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Post by trishasmom on Jan 9, 2007 19:16:58 GMT -5
And that's the short of it.. it's JUST to qualify your child for services and not to truly "label" him. Your IEP should still have listed his medical DX of Down Syndrome and any other medical DX's. Russell's IEP lists "MR" and "VISUALLY IMPAIRED" for his school dx's and his IEP also states that Russell has DS, Autism and is Visually Impaired.
I pulled out our most current IEP and it doesn't even have DS or MR listed, It lists, Speech Language Impairment, Hearing Impairment, Autism Vision Impariment. It mentions nothing about her DS or being MR. Now on the other it mentioned the above but included DS but not MR. But as I told them the DS is not what they have to treat it's all the other things going on that we need to work with.
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Post by trishasmom on Feb 8, 2007 19:36:35 GMT -5
Ok we had our IEP meeting today and most of it was taken up on OT goals which is a good thing as her goals are now mor functioning and will help her in self help skills and in sign language. As far as sign language we seem to be at a stalling pattern and I let them know up front I was not happy and that we needed to get this rectified and soon but at the same time I said to table the sign language for anther meeting as I wanted to bring this up at the FAPT meeting to have them clairify just what they meant by sign language approval. This is a never ending saga and the delaying tactics have to stop. The special ed director asked for a sign evaluation to which they had some lady who knows sign come in and supposedly evaluated her and now they are saying they want someone else to evaluate her as they weren't too happy with the first evaluation. I told them they needed to find someone to do the evaluation with in the next 10 days (they don't have to do the evaluation in the next 10 days just find someone and set a day) and I had them put that in the IEP. I'm tired of all the stalling they are doing. Also, the new PT was supposed to be at the meeting and wasn't and I said we need to table that as well until the PT can be there to discuss goals. So much valuable time is wasted while they play their little games. Will post an update as the saga unfolds. :-)
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Post by trishasmom on Feb 3, 2007 11:22:32 GMT -5
I hope Greg is feeling better real soon. When Trisha sounds like she has something respiratory she doesn't and when she doesn't sound like it she does! go figure. lol
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Post by trishasmom on Feb 2, 2007 17:02:23 GMT -5
Ok we all understand that having or not having an aid has nothing to do with LRE, now the other question is does he need an aid? It's not just a matter of wanting one it's a matter of the needs of a child. You would have a better chance of getting an aide if you let him go without one first to see if he does need one. Wanting and needing an aid is different. I would sit down and write why I think he needs an aid (be objective if possible) and then write down why you think he could make it without an aid. Then have someone you have confidence in and who can be objective look it over and discuss the each thing you wrote and after that if you still feel he needs an aid then at least you have part of your paper work done to present to the IEP team.
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Post by trishasmom on Feb 3, 2007 11:12:09 GMT -5
WOW! I've been using mentholatum for the past 60 years....however old I was when my mother first used it on my lips at about two. It doesn't burn, it keeps my lips from chapping, and as long as I use it, I don't get cold sores, either. The dry weather here in Tucson is brutal on skin, and my lips are especially dry because I don't wear lipstick unless there is some BIG deal going on. I'm just surprised to find that someone else uses mentholatum. I thought maybe my family was the only one to ever think of it. I remember my dad having a little green bottle of the stuff on his night stand and on the coffee table by his pipe stand. Char Now that is funny because I thought we were the only family to use mentholatum. lol Mentholatum doesn't burn or sting and I have been using it probably for about 40 + years now. I use it on Trisha with no problems in fact she likes to come get my little jar and put some on her own lips. They do have the children's cherry flavored one now. When I was younger I got the sores so bad that the lower corner of my mouth the pigment has faded. I also use it on my hands when my arthritis kicks in and makes it hard to crochet. See some of those home remedies really do work. :-)
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Post by trishasmom on Feb 2, 2007 12:29:30 GMT -5
Ok don't laugh but what we use is Mentholatum. I used to get sores in the corner of my mouth as a child and one day my mom didn't have anything else but mentholatum and used that, well it cleared the sore up and I have been using it ever since. I am proud to say I have not had a cold sore on my mouth unless I am out of mentholatum which I try not to be. My sister uses it as well and she doesn't have cold sores now and she was worse than me. I use it on Trisha and she doesn't have them either. I won't say it will cure everyone but for us it has been a big help. I do not use the mentholatum lip balm it doesn't do as well, just right out of the jar. :-)
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Post by trishasmom on Feb 2, 2007 12:25:00 GMT -5
Carol, YES.......in the future, I will most definitely send a PM to the person whose comment gets deleted. I am the moderator who deleted the comment last night, and I have now PM'd the person, so they will know not to make the same mistake again. As moderators, we are extremely lenient........many times, we've been too lenient. If a comment is hurtful, I will do what I can to make sure it is not seen by those who might be most hurt by it. It's a very rare thing for us to delete a comment. Susan You don't have to explain to me, I am a list owner and moderator to a few other lists so I know what you mean.
