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Post by jessjetland on Aug 9, 2007 16:49:40 GMT -5
Does anyone elses child have this? Sam was diagnosed today so any advice, comments, reassurance would be greatly appreciated. Thanks Jess
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Post by Chris too on Aug 9, 2007 21:49:16 GMT -5
It sounds just horrible, doesn't it? I have been assured by two different SLP's that this can be treated - maybe eliminated altogether - successfully. It takes a good therapist though - one that Sam likes. Does he also have some hearing loss?
Chris too
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Post by jessjetland on Aug 10, 2007 8:37:16 GMT -5
They tested his hearing yesterday and it was in the normal range. I feel awful because I knew something was going on but everyone said be patient speech will come in time. Its frustrating because he does close to 200 signs and communicates very well he just doesn't talk and the school was content with that but I'm wasn't so we went to the childrens hospital in Minneapolis and had the best evaluation now I just need to push more speech in school. Does your child have this also? Could you give me some advice please this is the first real road bump we have encountered. Thanks Jess
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Post by momofrussell on Aug 10, 2007 11:14:14 GMT -5
I'd bet the farm that Russell has something else going on, like this... but.. you have to TALK to DX this.. and Russell has NEVER spoken a word! So, they won't give him some speech DX. Crazy I tell ya! But most SLP's should be able to help you with this. Also, this book... www.amazon.com/Early-Communication-Skills-Children-Syndrome/dp/1890627275a lot of parents have and it's by Libby Kumin who does talk about Apraxia and other related speech stuff. You might look into getting this book. Here is a link also that might help... www.apraxia-kids.org/And if you google "apraxia of speech" you come up with lots of things you can read! A.
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Post by jessjetland on Aug 10, 2007 11:33:21 GMT -5
That's is crazy! We are lucky we caught this at 5. Thanks for the info Jess
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Post by momofrussell on Aug 11, 2007 6:48:47 GMT -5
Yes, it may sound crazy but truly it's not...Apraxia is based on speech, and Russell has never had ANY speech...so, in theory, they wouldn't be able to DX this But if you think about a child with AUTISM and possibly Apraxia or even something else going on, that MAY be why they don't speak any words, ya know. So, it's just some circle we go in LOL A.
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Post by Ericsmomma on Aug 11, 2007 8:34:20 GMT -5
Eric was diagnosed by his "summer" speech therapist with Apraxia. But his "school" speech therapist doesn't think its apraxia. She thinks his non-verbalizm(sp?) is from the down syndrome. I tend to agree with the diagnosis of apraxia....he tries so hard to form words...I mean physically struggles with his mouth movements. Its like the brain and the mouth just can't get together! It must be so frustrating for our kids who are non-verbal. The therapist who worked on the apraxia used alot of oral stimulation and manipulation. She is considered alittle "different" in her approach to speech therapy. But I remember going to the NDSC in Chicago a few years ago, and I saw alot of her methods in some of the communication workshops I attended. So who knows....Good Luck!........ p.s. There is a good website by Dr. James McDonald about communication (for any person who is struggling with verbalizing). I'm on the e-mail list and there is alot of good info.
The website is jamesdmacdonald.org
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Post by Jessie on Aug 11, 2007 11:49:25 GMT -5
Dolly - we went through the same thing with Jason's SLP at school - told me flat out he no way had DAS (Developmental Apraxia of Speech). I was sure he did - we had him tested by two different professionals and they both diagonosed him with it - without my asking if that's what the problem is.
As far as therapy, I know it's supposed to be much more strict as far as the environment that the therapy needs to happen in and they need one on one therapy. Since he doesn't get one on one at school very much we still pay for him to have outside therapy.
When we saw Libby Kumin speak a couple of years ago at the NDSS conference I was quite certain that is what was going on with Jason after the way she described it. You could also do a search for Libby Kumin's stuff on the web, she's got quite a bit of material on it.
Jessie
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Post by Ericsmomma on Aug 11, 2007 14:36:39 GMT -5
Jessie, I heard Libby Kumin also...very interesting. I have read some of her articles, and I do agree that there are alot more kids with Down Syndrome who also have apraxia than are diagnosed. Jess, you might want to check her out too...How old is your Sam?
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Post by stefaniedwn on Aug 11, 2007 20:39:25 GMT -5
My son Christopher has apraxia and he's almost 7. We use talk tools, it's a oral motor muscle based therapy. His Speech Therapist outside of school uses it too. She does alot of whistles, chew stick, blowing bubbles and repetition is a big factor. We stopped it and started it back, we could tell a big difference. He does really well if he will move those lips to. Here is the site, if this don't work. I justed googled Talk Tools. www.talktools.net/site/web-content/child_solutions/index.htm
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Post by jessjetland on Aug 12, 2007 12:06:23 GMT -5
Sam turned 5 in June and this diagnosis fits him to a tee. He communicates really well and tries so hard to talk. And he understands so much more, I'm glad we have some answers. Jess
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Post by rickismom on Aug 26, 2007 9:19:40 GMT -5
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Post by kc2 on Sept 16, 2007 21:04:29 GMT -5
We live in Minnesota, too. My Jaime makes sounds but no repetitive "words." She will be seven in November. I have been seeking answers since she was three. I would be so happy if she just said "No!" She uses some signs and body language to express herself. I SO want her to be understood by others and have meaningful interactions. We just went to Gillette Hospital in Minnetonka. We are trying to get an augmentative communication device so that others will understand that she has real thoughts and feelings. Perhaps then she will get more respect as a person...she understands so much more than she can express. She began to read family names at four! Are you going to the Buddy Walk in St. Paul? What a joyful celebration!
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Post by mommygwen on Sept 18, 2007 19:33:11 GMT -5
When Greg was diagnosed with apraxia. I said "NO. He has some words; even if they are consistently mispronounced." I really believe he has dispraxia. But over time.. what ever it is .... He can communicate a few things with words and he uses signs and pointing and anything at all to communicate with those he trusts.
And we keep encouraging him to keep communicating
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Post by Ericsmomma on Sept 18, 2007 21:32:25 GMT -5
Its funny that this thread was brought up again.....I have been so depressed all night because of something that happened with Eric. He is non-verbal, diagnosed with Apraxia too. The last few days, we've noticed he won't walk far...does the "plop", etc. He also kept kicking off his shoes. Today, his teacher called me and said he doesn't seem to feel well...won't do anything...just sitting there. (to be fair, he does have a sinus infection). Well, it turns out, he has a HORRIBLE blister on the back of his heel....his shoes must not be fitting him right. I must have missed seeing it when I gave him his bath. And with it being on the back of his ankle, I didn't see it while putting on his socks. I felt terrible! The poor little guy must have been in pain, but he couldn't tell me! That is the hardest thing about being non-verbal... I pray EVERY night that he will start speaking...and be able to communicate what he's feeling. Its almost more than I can bear....I hope God hears, and heals him. I still have faith that He will bless my little man. It will be a GREAT day then!
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