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Post by trishasmom on Jan 15, 2007 20:20:01 GMT -5
i think that is what the slp called it. she said that leah would NEVER talk. it is sounding to me that we might have hope that that is not always the case. i guess i need to get her a private slp. i am just affraid of her getting so burnt out that she will revert. she is sooooo stuborn , i am sure you know exactly what i am talking about! i might pay all this money and all they will get out of her is the raspberry! i guess i will call tomorrow. thanks! any more insite would be appreciated! tiffany There is always hope! One of the keys I have found is to work with what Trisha is interested in and then bring other things in a little at a time. Trisha is not interested in the same things other typical 14-15 year olds are intersted in so it wouldn't make sense to have her read "age" appropriate materials for several reasons, 1- her readin level is that of a pre-schooler 2- her interests aren't anywhere near that of a 14 or 15 year old more like a 1st - 2nd grader and 3- repetition. Reading and Signing has been 2 of the reasons she is beginning to verbalize more and the 3rd reason is that she is beginning to understand that she needs to make others understand what she is communicating even if she has to use several different modes to do so.
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Post by trishasmom on Jan 15, 2007 17:20:28 GMT -5
Trisha has global apraxia and also she has dysarthria.
Apraxia is different from dysarthria in that there is no muscle weakness. The errors heard in dysarthric speech are usually consistent and predictable, while errors in apraxic speech are unpredictable. Apraxic speakers "grope" for the correct word; they may make several attempts at a word before they get it right.
Oral apraxia and verbal apraxia describe a difficulty coordinating mouth and speech movements, limb apraxia refers to motor planning deficits relating to arms, legs, fingers, etc. and global apraxia would be all of the above
like in everythings else she can't be satisfied to have a single dx she has to have dual dx's. lol
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Post by trishasmom on Jan 14, 2007 11:08:16 GMT -5
Trisha is 14 soon to be 15 and she is still considered non-verbal to a point. She has some 1 word utterances but cannot carry a conversation or talk in sentences. The more signs we work on the more she tries to verbalize. I truly believe that because she is hard of hearing and a visual learner that the signs help her to process the word long enough to make sense of it. The sad part is that the schools are teaching her one word like baby talk instead of teaching her words naturally. You cannot teach a child one word at a time and then expect them to converse using those few single words in a natural flow. Some words she says I think everyone even strangers could understand but there are some words that sometimes I am the only one who understands her and then there are alot of words no one including myself understand, it's the same with her signing. Anyway what I am trying to get at is that even at 14 she is learning new words all the time. I do not believe the brain stops working at a certain age and while yes maybe for the majority they learn better when they are younger but I think in Trisha's case it was the opposite, she is learning better now that she is more mature. Mmmmm... I h ave to wonder then if the brain appears to slow down it's learning because as we get older we no longer learn eagerly like we did when we were younger? Maybe as we get older we aren't as willing to accept things as we were before we knew to be so cynical? :-)
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Post by trishasmom on Jan 12, 2007 11:43:21 GMT -5
LMAO.. yes that's my boy! Don't take him out of his "play" room and make him work! LOL
I can see us parentst having to add "you want me to do what!!!!" to our kids communication devices. lol
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Post by trishasmom on Jan 10, 2007 21:53:55 GMT -5
Tracy,
I just wanted to say welcome! I personally think it is typical for kids to listen to dad's more than moms even those without disabilities. :-)
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Post by trishasmom on Jan 10, 2007 19:52:35 GMT -5
please add my prayers to the rest and I hope he is feeling much better real soon.
