Quick Catch Up

LONG.overdue.UPDATE. 

{in pictures}.
we've been busy.
very.very. busy.

someone got glasses for being farsighted.
more equipment, but have to say,
pure {CUTE.ness}

he also got the new Cochlear N5s!

Check 'em out! You can't even see them from the front anymore!

pure {EXCITEMENT}
(more to come in a separate post)

someone else got a nice fresh hair cut.

because her school had a bout of lice, and unfortunately, so did she.

{EW}

what a trooper she was.

what a wreck her momma was.

my first born turned SIXTEEN.

wow. it can't be possible that I'm the mother of a 16 year old.

{SIGH}

He also got his first job. at Wendy's.

and no, he doesn't have his driver's license and this momma

is in no hurry for him to get it.

in due time, right along with good grades and that one word - responsibility.

{smile}

then there was also the first dentist appointment.

Do you know how AMAZING it felt to sit back and let Aiden

answer all the questions the hygienist asked?

{MIRACLE} 

of cochlear implants.

Ryan and Kailyn have really stepped it up with their little bro.

they read to him.
play with him.
have conversations with him.
argue with him.

teach him.
more so than ever before.

pure{LOVE}

...just because

my boy's gross motor skills and motor planning skills

have skyrocketed.

he's not stumbling near as much anymore, but instead

jumping and running and leaping and everything else in between.

pure{BOY}

he loves to {LEARN}

asking questions ALL.the.time.

enough said.

We lost our kitty Bonz.

 we had him eight years,

he was a part of our family.

it's been difficult for all of us,

(especially his brother Baby)

and he is dearly missed.

{RIP} sweet Bonezee.

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.

New Beginnings

As we approach Aiden's third hearing birthday (and fourth birthday - WOW), I have to say that I never thought we'd be where we are today. I envisioned that all therapy would be behind us, except for check-ins here and there; that he'd be talking in full blown sentences, excited to tell me all about his day at school; that he'd be making up stories with details galore and talking so fast I have to tell him to slow down; that he'd be singing songs from front to finish as he danced around the living room. I envisioned he'd be at least caught up, if not beyond, his hearing peers, both receptively and expressively. To me, this wasn't a doubt. It's where we'd be.

But I was wrong. What I didn't envision is that he'd have social/pragmatic challenges; I didn't see us in weekly OT sessions for sensory processing and praxis challenges that not only effect many motor tasks, but things (that seem) as simple as multiple syllable words and sentence production; that we'd need a speech therapist on top of our AVT in order to close the gap on articulation challenges and to help him expressively speak, what he knows, more intelligibly. I never knew just how much work it is to talk and if all the "systems" aren't planning and working together, talking is one of the most difficult tasks even for a hearing child. I didn't envision awesome speech (and balance) on some days and pure mumble-jumble (speech and balance) on others.  I didn't envision hearing the words, "I'm just not sure what's going on. He's such a good listener, he gets it, he's a hard worker, and he's such a happy child, BUT SOMETHING'S MISSING." I certainly didn't envision that we'd possibly have another three years of therapy ahead of us. THREE MORE YEARS.

because I've been working my ass off. and it's SO frustrating.

What's crazy about all this though, is his hearing and listening skills are AMAZING! His technology is right on. He hears me as I yell for him from upstairs in the back bathroom and he's downstairs watching tv. He can repeat all his lings, each ear on it's own, from 10-12 feet away; he repeats all the phonemes pretty darn perfectly; he hears whispers, and well in noise. Receptively and cognitively - he's well ahead. He gets it.

I started writing this yesterday, as a "whoa-is-me-andmybaby" post. It's bittersweet hearing about other {amazing} kids implanted around the same time as {my also amazing} Aiden, speaking circles around him, graduated from therapy, and well caught up to their typical peers, all knowing we still have quite a road ahead. But, this is OUR JOURNEY; it is what it is, so we continue to move forward, and trust in our hearts he will get there (and he will).  Sometimes I feel I'm all over the board with Aiden. Like nothing's good enough for him. I promise you, it's not that. Yes, I am VERY particular when it comes to any of my kids and their education and success, but I believe every parent should be. But this is different. If it's not working or we're not seeing the support and fight needed to get him to where he needs to be, it's time to move on. We don't have time to "wait and see". Time is of essence at this stage and most importantly, I have to listen to my mommy gut. (and yes, I'm a bit of a control freak).

