the change (OT)

Last summer, we took a three week adventure to The John Tracy Clinic. Besides hearing phenomenal stories about it, we wanted to get an outsider's opinion on Aiden, as he just wasn't getting those thoughts into words, and words into sentences. Some of our team at the time said he was fine and he'll get there, some said they couldn't put a finger on what was going on but knew something was off, some mentioned apraxia. We had no clear answers and not a clue where to turn. So we turned to JTC.

last year, there's no way Aiden could've worn flip flops, much less dodge his sister's water gun aim; here, he's running in flip flops while yelling, "STOP IT KAILYN", and proceeds to jump over the hose to reclaim his water gun.

While in California, we learned SO MUCH, but the two biggest things I walked away knowing that changed Aiden's journey are:

1. PHONEMIC MAPPING - read more HERE, and HERE
2. PRAXIS/MOTOR PLANNING/SENSORY PROCESSING challenges that were affecting his spontaneous expressive language (among other things). I write about this HERE and pretty much sum it all up HERE.

Although his mappings weren't completely off, the phonemic mappings definitely helped us know he's hearing all sounds and we went from a good map to a great map - big difference. The identification of his praxis challenges made me call and get on a waiting list at a specialized OT clinic before even leaving California. 

Praxis? Motor planning? sensory processing disorder? I still get confused about them all, how they're related and how they're different. They can go hand in hand or not. Aiden has never been officially diagnosed with any certain medical term, but definitely has "tendencies" and challenges of them. So here's my best stab at explaining it (and I am in no way a professional OT, this is just from all my reading and notes taken at Aiden's OT):

What is praxis?

The ability to quickly and efficiently take in sensory information, process it, and respond. It includes, IDEATION (planning the idea in the mind); MOTOR PLANNING (making a plan for the action), and EXECUTION (doing the activity). Different praxis challenges can include apraxia/dyspraxia (both deal with difficulty in motor planning); ataxia (loss of coordination of the muscles); and more. Any of these can be mild to severe.

What is sensory processing disorder (spd)

Sensory processing (or integration) is how our nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. SPD is when these messages do not get organized into appropriate responses, which creates challenges in performing everyday tasks (including speaking and balance). Children with SPD often have difficulty with varying motor skills and other everyday skills which can lead to social isolation.

NOTE - there are SEVEN senses that can be affected - not just vision, auditory, taste, tactile, and olfactory, BUT also, the sense of movement (vestibular system) and the positional sense (proprioception). Aiden has definite disconnects in his vestibular and proprioceptive world, along with challenges having all his senses work as one as they should. And when any of these senses aren't "working together as a team", the child (and the world around him) seems out of sync.

A. Jean Ayres, Ph.D., said it best in her book, Sensory Integration and the Child, 

"Good sensory processing enables all the impulses to flow freely and reach their destination quickly. Sensory integrative dysfunction is sort of a 'traffic jam' in the brain. Some bits of sensory information get 'tied up in traffic' and certain parts of the brain do not get the sensory information they need to do their jobs." (Ayres, p. 51)

So how has all this affected Aiden and what has OT done to help?

First, it was clear our lil' dude's environment was out of sync - both in motor planning, execution, and sensory. For example:

• On off balance days his speech was greatly diminished.
• Some days Aiden would say clear 4-5 word sentences (mainly those that were repetitive to him like, "I want milk please"), others his speech was very jumbled unless speaking in one to two word sentences, and sometimes we couldn't understand him at all.
• Speech involves motor planning of many different muscles and breath control - Aiden had (and still has) difficulty coordinating these two to work together - especially with multi-syllabic words and sentences longer than 3-4 words. 
• Aiden was the kid who played alone, at a table doing puzzles or building with blocks (something stationary and away from the crowd), while all the other kids were running around dressing up, pushing trucks along the floor, etc. It was almost as if it was "too much" for him to handle - visually, gross motor, noise, proprioceptive, and balance wise ... I'd watch this from the two way mirror at JTC ... and it broke my heart.
• Aiden had difficulty performing two different sensory tasks, for example, walking across a set of six balance buckets while talking or following a simple direction, standing still on a simple piece of material to catch a ball, balancing himself while sitting on a peanut ball or moving swing while throwing a ball or picking something up.
• It takes a lot of input for things to register - his muscles need extra input to know where they're at, to know what to do to execute. Aiden does not talk if his actions are too sedentary, it's almost as if he needs to move - to run, to push/pull heavy things, to jump, to swing - to get all the wheels in his brain to work together to produce speech and much more. At his old school, he was having more off balance days than usual, he was not speaking that much, and I attribute this to the classroom way of more "sitting and doing", rather than "moving and doing".
• He wasn't crossing mid-line (reaching across the body with either arms or legs), which is a very important prerequisite for appropriate development of various motor and cognitive skills. He still doesn't have a hand preference, which is not uncommon though with kids with sensory issues.

