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Jan 10, 2005 11:09:08 GMT -5
Post by jeannie on Jan 10, 2005 11:09:08 GMT -5
my son is 3 1/2 and not saying much!! he says about 5-7 words. he is pretty quiet. from time to time he goes on and on babbling but you can't understand anything he is saying. he is getting speech ONLY cause i pay for it out of pocket. they say he doesn't qualify? what on earth is that all about? we are fighting it, but in the mean time it seems like he is so distant. he doesn't even look at you when you call his name. some times he seems sooo smart and other times he is so far away. i am doing more hearing test to see if maybe something is going on there with his speech. i just worry.
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Jan 10, 2005 11:31:13 GMT -5
Post by Jessie on Jan 10, 2005 11:31:13 GMT -5
I can sympathize with you on the not talking issue. Jason, 11 yrs, cannot verbally communicate very well. The words he does say are usually the last syllable of the word (and one-syllable words like "NO" he seems to get pretty well - LOL). For example, our dog's name is Toby, but he yells "B", and, yes, the dog knows that he's calling him.
However, when we are playing/wrestling, he will say "I get you" very clearly. The roof of his mouth is a little more concave than normal, so that could be why he has a hard time forming words. They have told us at school that he would not benefit from have speech therapy. I don't personally believe it because in the past year he has added more words to his vocabulary. They also told us not to rely too heavily on signing. Jason does use some basic signs, so I don't know why they feel he can't rely on it more. He gets frustrated very easily and acts out physically, which I attribute directly to his not being able to communicate well with people.
So, in a nutshell, I wasn't very much help to you! Only that I can sympathize with your situation.
As an added note, my nephew who does not have DS didn't speak clearly until he was 3 1/2 to 4 years old.
What does you doc say? I know that after we get back from our honeymoon in February, one the tasks on my to-do list is to get another opinion on speech therapy.
Jessie
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Jan 10, 2005 12:27:42 GMT -5
Post by justinsmom on Jan 10, 2005 12:27:42 GMT -5
Jeannie, we had the same problem, the ins. company wouldn't pay for Justins' ST. I had his Ped. and teacher write letters and the doc a script with the diagnosis of Speech and Language impaired, and hypotonia, it worked and Justin gets ST at the hospital once a week and school daily. Would your ins. company at least pay for an evaluation. Justin still doesn't talk understandably but he does manage to get his point across . What has also helped is having him around alot of typical kids of course it helped that I watched my 5 nieces and nephews in those early years . He also does better with a microphone and Karaoke ok he is a little ham but he loves to hear himself. He can say some phrases like What do ya want and mom come on and some other words. As like Jessie my nephew non DS didn't start talking til he was 3 1/2 -4 yrs. mostly cause his brothers and sisters did everything for him and he didn't feel the need to talk. As for the hearing, Justin ended up having a loss in his left hear we didn't even know about, the audiologist explained it as if you were to put your hand over your mouth and talk while covering you ears, everything sounded muffled and distorted and that was what our little guy was hearing . I just wish we would have known sooner but he showed no signs of a hearing problem. The problem was corrected with T-tubes which he had for 2 yrs. He can babble with the best of them and even though you can't understand him we still ask him questions and he answers in his way and we go about like we understand him as not to discourage him. I look at it this way sometimes I think it's good we can't understand what he says sometimes cause then I think he would be sitting in time out quite a bit more especially when has that finger pointed at me
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Jan 10, 2005 23:58:47 GMT -5
Post by christie on Jan 10, 2005 23:58:47 GMT -5
My guy is 12 this past December and Speech is his biggest delay I want to share that NEVER give up hope and keep fighting for services. I have fought this battle for the last 9 years and the fight has been worth every ounce of energy I have.
Chris gets speech 150 min. a week paid by our school district and even now at 12 I will not stop fighting for it.
Chris said very few words at 3 years old and I was told way back then, that would be all we would probably get from him. OMG soooooo WRONG, he says soooo much more now, yes he is still very delayed and probably will not give the speech of the year BUT he is inproving and thats all I can hope for ;D
Personally I think the speech problems are the hardest and worst part of DS it makes communication sooo hard for our kids BUT its an area that will and does improve I can promise you that
CC ~
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Jan 11, 2005 7:56:12 GMT -5
Post by Jessie on Jan 11, 2005 7:56:12 GMT -5
CC - I'm glad you posted a reply to Jeannie about the not giving up on pushing for speech therapy, etc. Last year when I attended an IEP for Jason for the first time, I was more there for support for Brian than really knowing what to talk to them about. I think Brian just accepted what the teachers and his ex had always told him about Jason, that he would never advance very far and that he physically can't speak.