So we're making some changes.

and here's a glimpse at our new beginnings:

• changing his AV therapist - not because we don't love his therapist (we do), but logistically, on both sides, it wasn't working, and therefore lacked consistency. We will now have a WEEKLY session via the internet with a new AVT. There are so many positive and exciting things about this! More to come.
• changing his school - this sounds crazy, especially with his lack of language, but we're taking him out of his current oral deaf-ed program (which is 5 days a week all day) and placing him into a preschool which is 2 1/2 hours a day for four days a week. He will be the only deaf kid in his class. and it's a good thing. When I get him ready for the bus, he says, "NO mommy, new school!" He loves the new school and we've only visited twice. More to come.
• adding in a weekly (or possibly biweekly) speech therapy through our insurance - he had a wonderful speech therapist at his current school, but he was only allotted 15 minutes a day, 3-4x a week, and usually not one-on-one. I'm also working with his awesome SLP from his IFSP (before 3yo) days, to include her on his IEP to work with him one-on-one once a week, but also as a "push-in" in the classroom with him a couple days a week (in addition to a TOD). So far, the district is very open to requests and ready to work with us to meet Aiden's needs. More to come. 
• continue with our wonderful OT - there's so much I've learned from her about Aiden in the last eight months, and most importantly, Aiden is making HUGE strides. Six months ago, he couldn't stand on one balance bucket, now he can walk across six, WHILE TALKING! I tell her we get a free speech therapy session too when we see her. She's heaven sent and we still have quite the work ahead of us. 
• SOLID at home one-on-one sessions - with the change of school times, I will be able to dedicate myself to him alone. It was near impossible to work with Aiden at night. He didn't get home from school until 4pm, the same time R and K got home, then as I tried to help K with her homework, keep R on track doing his, getting dinner on the table, running to all their after school activities, bath, and bed, there was VERY little (if any) one on one time with Aiden, unless it was reading him his bedtime stories. Changing schools gives back our precious one on one therapy (aka playtime). and I think it's key to moving him forward.

We also have a neurology appt set up in May, just to see if there is something we're missing and hopefully get some answers. Maybe, just maybe, it will help us better understand his EVAS or if there's something else going on and possibly help in our plan going forward. I don't know, only hope.

Three years ago, there's no way I would've thought we'd still be here, with all these therapies, still trying to figure out why some days he speaks in clear 5-6 word sentences, but others we can barely understand a word he says. Why some days he jumps down the steps, but others he needs to hold my hand to get down. I can't waste my days worrying though, I have to keep my faith and know in my heart that he will be okay and that one day it will all come together - verbally, socially, physically. We will keep on keeping on. No regrets.

oh, and by the way, there's one other thing I envisioned almost four years ago - my child walking into a mainstream kindergarten, not feeling different, fitting in right along with all the kids -

and he will. 

Ten on Tuesday

1. Tomorrow we start another new AVT (auditory verbal therapy) adventure. We will still see Dr. Don every 2-3 months, but due to not being able to see him weekly (he's 2 hours away and if you haven't noticed, gas prices are CrAzY - especially with a SUV), we are starting weekly teleconferencing sessions with a new AVT and tomorrow we're heading to Akron so Aiden can meet his new friend and get everything set up. As Aiden said tonight, "It not Dr. Don." No buddy, not Dr. Don, but I'm sure it'll still be a lot of fun!

2. I am very excited to get this going. There is something about weekly sessions. I thought that once to twice a month would be okay, but there truly is something about the whole accountability thing. I'm really hoping the teleconferencing thing works for us, because between all of our kid's crazy schedules, this seems to fit in so much better.

3. To prepare for tomorrow's session with our new AVT, I made up a packet of information on Aiden, similar to the booklet I put together for our first IEP. I added in recent language samples, a chart of past language test scores, and all of his most recent evaluations (mainly from JTC). 

