Guest guest Posted February 25, 1999 Report Share Posted February 25, 1999 Anne- > My motto is I don't care what you call it - just do > whatever you need to do to help my child reach his potential. I agree completely. When was young and having some problems (he really was a gifted LD student, but there was no classification for that) I said I didn't care if they classified him as a monkey, as long as he got the help he needed. It ended up that I was that help, but he ended up okay. > Having said that I do have a question on the LD label. The school has > invited the LD chair person to attend Zachary's IEP. As far as I know he > is not diagnosed LD or is CAPD officially considered an LD? Generally > speaking do kids with CAPD end up having learning issues or is this not > necessarily a given? Any student I know of that CAPD is an issue has ended up needing special education services for learning. This could be in the form of an amplification system or a resource room. There are probably kids who are CAPD who don't have learning problems, but we don't know about them. Why would you test for CAPD if the child was not having some difficulties with social or academic areas. > Zach is classified as speech disorder, autism , ortho handicap and other > health impaired on the IEP- I really can't see the need to check another > box off. The problem is that most of the autistic kids in our school are > serviced by the CD dept. or the ED dept. The school says that Zach clearly > does not fit into either of these. Up until this time he has been served > by early childhood staff but as he will start first grade next year I > realize someone has to be in charge of his IEP and that is why I think the > LD chair person is being called in. Not sure what the CD and ED stand for, but you are probably right that the LD chairperson may be coming to take over the IEP job (fun, fun, fun). I do IEPs for students with all disability classifications unless they are speech only. The speech therapist does these. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 1999 Report Share Posted February 26, 1999 I hear you completely on this one Anne! ;o) Lori *********** RE: Anne and Lou Juhlmann wrote: > <snip>.you can look at it that the autism causes the processing > issues or the processing issues are the problem which make him appear to > have autism and cause social reticence, etc. etc. After awhile I get dizzy > thinking on it. My motto is I don't care what you call it - just do > whatever you need to do to help my child reach his potential. > <snip> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 I know I am a little late on this subject, but I have a couple of questions. What if our child has a hard time with noise and with not being able to retrieve them. Do they call it something else? Also someone mentioned autism and mito are highly related. WE will be taking my 7 year old daughter on her third medical trip this summer from Alaska. We have done Childrens in Seatlle, and Children's in Portland. SHe has 7-10 different thihngs but nothing definitive. Everything from ADHD, autistic spectrum, ODD, possible tourette's , bipolar, seizures, etc. I think the mito issue might be the bigger picture for her. It seems like we get one area to calm down and another one spikes up. I really appreciate everone writing as it gives us new ideas. We are supposed to be going to Stanford this time. I don't really care where we go, I just wish it would be the right place to tell us for sure what is wrong. We may never have that. The hardest thing is getting th4e school to understand. We have even broght the dr and they still don't get it. Oh well nothing different than what you all do. Have a great evening. Debra angel in ALaska Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 In a message dated 99-03-08 23:07:43 EST, you write: << We are supposed to be going to Stanford this time. I don't really care where we >> Dear Debra: If you come to Stanford let me know and I'll come and meet you there. I live about 45 min. away and would love to meet you! Lynnie Wife, Mother, Advocate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 In a message dated 99-03-09 15:00:01 EST, you write: << thank you thank you. I had help from my crochet partners group when I went to Portland last summer and it made all the difference. I will let you know as we are trying to clear it through Medicaid now etc. I am hoping it will be in July. Debra angel in Alaska >> Good! I'll be looking forward to hearing from you. We are do to go on vacation in July, but I don't know the date as yet. Hope we can coordinate this Lynnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 thank you thank you. I had help from my crochet partners group when I went to Portland last summer and it made all the difference. I will let you know as we are trying to clear it through Medicaid now etc. I am hoping it will be in July. Debra angel in Alaska GOLYNIE@... wrote: > From: GOLYNIE@... > > In a message dated 99-03-08 23:07:43 EST, you write: > > << We are supposed to be going to Stanford this time. I don't really care > where we >> > > Dear Debra: > > If you come to Stanford let me know and I'll come and meet you there. I live > about 45 min. away and would love to meet you! > > Lynnie > Wife, Mother, Advocate > > ------------------------------------------------------------------------ > We have a new web site! > http://www.onelist.com > Onelist: The leading provider of free email community services > ------------------------------------------------------------------------ > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 1999 Report Share Posted March 11, 1999 Debra, HI. I have a almost 9 year old son with autism. This is where this subjuct came up. To fill you in he is diagnosed with autism/PDD spectrum disorder since he was 2. Looking back and seeing rare tests results he has lactate acidosis and poosible pyruvate dehydronasre mitochondria disease. As a posslibe cause of his autism. This is theory. We's loved to prove