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.

Two Great Articles on Hearing Aids

Even though it's a distant memory of having to put hearing aids on Aiden, I have been in contact with a lot of families recently who are just starting their journey and currently in a world of "FEEDBACK". Leah, a dear friend of mine whose sweet little Nolan has hearing loss and wears bilateral hearing aids, is an amazing advocate and knowledge bank on hearing loss (and many other avenues). She is also the author of SAY WHAT?.

Unfortunately, (and sadly) a lot of insurance companies do not cover hearing aids. This first article discusses different programs families can look into to help pay for them plus a lot of other great information. So even if your child already has hearing aids, still check it out.

http://leahlefler.hubpages.com/hub/Programs-to-Help-Families-Pay-for-a-Childs-Hearing-Aid

Her next article is a great video tutorial where Leah does an amazing job discussing different ways you can test your child's hearing aids to make sure they are working properly through the Ling 6 sound test. THIS is another great page talking about the Ling 6.

http://leahlefler.hubpages.com/video/How-to-Put-in-a-Childs-Hearing-Aid

Wow. Did that video bring me back. Otoease, feedback, checking the ling 6 with a hearing aid stethoscope. And for those of you who are on a hearing aid trial and know your child will most likely be getting cochlear implants, it is still so important to go through all this. One, you never know what your child is hearing, and two, even if your child doesn't hear the lings, it prepares you and your child for the daily listening checks and starts introducing them to the Ling 6. This is the same listening check we use every single day to make sure Aiden is hearing what he is supposed to through his cochlear implants. If he has trouble repeating one or more Lings back, it's a good indicator he may need a new map/program.

in which something breaks

Aiden's collarbone that is. Yep, our first broken bone in this household. I've been a mom for almost 16 years, so I'm pretty happy this is just the first (knock on wood) and pray to God it's the last. With my little monkey though, who knows what's ahead!

So it started as trying out his new big boy bike. A bright orange, very cool, Harley Davidson themed Schwinn with training wheels, compliments of grandma. He just wanted to try it out.

So my husband guided him down the driveway. Not more than 30 seconds later, he turned the handle bars too fast and was over before my husband could catch him. Shoulder took the brunt, then the head.

I know, I know, where was his helmet? There wasn't one. Don't judge.

So after assessing the damage - huge goose egg on head, bruised shoulder, and a very upset, shaking, little boy (who honestly rarely cries) we decided to take him to Urgent Care to get him checked out. While at Urgent Care he started falling in and out of sleep on his daddy's lap. They assessed him, called the children's hospital, and decided to transport him in since he was showing signs of concussion.

As the paramedics hovered around and over him, he couldn't see us but,

he could HEAR us.

He heard mom's and dad's voices comforting him the whole time. He heard us as we talked about everything that was happening. He heard us tell him we were going to the hospital to fix his shoulder. He was able to perform simple tasks that the paramedics (or drs at the ER) asked him to do.

He didn't cry. He showed no signs of fear. He didn't fight anything.

and I attribute it all through the fact that he could HEAR our voices.

My husband rode with him in the ambulance and I met them there. He's VERY attached to daddy right now, and as much as I wanted to climb in with him, I knew he wanted his daddy by him. Plus his daddy is much calmer than I am, and kids pick up on those things.

His daddy sent me this picture from the ambulance to let me now he was doing better. His daddy knows me pretty well and knew I needed this.

Can you believe he didn't fight this!?! He even tries to smile in this situation! Seriously the happiest boy I know.

By the time I got to the hospital, he was sitting up on his own, and back to himself. It really scared me how he wouldn't wake up and kept falling in and out of sleep at the urgent care center. So when I saw him sitting up on his dad's lap and he said, "Hi mom!" as I walked into the ER, I felt a bit more relieved.

at the ER.

Of course we went there without a t-shirt or shoes (we had to cut his shirt off him because he screamed so badly when we tried to take it off). AND, of course he had Jackson Pollock paint day at school that day, so he had paint in his ears, his hair, his feet, etc. All the medics kept saying things all worried, "Is his ear bleeding?" or, "There's blood here in his hair." or my favorite, "His feet, what's all over his feet?!"It was actually quite amusing. and of course this is how the story goes ... it's how we roll.

He got his first x-rays - which again, thanks to his CI, he was able to listen and do as the technician needed him to. I called one of my bffs, this CI mommy, as I was a nervous wreck on the way to the hospital. She calmed me and suggested I call Cochlear. I was VERY impressed at their quick response to get me in touch with a pediatric audiologist who reassured me that a x-ray and/or cat scan would be fine, but to just take off his CIs. They also suggested to get his maps checked soon, especially with the head trauma and his EVA.

first x-ray

my brave boy eating a lollipop as we wait for X-ray results

of course you get a chocolate shake anytime there is an ER visit

home resting. His sissy was so worried!
and check out those feet and nails from paint day! ew. but goes so well with the story.

and of course, the AV mom in me was snapping away, because just think of all the vocabulary we get to talk about now! Experience book in the making.