Apraxia with Downs Syndrome?

[LadyEMT]

My sister's baby (well, she will be 3 this Oct...we still call her a baby!) has DS, albeit a "mild" case. She began to talk and have words, etc, at the age you'd expect. Then, about a year ago, she suddenly STOPPED using all the words she'd learned.

She has NO trouble communicating, (we say she uses telepathy!)and she is being taught ASL; she knows MANY signs and uses them appropriately and often, and sometimes in surprisingly humorous ways, lol.

We could just NOT figure out why all of a sudden she STOPPED saying WORDS (book, duck, quack, moo, dada, bye bye, and many more...). She will mimic us, and "say" the alphabet when we prompt her (she just utters,"AH" for every letter, but you can see he TRYING to form B and P, etc.).

Then, yesterday her speech therapist thought of Apraxia. When we looked it up, BINGO.

Does anyone have experience with this? We are very blessed with this adorable, STUBBORN, funny, sweet baby. This really seems like a small thing to overcome, and despite reading alot about it online, I would like to know if anyone here has any first hand knowledge of it.

BTW, this little kid has been to WDW at least 8 times in her life and she is only 2.5, lol. Her parents are Disney nuts and I chuckle to my self when I read posts about,"Can we do Disney with an infant/one year old/18 month old?". Her first visit was 6 weeks. She is an old hand at WDW. Our next trip is slated for Sept, then again in Nov, and to be honest, I can't imagine going to WDW without Ava!

Thanks, R

 

[afnaechiquita]

My younger brother has DS and Apraxia. I was too young to remember really when he was diagnosed with Apraxia, but I can tell you he's 14 now and his favorite phrases are "go away" "stop talking" and "leave me alone," and all my mom can say is "So many years of speech therapy and this is what I get"

My brother actually talks a lot, it's just he never says words the same way twice and it's very hard to work with getting him to say words properly. Sign language helps a LOT. He uses signs for basic things - foods, books, basically anything he might want or want to do - while trying to say them at the same time and it's really helpful. He learned signs young, too, so since your niece is already learning them that's already a big step in the right direction

 

[LadyEMT]

Thank you! She was talking, and then just DIDN'T. She definitely knows how to tell people to STOP! in sign language, lol. And she just has that way of looking at you where you just know you are not on her good side....

This baby has ALWAYS loved books and will bring you books and more books to read to her.

Here she is at the Muppets fountain in MGM/HS (she LOVES Muppets take Manhatten, we have that movie memorized now, since every time we drive to Orlando, we have to watch it:

 

[LadyEMT]

Here she is again, as Tink:

 

[afnaechiquita]

She's adorable!

My brother loves books, too. He's pretty exclusive to Dr. Seuss though. Thanks to early occupational therapy where he practiced ripping paper to work on his motor skills, he has a very serious obsessive compulsive habit with ripping out the pages of his books and doing different things with them. We accidentally left his backpack with a full set of ripped pages in security on our way down to our last WDW trip, and when we came back and went to lost and found they said that they couldn't figure out why someone would want a bunch of ripped pages

Anyway, reading definitely helps with speech as well. My brother will rattle off Green Eggs and Ham without the book even being around, and he's definitely improved with it over the years. Just remember she'll always be improving!

 

[ecki]

Kayla had Down syndrome and lost 50 words and a dozen signs between the ages of 2 and 3. She was diagnosed with autism (of course, she also has alot of other "autistic" symptoms).

Her neurologist also checked for Landau-Kleffner Syndrome, which is a very rare syndrome where the person just stops talking. She had to do a 24 hour EEG for that.

We've always been told that apraxia was tricky to definitively diagnosed. We've discussed it with our speech therapist, but Kayla has so much other stuff going on they just aren't sure.

 

[LadyEMT]

Thanks! So far Ava has not been officially diagnosed with a REASON why she lost her words but apraxia is the first thing the therapist thought of. She does not have any of the symptoms of autism. Just would like to know why she no longer talks, and what we can do to help, you know?

