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Post by Ericsmomma on Aug 28, 2004 17:53:58 GMT -5
Evening everyone,
I'm really starting to get concerned about Eric's speech..or should I say "lack of". He is only saying about 3 words..Hi, Duck, and bye. He just turned 4 the end of June. I just thought he would really be taking off by now. It seems like he tries to pronounce words, but he just can't get them out. He has speech 1x per week at school for about 1/2 hr. But I think its in a group setting..the therapist comes to the classroom for his session, so I don't know how much of his attention she's getting. We started getting private speech therapy over the summer...1x per week..1/2 hr. but its one on one. I have been reading alot about apraxia, a speech disorder that shows difficulty in programming and planning speech movement. Its more than "low muscle tone", which alot of our kids have. Apraxia is more neurological in nature. When I mentioned this to our therapist, she kinda just said " i don't think thats his problem", but I'm not so convinced. Has anyone ever dealt with this or does your child have this diagnosis? Any feedback would be greatly appreciated. I'm not sure if I'm just a anxious mom, or there is really something more going on.
Dolly
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Post by Alice on Aug 28, 2004 18:32:03 GMT -5
Hi Dolly, We have almost the same problems with Luke's speech. I would like to give an advice (if you don't mind): never give up, and if it is possible visit all speech sessions your son is having. It is very important that speech therapist sees that she is watched. Many of them try to have sessions with out parents (why?). And if child doesn't have any progress, they say: "Apraxia". Watch them(speech therapists) out! Good luck, Alice
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Post by meghans_mom on Aug 28, 2004 20:53:38 GMT -5
Dolly - we've done alot of back and forth with this in the past here -- if you look back on the regular part of the MB you may find some posts that are helpful. Have you read Libby Kumin's articles about apraxia? they're an excellent read -- if you haven't let me know and i'll try and remember which website they're on. After I read them i was totally convinced MM had apraxia. So far, her therapists think i'm wrong Alot of times apraxia goes hand in hand with (physical) motor planning difficulties - but not all kids have this problem. This summer we took MM for an independent speech evaluation - it was 2 hrs and the woman helped us so very much. She does not believe Meghan is apraxic. But Meghan does have really bad strength in her mouth and jaw areas and is unable to articulate her tongue and jaw in accordance (that's not the word I'm thinking of) with each other and therefore cannot produce correct sounds and words. We have tons of strengthening exercises we are doing with her to help her. Blowing bubbles and whistles, different types of straw drinking. Chewing exercises with food, chewy tubes, etc. If you go to the www.talktoolstm.com website you can see a list of therapists who do these evals. It's quite expensive, and unfortunately, ours wasn't covered by insurance but we felt it was something we had to do. I'm sure you've had Eric's hearing checked - but has it been done recently? have they looked for fluid? is there any type of hearing loss? Does he jargon alot - or just say those few words and that's it? Meghan babbles constantly...like she *thinks* she's saying actual paragraphs and telling me stories...just that 80% is unintelligible. I also do alot of reading and flash cards with her...and the Love & Learning series when I remember. I just get her to repeat stuff over and over, and have her name pictures in books and things and around the house. I believe CC's Christopher has a dx of apraxia and there's another little girl here - around 3 or 4, I can't remember who it is right now, who also has the dx. I want to say it's Maggie - but I could be wrong..my brain is like a sieve these days. anyways - let me know if you want the articles. I know how frustrating this speech stuff is....I really thought MM would be so much farther along then she is now. good luck! laurie
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Post by momofrussell on Aug 28, 2004 21:34:53 GMT -5
We have been talking about this on another site too right now. Russell is having a private eval done in a few weeks for some of the same questions as you have Dolly. I have brought up apraxia to Russell's old teacher and she said he didn't have it. I have read Libby Kumin's article too but when I read what some of us, ME included, describe in our kids, I don't think it IS Apraxia. Also, our Ped Neuro said that Apraxia is VERY hard to DX and in a child w/DS that has little or NO speech, it is VERY hard if impossible to DX. Kids need to talk more than are kids to get a good DX. It is also a sequencial thing of sorts... and also saying a word one day and not being able to say it the next. I also have read on more than one board how LOTS of our kids w/DS talked a few words when they were younger and don't now.. but I personally don't think that is Apraxia. And keep in mind that even though kids don't talk.. they ARE usually communicating.. and the words will come later.. pointing, gesturing, eye contact, ect... that is ALL forms of communication, as well as speech.. and the speech part usually comes later. If your child is doing those other things do communicate... I personally think that the speech will get there sooner or later. BUT... Dolly.. can I ask why Eric ONLY gets ST in a group setting??? He should be getting 1:1 Speech Therapy!!!! You should NOT have to go in the summer time and pay for individual therapy for him.. after 3 yrs old, that is the SCHOOL districts responsibility!!!!!!! I think you need to ck into that.... Also.. after being online and reading about kids w/DS and speech for 4 yrs now... we ALL know that speech is delayed JUST like pretty much everything else, when it comes to DS.. BUT... as parents, we tend to think our children SHOULD be doing MORE than they are... (me included).... and usually there isn't a cause for alarm.. it's just our children and who they are. I am constantly reassured by Miss Robin that Russell WILL talk... so I think speech in general will come in time for ALL our kids... At least that is what I am hoping....LOL.... A.