4. As I went through Aiden's audiograms and made copies, I couldn't believe how much he has fluctuated from map to map. At one point last year, he tested at 65 in the low frequencies! That's insane. His maps have had such huge fluctuations in the past two years, it's no wonder my baby is still behind expressively. We have had a pretty stable map about nine to twelve months now, but still not consistently at 20-25db across all frequencies as I'd like to see. He still drops to 35-40db here and there, hence the reason of seeing our audiologist every three months. 

5. He is still making good strides this year in all areas, but he definitely still has his off days. There are some days where he consistently loses his balance and those same days I can barely understand a word he says. Something's missing and I just can't put my finger on it. I voiced my concerns with his PT, SLP, and OT and all three of them agreed with me and suggested he be seen by a neurologist, "just to see and rule everything out" to make sure nothing else is going on. They all see both sides of him. So the referral was sent in and the appt made - for MAY. wow.

6. Do any of you/your children have a map with a higher pulse width? I don't fully understand it, but at Aiden's last mapping appointment (in December), a wider pulse width was needed to obtain NRTs on his right ear (which we've always had trouble getting NRTs on). His audiologist then proceeded to create and try out a new map with this slight increase in pulse width (increased to 37). As she adjusted it, Aiden was fine, but by the end he was burying his head in my chest and not liking it what-so-ever. We immediately turned it off and went back to square one (pulse width of 25) and adjusted based on phoneme repetition. Just curious. We go back next month for booth testing.

7. I LOVE this picture of my silly boy.

8. I CHERISH our "therapy Thursdays" together. We start out with an OT session and then the rest of the day is just ours. I really need to blog his OT sessions (and AMAZING therapist) - I have so much to share. We have noticed though that when he comes in with "slush mouth" (jumbled speech), within fifteen minutes of heavy work, he's speaking a lot crisper. He LOVES his OT and is quite the performer for her!

9. Took this picture of a beautiful sunrise the other morning from K's bedroom window. Bliss.

  

10. that's it. hope you enjoy your week. i will. i get two days with my boy ... tomorrow and thursday! As Aiden says, "No school tomorrow. Stay home mommy!" Ya buddy!!! i.love.it!

Wednesday Workout - Cheap Therapy

I LOVE the dollar aisle at Target. They always have the neatest things - from chip bowls, to cute holiday platters, to THERAPY toys! All typically TWO BUCKS or less.

I picked up these foam shaped blocks for a dollar a couple weeks ago. They have become Aiden's favorite thing to do and we have spent countless hours of therapy play time with them.

Here are some language goals that we're currently working on with Aiden:

• Use of pronouns
• Understand quantitative concepts of some, rest, all
• Answers what and where questions.
• Understands questions with post-noun elaboration (white kitten that is sleeping)
• Understands spatial concepts of next to, in front of, in back of
• Identifies advanced body parts such as forehead, wrist, eyelashes

and some auditory goals:

• Recall four critical elements in a message
• Sequence a series of multi-element directions

In addition to these, there's also OT, speech goals, speech babble, cognitive etc to think about. The more you can do to incorporate all into one lesson, the better ... and these $1 foam blocks, did just that!

