EEG is on and Cait is on homestudy

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Registered: 03-26-2003
EEG is on and Cait is on homestudy
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Tue, 07-01-2003 - 1:23am
What a day!

Dave had his EEG monitor put on today. We go back tomorrow to have it taken off and will get the results in a couple weeks. I am anxious. I wish I could figure him out. I have a feeling I will be trying for some time before I do. Having 2 siblings with AS coupled with his odd behaviors, then throw in those weird regressions. Alternately he is extraordinarily bright and can seem to figure anything out. Today he was quite the little man. They had the "new guy" put on his probes figuring a 3 y.o. would give him a hard time and they would have to help. The opposite. He didn't say peep the whole time. They even gave him a new teddy bear he has named "Jack" and is sleeping with. How cute!

On another note, have definitely pulled Cait out of school for the remainder of the year. It wasn't worth the stress it was causing her. She was having significant social problems with her peers. One thing we worked on this year was asking for help. She finally went to ask her teacher for help at which time the teacher told her to stop tattling and go sit down. Ridiculous. Teacher thought Cait's problems were minor ones she should be able to take care of herself. yeah, MAYBE IF SHE WASN'T AUTISTIC! That was the final straw. I was willing to work with this woman as long as Cait was doing well. She started having trouble a couple weeks back. I called the specialist, the teacher, etc. Nothing worthwhile was done. Last week Cait started having a lot of stress even about going to school and getting ready. That along with the teachers reaction to her difficulties and that was enough.

On a good note, Mike is doing better with his bug fears, OCD traits, and rigidity. At least something to look forward to!

Renee

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Registered: 03-26-2003
Tue, 07-01-2003 - 3:54am
Well, gee, I don't know what to say first. I first I should say it's great that Dave is getting his EEG done. That should help with giving some answers and pointing you in the right direction with him. It's really funny, I wish AS had been more widely known in the US when Ayla was that age. She had a 24 hour EEG to try and help find out why she was having three different types of siezures. They never really figured it out at the time, but years later a dr looked at the results and said 'autism'. It would have helped to have heard that word a lot sooner in my parenting career since she was my first Aspie baby. I could have at least had a little more warning that I might have lower functioning kids. Not that I would have decided not to have them, but the forcast on what to become a behavioral specialist in would have been helpful. Right now I have my cert for ADHD and it turned autism was the bigger deal in my family. Sigh. (Yes, I'm upgrading my cert to include the Spectrum)

And second, I'm so sorry you and Cait had so many problems with the school this year. It just floors me when I hear stories like yours because Cait's problems are so A-typical, and if that teacher had just bothered to do the slightest bit of research, even if it was just to read Attwood's book, it would have made all the difference in how she saw Cait. That kind of stuff just irks me. But the Autism specialist not stepping in is what I can't get over. There's a school about 20 miles from me that does wonderful work with kids on the spectrum and sometimes I wish they could clone their specialist and teachers for other schools. If we ever figure out how to do that I'll let you know, then we can 'upgrade' the school near you. LOL.

For Cait's home studies are you using the ISP or K12, or are you going with a private oversight? What kind of flexability are they going to give you in her curricula? I've usually found the ISPs and K12 to be quite accomadating, but last week we had a family in our co-op going ballistic over the total inflexability their ISP was showing. I've never seen that before. Normally if the parent points out that the child is ahead or behind in a certain area the ES makes the appropriate adjustments. I spent two days helping them do a mid term transfer to a private school oversight. It was a nightmare. I hope Cait's ES is the normal kind that actually listens to the parents AND the student. It would break my heart to have her have problems with her ES after all the trouble she had with her ps teacher. At least it will be you doing the actual teaching and daily pacing. That should help her out immensely!

I hope things look up for Cait soon. And let us know what comes of Dave's EEG.

Peace,

Candes

Peace,
Candes  
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Registered: 03-26-2003
Tue, 07-01-2003 - 11:13am
Thanks for the info Candes.

For the school stuff we are doing independent home study. That is the school she was attending and her current teacher will be putting together a packet of stuff for us to complete and we turn it back into the school. Seemed the best route since she only had a month left rather than transfer her 2 times in a month or so. Besides, we did this last time and honestly teh academic work for the last month really isn't to bad to do with her. I typically devide it up over the time we have and end up working on it only a hour or 2 a day. That gives us the rest to work on other things and have some summer fun (ie swimming, parks, field trips)

As for Dave's EEG, I hope it gives us some answers. Do you know anything about neurological exams? I know Dave had the wrong reaction with one of his feet on the babinski's. I asked the neuro and she just mentioned that it could indicate something. A friend (nurse) mentioned yesterday that it is usually a sign of brain damage. HELLO! I have always found alot of that part of the neuro exam confusing as heck with little resources to find out what it all means. (ya know, finger to nose test, babinski's, roginski's, walking on thier heels, all that)

I wish I knew more about EEG's when Cait was younger. She had a one hour one sleep deprived EEG that showed "nothing significant". IE no actual seizures. Now knowing what her 24 hour EEG showed I wonder about what it would have been like if we had the info we have now then?

Renee

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Registered: 03-26-2003
Tue, 07-01-2003 - 5:14pm
Oh Sweety, I hate to say it, but you probably know more about the Nuero tests than I do. They confuse the ever living heck out of me.