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Post by Chris on Aug 28, 2004 22:09:33 GMT -5
I just went to a workshop session by Libby Kumin at the NDSC convention last weekend. I believe she said that at least 80% (and that is a conservative guess) of kids with Ds have apraxia. Apraxia is treatable and shouldn't be used as an excuse.
A good speech therapist should know techniques to help kids with apraxia. I just purchased Libby Kumin's book, Early Communication Skills for Children with Down Syndrome. I have been too busy to actually sit down and read it but hope to over the Labor Day weekend.
Chris
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Post by momofrussell on Aug 28, 2004 22:48:25 GMT -5
See... I am facinated by that... 80%... I am not saying I don't believe Libby ... but I am really having a hard time with that 80% (the number part of it). I have been reading about this stuff, apraxia, dysarthria, ect.. for a while now.. and have talked to our Ped Neuro, the therapists, done lots of reading on it.. and I am still facinatied that all the info I get(and read) states it is really hard to DX.. but she says 80% probably have it... heck... you sometimes don't know WHO to believe....
I guess sometimes we have to go with our guts too...
It will be interesting to see what Russell's eval comes up with...
A.
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Post by TriciaF on Aug 29, 2004 10:50:23 GMT -5
Thanks for the info guys, I have checked with our State's Disability library and they don't have Sara Johnson's books, so I am going to request that they order them. I meet many parents interested in this topic. Check out libraries near you at the link below. Our state library is free for parents and they mail the books or videos to you with a postage paid return envelope. 129.252.120.227/library/CDR/otherlibraries.htm
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Post by christie on Aug 29, 2004 11:38:05 GMT -5
DOLLY, yes my Christopher was DX with verbal apraxia many years back by 3 different speech therapist, none of which knew each other.
Personally I think apraxia is thrown out there a bit to much, kind of like the "New In thing" but in many cases it is correct.
Thought you might want to check this site out if you haven't already...www.apraxia-kids.org/indexes/indexfaqs.htmlJust want to add, that even with the DX of verbal Apraxia, Chris does not have the BEST speech in the world BUT conitunes to have improvment in this area ;D
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Post by Staci on Aug 29, 2004 12:44:27 GMT -5
Dolly, Aidan is the same way. I'm beginning to get very concerned with his speech, also. He has only a few words...bye, duck, please, thank you (ta tu), mama sometimes. But it's like he is really trying to get words out and they just don't come...then he gets frustrated and I just want to cry. I have not heard of apraxia before...just what is it? I need to look it up. Aidan has 1 on 1 speech 1/2 hr a week, not enough in my book, and in his IEP this year I am requesting more. Who knows if we'll get it. I also don't think his speech therapist works very well with Aidan, but I'm not a good judge. Compared to his old st, she is slacking. Anyway...this is a major concern of mine, too. It makes me so terribly sad that Aidan can't communicate with me more....and I can't remember who said that if he is communicating, the words will come later...but with Aidan, he just ISN'T communicating much at ALL, not with gestures, nothing! So that worries me too! I just don't know what to do anymore. I work with him tons, but he just gets sooooo frustrated Breaks my heart. Staci
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Post by momofrussell on Aug 29, 2004 15:04:02 GMT -5
Stacy, I was the one who mentioned the other forms of communication and speech will come later Does Aiden do sign language or any PECS type things? PECS stands for Picture Exchange Communication System. Like, if there were pics of different foods, Aiden would give you the one he wanted to eat... if he couldn't SAY the word.. or he may point to it. Does Aiden point at things he wants? I would suggest, for you or for anyone in this situation, to try say "signing" and if that doesn't wortk well after a while.. try PECS...and see if your child would respond to any of those other forms of communication... Good luck! A.