I can't speak enough of how much Aiden has grown from this therapy. Nine months ago, I walked into our first OT session with Miss Amie. That same day I knew we found our miracle worker and ever since she has been magic. She works with Aiden and doesn't let him stop, doesn't let him fail. She works his sensory systems to train them to work together - heavy lifting or spinning to get his motors moving; obstacle courses that involve a combination of climbing, jumping, visual tracking, listening to directions, balancing, swinging, etc. ALL THE WHILE PROVIDING AUDITORY INPUT and demanding verbal responses from Aiden. She makes him speak and does not go on until she gets a clear answer while he's performing some other demanding task.

And here's what we have received:

• 9 MTHS AGO: Aiden was rarely crossing mid-line; TODAY: No problems 
• 9 MTHS AGO: 2-3 words per sentence, speech was slurred/choppy; TODAY: 5-7 (sometimes more) words per sentence, words definitely more crisp and understandable (although he still can have his off days).
• 9 MTHS AGO: Aiden couldn't stand on one balance bucket without holding onto someone's finger; TODAY: he can walk across six without falling off AND even stop, keep his balance, bend over to pick up a toy on the floor (after listening to a verbal direction), stand back up, and keep on going!
• 9 MTHS AGO: Aiden did not like moving objects - such as the swing at the park; TODAY: He not only loves to swing, but he is balancing himself on a moving object, while visually tracking Amie's hand, to grab "whatever it is" she is holding, then throwing it into a basket in a completely different location. THIS.IS.HUGE.
• 9 MTHS AGO: Aiden could barely walk up the curb without holding onto my hand and he definitely wouldn't walk down our two front steps alone. TODAY: Aiden is jumping two feet from the top step over the bottom step and landing without falling.
• 9 MTHS AGO: When Aiden tried to jump, his feet really didn't leave the ground. TODAY: He HOPS and GALLOPS and JUMPS in nearly every step he takes.
• 9 MTHS AGO: Aiden rarely initiated peer play, rarely talked to peers, and my heart broke that he may be the loner child; TODAY: Aiden is the one approaching kids at the park and yelling, "HEY BOY! C'MON LET'S PLAY!"

I even see a difference in his pain tolerance. While he still has a high one, I definitely see that pain registers quicker than it used to. Aiden is still uneasy on bumpy surfaces and can still have off balance days. He has EVA and I believe that his off-balance days are going to be something he'll learn to compensate for.

We still have a ways to go, and not sure when the end to OT will be, but with our "amazing Miss Amie", along with our other recent changes (school and therapy), we've found our Yellow Brick Road!

and that alone right there, gives me tears.

the orange m&m

We've been working very hard at some certain sounds Aiden has difficulty with - such as /w/, /f/, /n/, /p/ and /sh/. He's using them, a lot of times pretty clearly, but still has some challenges as they can sound weak or jumbled depending on placement (beginning, middle, end) and/or with certain sounds combined with them (especially if /oo/ or /ow/ follow the consonant) - oh, and he's three.

The one that is SO difficult for him is that dreaded /f/. FUdge. It's so funny too, since his one tooth was pulled, he walks around with the other tooth over his bottom lip all.the.time, which you think would be great for producing that hard yucky /f/ sound, but nope, he blows out of his nose instead of his mouth and it comes out as a nasally, lot of air through nose /p/. He had it for awhile, and sometimes still does, so either we're trying too hard, or it's time for another mapping. (which we have in a few days since he's started dropping endings and sounding a little more slurry than usual).

We always start with the sound alone (for ex. /w/), do some syllable play with it (wa, wo, we, wi, woo, wow, wa-wo, we-wa, wi-woo etc. which btw is GREAT for his minor apraxia/motor planning challenges too), use the sound in isolated words (wagon, white, witch), two words together (white witch, where's Waldo), and then in short sentences (which has been GREAT for helping him expand his sentence, voice control, and clarity of speech in sentences). Each step depends on the success of the previous step in order to move on so he doesn't get frustrated and always feels successful. 

So of course, I've been video taping to watch his progress. 

(OH, 

if you're like me, when you're trying to come up with words on your own that begin with a certain letter, you can never think of more than TWO. ok, maybe three. But then to think of words where the sound is in the middle or end - whatever - I spend more time thinking than Aiden does practicing. Plus, who doesn't like easy, new, and FREE ideas, especially when it comes to something boring like practicing articulation. So of course I'm sharing ...