Aiden creating his own pattern

• Pronouns - emphasized use of me, I, mine, my, you, and your(s) throughout playtime (Aiden refers to himself as "Aiden" instead of me or mine).
• Sentence expansion - As we played, I would put four or five blocks aside. Since Aiden mainly speaks in two-three word sentences, I always expand it to four or five words, with emphasis on the extra word I include. He seems to imitate better if I have something he can "touch" for each word said. For example, "I have ALL squares." and I would touch one block for each word spoken, then he would do the same describing what he had. I've also used scraps of paper or pennies for this too.
• Syllable work aka speech babble. This really helps with his articulation and expanding sentences. Right now we're working on simple speech babble up to four syllables (again, by touching each block, helps him get the four syllables out instead of stopping at two or three: ba-ba-ba-ba, bo-bo-bo-bo, be-be-be-be, ba-bo-ba-bo etc). This is very helpful with his speech motor planning and oral motor skills.
• Auditory memory - build a tower, as instructed by mom ("...two circles, two orange squares, then a green star on top"), then BLOW it down - (good for oral motor and breath control)
• PATTERNS! I would create a row of blocks and as I made it, I'd say, "orange square, blue circle, orange square, blue circle". Before I knew it, he was making patterns with three-four elements all on his own, and would say, "orange square, blue square, circle, star, orange square, blue square, circle, star ...". Also good to throw in sequencing words first, next, and last.
• Counting and math - answering the question "how many ...", but they weren't just simple how many questions, but more like, "how many green stars and orange squares do you have ALL TOGETHER?"
• Quantifiers (some, rest of, all, etc) - "Give me ALL of the squares." OR "Pick up the rest of the stars."
• Body parts - "Touch the orange square to your forehead", "Put the red heart on your wrist." etc
• Adjective comparisons - tall, taller, tallest, short, shorter, shortest, long, longer, longest etc. by building towers and "trains".
• Prepositions - build a house or tower then instruct, "put the orange square in front/in back of the house/tower" (other words used, behind, next to, on top of, on the bottom, in the middle, underneath
• The NOT word - "Give me all the blocks that are NOT squares." At first, he'd hand me all the squares. By the end of our first play session, he would hold up a shape and say, "NOT a (square/circle etc) and would gleam with pride!

ALL FOR A BUCK.

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!

TWO Milestones Today!

Every Friday we attend a class, Muscles and Messes, that is put on through a private Occupational Therapist paid for through the county as an Early Intervention service. The ten week class is for kids who have sensory integration challenges and is run by an OT who specializes in SI and a speech therapist. Each session focuses on a different sensory input. The parents are provided information on the specific input along with ways to help the kids overcome different challenges. During the hour session, the kids run and play and swirl and twirl and crash and swing and slide and push weighted down shopping carts and smear paint or shaving cream all over the windows and ride the zip line and play in the ball pit and crash some more. It's an hour of nonstop fun,

and by the time we walk out of there, Aiden has had his sensory fill and will actually SIT in a shopping cart. The class is PHENOMENAL!

At the end of each class, we sing the "clean up" song then head to circle time to sing our good-bye song, to which each kid is prompted to say their own name.

Milestone #1 - After the clean up song, Aiden actually went and SAT DOWN on his own, and was the first one there and prompted the other kids to "sit own". He typically needs to be guided each step and repetitively told but through his own listening, he knew the song was over and the next step he needed to take! Even more shocking, he actually sat through the whole good-bye song. I'm usually the only mom sitting in the circle without a kid since he's the one who is still up and running trying to get in every ounce of play he can.

Milestone #2 - During the good-bye song, AIDEN prompted everyone else to say their name. I had to look to make sure I had the right child, because in any type of therapy/class setting, Aiden does.not.talk. At each child's turn, he would point to them and say, "name?" and then try and get them to say, "Aiden." He wanted everyone to be Aiden. Of course, when it was his turn to say his name, he said nothing, but by golly, everyone else was "Aiden".

These are huge for us. H-U-G-E, HUGE! I hate that we only have four classes left and that this OT has a waiting list a mile long, because as comfortable as Aiden is there and as awesome as this OT is with sensory related challenges, he could make some huge strides.

Smorgasbord of Updates

Not posting in awhile PLUS tons of unfinished posts sitting out in Never, Never Land EQUALS stress in my OCD mind. To clear my head and stop the massive pile up of posts screaming to be finished, I decided to sum it all up in one, which is probably best since I'll be to the point and not ramble on like I often can.

1) Vacation! - Let's start with the important things first. ; ) Aiden's daddy and I just got back from a much needed get-away to Vegas with my husband's sister and her husband. It was our first trip without kids AND without going to see family in over 10 years! Our 16 year anniversary is coming up (smile) and they just celebrated their 10 year (smile). Aiden's awesome grandma drove in from Wisconsin to stay with the kids while we flew off to Sin City. I didn't realize how worn out I was until my body took over my fun and went into complete relax mode. I did more laying in the sun and sleeping than anything else. My mom did a FABULOUS job in keeping up with Aiden's CIs, participating in his therapies, and by the time she left, he even had some new vocabulary added to his growing list. We all had an amazing time, came back more relaxed and are now ready for the beach!

