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Post by trishasmom on Jan 30, 2007 22:49:13 GMT -5
CC I understand what you are saying. :-) I sure wish I could get into her head and see what she is thinking especially about all that we put her through in the name of helping her. :-) Sometimes she smiles or laughs for what we might deem as no reason but I honestly believe she has a very good reason and just because I don't always know that reason doesn't mean it isn't there. There is happiness that she has that I may and most likelywill never understand and that's in spite of all that is put on her by well meaning people as well as a well meaning mom. There is a profoundness about her at times that just boggles my mind. She may be low functioning by society's standards but she has a lot going on it that head of hers and she thinks and wants and cares, she knows that but she just can't make us understand that yet. We just don't know her language. :-)
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Post by trishasmom on Jan 30, 2007 18:14:34 GMT -5
I periodically read his blog, he does give you something to think about each time he writes. :-)
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Post by trishasmom on Jan 30, 2007 22:27:57 GMT -5
There are a lot of sounds that Trisha either can't hear even with the aids or hears differently than what they are. For instance hat and hot sound the same even if you are looking right at her. But if we sign the word along with saying it she has no problem. The more words she gains the more we see how the hearing loss affects her. Words that end in ey she says what sounds like es. She sometimes doesn't get the first part of a word and blends are especially hard for her. Monkey is es, the end only. The funny thing is that some words it's the beginning sound she misses and some of them it's the ending. She can say pig but not pizza (she says za za for pizza) she can say water but not work (she just says the k sound for work). Anyway as I said the more words she is verbalizing the more we notice what she is missing or misunderstanding.
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Post by trishasmom on Jan 30, 2007 20:49:56 GMT -5
Trisha does wear her own aids but I have it in her IEP that if they get lost or damaged while at school or to and from school then they are responsible for them just like they are for her communication device. I prefer to get her aids because then we get what we believe is best for her and don't have to argue over it. We also got the communication device pretty much for the same reason. We are working on getting the FM system but the school district is dragging their feet. She is not in a public school she is in a private autism school paid by the school district so all her related services has to be contracted for her. Her audiologist has recommended the FM system and the school district seems ok with it but just dragging their feet it's been almost a year now.
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Post by trishasmom on Jan 30, 2007 14:24:04 GMT -5
For those that has children who also have a hearing impairment what do you have on the IEP as far as related services and accommodations? Trisha has a mild to sloping severe hearing loss in both ears and is bilaterally aided. I received a note the other day that they think her ears are growing because the aids keep falling out. We just had new molds made the week before Christmas. Anyway it has come to my attention that her HOH is not actually being supported by her IEP and I need to address this at our upcoming IEP meeting on the 8th of Feb. I was hoping to hear what others have on their IEP's. Oh, btw, the aids keep falling out because they are not inserting them correctly. One of the things I want to discuss at the meeting is having a HI teacher at least on consult who can come in and train the staff on how to maintain, insert etc. the aids. Their staff changes often since most of the assistants are there for part of their higher education in the special needs curriculum. Thanks for any input. :-)
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Post by trishasmom on Jan 30, 2007 6:44:27 GMT -5
Oh but I do understand, and it's a kodak moment when they do something they have struggled so hard to accomplish. I remember Trisha struggling so hard just to get in a crawling position it was so hard for her and in this case therapy didn't help and actually hindered her. Every time she would get in a crawling position they kept "fixing" her legs to the point she stopped even trying. I told them to leave her alone and after that she started trying again. The funny thing is once she was able to crawl it was only a short time later she was trying to walk. I have pictures of us making shadows on the floor as she seem fascinated with those and would try to walk to the shadows. The first time she pulled herself up on the couch you would have thought we'd won the lottery! lol So, yes you have a great reason to brag and to celebrate. Why to go Em!!!!
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Post by trishasmom on Jan 30, 2007 6:38:17 GMT -5
Just wondering how much comes natural to each child like as we have read some are so much better with speech or the gross motor or the fine motor?? Just thinking out loud here, why some areas seem to be more affected then the next CC ~ The same can be said for everyone, why do some people continue to go to college and become teachers, professors etc. and others either drop out of school or just get by with a high school diploma? We are all individuals and what might be easy for one is hard for another. If all of a sudden you would remove the DS from our kids they would still all function at different levels just like their typical peers do. Making friends generally comes easier to me than to my sister, English grammer comes easier to my sister than me, etc. My sister does great with book learning but not so great on the common sense whereas I do better on the common sense and it's harder for the book learning for me (as in I'd rather see it in action than to read about it or see it up close and personal when I can) :-) Some times with both our special children and our typical children we can do too much or not enough, trying to keep that balance is what is so hard.
