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Special Needs
Assembly_Reqd
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Speech DX = Dysarthria
Assembly_Reqd
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Nate had a 2 hour speech eval at KKI on Friday. I am still trying to process all that I learned, but the main comment the SLP said was "based on what I am seeing, he will never be a good speaker"
I had always hoped that one day he would just start talking, but I need to get on the reality train. His facial hypoplasia, low tone and probable nerve involvement are going to make the task very, very difficult. 
She also said that his signing will never be the best either simply because of his motor planning difficulties and lack of facial control to create the expressions that are intrinsic to the language.
Because of this and his cognitive abilities, an AAC device was recommended. Eventually his inability to express himself in a way equal to his cognition will start to cause behavior issues which, we already are starting to have. We are going to set up an appointment with their technology advisor to see what kind of systems are available.
Basically, we need to decide if we are going to mainstream or stay at the School for the Deaf. I am pretty sure an AAC device is not something the deaf school will support.
Andplusalso. She recommended that we do an ADOS on him closer to kindie becuase of a few concerning behaviors she noticed during the appointment. (she has about 12 years experience working with kids with ASD) So, something I had crossed off my list is back on again. Good Times.
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Re: Speech DX = Dysarthria
Bleh.
I'm sorry it was a difficult day for you, who knows what will happen in the future or what will be available to help him with his facial tone. So never say never! Do you follow this blog? She uses an ipad with an app that is fairly cheap ( I think it had a court issue, and yadayada but it should be back on the market.) The little girl wasn't good at signing either, but has been doing AMAZING things with the ipad)
https://niederfamily.blogspot.com/
Hugs.
thanks RD. The SLP said that because of Nate's awesome ipad skills (we brought it with so I could talk to the SLP while Nate played) he needs a non-ipad device dedicated to communication.
The good news is that she recognized how smart he is
Thanks for everyone's replies.
I discussed with the SLP my desire to not spend Nate's childhood in speech therapy. She affirmed my thought that we could do tons of therapy to increase muscle tone which would help in speech, but all the oral tone in the world is not gonna help a brain which cannot send the signals down for the mouth to work correctly. I would rather spend the time and resources getting him to be the best reader possible and after that the best writer/keyboarder.
I am pretty sure the deaf school will not support using an ACC device. Our other option in this district that would be able to work with a kid with an AAC device is a school that has children a lot more affected gross motor and behaviorally than Nate. It is my understanding that children who go there get a non-academic diploma. I am just not sure that would be the right place for him. I could totally be kidding myself, I know. I am just so tired of having hopes and then new sh!t pops up to squash them all. I keep telling myself that Nate has surpased everyone's expectations so he will do better than expected here too......
I'm sorry, that's a lot of tough things to hear and tough decisions to make.
I'd still try to push the deaf school on whether there's any way they'd accommodate the device. Maybe they'll surprise you? I'd like to think they would've at some point run across other deaf kiddos with say, limb differences or serious motor issues that would make signing not their optimal communication mode.
And am I understanding that there's not an option being presented to you for ACC in mainstream? Well, crap. It seems like that could well end up being his LRE. I agree that it'd be a really tough call to put him in the non-academic school. From everything you've said, Nate sounds like a capable, bright and charming little guy -- I bet he'll be a whiz with the ACC and maybe with an aide like auntie suggested, I wouldn't put it past him to be tackle mainstream successfully.
OTOH, I could see where it might take, say, a year at the non-academic school to convince the district of his capabilities; which I would guess is best done when he's really young. I'd rather do preschool in that type of setting, to demonstrate his success, with the goal of pushing the district on mainstreaming him with the ACC by kindy or even first, than pushing the mainstreaming right away and having to step back to a higher level of service b/c he turns out to need it for awhile after all.
DD1, 1/5/2008 ~~~ DD2, 3/17/2010
The other part of this issue is that if we plan to mainstream we need to move out to the county. The resources in the city are just not available IMO.
The awesome thing about the school for the deaf is the classes ALL have less than ten kids in them. There is no way Nate would fall through the cracks there. The test scores at the school beat the state averages all the time, so I know they are able to teach kids with challenges other than deafness.
I just keep hearing the SLP's comments about literacy and deaf children. She basically said with Nate's speech disorder, reading will be all the more difficult for him since it is learned phonetically. Supposedly there is some research about not being able to produce sounds hindering the ability to spell and learn to read. I don't know. The more I type this out, the more I think she could have been going all gloom and doom on me....