THIS site, with all kinds of WORKSHEETS, that I stumbled across the other day. she even posts tips on how to work with a certain sound. 

love it. and so does Aiden.

better yet, just saw this post. IT'S ON THE ipad! speech therapy on the go. 

oh, and m&ms are always helpful too.
(gotta say, he's silly throughout - especially in the end with that dang orange m&m near the end. love this kid.)

Out of the Booth Audiology

Here is a more detailed account of our recent "out of the booth" experience at the audiologist's.

In the past, Aiden's mapping appointments always started with him in the soundbooth - test lings, create audiogram based on his conditioned responses using pure tone audiometry (or sometimes warble tones), measure speech recognition (repeat for each CI separately, then together). Then head back to the audiologist's office and adjust CI programs based on new audiogram and parental feedback of ling checks, voice quality, spontaneous language use etc.

This appointment went more like this (I'll do my best to explain it, but let me preface by saying I am by far not a professional audiologist. I know enough about mapping to be dangerous and explain it to the best of my knowledge.)

• FIRST - changed maps based on Neural Response Telemetry. (background if you'd like: Aiden's implanted electrode arrays each contain 22 electrodes, each one delivering different loudness and pitch of sound to his auditory nerve then onto the brain. The NRT provides an objective measure of how his auditory nerve responds to the electrical stimulation produced by each electrode. This provides the audiologist with initial programming parameters.)
• I had learned from another audiologist that they typically see a common shape on the maps based on NRTs.
• Aiden's "old" map on his right CI was very similar to this said "commonality", and to his NRT.  There were no neural responses in the high frequencies (in which she calmed me down after a brief mom freakout and helped me understand that just because there isn't a response to some electrodes, doesn't mean he isn't hearing the sound - in fact on his right CI, there were only THREE responses out of the 22 electrodes. She reassured me that this in not uncommon and that older CI patients reiterate they still hear  sounds where electrodes show no response). So, based on our personal observations and his audiogram from JTC (30db@4000hz), she increased high frequencies too.
• For his left CI, there were more drastic differences in his old map vs. this commonality AND his NRT results, especially in the low and high frequencies. We did see a lot more responses across all frequencies from this NRT, which went hand in hand with this "common" map shape I was told about. His lows here were very sporadic and were made more "fluid" and the mid and high frequencies were both increased.

• AFTER, changes were made based on NRTs, we talked to Aiden about things sounding "too soft", "good" (thumbs up!), or "too loud", and we showed him a picture of monkeys demonstrating each. She would then bump up his levels, across the board, little by little. I was very apprehensive of this, as he is only 3 1/2 years old, and wasn't quite sure he completely understood what kind of response we were looking for. Low and behold, he seemed to be pretty on target instead of all over the board with just "choosing" whichever monkey. After a couple increases, he would immediately cover his ears and say, "it's too loud". Very small changes were made based on this. 
• FINALLY, she tested him based on his phonemic awareness that ranged across all the frequencies for each CI. For example, he had to imitate back /p/, /t/, /k/, /d/, /g/, /b/, /m/, /n/, /f/, /s/, /sh/, /v/, /z/, /ch/, /dg (j)/, /y/, /l/, /r/, /h/, /l/ and all long and short vowel sounds, including diphthongs. (all the sounds noted are listed as you and I know them - not as a speech pathologist writes them ; ) )
• With his right CI, he repeatedly imitated /k/ as /p/, /f/ as /s/, and /g/ as /d/. After making a few adjustments, he said each one pretty darn perfect.
• With his left CI, he repeatedly imitated /f/ as /p/, /g/ as /d/, /p/ as /t/, /k/ as /t/, and he was very closed mouth with the short i and e. Again, after adjustments, he was saying each one beautifully!
• /v/ was hard on both sides and we couldn't get him to imitate it, but at one point he was pretty close. We also could not get him to reproduce /n/ for the life of us (kept reproducing it as /m/; they overlap each other on the speech banana), but he does not seem to confuse them in his speech (besides the word "milk", which he says "nilk"), which we'll keep watching.

After all this, we would ultimately bring him to the soundbooth, but after two plus hours, he was spent. We are heading back in two weeks for a new audiogram. I can say though, that the days following, I'd sporadically ask him how things sounded, and before I could get out the choices of too soft, good, or too loud, he'd throw up his thumb and tell me, "good!"

During the whole appointment, my little monkey entertained. What cracks me up is he knows he's funny and laughs at himself. A few times throughout, his audiologist would cover her mouth and tell him to listen, and before she could get anything out, he'd yell out, "ah, oo, ee, s, sh, m" then laugh and laugh. Or she'd say a letter sound, and instead of imitating it back, he'd tell her what letter it was, then laugh some more.

Little stinker.

