Noah’s Courage – Words and More Words

Anybody hungry for a What’s Noah Doing Now update?

Well, for starters, apparently he’s been more cooperative in his PROMPT speech therapy lately.  I can’t tell for sure, because I’ve been sitting out

Sitting out?  Yes, you heard me right.

I know, I know, totally unlike me, right?

Long story.

But I can tell you this:  Noah has added several new words to his vocabulary in the last few weeks.  Most importantly, he has made HUGE progress in being able to access on command all those wonderful sounds he can make.  Before we started PROMPT therapy, I knew Noah could actually form almost all the phonemes, but he just couldn’t do it when he wanted to.  In other words, when we would drill using our Lingraphica Phonemes (free) app https://itunes.apple.com/us/app/smalltalk-phonemes/id384170714?mt=8, Noah could say those sounds.  But later if I gave him a banana and said “say buh,” he often would concentrate, purse his lips and say “puh” or “tuh” or “muh” or even “puh-tuh” and very quickly get frustrated because the sound he had in his head was not the sound that was coming out of his mouth.  When I would repeat “buh,” he would go to a new sound, but it still wouldn’t be “buh.”  If I said “buh, buh, buh, buh,” he often then could say “buh.”  But then go back to banana and have him try to say “buh,” and he would often be unable to.

Very apraxia-ish, eh?

Currently, Noah usually is able to repeat any phoneme I give him on the first or second try, and if he does wind up going down a list of sounds, eventually he is arriving at the right one.  HUGE progress!

Some words that have popped out of my little guy’s mouth lately with prompting (not always pronounced exactly right, but syllables in the right place and main sounds made) – turtle, teeth, cake, bunny, money, candy, boom, and boot.

I’ve also been doing some auditory bombardment with Noah.  I actually don’t have much faith in auditory bombardment in Noah’s case since a huge piece of his issue is oral motor dysfunction, but I have to say I’ve seen him progress greatly over the past few weeks.  I have a sheet of 16 PECs with words like bag, boat, bone, bug, bat, etc.  At first, I just read the words off without even having  him look at the paper.  After a few days of that, I sat him in my lap and used hand-over-hand assistance to have him point to the words as I read them.  Next I said each word and waited for him to say them after me.  As soon as he started resisting, I reverted back to letting him point while I said the words.  Now I say the word and point to it, and he automatically says the word back to me.  So, let’s hear it for auditory bombardment!  (Technically, auditory bombardment uses repetitions of the same words in one session – I did the slacker version – just one but sometimes two runs per session.)  So he can now say about 12 of those 16 words as well.

The big question here is will Noah integrate these new words into daily usage.  “Carryover” is a huge issue in speech therapy, especially in kids with Down syndrome.  It’s great that they can pronounce words on cue, but if those words never make it into their working vocabulary, all that hard work really isn’t doing them any good.  I can report that Noah is using some of these new words.  He is using nana (for banana), teeth, iPad, candy and bear at times without any prompting.  He’s also got some good approximations for “Caelie, Trinity, Abby and Leah.”  I’m probably forgetting a bunch here, but it’s safe to say Noah is still not a very talkative fellow.

My favorite thing that Noah is doing?  He’s been going up to his siblings and tickling them and making a new sound along the lines of “tickle, tickle, tickle.”

Oh, and get this – he’s had about enough of me putting my hands on his face to reinforce the PROMPT tactile cueing he’s getting in therapy.  I make him SOOOO mad.  I think for now I better let Marcus work his PROMPT magic on Tuesdays and I’ll do some hands-off coaching during the other days of the week.

Motor-Speech Disorder Not Otherwise Specified

Not quite apraxia, definitely not dysarthria, it looks like Noah has landed with Motor-Speech Disorder Not Otherwise Specified.  Pure apraxia exists in children without other neurological compromise, and one of the features of apraxia is inconsistent errors.  Obviously, since Noah has Down syndrome he is not without other neurological compromise, and most of Noah’s speech errors are consistent, so we can’t quite land on apraxia.  Motor-Speech Disorder is the umbrella under which apraxia and dysarthria fall under; the NOS is a relatively new addition to the group.