Yes there is research to show that reading can be more difficult but don't give up! Jon has apraxia and a phonological disorder. When I brought up the lack of phonemic awareness with the district (and the finally listened), they agreed to do things differently. Jon now gets a more structured Wilson-like approach. He's made huge gains from October to now...like in several levels higher. When he started Wilson-like reading he was at a level A in a guided reading level. Now he's in a level D! That's HUGE! There are ways to do it!
Chris has apraxia, dysarthria, and phonological disorders and he is more phonologically sound than Jon. There are ways to manipulate sounds and teach the correct sounds without it being all "skill and drill". Do you have an ipad? He plays a few games on it with rhyming, etc. Chris loves singing and will often rhyme in a sing song way. He will still slur his speech but he is more able to understand the concept *and when is slurring NOT ok in singing :P* Chris also plays a few computer games that help. He wrote his Christmas list.
Hi there,
The SLP strikes me as very negative. I am not saying an ACC device may not be a good option right now, I just bristle any anyone who wants to predict what Nate will be able to do, especially since his doctors haven't even done that! Owen also has dysarthria (and left facial nerve paresis) but no one has told us he wouldn't talk. He has private speech 2x week and gets speech almost every day at his d/hh preschool (for short times - like 20 minute sessions). He has actually improved quite a bit with his articulation. Have you seen any improvement with Nate's speech?
Also, her comment about deafness and literacy pisses me off, since there are several visual phonics systems, including cued speech, and because a lack of literacy in deaf children is often tied to how involved his or her parents are in the child's education. You are a very involved and educated mother, and that is a huge bonus in Nate's English literacy column.
does Nate see a craniofacial team?
We started speech in September 2011 at age 21 months. REEL-3 speech assessment put him at 13 months receptive and 9 months expressive
June 2012 (30months) REEL-3 speech test put him at 29 months expressive and 12 months receptive
August 2012 at age for receptive but still at 12 months receptive. We were approved for 2 -30 minute sessions per week.
He has maybe 15 words he can say and maybe 3 of those others can decipher. All of his words involve either just a vowel or a vowel and one constanant either a hard /c/, /g/ as in "good", /h/ as in 'hi', /m/ and an /n/ is emerging.
Just this week he has started to sing a bit of a song with me that I have been trying to get him to do since last summer the line of the song is "Elbow, Elbow, Eh, eh, eh" he said "bo, bo, eh, eh, eh" It is an ABC song using all the sounds each letter makes.
It is really SLOOWWW going.
No. Does Owen?? If I didn't know better, I would diagnose Nate with Moebius Syndrome. I have been tempted to reach out to a Moebius geneticist I found at Hopkins just to see what info she could bring to the table. She could be interested in Nate due the the unique nature of his deletions....**shrugs**
I am not sure I could convince DH to add craniofacial to our list of specialists. The neuro wants us to see Endo for growth and a Hand specialist regarding Nate's adducted thumbs.....On the other hand, I would rather hit up all of these specialists while he is too young to remember our focus on everything that is "wrong" with him.
Thanks for all your input. I was hoping you would post because I thought one of your boys had a dysarthria dx too!
We have an ipad and I am sure we will be adding some speech stuff to it.
I recorded Nate's last home speech session and he keeps watching the video and trying to do the sounds our EI SLP was working on that day. I am all for it. A speech session and practice Mommy doesn't have to do too!
Owen has left facial nerve paresis; does Nate have bilateral?
He doesn't have problems eating, right?
I think he has stuff going on on both sides. On the left side he does not have much movment around the mouth area, but he does have expression in the eyebrows. His " raised eyebrows " look is more of a single eyebrow lift. On the right side, he has a better smile and even a bit of a smile line/dimple in his cheek, but no real expression above the check bones. His cry is what I would call a popeye cry. The mouth is open lopsided and the left eye is winked while the right eye is open.
We did get a good answer from the slp regarding his food stuffing. What I thought was sensory is more related to the paresis. He can manage bigger chunks of food in his mouth better than smaller pieces that the tongue has to manipulate more to chew. Based on the types of food he does not enjoy, like chips and popcorn, this makes total sense. I couldn't figure out why a kid who never took a binkie or even a teether would all of a sudden need sensory imput from food...Nate is an awesome eater!
ETA: pic of the popeye cry