Wednesday, April 6, 2011

Vocalization Frustration Part II

Back in August, I blogged about my frustration with attempting to get Alanna to speak (and when I say my frustration, I imagine hers is even worse).  We were pumped about seeing our new speech-language pathologist.  The good news is, she is truly excellent, probably the best speech-language pathologist we have ever seen.

Did PROMPT work?  Yes, it did work.  She was able to get Alanna to learn new words, like "on", "open", "ball", "more".  Alanna was paying attention, clearly motivated, clearly understanding speech was expected, but she just couldn't get her mouth to move in the right way to make the right sounds.  After hours of therapy we did get her mouth to move in the right way, but she had difficulty switching (say from an open mouth for open to a closed mouth for more).  Open and on were good, ball was coming, bubbles had a good approximation, but "more" was "open" and then "buh".  Working on "more" turned everything into "mama".  So it appears we are back to the beginning again.

Alanna's recurrent pattern is always to get to five or six words and then as new words are learned, she loses the ability to say the words she knew before because she seemingly no longer can make the sound properly.

What's the verdict?  The speech-language pathologist has told me that the inability to make proper sounds and switch between sounds is typical of speech apraxia, but that "losing" words once learned is not.  Regression is more typical of autism, but usually if there is a regression it is more global and not specific to one area, due to seizures or major life changes.

We will try for several more weeks to see if this pattern continues.  If so, then we will discontinue speech therapy because it is expensive and is not breaking the cycle.

I used to have great hope Alanna would be able to use speech as a primary form of communication, but as time passes, I have to admit that I am less hopeful.  It breaks my heart.


  1. Sam has the very same problem. He loses words as he gains new ones. He loses sounds as he masters new ones. I stopped speech last summer. His school is starting to purchase ipads as augmetative communication devices. He doesn't use one yet but some of the kids are doing REALLY well with them

  2. Out of curiosity (and I hope you don't mind me asking), why do you think your daughter is losing words? Is it that she forgets the word or that she tries to say that word but is unable to make the sounds? It seems like you are saying the sounds are lost but not the words?

    The reason that I ask is that we have heard words come and apparently go in my older daughters. Then, months later, we will hear the same work reappear out of nowhere and get used appropriately. Now, we don't have the appraxia to deal with but the do have articulation and pronunciation problems and a lot of the words that they do have are approximations.

    But, the important part is that they seem to hold onto the meanings of the words even though they can't always say or use them. We have seen them use words on an AAC device that we have been trying that we didn't even know that they knew. And, when they use the word on the device, they are able to sometimes say that word.

    It seems (at least for them) that the problem is that they need something to make the word concrete for them - some physical picture, sign, or gesture that allows them to "remember" how to say the word. So when we pair the word with some picture, sign, object, gesture, or part of the AAC device they seem to retain it much more readily.

  3. Been there.... it stops... honestly. We noticed it stopped when my youngest son finally put together words, pecs and signs... that was the only "perk" to the disaster AKA IBI that lasted 8mths before they were removed... very ugly.

    Once he finally realized that things had names, he learned what they were. Also, at 9 we are finally getting functional speech. Not mands... speech. Joint attention, conversation, answering questions... speech. It is fragile, it is not consistant btwn everyone in his sphere... those he trusts the most, are the one's he speaks to the most... but it's coming. Which makes putting him in a self contained, multiple LD, low behaviour classroom this year... worth it. He's the first severely autistic child they've ever had in it.

    The "powers that be" claim that if they don't learn it all before the age of 5 they will never learn. That is the biggest lie you will ever hear. The next biggest lie is that their IQ score = how smart they are. My 9yr old's score was in the 60's a year ago. We filed it under "ok" and nobody on his team cares about it... not one person.

    My 11yr old with NLD caught up this year and is getting A's and B's in Math/English. Not bad for a child that had to learn it as a second language. My 9yr old is learning to type his thoughts onto the computer, reads and spells at gr 4 and has a speech level of a 2 to 3 yr old.

    We are on the ACS waitlist. They told us he has all the words and since he has the ability to take things he hears - computer, books, tv - and turn them into functional speech (7 to 9 yr old level for NT children) the reason we don't have age 2's ability to answer wh q's is that he doesn't know how to build the answers.

    That... is our #1 goal at this time.

  4. @MJ: I am pretty certain Alanna knows the words but is just unable to make the sounds. Often her mouth is not even close to being in the right position to make a certain word (try saying open with your mouth closed).

    She knows what she wants to say and I am pretty sure she knows what she is trying to say, but can't get her mouth to do what she wants it to do.