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.

for the love of popsicles

aiden + popsicles = summer love.

for aiden, popsicles should be a major food group.

another great video

Excellent video recap of 10 year old girl's story of having her CI activated. I LOVE these stories for many reasons, but it's always so touching to hear what it's like from someone older since Aiden could not tell us what the whole experience was like going from silence to sound.

http://www.wfaa.com/news/Girls-video-diary-chronicles-her-struggle-to-hear-153311365.html

She heard herself breathing for the first time ... something that seems so simple ...

I challenge you to stop today. Stop and listen. Take in all the sounds around you that so many never get to hear. What are some of your favorite sounds?

{tele}therapy: a mom's perspective

In today's busy, hustle bustle, gotta be here, gotta be there world, what is better than a mom's night-out?

At-home therapy appointments.

see Aiden and me on the screen?

Outside of changing Aiden's school this past March, we also changed his therapy program. We are still going full force with auditory verbal therapy, but in a little different way. Instead of driving nearly two hours to see our former av therapist, we decided to try out TELE-THERAPY, also known as, TELE-PRACTICE.

I want to start by saying that we love our AVT from the past two years. He will always be a huge part in Aiden's journey. The two hour drive to see him though was draining and the much needed consistency started to falter. Our therapy time was slipping. When you're traveling that far, with two older "activity busy" kids at home, AND gas prices are insane (right along with the insane copay), , AND by the time you get there your sensory seeking child is bouncing off the walls from being in the car for 2 hours AND you can barely get him to sit for another hour, much less listen and talk {WHEW}, it's time to make a change. So we did.

As I sought out options in our immediate area, I found our choices in certified auditory verbal therapists were far and few in between. I needed something close, something convenient for my WHOLE family, something that didn't stress me out each time I thought about it, and someone who was a right fit for Aiden. I wasn't finding it. There was ONE in our immediate area, who was new to the local CI center, and who already had a waiting list. And btw, I live in the suburbs of a major city in Ohio, imagine people with deaf children in rural areas. (to see how many certified AVTs in your area, go
HERE).

Then I met Todd Houston, PhD, CCC-SLP, LSLS Cert. AVT, and Associate Professor of Speech-Language Pathology at the University of Akron. After speaking with him about some of my concerns with Aiden, he introduced me to

{auditory verbal} tele-practice,

and we haven't looked back.

What is it?  

Simply put, tele-therapy, or tele-practice, is therapy via a secure internet connection from the comfort of your own home, therapist on one end, you and your child on the other through an online classroom. No major equipment is needed, outside of your computer, a webcam, and a microphone. HERE is an excellent {professional} article all about it.

mom's perspective: You don't leave your house. There are no extra gas prices, no extra hassles of packing everything up for a trip to therapy trying to make sure your child has a good lunch in them before hand AND some time to get their wiggles out before their therapy. Then finish up only to rush home for your other child to get off the bus or to take yet another child to lacrosse practice or rush to whatever "it" is, as a mom's schedule is never NOT busy.

What does a session encompass?
A few days prior to Aiden's session, I receive a very detailed lesson plan, along with other attachments created by the therapist to use in our session (bingo board, coloring page, game of some sort, etc). The lesson plan contains the different goals we're working on and an activity or two for each. Each week, as the goal stays the same (until met of course) the activities to meet that goal change. According to the lesson plan, I print off all attachments and gather all necessary materials (toys, items throughout the house, etc) needed to complete an activity. The lesson plan also contains ideas of what to say or ideas of items to use etc.

Once the therapy session starts, it's like your typical auditory verbal session, except I am the main therapist (which is what I do everyday, except now I get professional guidance, as I "perform", on how to teach my child to reach those goals). We start our session talking about Aiden's week, concerns, questions, etc then dive into the activities. Having all planned out lessons in front of me, allows me to let Aiden feel part of it all by giving him a couple activities to choose from. We complete an activity, get feedback from our therapist, then I provide Aiden two more activities from which to choose. The whole time he is engaged ... okay, most of the time he is engaged. It is a bit easier for him to stray and start talking about the dog messing with the cats, or the dump truck driving by. I actually find this beneficial, as it's conversational speech, and provides our AVT a good idea of where Aiden's spontaneous expressive speech is at. Plus, AV is all about language, so if I can get a good language lesson in on something he shows interest in, even better.

mom's perspective: I now have a binder full of planned out activities (and corresponding materials) for all his different goals and there is no more guess work when there is a lull in "what to do" in our daily at home "play" time. Oh, and the confidence gained from "being the therapist" for 60 full minutes, with true professional feedback on the other end, is pure awesomeness.