However, Brian has seen so much improvement in Jason just in the past year that he has been in Michigan that he is realizing himself that Jason CAN do more.
Actually, Jason LOVES to learn and accomplish new things. And, I would have to presume that he would LOVE to be able to say more words and be understood by the rest of the world!
Like I said in another post, when we get back from the honeymoon (OMG, wedding is in 11 days!), than we are going to start pushing for more for Jason. I've already purchased materials to make one of those visual aid books for him that they use in school so we can start using it at home also.
Now that I know more about Jason and DS in general, those people don't know what they're in for!!! LOL
Thanks again.
Jessie
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Jan 11, 2005 11:17:50 GMT -5
Post by Staci on Jan 11, 2005 11:17:50 GMT -5
This is one of my biggest concerns for Aidan, as I'm sure it is with many parents of our kiddos with DS! Aidan gets so frustrated because he can't express his feelings, can't communicate the way he wants to, and it had gotten pretty bad there for a while with him lashing out. With the help of A (Russell's mom), I took pictures of things in Aidan's life that are important to him (like the picture exchange communication system, or PECS) and made copies for at home, at school and for a traveling book and it has REALLY helped Aidan. He doesn't get as frustrated as he used to, and is actually saying a lot of words, or trying to say words, on the board and in his book, which he loves and we look at the book every day. It's been a great help!
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Jan 11, 2005 12:17:29 GMT -5
Post by momofrussell on Jan 11, 2005 12:17:29 GMT -5
Russell has always had a big delay in Speech AND communication so we have ST. That bugs me that just because he is doing 5-7 words you can't get ST right now for him. I know in other areas, like PT, ect... to PROVE your child needs it, you need to get creative for goals NOT met yet, so I would take that direction when addressing this. Sometimes creativity is key! Like, what do you want your child to be doing speech-wise, 6 months from now, 12 months, ect... maybe get an idependent eval if needed. There are TONS of things that they could be working on with your child. If he says 5-7 words... how 'bout sentences? Prepostions? Ect.. I think if you fight it, you could get ST just fine! Sometimes they SAY they don't qualify and we don't say anything and that is that... say NO WAY and get that ST for him!!!!! Staci... I am so glad to hear Aidan is doing really well from the PECS! That is GREAT!!! A.
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Jan 11, 2005 13:21:44 GMT -5
Post by Jessie on Jan 11, 2005 13:21:44 GMT -5
Good thought there on getting creative with pushing the ST issue. Fortunately, or unfortunately depending on how you look at it, we have a real issue with Jason needing to be able to speak his own name, our names, his address, whatever.
Now, we don't let him wander or out of our sites, but a few months ago he snuck out of the house early on a Saturday morning and the police brought him home - OMG! that was an awful morning! He only had his boxer shorts on (the funniest part of the whole ordeal) and took off down the street. When the policeman caught him (after chasing him about a block - ok there's another funny thing), Jason couldn't identify himself or give him any information. We now have alarms on our doors so he can't get out without us knowing, but I worry about him at school. His nickname there is "Houdini" because he does disappearing acts!
So, my point is, there are some very real issues that need to be addressed for these kids that can't verbally communicate very well. We have gone down the road of identification bracelets and necklaces, but he won't leave them on for long.
Just an added thought there . . .
Jessie
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Jan 11, 2005 14:09:31 GMT -5
Post by Connie on Jan 11, 2005 14:09:31 GMT -5
Jeannie, A. is right about getting creative. You may try this...while your son is saying 5-7 words that you can understand, can others understand him? Is he saying both beginning and ending sounds? Is he starting to put 2 word sentences together? These are all part of normal speech patterns for a 3 to 4 year old and if he's not doing this then he should quailify for speech. I know Collin, who will be 5 in February, had trouble with these. When he transitioned into the school systems he got services under a developemental delay and a speech delay because while his receptive language was normal his expressive was not. Collin still has a huge delay but in the last year he has made huge strides. He has really started independent speech but we still have problems with him dropping the beginning and ending sounds on some words. His clearest word....that his FATHER is so proud of him being about to say (that I do not use or permit my kids to use) is BUTT!!! Drives me crazy but my DH is so proud that he says it so clear and uses it in the correct tense!!! MEN!!! Keep plugging away you'll figure out a way to get him speech. Connie
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Jan 12, 2005 9:27:56 GMT -5
Post by Ashlea on Jan 12, 2005 9:27:56 GMT -5
Have they told why he doesn't qualify? Are you receiving services from early intervention or the school system? I would most definately fight for all the speech you can get.