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Post by trishasmom on Feb 2, 2007 7:22:07 GMT -5
Just curious, when you do remove a post I'm assuming you tell the person why it was removed so that they know not to make that same mistake again? :-)
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Post by trishasmom on Feb 2, 2007 6:45:21 GMT -5
It's not just on Uno that people are getting this horrible email, people on other DS lists and even people who have blogs are getting them. I have not received one but I would recommend reporting this person to their isp provider.
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Post by trishasmom on Feb 4, 2007 13:54:57 GMT -5
There are HS websites that are good...message boards...etc...but nothing that seems to really keep it at bay. It is sort of...whatever works for you ...treatments. Jackie mom to Emily 26 For years Trisha had this problem and all the docs said was to put bactroban on it and treat with antibiotics when they got infected. She sees a dermatogolist now and she is on a maintainence of antibiotic, Clindmycin lotion but the biggest change I noticed was when she started taking thyroid medicine. She still gets them but not as many and they heal faster now than before and are not turning that deep dark purple. She also has a cyst right on her tailbone that stays flared most of the time. We also use epsom salt soaks and I always put a few drops of Tea Tree oil in her bath and I use straight Tea Tree oil on severe lesions. We have gone from her having maybe 15 -20 just under her breasts and about 5-10 in her groin area to having 1-2 under her breasts (and they don't stay very long) to some spots on her inside thighs but they don't develop into a lesion and go away without becoming infected. It gets worse when she is on her period. The good news is by being on the antibiotic program hers no longer get infected which is why I believe she isn't getting the purple scarring. The even better new is that hers has not started tracting. I am sure at some point we will have to change her maintenance program but for now it is helping a lot. I take her off the oral antibiotic for a week or two and then back on for a week or two.
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Post by trishasmom on Feb 2, 2007 17:12:19 GMT -5
Here is the a website you can check out for HS which is what Hidradenitis Suppurativa is also called. www.hs-foundation.org/
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Post by trishasmom on Feb 1, 2007 8:20:21 GMT -5
Carol.........THAT is the name of the skin condition that Emily has had for years. She only gets it occasionally, and the lesions go away in a couple of days. Jackie D once posted about this many years ago. Kind of makes me wonder if this is another one of those things that persons with Ds are prone to getting?? Trisha is in stage 2 and it takes a bit for the lesions to clear up and they leave awful purple scarring that takes months for the purple discolor to fade. She is on an maintenance antibiotic treatment for that as well as several prescription creams. Kids with DS are more prone to sensitive skins. The lesions are very painful at times and they go under the skin in what is called tracting and spread from on lesion to another. It is not contagious but in some cases surgery is needed to clear out the tract so it can heal. It can also become phsycially disabling if it goes into the later stages. Trisha has had this for many years before we finally found out what it was. Sometimes the lesions have to be lanced as they get so hard with secondary infections. I am just so glad that right now it seems to be under control. Trisha gets in mainly in the groin area and under her breasts. So far she hasn't had it under her arms.
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Post by trishasmom on Feb 1, 2007 7:03:40 GMT -5
I have found that shea butter has helped Trisha a lot. She also has a severe skin disorder,Hidradenitis Suppurativa that causes boil like lesions. We find that soaking in epsom salts and putting Tea Tree oil in her bath helps. We also use a moisturizer on her for her dry skin (dry skin can cause rashes). We have also noticed that since she has been on her thyroid medicine the rash has all but gone and we are now dealing with the Hidradenitis Suppurativa and have that pretty much under control.
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Post by trishasmom on Jan 31, 2007 17:50:18 GMT -5
I was venting, but am open to any words of wisdom! I have words, not necessarily of wisdom though. :-) First of all I'd ask them to be more careful about putting his notebook in someone else's bookbag you know the privacy issue thing. :-) Second I'd ask if your suggestions on how to help JT from becomeing frustrated were implemented and if not why. Does he have a behavioral plan? If not you may say you want a FBA done. Also, from now on tell them you want data collection done stating what was going on prior to the behavior, during and after the behavior and you want this to be documented and sent home daily. I warned you it would be words just not necessarily full of wisdom just thoughts. :-)
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Post by trishasmom on Feb 1, 2007 7:12:34 GMT -5
" " I don't know maybe this makes me a very shallow person BUT if I had a choice for my self I will honestly tell you I would rather not have a disability if by some chance I had a choice. CC who just thinks way to much Just something else for you to ponder, have you thought about how maybe our kids are the normal ones and it's the rest of us who have the disabilities? Think about it for a sec, our kids/adults are about as close to being innocent as you can get, most of the time they are very non judgmental and it's the simple things in life that they seem to cherish and the love of family. Hmmm... maybe we could learn from them more than what they learn from us. :-) Why is it that we give them the title of Special Needs or refer to them as our special angels? I don't mean to add to your thought process but if you are looking for fuel for the food process that's one more view to look into. :-) We try to have them be accepted by society where maybe we should try to be more like them and less like what society wants? lol
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