ETA: Love both of your avatars!

 

[minkydog]

Kayla had Down syndrome and lost 50 words and a dozen signs between the ages of 2 and 3. She was diagnosed with autism (of course, she also has alot of other "autistic" symptoms).

.

Christian did the same thing. Up to the age of 2 he had developed combinations of words and signs for about 20 things, including the names of his family. In a matter of a few months he lost it all. It has taken years to gradually bring back some words. He just turned 13 and Christian now has a working vocabulary of less than 10 words & signs--"out", "cold", "off" , "hot" ,"uh-oh", "eat", drink", "more". Unfortunately, he has no word for Dad or John(big brother), and rarely says his word for Mom ("Om-om-om-om"). However, you just let him fall down and get hurt--he can shout "Eleni" (big sister) at the top of his lungs

 

[SandrainNC]

She is adorable!!!!!! My son is 7 and also has DS. They say he has verbal apraxia also. He has really never vocalized a lot. He said "mama" at 1.5 and then that was it. When he was almost 6 he started trying again, but he really has very few consonant sounds. If I say "ball", he will say something that starts with an "m" sound instead and look so proud. Pizza is "m-ah". Daddy is "aaah-oooo". So he is trying, but the sounds just don't come out right. He gets the number of syllables right too. And he is consistent with what he says. Just a problem with those sounds. He does use sign language to get his points across though. I have ordered something called the Kaufman Kit #1 that is supposed to help with apraxia, but they aren't here yet. Others have had success with the kit. They are so expensive though! Makes me mad how much they charge for children (and adults) with special needs because they know they can. But I want to try them to see if they will help him.

Sandra

 

[belle&beast]

She is adorable!!!!!! My son is 7 and also has DS. They say he has verbal apraxia also. He has really never vocalized a lot. He said "mama" at 1.5 and then that was it. When he was almost 6 he started trying again, but he really has very few consonant sounds. If I say "ball", he will say something that starts with an "m" sound instead and look so proud. Pizza is "m-ah". Daddy is "aaah-oooo". So he is trying, but the sounds just don't come out right. He gets the number of syllables right too. And he is consistent with what he says. Just a problem with those sounds. He does use sign language to get his points across though. I have ordered something called the Kaufman Kit #1 that is supposed to help with apraxia, but they aren't here yet. Others have had success with the kit. They are so expensive though! Makes me mad how much they charge for children (and adults) with special needs because they know they can. But I want to try them to see if they will help him.

Sandra

I am a preschool SLP and I use the Kaufman cards with my kiddos. I have found that the older kids really do great, but when it comes to 3 year olds, they just aren't ready for drill therapy and I try to incorporate the sound play into their play.

 

[SandrainNC]

Thank you! Ryan is 7 so we should be good to go!

Sandra

 

[ecki]

I am a preschool SLP and I use the Kaufman cards with my kiddos. I have found that the older kids really do great, but when it comes to 3 year olds, they just aren't ready for drill therapy and I try to incorporate the sound play into their play.

Yep, Kayla just turned 4 and her SLP and ABA teacher tried to incorporate the Kaufman cards into her Discrete Trial Teaching. No luck there.

For now we've given up on trying to get Kayla to talk or sign and are (finally!) concentrating on PECS.

 

[Kim in PA]

My twins both had significant verbal apraxia - speech therapy 3x's a week for 7 years. They do not have down syndrome, just alot of speech / language issues. I would recomend making sure you have a private speech pathologist who specializes in apraxia as not all SLPs know how to treat it. Also be sure he /she is masters level with CCC. I teach special education and have taught many children with DS over the past 24 years. Love the pics - they are all adorable!

I am on this board for my youngest who has a number of special needs including spina bifida (walks without assistance) PDD-NOS (autism spectrum), failure to thrive, and neurogenic bladder. She also has a MicKey button after Nissan fundiplication surgery for GERD