Jade had some problems on the extremities tests that indicated brain damage too but when they did the MRI all they found was an over development of the frontal lobes and slight underdev of the central (brainstem). DH says "She's not brain damaged, she's just a mutant". LOL and his Aspieness means that lovingly. Our current nuero says those findings mean that her brain is going a million miles an hour, fueled by super-unleaded creativity, but the signals aren't all getting out to the rest of her body. Makes sense to me, Jade can explain the conditions neccecary to form a life-baring planet but she only learned to tie her shoes 6 months ago (and the knot is pretty halfbaked at that). She has problems understanding things that require sensory input from the rest of the world, like how to do a complete job washing her hair, she just can't seem to figure out how you tell when you've gotten it all covered in soap or if the soap is all rinsed out. So at almost 9yo her mama still helps her wash her hair, double checks when she brushes it, monitors the creation of ponytails and buns, etc. At 3yo Eva is already brushing her own hair just fine and makes excellent pontytails.

I will ask our nuero if there is a site or something where we can go look at the what's and hows of the nuero testing. Or maybe he can give me some literature I can upload to a support page. Speaking of support pages, I've been trying to get one oraganized, but my DH (the computer guru in our family) is supposed to be helping and his Aspie inertia is getting the better of him. Plus, things have been really busy with work because of the end of the ps school year so I haven't had much time to think of anything else. things should settle down with the foundation in another week or so, then I'll have more time to get the page started.

On Cait, that makes sense to finish out the school year in that fashion. No sense in transfering this close to the end. That would create a lot more confusion than it was solving But something that occurred to me is, isn't she going to be in the same school next year? I know she won't have the same teacher (Lord forbid), but that specialist didn't sound too helpful either, or the rest of the staff. Given the problems this year have you and your DH put any thought into what you are going to do next school year? If you guys are thinking about home schooling I still have a ton of contacts for co-ops and associations down there. I can give you some phone numbers and such if you want them. Unfortunately, my favorit youth group down there had to close up shop, but there are others there that are still leagues above the rest of the nation's.

Okay, sorry for all the nosey questions. LOL, I'll but out now.

Peace,

Candes

Peace,
Candes  
Avatar for maresgood
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Registered: 03-27-2003
Tue, 07-01-2003 - 11:58pm
Hi Renee, sorry to hear that you had to pull Cait out of school. You had mentioned that next yr. you might be putting Cait in the same school as Mike because they would be on the same schedule instead of yr. round track. Are you still considering that or are you done with public school? I don't blame you @ all. The kids being mean to her & the teachers not helping matters is just plain frustrating! I am actually going to look into special ed school for Sarah. I don't know if she'll be able to cut it in public middle school. She has had her difficulties in elementary. She did make 1 or 2 friends this yr. though. But she marches to the tune of a different drummer & I don't think she'll be able to adjust well. I wish you well @ homestudy I know you have the patience to do it! As far as your other son with the EEG goes, I'll be interested to see what they find. I don't remember alot about neuro from nursing school (25yrs. ago) My physiology book states testing of the reflexes is an important part of a neuro. physical exam. If they are normal it indicates that the fibers (efferent & afferent)of the central nervous system and the muscles themselves are working properly. If not it can signal injury to the central nervous system and certain lobes of the brain in some way. The nervous system is very complicated!! Anyway keep us posted. Sarah starts summer school after the 4th for all of July. :( Not much fun for us!-MaryAnn
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Registered: 03-26-2003
Wed, 07-02-2003 - 12:54am
Wow, Gotta tell you. Cait IS 9 and still has those same fine motor problems. I still brush her hair everyday. She does it first, but I always have to do it too. She just can't make her arms do that for some reason. Same with the hairwashing. I am getting bad though. I figure after a few nights she gets to all of it eventually. I check every so often to be sure and wash her hair if it seems to need an extra hand. Got her into using conditioner and that helps. HEHE. She still uses kid shampoo cause she still gets it in her eyes. Ditto on the shoe thing too. Had the concept in 2nd grade, but just this year got good enough at it to do it herself most times. I still ahve to help on particularly sensory days. As for neuro problems, Cait had residual primitive reflexes and tremors at 3 ys. Now has some mild soft neuro signs as I was just reading the report again tonight or at least trying.

As for school next year, she WILL NOT be going to the same school. She is going to switch to our neighborhood school which I hear has a very supportive special ed. staff. (She currently attends a magnet school which seemed like a good idea at the time). However, she is also registered in a charter home school and I am holding off on making up my mind until I meet with them. Cait's IEP would be covered by Oceanside SD if she went there and I have not heard the best things about them. (Sorry). I will most likely give the neighborhood school a month and if I am not satisfied I will pull her to homeschool her either at teh charter school or another similar program. If you have good contacts I would love them.

The only reason I am giving the local school a chance is the district rep has been working hard with me to come up with a real good IEP for this year. Plus she has suggested a whole new set of triennial testing with an early triennial at the beginning of next year. I think we have a really good plan in the works and want to give it a try and get the new tests done. We are finishing it up on Thursday and I want to make some important additions. We will see how that goes.

Thanks for teh info

Renee

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Wed, 07-02-2003 - 12:59am
Thanks maryann

We will be switching her to our neighborhood school, but she is still on the waiting list at Mike's school. They will be on the same schedule though which will be nice. I think it will be another year or so until she gets into VAPA.

Which school are you looking into for Sara. I have heard excelsior is quite good with the AS kids. I know an OT that does some work there.

Renee

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