM #6
lucinda lucinda is offline
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I think it sounds good for Riley to join in with her old friends.

Glad you get good services and lots of support from the school. that's awesome.

hugs for your mommy heart.

lucinda
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Old 09-20-2006, 08:15 AM #7
mama z mama z is offline
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I understand your reservation, but I really think Riley will do awesome. Andrew is fully included this year and is doing great and he's made lots of friends. I'm not sure how next year will go when he starts Kindergarten but I know he'll be included for much of the day.

(((hugs)))

Laura
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Old 09-22-2006, 02:53 PM #8
Carly'sMaMa Carly'sMaMa is offline
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Just wanted to let you know that in our neck of the woods joining in for art, pe, music is typical. Carly loved going to these classes with her friends. Even in middle school, she is doing this. Right now, she is taking cooking. She's having a blast.
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