2) New Audiologist - We decided to switch Aiden's audiology center from Cincinnati Children's to Cleveland Clinic strictly for convenience. We loved the audiologist we had in Cinci, but traveling two hours west one week then two hours north another was wearing. Our newest audiologist was trained and highly recommended from our old one, works hand in hand with Aiden's AVT, Dr. Don, AND is training to be an AV under him as well. So not only is she Aiden's new audiologist, she participates in his Saturday AV therapies as well. She is absolutely wonderful with Aiden and he responds very well to her.

3) Mapping Madness - A few weeks ago we had a third audiology appointment within six weeks. We're still trying to get Aiden's maps back on track and with the looks of his latest audiogram, we're well on the way. I was shocked Dr. Rachel got results across the board like this because the boy wouldn't sit still and really wanted nothing to do with the testing. So I'm sure they're even better than what the audiogram below shows, which would put him hearing between 20 and 25db across the board! We go back in a couple weeks for AV therapy and another audiology appt. to confirm these results and make any necessary mapping adjustments.

4. Speech Therapy - Back in early summer I debated adding on more of a traditional speech therapy for Aiden and decided to go ahead and try it for six to eight weeks. Well, we are going to continue with Ms. Cheryl as we absolutely see a difference in Aiden's overall tone and breath control. She has been amazing at providing us ideas on how to work with Aiden's sensory issues and low muscle tone which are affecting his motor planning skills and therefore his speech production. We know Aiden gets it receptively. He's well above age level in his receptive language. It's expressive where he lacks. He is starting to speak in a lot of two/three word sentences, it's just that you can't understand a lot of them (unless it is something that has become very repetitive for him, such as "get down" or "all done" or "it's stuck"). If he were to say each of the two or three words separately, you'd understand each one pretty well. But when he goes to put two or more words together, they come out all jumbled. We brought up the concern of apraxia, but she doesn't see it in Aiden. She is also helping us with specific speech sounds (right now we're working on /p/). Since we've been seeing her, Aiden is now producing a perfect "ee" and can hold a sound for a much longer duration AND at different pitches; something he couldn't do before.

5. Auditory Verbal Therapy - We continue to see Dr. Don two times a month. We drive to Cleveland once a month so Aiden's daddy or siblings can participate in a Saturday session, and then to the college where Dr. Don teaches once a month which is closer to home. This man is amazing and Aiden responds very well to him. We're blessed to have him on our team. Right now we're working on 1) identifying "ing" verbs and using them in simple sentences such as, "The boy is riding.", 2) sorting higher level groups such as types of animals (farm vs. water vs. zoo/jungle) and fruits vs. vegetables and 3) discriminating between similar sounding words, such as house and mouth, 4) story telling through Aiden's daily experience book (which I'll detail in a separate post).

5. PT and OT - Six months ago my son couldn't walk on or off a one inch floor mat without falling. He would have to completely stop, throw his arms out for balance, then carefully walk up or down. One inch. Many days he walked around like a drunken sailor. He could barely run and definitely couldn't jump. There's not a better time to see improvements in gross motor than summertime. Parks, play dates outside, riding bikes, climbing, running up and down hills, camping, swimming, etc. This summer we saw TREMENDOUS gains in Aiden's gross motor. He is now RUNNING, jumping (well more like trotting, but sometimes he'll get both feet off the ground), and best of all - he's PEDALING his tricycle! He still has some off balance days, but he's learning to compensate for them and is finally keeping up physically with his peers.

With his gross motor gains and ideas from his wonderful PT to continue to work on at home, we're going to stop PT for awhile and pick up OT, but this time with a therapist who specializes solely with sensory integration. Sensory is such a beast to understand and can affect so much, including speech production. I don't feel like I have a good handle on it and need a lot better guidance on how I can help Aiden conquer his sensory needs in order to move forward with his expressive language and speech production ... oh and learning how to calm his major hyperness/daredevil ways wouldn't hurt either.