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Post by Staci on Aug 29, 2004 16:24:41 GMT -5
Thanks A! I guess I should explain a little bit more. Aidan DOES sign...somewhat. He can sign his needs, like eat, more, drink, music, play, school, etc. So, yes...he IS communicating. I guess I was thinking of the millions of times throughout the day that he throws a fit instead of communicating to me his needs, when I don't know what he wants and he'd rather lash out than try to "tell" me what's up, kwim? I know it's just frustration on his part that he cant communicate how he wants to. I tried a make-shift PECS system, I got a lot of pictures from the internet, etc, and made something for him to communicate with me better, but he tore the heck out of it, destroying all of the pictures, one day when he was angry with me. I got a new digital camera and thought of taking digi pics and printing out pictures of some of his favorite foods and things to do, etc, but am afraid he'd destroy it again. Aidan struggles with getting words out, and he tries so hard sometimes and it can just break your heart...I wish I could help him, but I just am not sure what's next. Thanks for your tips, A! I need to try the PECS thing again! Staci
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Post by momofrussell on Aug 29, 2004 18:19:12 GMT -5
Hey Stacy... Aiden is doing GREAT if he signs all that! Gosh, have him come over to our house, K? Russell doesn't do that stuff yet Another helpful hint... I have PECS here I made.. and I went to Walmart and bought a inexpensive laminator I think it was $10 or something like that.. it really wasn't that much.. you can find them under $20 I do know.. it's a full page one too... so I cut the pics after I print them and then laminate so many a page and cut them out! You might want to try that! It's kinda cool because I can make some for home and school to stay consistant... and I feel like I am in the PECS business LOL A.
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Post by Debi on Aug 29, 2004 18:56:22 GMT -5
A is right about laminating the pics or having the school do it for you. Right now Gabe uses a file folder with pecs pics on it which is laminated and we have had probably the best luck with this over anything else (besides Signing). For example there is an individual PEC or icon for mad/sad/sick/happy and Gabe can point to the "I" and "happy" and communicate. This extends to his daily activities, etc. Staci I KNOW how frustrating this is .. and it MAY be true that Aidan is not quite ready for something like this but I think it worth a try. I know about working tons and tons and the speech not coming .. Gabe really vocalizes so little that I do not know if they could come up with an accurate DX of apraxia. I do not mean to discourage ANYONE and I do continue to see progress in Gabe's speech but I also think some kids with DS have very very delayed speech Keep hanging in there and I also truly believe that it's not at all impossible for there to be real progress in speech for our kids at four and older.
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Post by Staci on Aug 30, 2004 12:25:34 GMT -5
Thanks again, you guys. I guess I shouldn't worry so much and be thankful that Aidan does sign a bit. But it does get very frustrating and makes me very sad sometimes. Why do you think speech is so hard for our kids? Anyway...the laminater idea is a great idea! I didn't know you could get one for so cheap! Thatta way, Aidan couldn't destroy my project as fast...although he'd still probably get the job done. lol Thanks again, guys! And Dolly, I didn't mean to take over your post! I apologize! Staci
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Post by Ericsmomma on Aug 30, 2004 14:39:35 GMT -5
Staci,
No apology necessary...we are all in this together!! I feel much better knowing others are experiencing the same problems...I think I was panicking! I just feel speech is so important, and i forget you need to be EXTREMELY PATIENT with our kids. You guys also gave me some good suggestions that I will try at home. I took Eric to his private speech therapy today and spoke to the therapist again about apraxia and she was very confident that he is not displaying some of the most telling signs. She feels its all relative to having down syndrome. And I sometimes forget that Eric was also a premie...only 31 weeks, so delays are expected. I really appreciate all the support tho....you are a great bunch of people!!....................Love, Dolly
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