My son, Chandler (age 6) has always received speech either through early intervention or through the school system (starting at 3 yrs old) even though he is very verbal. He qualifies for speech based on his "diagnosis" rather than his actual delay although he is delayed but not enough? Doesn't make much sense, I know.
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Jan 14, 2005 9:35:03 GMT -5
Post by jeannie on Jan 14, 2005 9:35:03 GMT -5
thank you all for your post! A.J. says car, ball, go, bye clearly the rest of his words are only the begining sound. he signs about 25 signs. NEVER does he speak or sign without prompting. he talks to his hands sometimes. i think his is singing? but you can't understand him. he is in a VE (varing exceptionality class) he gets ot 1x week pt 1x a week. they say he is speaking where he is developementaly. that is way he doen't get speech. that is not true cause if he can sign 25 words and can't say them then why doesn't he qualify? it doesn't make sense to me.
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Jan 14, 2005 9:48:12 GMT -5
Post by momofrussell on Jan 14, 2005 9:48:12 GMT -5
Ok.. before I jump on my soap box for ya LOL, WHERE do they say he is "developementally"? Give me an age, if you can? Then... (because I am a d**n good argueer LOLOL) if you want, WE can tell you why he DOES qualify at that age level!!!!
I DO know how you feel though and this is why the creativity comes into play for stuff like this. Schools have "guidelines" and "tests" that spell out where the kids are to THEM and what they qualify for... but, I don't feel they take into account retention, future stuff, medical stuff (sometimes medical DX's don't always end up getting you and school age DX on things), and a slew of other things that go into if a child REALLY needs things. All the schools look at is where your child is at and what they can do... it's so cut and dry to them... and, well, it's not!
And to me, the CLUE you gave us is that he ONLY talks or signs WHEN PROMPTED. Now that is a red flag for services if you ask me... gheesh.. Russell is 6, 7 in March, and STILL doens't speek and only can do a couple signs... WHEN PROMPTED. "When Prompted" and "initiating communication" are TWO different things if you ask me, and your son needs to learn to initiate it! AND.... part of ST here for Russell IS learning to initiate SOME kind of communication, i.e., PECS, SIGNING, ect... (they currently are working on him using real objects). It sounds like they think thier job is to JUST have him say a few words!
I am assuming your son is in a Early Childhood kinda class? What does his teacher do to get him to communicate? Does she expect him to communicate to her or does she just prompt him and do it for him?
A.
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Feb 1, 2005 11:43:24 GMT -5
Post by SID on Feb 1, 2005 11:43:24 GMT -5
I have not been here in sometime reading this OMG How can they say these kids do not need or get a ST. I live in Ohio Cody has had a ST From 6 months and still has one. They give him speech at school 4 days a week and I take him to a ST at the hospital two times a month. I feel very lucky. I started signing to him around 6 months. We us SEE siging . He can sign over 200 words now and signs for most everything. I feel it has been the best thing I have ever done for him. He can tell me what he wants where he wants to go what he wants to play . He is just now talking as you may have seen my post. The only problem I do have with the signing is that not everyone can sign and the worst of it is the teachers. Alot of them do not sign as good as he can,but we are working on that LOL Most of my family and friends who are close to him have learned enought to understand him. We are working on the picture book as well but he seems to want to sign and not use it as much.He is saying alot of words and more are comming every day. I would fight till I got a ST they need that. I do not know where you live but you may go on line to see what his rights are in your state.You may find in your bill of right that you can have speech for them I had to fight for his. Look in to the resources and references Meeting the educational needs of children with downs or special needs. I work at his school a school for children with special needs. Untill I worked there I did not know about all the things that are out there for him that they do not tell you about. It is all about finding your own way here. I found so much just by asking and looking myself.They took the kids ST away in school this year said they did not have one to replace the one they lost at the end of the year. I fought from Aug till Dec the school board and anyone who got in the way . Took is as far as court. The kids now have a ST 4 days a week and are even getting the make up speech they missed for those months.It was a long and hard fight but I did not give up .Look every place you can ask everyone you know how to fight this .I did and won!!!!!!!!!!! ;D Good luck to you . If anything at all try signing it really helps even if others can not sign to them you can . Big hugs to all SID
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Feb 1, 2005 13:08:56 GMT -5
Post by kimnz on Feb 1, 2005 13:08:56 GMT -5
Hi
well obviously this speech thing is really a concern to so many of us...I hadn't yet read your message and by then had already posted my own message asking for speech tips on the general forum.
I too think it is the hardest thing about Down syndrome. Not being able to talk so well or get your messge across is SO frustrating and also brings with it some behaviour problems which people interpret as being "naughty" .....that's the thing that bugs me, when a child acts up because of the frustration and teachers think he is being naughty. That's how they get a label!
Kim nz
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