After four days with his new map, I still see very good changes in his speech, but he still sounds very jumbled when putting more than two or three words together. Even though his technology definitely needed a good tune-up, he still has motor planning challenges, which is why we will continue on strong with OT. As Aiden strengthens and overcomes his praxis challenges, we should also start to see an increase in his conversational speech. I think this is going to be a GREAT year for him!

Another Hurdle?

Okay, so I got up extra early the other morning, before the troops, and started to summarize the last two weeks at JTC, but never finished. I was trying to say too much at once.

Now I'm back. and while I want (and will) summarize this completely amazing trip as much as possible, I have to write from the heart. Because that's how I write best. Before I give out all these amazing tips and lessons learned, before I write about all the extremely phenomenal life long friendships I've made, before I tell you ALL I've learned, I have to get out what's on my heart.

It was a very hard week for me. I'm going to be very upfront. I know I shouldn't compare my kid. I know I shouldn't me sad for my child when I look at how amazing another child is doing - but guess what? I have. I do. and of course I am SOOOO happy to see these children excelling and speaking. OF COURSE I am!

but in my mommy heart, I also know there's something else going on, and before this trip, had no clue where to turn. my heart hurt and my tears flowed. Because now, I'm getting a clue.

We came to John Tracy hoping for yet another opinion on why Aiden's spoken language seems to be delayed. They (meaning the statistics) say (something like this - not exact numbers, but close), "when your child has a receptive vocabulary of x amount of words, they will start saying their first words. When that receptive vocabulary grows to x amount, they will start putting two and three words together. etc. etc." (I have the statistics at home, so I can't quote them directly). Aiden's receptive vocabulary is HUGE! His expressive vocabulary is HUGE - as long as he is saying the words in isolation or within a two to three word sentence. He is GREAT at repeating and imitating a model, but when he tries to spontaneously put words together, it is a jumbled mess. I've been told, "he's a boy". I've been told, "it's just taking him a bit longer". I've been told, "he says PERFECT blends (i.e. SNake, and TRain, etc) and it will come when it comes". I've been told "he can say a four/five word sentences", yet he's been modeling that specific sentence for months, and it's probably one of a few.

I'm watching kids here, who were implanted a whole year after Aiden, who are answering "W type" questions. I'm watching kids here talk into the microphone each morning and say a pretty damn good, "Good morning friends." When Aiden says it, you can barely understand it because it's all jumbled together ... more like, "goo-orng". seriously. Aiden is a great imitator. He has a HUGE receptive and expressive vocabulary list. Aiden is SO ON cognitively, but again, something's missing.

Last week we had our one hour speech therapy here at JTC (with a cert. AVT). We played "Guess what's in the bag" and showed him the three categories of items. He knows farm animals, food, and clothes categories ... he knows them. Yet, when something was described to him, he could not vocalize what he needed to.

Something is missing. After one particular morning of listening to Aiden speak in class, I met with his SLT, holding back tears. I had just witnessed a situation of Aiden putting multiple words (like 3 to 4) together, spontaneously with a classmate and didn't understand him. Simple words he knew. She asked me what my heart felt, and I told her, I felt something else was going on. She suggested getting him tested for Apraxia. She thought we should get other avenues tested and gave me the tools to find a good center in our area.

BUT ...

It just so happens that at the same time as we're here, that an AG Bell conference was happening in DC and one of Aiden's first AV therapists attended a class about CI kids who are not performing as well as expected. She knew our story. The class talked about these kids being misdiagnosed with Apraxia when in fact, it had to do with their maps. And she found me a local CA resource to provide another opinion.

So, here are our next steps:

• We're calling this audiologist in the San Diego area, who specializes in similar situations to get a second (or truly third) opinion on Aiden's program ... because without the right program, a child will not move forward.
• We're checking out, with the help of Aiden's SLT here at JTC, where we can get him tested for Apraxia or similar disorders in our area.

What does our future possibly look like?

• All depends on the above two factors. The audiologist at JTC believes he has a good map. They say it could be better, but it's good. If we find out that his map is good from yet another third opinion, we have another evaluation on our hands.
• If he tests to have apraxia, we have yet another therapy on our hands. and a therapy that is almost like starting from day one. BUT we will move forward. I will not stop.

I can truly say I'm spent. Of course I will do ANYTHING to get my child the help he needs. I will do ANYTHING to get him there. I'm not ready for this, yet I believe I've known, and have been preparing myself for the next step no matter what it may be. So I have to be there. No matter what the outcome may be. I have to be ready. yet, it tears me up inside.

So my questions to you:

• Do you have a child with CIs and Apraxia (or something similar)?
• What is the therapy like?
• Do you have a child who gets it receptively and cognitively, and somewhat expressively, but couldn't put the words together because of a bad map and finally figured out what the problem was?

I have to find answers. For me, but even more so, for my boy. I will not give up.