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Post by trishasmom on Jan 15, 2007 22:13:53 GMT -5
Sarah has a new one to add to the flop and drop routine. How many of you have seen the Upside Down Show in Noggin? Well, the two guys on the show frequently "accidentally" fall down. Sarah thinks they are hilarious and loves to fall down and yell "WOOO". She thinks she is quite the comedian. Chris If Trisha accidently bumps you and if you laugh and say whoops then she wants to keep on bumping you to get you to laugh and she will laugh as if it's the funniest thing in the worls. :-)
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Post by trishasmom on Jan 10, 2007 19:34:18 GMT -5
While there can be many reasons for the flop and drop not always is it behavioral as in avoidance or just being non-compliant. Sometimes it could be physical. With Trisha's hypotonia she has lots of problems with her legs and hips. She flops mostly when she is tired or standing on her legs to long. I highly recommend having their hip sockets checked periodically to make sure that they are not being worn down from the way they walk and use their legs. I realize not all children with DS has that much of a problem with the hypotonia but it doesnt' hurt to check to make sure. With high tolerance to pain by the time they are showing pain they could have completely worn their sockets out and I know that has happened before. Trisha still has an immature gait and being overweight doesn't help either. We use a wheelchair when there will be alot of walking and that has been a life saver on my poor worn back. Trisha will flop and drop even if it's something she wants to do when her body has had enough walking. So just to caution it may not always be a negative behavior but a physical one. JMHO
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Post by trishasmom on Jan 10, 2007 19:07:00 GMT -5
We also give lots of praise it's a good motifier and it all depends on what she is doing. The hard a skill is to learn the more we praise, clap, say whoo hoo, etc. If it's a skill she has pretty much mastered we just say good job if she looks at us expectently other wise we just go on with normal business. I remember someone asking me if I would still be clapping for her when she was 40 years old and my response was I sure will and I will be clapping for me too cause when she is 40 I will be pushing 80! lol
I was just thinking, when we go to a concert do we clap after every song? Or do we clap everytime some one says something in a speech we like? What about sports do we not clap, holler, cheer and so on during the whole game? If a little cheering or praise is going to get her to learn a new skill heck I guess I can keep on cheering and praising, it sure beats having to do the total care so yea, I'll keep on cheering and praising cause that means that is one tiny thing I might not have to do anymore or at least not as often. :-)
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Post by trishasmom on Jan 15, 2007 22:34:19 GMT -5
If Abby is stubborn, then it's her greatest quality! That little sweet baby was given very little chance of survival, and she just flat refused to give up. For that, I am eternally grateful. Abby had fantastic doctors who used innovative and to some extent, experimental medical procedures, but the end result is we have a beautiful little baby who brings everyone so much joy. Golly, Abby, if you are stubborn, keep it up, kiddo. You are my joy! Char Sometimes I have to wonder just what stubborn is. Personally I don't think Trisha gets her stubbornness from DS, she gets it honestly from me! :-) But seriously, if she wasn't stubborn then would she continue to survive in this strange world? Would she just give up? While stubbornness is a pain when you are trying to get her to turn her music down after asking what seems like thousand times it's also a blessing when she keeps plugging away at something she has trouble doing until she gets it. Maybe we should stop saying they are stubborn and say they are very persistent! lol
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Post by trishasmom on Jan 9, 2007 17:24:41 GMT -5
We had the same issue with Trisha and she loves to go barefoot so that strategy wouldn't have worked either. She was so bad that she would take her shoes off in the store and throw them. We just kept having her put them back on and it took awhile but she finally got it. She now leaves her shoes on during all bus rides and most car rides unless we are in the car for hours on a trip and then they come off but so does mine. :-) I didn't put her shoes on for her, she had to do it so it wasn't so much fun when she had to. She loved the attention she got when I would have to stop and put her shoes back on. All the fun went out when we used the phrase you do it. :-)
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Post by trishasmom on Jan 10, 2007 19:44:36 GMT -5
Now I can't imagine why you like her name. :-) But I like it too! lol
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Post by trishasmom on Jan 9, 2007 17:02:46 GMT -5
like your way of thinking on the 12 hours a year of sign lang instruction.... Definately unacceptable!!!! Keep us posted on how that goes!
As far as what has been going on here? Well, we've grown LOL.. and we are a fun bunch.. and well, I love it here!
You know I am thinking at the next IEP meeting in February, I am going to write down a list of 10 words and tell the team that they can only use those words during the whole meeting and see how they like being so limited in their communication. Let's see they seem to think that these words are appropriate for my child so let's give them to the team to use: eat, drink, hurt, wait, stop, want, first, then, happy and sad. Now just how well do you think they would be able to get their thoughts, ideas, suggestions etc. across using such a limited amount of vocabulary? :-) Carol Trishasmom She isn't typical, She's Trisha!
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Post by trishasmom on Jan 8, 2007 22:28:17 GMT -5
Looking forward to getting to know you and hearing more bout you and yours My guy, aka Christopher who just turned 14 in December and too has a dual DX of DS and ASD.
Glad you came back here.
Thanks for the warm welcome and I too look forward to learn about you and yours! :-)
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Post by trishasmom on Jan 8, 2007 22:27:04 GMT -5
Well howdy Carol!! Yes, I know you also from the dual DX yahoo site! Howdy.. glad you made your way back here!!! Sounds like you last days of posting here were when my first posts started
Welcome back!!
Thanks, small world isn't it. lol
So bring me up to speed as to what has been going on all these years. lol
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