What are the benefits?

• You are wearing the therapist shoes. It's not just watching, then modeling, then taking home to do. It is all doing, which I have found is key in carrying the goals on throughout the week. This way, our AVT can see me in action for the whole session, provide tips and guidance, and then I feel that much more comfortable carrying it out everyday at home.
• The plethora of materials and activities at your fingertips is heaven! 
• You get to see how all your child's toys, and many other objects throughout your house, are EXCELLENT therapy tools and different ways to include them in daily language.
• A consistent up-to-date list of goals (which I know every parent should have at all times , but in all honesty, this doesn't happen). I can state his goals now better than I have ever been able to in the past. To me, (a little bit of a control freak), this is huge.
• Better yet, you have multiple activity ideas to go with each goal (or did I say this already?). 
• With a laptop, you can travel throughout the house (or throughout the US!). We've played grocery store (with real food from the kitchen and Aiden pushing around his shopping cart - LOVE it) in the playroom, cooked muffins in the kitchen, sat on the floor in the living room at my mom's house in WISCONSIN. It's versatile. It's changing yet consistent. It's innovative.
• TIME - I can't stress enough how much time this has saved me (along with gas!). 
• Aiden is in his natural element. He's more comfortable. In traditional therapy, he would clam up and never completely showed his true character. At home, Aiden is Aiden. He acts silly, he laughs, he jokes, and best of all, he talks and participates much, much more. 
• Other family members can join in OR I can show a recorded session to my husband at a later time so he can feel more a part of Aiden's therapy too.

mom's perspective: If you haven't figured it out yet, I LOVE IT.  And when your child enjoys it and is asking, "Tomorrow we see Dr. Todd and Kelly and Anne?", you know he loves it too ... and that's what is most important.

What are the downsides?

• Your printer ink costs increase (really I've only replaced one ink cartridge in three months). Although still A LOT cheaper than gas prices and crazy hospital copays.
• If you are the type of person who needs that face to face, touchy-feely type interactions, this may not be for you.
• It can get a little stressful on days other family (ahem, LOUD teenager) members are home or when Aiden is having an off day. What happens is I try to manage everything going on around me AND the session itself AND worry about getting in what we need to. Bottom line though, this is life. My stance this summer is going to be - if I can see you and hear you, you're joining in.

mom's perspective: there are downsides to everything, and if they outweigh the benefits, it's probably not worth going on with. You have to look at pros and cons for you and your family. Every child is different.

Aiden has honestly started to SOAR. I know there are a lot of factors that go into his recent explosion (change of school, more one-on-one time with mom, excellent OT services), but I do believe that the consistency of our weekly tele-practice sessions, have had a HUGE impact on it all. Not only from the consistency of a weekly therapy, and the consistency of having the activities to use on a day to day basis, but even more importantly - TIME .

Time is precious. The time saved from traveling to and from, is now time spent playing, talking, singing, interacting; it's time spent together. To me, this is priceless.

If you are interested in learning more about tele-therapy, you can contact Dr. Todd Houston at houston@uakron.edu. If you'd like more of a mom's perspective, feel free to contact me off line at aidensmom0317@gmail.com.

a song. a story. a memory.

Just had to share this SIMPLY.AMAZING video. The perseverance, determination, and hope this sweet boy and his family have shine through and through.

The whole thing is weighing heavy on my heart .... how every hearing journey can be SO different, yet SO very much the same,

the WE WON'T GIVE UP states of mind ... the determination, the TEARS,

theYEARS of therapy ... the hope, the WANT ...

the ELATION as they reach each and every little (yet so big ) milestone that you work so hard to reach. how HARD all our sweet ones work.

Then there's the song.

The song is Fix You by Coldplay. This song reminds me so much from the past four years. I used to listen to this song, along with others from Cold Play,  over and over, as I would go on long walks, pregnant with Aiden, after spending afternoons with my father (who had severe dementia and was in a nursing home at the time). I'd walk and cry. I continued to listen to this song after I found out Aiden was deaf and all throughout this journey. I haven't heard it in quite awhile, so this song + this video = many tears. It reminded me of how much we've been through, how much we've overcome, and how far we still have to go. It also reminded me, we're not alone.

and what the parents of this video say in the end, is so true .... siblings, jobs, sports, school .... and a lot of therapy in between it all ... LIFE GOES ON.

 Be prepared. Grab a tissue. (and turn off the music on the right before playing).