6. Transition Time - I CANNOT BELIEVE we're at the point of leaving county services and beginning to look at PRESCHOOLS! To me, this means Aiden is almost THREE and growing up way too fast! I'm in the process of touring local preschools (more to come on this) and at the end of this month we'll have our transition planning conference with our local school district. It is a very brief meeting which we'll introduce ourselves and let them know which preschools we'll be touring as well as where we would like Aiden's evaluation done to determine eligibility of services.

7. and the best for last - Aiden. Aiden is taking off. His vocabulary is growing daily (I know. I SO need to update that vocab. list to the right), he is reaching the goals set for him, and you can just see his little brain constantly in discovery mode. He knows his colors, his shapes, his numbers (not just rote counting, but identifies them written up to 10) and is starting to recognize certain letters. He's having little conversations with us. He tells his brother, sister, and the cats what to do, he tells everything bye-bye (except his therapists, because why on earth would he talk to them?), and is starting to express his wants and needs so much more than he ever has. He has finally learned to EXPRESS the word NO ... and as he says it, he signs it just as fast! Dr. Don says he's on the verge of a 2-3 word sentences language explosion, "Deafness, shmeffness", he says, "he hears and speaks better than many hearing kids I know."

I love this journey.

Searching for Some Guidance

As parents of deaf and hoh kiddos know, appointments can be very overwhelming and feel as if there is no end in sight. In the beginning it felt like we had an appointment nearly everyday for months on out. They settled down as time went on and then WHAM - we were slapped back into reality as we went to nonstop activation and mapping appointments, not to mention the therapies in between. Then the storm calmed and appointments became fewer again.

I feel we're back in the storm again.

Aiden's list of therapies/appointments to date include:

• Physical Therapy - After a recent evaluation, Aiden is still significantly below average in stationary/balance skills and locomotion skills. He has low muscle tone (which I would never guess trying to pry him off something or take something away from him - the boy is strong!) We have a PT come to our home every other week.
• Auditory Verbal Therapy - Every other week we drive 2 hours to see Dr. Don. I know crazy, but we LOVE this therapist and we get to visit family all at the same time.
• Regional Infant Hearing Program therapist - once a month and LOVE her too. We do a lot of learning to listen activities that go hand in hand with our AVT. This is at the same school that houses the oral preschool program for the deaf/hoh that Aiden will most likely attend.
• Music Therapy - We just changed this from weekly to every other week, she comes to our house, and it's a TON of FUN.
• Occupational Therapy for sensory issues/vestibular/balance. We just left one practice due to lack of "warm and fuzzies" for this therapist. When you don't feel like you're learning anything to help your child and dread going to therapy, it's time to move on.
• Audiology appointments - We have these once every two to three months ... we're still trying to get Aiden's maps back on track. We're getting there, but I'm still seeing issues with his responses to the low frequencies in his right ear - we're heading back to Cinci in a few days.
• Little Gym - YAY! We love Little Gym! It's a FUN class to help with balance and low muscle tone, but even more importantly, to be around other kids his age and have some fun!

Then of course, we have the most important therapy, and that's our everyday language rich experiences that have become part of our everyday normal.

(These are the reasons I stay home. If I got paid for all the different "hats" I wear, I'd be making much more than I ever did in the working world.)

To top it all off, we are considering putting him into a more "traditional" speech therapy (in addition to his auditory verbal therapy). This would offset the weeks Aiden doesn't have AVT. She works with our county and comes highly recommended as working with a wide array of special needs children and helping them learn to speak. She also specializes in working with kids who have low muscle tone and sensory issues. Although our team believes Aiden is doing well and is a very bright two year old, there is a consensus that his low muscle tone and sensory seeking ways may be affecting his speech production. (after taking into consideration the fact that he's deaf of course).

We had an evaluation with this therapist, Miss Cheryl, last Friday. She is married to a deaf man who was implanted years ago, but never quite adapted to it, so no longer uses it. She has a child with vestibular and sensory issues similar to Aiden's. She likes to use sign as a bridge to spoken language. We informed her we are not against sign, but use it VERY little. We like her. We like even more her office is only FIVE minutes from our house. I worry about having yet another speech therapy, but more so, one that is to a different beat than what we're used to in AVT.