it but can't get insurance comapnies or mediacal assistance or muscular dystrophy or etc. to pay for the darn test to prove this theory. It's holding us back from looking at other causes. But I want to tell you this. I have joined this list last summer andfrom talking to these wonderful people I, in my gut think this is what is really wrong with my son, Bart. In autism spectrum disorder it affects all kids differently. And as I seek info from people on this list so does mito. Programs and treatments have to be individualized!!!! I keep wondering how people get a mito diaganosis before a developental one. You are from Alaska! How do you stay warm? Cold here in PA. I am out of state next week to help my sister unpack and move into new home/town(Atlanta). Problem with noise in autism terms means hypersensitivity to noise and auditory processing disorder. For my Bart, he has become better with Occupational techniques but also maybe he is better because as Temple Grandin explains that they shut off the hearing part. They can only use one sensory input at a time. I think he has learned to shut off his hearing when it is too much for him. I have had to learn to get through visually. He can't hear if he has to listen too. Kathy ---------- > > To: Mitoonelist > Subject: Re: CAPD/LD/labels > Date: Monday, March 08, 1999 11:02 PM > > > > I know I am a little late on this subject, but I have a couple of questions. What if our child has a hard > time with noise and with not being able to retrieve them. Do they call it something else? Also someone > mentioned autism and mito are highly related. WE will be taking my 7 year old daughter on her third > medical trip this summer from Alaska. We have done Childrens in Seatlle, and Children's in Portland. SHe > has 7-10 different thihngs but nothing definitive. Everything from ADHD, autistic spectrum, ODD, possible > tourette's , bipolar, seizures, etc. I think the mito issue might be the bigger picture for her. It > seems like we get one area to calm down and another one spikes up. I really appreciate everone writing as > it gives us new ideas. We are supposed to be going to Stanford this time. I don't really care where we > go, I just wish it would be the right place to tell us for sure what is wrong. We may never have that. > The hardest thing is getting th4e school to understand. We have even broght the dr and they still don't > get it. Oh well nothing different than what you all do. > Have a great evening. > Debra angel in ALaska > > > > ------------------------------------------------------------------------ > Ta Da! Come see our new web site! > http://www.onelist.com > Onelist: A free email community service > ------------------------------------------------------------------------ > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 1999 Report Share Posted March 11, 1999 Debra, HI. I have a almost 9 year old son with autism. This is where this subjuct came up. To fill you in he is diagnosed with autism/PDD spectrum disorder since he was 2. Looking back and seeing rare tests results he has lactate acidosis and poosible pyruvate dehydronasre mitochondria disease. As a posslibe cause of his autism. This is theory. We's loved to prove it but can't get insurance comapnies or mediacal assistance or muscular dystrophy or etc. to pay for the darn test to prove this theory. It's holding us back from looking at other causes. But I want to tell you this. I have joined this list last summer andfrom talking to these wonderful people I, in my gut think this is what is really wrong with my son, Bart. In autism spectrum disorder it affects all kids differently. And as I seek info from people on this list so does mito. Programs and treatments have to be individualized!!!! I keep wondering how people get a mito diaganosis before a developental one. You are from Alaska! How do you stay warm? Cold here in PA. I am out of state next week to help my sister unpack and move into new home/town(Atlanta). Problem with noise in autism terms means hypersensitivity to noise and auditory processing disorder. For my Bart, he has become better with Occupational techniques but also maybe he is better because as Temple Grandin explains that they shut off the hearing part. They can only use one sensory input at a time. I think he has learned to shut off his hearing when it is too much for him. I have had to learn to get through visually. He can't hear if he has to listen too. Kathy ---------- > > To: Mitoonelist > Subject: Re: CAPD/LD/labels > Date: Monday, March 08, 1999 11:02 PM > > > > I know I am a little late on this subject, but I have a couple of questions. What if our child has a hard > time with noise and with not being able to retrieve them. Do they call it something else? Also someone > mentioned autism and mito are highly related. WE will be taking my 7 year old daughter on her third > medical trip this summer from Alaska. We have done Childrens in Seatlle, and Children's in Portland. SHe > has 7-10 different thihngs but nothing definitive. Everything from ADHD, autistic spectrum, ODD, possible > tourette's , bipolar, seizures, etc. I think the mito issue might be the bigger picture for her. It > seems like we get one area to calm down and another one spikes up. I really appreciate everone writing as > it gives us new ideas. We are supposed to be going to Stanford this time. I don't really care where we > go, I just wish it would be the right place to tell us for sure what is wrong. We may never have that. > The hardest thing is getting th4e school to understand. We have even broght the dr and they still don't > get it. Oh well nothing different than what you all do. > Have a great evening. > Debra angel in ALaska > > > > ------------------------------------------------------------------------ > Ta Da! Come see our new web site! > http://www.onelist.com > Onelist: A free email community service > ------------------------------------------------------------------------ > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.