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Post by trishasmom on Jan 28, 2007 14:31:04 GMT -5
some people have two rear-view mirrors in their car, one for driving and the other angled so they can see their child so that they can see what they are signing. :-)
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Post by trishasmom on Jan 28, 2007 12:39:36 GMT -5
I grew up with my parents telling me to go to the bathroom before we got in the car and I did the same with my typical son who is grown now in fact most families I know typical or otherwise remind their kids to go to the bathroom before getting in the car. Heck I am grown and I go to the bathroom and sometimes we don't get very far down the road when I feel I have to go again (sorry for to much info) but the point I'm trying to make is that sometimes motion might stimulate the bladder into thinking it has to go again and maybe our kids don't know how to hold it as of yet. As for the using pull-ups, it just makes sense to do something that will both keep the child dry and the car dry. When you get ready to leave maybe everyone can have a turn at the bathroom so he sees it isn't just him that needs to go before getting in the car? If he has learned that if he signs bathroom once he is in the car he will soon learn that even if he gets out to go to the bathroom he will still have to get back in the car and the fun of it will wear off eventually. You can also set up rewards for him so that if he is dry ath the end of the trip (each way)he gets something special (it doesn't have to be something bought, it could be as simple as getting to sit and be read to or playing a favorite game with his favorite person etc.)and if he is wet then just go about your daily business and not say anything to him. I have expectations for Trisha but I do not set them higher than I would for a typical child and I do modify them to meet her abilities. :-) I try not to set her up for failure rather go in small steps so she builds up her self-confidence and wants to move on to the next level. Somethings come easier than others for our kids and what one child can do and understand might not be the same for another child. Go by what your gut instinct tells you after all you do know your child best. :-)
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Post by trishasmom on Jan 28, 2007 10:07:19 GMT -5
For Trisha we just get the two piece bathing suits that have the short style bottoms which covers the entire area. :-)
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Post by trishasmom on Jan 29, 2007 19:30:06 GMT -5
That DVD is played so much around here, both Brian and I have that song in our heads constantly. He hates that woman's voice so I just crack up when I catch him singing the song!! Very funny. Jessie I can sympathize with him! Rachel Coleman is great but after you hear them over and over and over and...... well it does start to grate on your nerves. lol Trisha can't sleep without one of the signing times playing. If I go turn it off after she falls asleep she wakes right up. She gets that from her mom! I used to fall asleep watching the weather channel and if your turned it off or changed it I would wake up too.
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Post by trishasmom on Jan 28, 2007 14:39:01 GMT -5
I wanted to add that Sarah's fine motor skills are very delayed and she doesn't sign perfectly but as she gets older, her signs are getting more refined. Chris Same here for Trisha. Also her fine motor skills are still underdeveloped and she will be 15 next month, but her signs are improving and the more we work on her signs the more it helps her fine motor skills. There is a book called Pre-Sign Language Motor Skills written by Marsha Dunn Klein. Our OT loaned it to use because she thought it would be beneficial for us and she was right, it is. It talks about the relationship of the sign to the body, hand shapes, sign language activities and more.
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Post by trishasmom on Jan 28, 2007 12:45:07 GMT -5
I don't know how verbal Joshua will end up being. He won't be two until next month. But, he has used signs for almost a year. I felt goofy doing it but, I've signed for him since he was about six days old. I modify the signs for him, so they are similar to the "real" ASL signs, but easier for him to do. So far, he has learned Mom, Dad, hi, bye-bye, eat, milk, more, and play. I'm trying to come up with a modified sign for "drink" that isn't so much like "eat", and that's what we'll work on next. He uses his signs all the time. Of course, I haven't even tried to get him to use sentences yet. He can say Mama and Dada now, so, for those two words, he says and signs at the same time. If you don't mind, may I make a suggestion? Don't modify the signs for him, sign them correctly so that later on he doesn't get confused BUT accept the way he signs them. If he modifies that is one thing but if we modify then we might be teaching them a sign that could be considered an insult to the DEAF community. Always sign it correctly over time he may come to be able to sign it correctly as well. Also, if he learns the correct way to sign and if someone else is signing to him he will recoginize what they are signing. :-)
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Post by trishasmom on Jan 28, 2007 10:16:11 GMT -5
There are many styles of signing, there is the ASL language which is what you are referring I believe and then there is the asl in pidgeon and signed english word order and several others. We use the ASL in signed english word order for Trisha. She also loves the signing time videos but I am requesting that the school provide her with proper sign language instruction now so that she can communicate more than just a few things to us. Some ST don't believe sign is a good thing for our kids but I'd like to say that the more we sign with Trisha the more she tries to verbalize. For example, last night we were laying on the couch watching her signing time videos, she was signing along with them (she never did that before) and signing as best she could (yes she does sign approximations but that is ok, the more they sign the better they get and she does have very delayed fine motor skills even now at 14 yrs old. that is another story!) Anyway I was amazed at how many signs she knew just from watching the signing time videos and how when they said the word she would say and try to sign it at the same time. Of course I heard and still hear that she can't sign perfectly or that not everyone in the world knows sign or that it will keep her from using her voice. That is all a bunch of BULL! There are people who are deaf who for one reason or another have to use sign approximations, the world will not be the caregiver to my child and those close to her will learn her style of signing and be able to translate for her and she IS learning to using her voice more and more. Think about it, when we sign, we use both the sign and the voice so she gets the visual as well as the audio which is a big plus for her since she also has a mild to sever hearing loss in both ears. Just my 2 cents. :-)
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Post by trishasmom on Jan 28, 2007 14:51:20 GMT -5
Welcome and happy birthday Maggie! :-)
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