We are also questioning finding another OT who specializes in sensory integration (SI). We did have Aiden reevaluated through our hearing program's OT (we never completely understood Aiden's OT issues until this point). The results showed Aiden's grasping and visual motor skills on target, yet there are vestibular issues (due to his EVAS) which he is most likely compensating for relying on vision. The sensory profile results suggested that there are issues with auditory processing (of course) and oral processing (hyporesponsive meaning it takes more input than normal to register). Aiden is a sensory seeker and low registration child (meaning again, Aiden requires a significant amount of input in order to produce an appropriate response). These children are very active and are continually engaged within their environment. Aiden gets overstimulated in an environment with a significant amount of visual input, since it is this system that he relies on to overcompensate for his vestibular issues. The OT recommended 1) at home activities to focus on enhancing his other sensory systems (besides vision) to learn to compensate for vestibular deficits, 2) continue PT, and 3) seek a speech therapist regarding oral motor processing due to sensory results.

So what to do. This would add in two more appointments into our already busy schedule. We DON'T want to overindulge Aiden in therapies. We DON'T want his toddler days to be sitting in a therapy chair or playing in a therapy room. We DON'T want to look back and remember him being more in therapy than playing with friends. Yet in the same breath ...

We DO want our baby to learn to compensate for the dizziness/balance problems he may have for the rest of his life.

We DO want our baby to run and keep up with his friends, something that today, is very hard for him.

We DO want our baby to hear and to speak in a way that you'd never know he had a hearing loss.

We DO want our baby to be mainstreamed by kindergarten.

We DO want to build a strong foundation for Aiden in which to build upon by providing enriching life experiences. To build this, we believe it does take a village. It's this village that helps Aiden's daddy and I understand how to make sure the foundation is solid and how to continue to move forward, building up and branching out

We DO want our baby to feel successful in an already hard world.

We know all this is possible. We know all this takes a lot of hard work. We know we need to work hard with him now, to make it easier later.

We'll figure it out and I'm seeking guidance from the true professionals who have been there done that to help us.

For those of you whose child has vestibular and/or sensory issues:

• Did you find that occupational therapy helped these areas?
• Are there any books that you found most helpful in helping you help your child?
• Did you find that these areas were affecting your child's speech progression and if so, what helped?

For those whose child sees a "traditional" speech therapist (in addition to another type of oral/auditory therapy or alone):

• What ways do you see this benefits your child?
• Do you work more on pronunciation and articulation?
• If you've seen an AVT as well, do you see the two therapies as completely different? Do you find they complement each other?
• If seeing more than one speech therapist - how do you manage them together? Do you ask that the lessons be similar or let each therapist do their own thing and work on something different?

Any feedback, thoughts, words of wisdom are greatly appreciated, even outside the questions I may not know to ask.

I have to say too, we don't spend our days constantly worried about Aiden. We are happy with his progress, yet concerned in the same breath. He's trucking right along with some bumps and bends in his path. We want to make sure he has the right means to a successful end. He has more "opportunities" (thank you Ethan's mom, I like using this word better than others) than hearing loss, and understanding and balancing them all can be quite the task. Sometimes I feel like I could work for the circus (especially when you add in Aiden's siblings which could be a whole other blog all in itself). Seriously. ; - )

Sensory Integration

I started this post before Christmas and am just getting around to finishing it. I have so much to catch up on with Aiden, but wanted to make sure this made it as part of his journal.

In December I received an email from the wonderful OT at Aiden's old school with his Occupational Therapy Score Results. Her and I had previously discussed what she observed and believed Aiden would benefit from a couple sessions of OT per week. At the time I was so busy with the holidays and our upcoming move that I pushed the email aside and let it be. I had enough going on, let alone enough of reading where my son lacked. I knew it wouldn't be that pretty, not bad, but not good, and I needed a break.

Well, after reading this post, from a very dear friend of mine back in Texas, I knew I needed to face the facts and open his OT test results. I'm glad I did.

A little history ...