The biggest part of the apraxia dilemma is that there is no official criteria, so a child presenting to one SLP may be diagnosed according to her criteria and not be diagnosed at a different SLP based on her criteria.  This is the kind of stuff that drives a momma whacko.

The good news is that since apraxia is a motor-speech disorder, and since PROMPT is all about addressing oral/motor/speech issues, the fact that Noah is landing in motor-speech disorder NOS versus apraxia means the treatment is the same regardless.  So, I continue to think we’re in the right place as far as treatment goes.

There’s not much literature out there on MSD NOS now; although Marcus (Noah’s SLP) says there is research currently being conducted.  So in time we’ll have more information – I’m fairly confident the research will tell us PROMPT (tactile cueing) is the right road to be on.

As far as Noah’s progress, Marcus says he is doing well.  He is able to produce more accurate sounds and I think his jaw sliding is improving.  Marcus is starting to add concepts like positional words into their sessions, so Noah is getting language as well as speech practice.  I’m so anxious to see carryover from Marcus’ sessions and my work with Noah into his natural language routine.  That is coming so very, very slowly.  In theory, it will happen in time and practice as we continue on with speech therapy.

One bright spot to our week – Noah has started saying “Caelie” and “Leah.”  He has done it a few times on his own without any prompting.  This is a huge distinction in my eyes – being able to mimic a word is great, but it’s not really communication.  Having Noah run towards me shouting “Caelie, Caelie” since he knows we’re going to be meeting her for lunch is definately communication.

I’m so thankful for the little things along the way that show me he is moving foward.

Related articles

• Speech disorder challenging for family (nanaimobulletin.com)
• PROMPT – A New Therapy for Noah (wordsofhisheart.wordpress.com)

PROMPT Therapy – Session 2

Noah had another session with Marcus today. Noah is trying soooo hard to do the things Marcus wants him to do. I have to remind myself that Marcus doesn’t know how far Noah has come, nor can he really tell how difficult all this is for Noah. Part of what Marcus works on with Noah is getting his mouth positioned in exactly the right position for each sound. Then Marcus fine tunes the sound so that Noah’s sound productions sound 100% normal. It’s been amazing to hear some of the sounds and words that come out of Noah’s mouth without any impairment whatsoever. Noah has to work very hard with Marcus to get them out, but they are definitely in there.

I have a couple questions floating around in my mind. One is how much of this will carry over into Noah’s speech outside of therapy. If he can make a good word approximation for, let’s say, go, won’t he choose to make that word approximation that is obviously easier for him than going to the trouble to shape his lips correctly in order to form the word?

I think the answer to this will only come with time. I feel like my hands are tied behind my back because I can’t really replicate the kind of therapy Marcus is doing with Noah at home. I don’t have the know-how. Marcus says in time he will show me things that I can do at home with Noah, but for now the articulation therapy stuff all has to come from Marcus. He says we have a lot of work to do. Every individual sound that Noah is making he makes a compensatory ending sound to that is of equal force. We have to get rid of those compensatory sounds because they affect his intelligibility. He needs to move his jaw less and his lips more. I suppose the bigger feature, the jaw, is easier for him to control than his lips.

I am thrilled that Noah is getting this therapy now, even though it looks like he is going to have to unlearn some of the speech patterns he picked up over the last couple years.

Marcus did say something today at the end of the session that nearly took my breath away. He said something along the lines of if he did diagnose apraxia even when there were other underlying neurological issues, he saw a lot of evidence that would support that diagnosis in Noah. (Can you tell I’m trying really hard not to exaggerate anything?) He is seeing a lot of sequencing issues that are typical of apraxia now that he’s had a couple sessions to get to know Noah. I noticed today that he used some hierarchy approximations that reminded me very much of the Kaufmann apraxia cards Noah has done so well with. It was bittersweet to have my suspicions confirmed, and it just confirmed to me that Marcus is the right person to treat Noah, because he is identifying what I have been seeing for so long. PROMPT therapy is a very effective treatment for apraxia as well as other speech disorders, so at this point the diagnosis is not important – Noah is getting appropriate treatment either way.