Aiden has been receiving PT services from the county since he was first evaluated at three months old. He has always been behind in his gross motor skills, but seems to catch up, until it's time for that "next level" of locomotion. There has never been any concern though to get an occupational therapist involved. In fact, this past July was his six month review from our county and he tested within normal limits for all motor skills except locomotion (since, at 16 months, he still wasn't walking). I've never had concerns about his sensory integration, until after feeling I could have written this post from the same great friend, and asked his OT at his school to look at this as well.

Here is a summary of his test results (which was completed at 19 months of age and he is now 22 months):

Warning note - unless you're interested in each little boring detail, skip to the end ... I like to document all the boring stuff too, just in case it helps another parent going through similar situations, especially with the AWESOME reports we got from Aiden's school).

Gross Motor Skills

• Aiden is functioning at the 11-month level for stationary gross motor skills and at the 11 month old level for locomotion (he was not walking at this time, but is almost running now).
• Aiden is functioning at the 12 month level for object manipulation (ability to manipulate balls - throwing, catching, kicking - again, he's come along way since this).

Fine Motor Skills:

• Aiden is functioning at the 14-month level for grasping skills
• Aiden is functioning at the 15-month old level for visual-motor integration

Sensory Integration

First, a little bit of background on this. Sensory integration is the organization of sensations for use. Our senses give us information about the physical conditions of our body and the environment around us. The brain must organize all of these sensations if a person is to move, learn, and behave in a productive manner. Sensory integration refers to how a child processes and interprets sensory input such as touch, movement, visual, and auditory information in a purposeful and organized manner. When students receive inaccurate or unreliable sensory input, their ability to process the information and create responses is disrupted (Dunn, 1991)
To assess Aiden's sensory functioning, the Winnie Dunn Infant/Toddler Sensory Profile was completed by Aiden's daddy and me, along with clinical/classroom observations. There are three areas into which Aiden could fall:

• Typical Performance - indicate typical sensory processing abilities
• Probable Difference - indicates the child is performing between the 2nd and 16th percentile (representing 14% of the population sample).
• Definite Difference - indicates the child is performing like a child in the lowest of 2% of the standardization sample.

And Aiden's results:

Aiden demonstrates Typical Functioning in the areas of General Processing, Visual Processing, Tactile Processing, Sensation Seeking, Sensory Sensitivity, and Threshold.

Aiden demonstrates Probable Differences in Auditory Processing (go figure), Vestibular/Proprioceptive Processing and Oral Sensory Processing.

• Auditory Processing - hmmm ... ya, makes sense, he's deaf, it's what I work on day in and day out.
• Vestibular/Proprioceptive Processing - In a nutshell, these two units challenge the child's ability to respond to movement and understand his/her own body when it comes to interpreting gravity and movement sensations. This can affect muscle tone, equilibrium responses, bilateral coordination, spatial perception, emotional expression, and self-stimulating behaviors. This explains a lot. Aiden is constantly seeking vestibular stimulation, which is why he is constantly on the go and has no fear of the consequences of his actions.
• Oral Sensory Processing - Aiden has a hyposensitivity when it comes to this. He's a very messy eater, stuffs food in his mouth and pockets it in his cheeks, and we are always watching for him for what he puts in his mouth (from CI batteries cages to crayons to cat food)

Aiden demonstrates Definite Differences in Low Registration. Children with low registration fail to notice sensory stimuli in their environment; they tend to not notice what is going on around them and miss cues that might guide their behavior . It is said that children tend to appear uninterested and can have a dull or flat affect and possibly low energy levels (which is SO NOT Aiden, the boy doesn't sit still for a second!)

All this, along with the fact he's a typical, very hyper almost two year old, explains why Aiden has NO FEAR; why he climbs onto EVERYTHING (window sills, his sisters bunkbed, anything with shelves, table tops, counters etc); why he cannot sit still for even short periods of time (unless it's Elmo); why he can't focus on one activity, unless I'm sitting right next to him, and even then the activity is very short lived, which makes at home therapy VERY HARD; why he climbs up the couch and then hangs from the back of it and laughs; why he doesn't cry much when he hits his head; why he has such a high tolerance for pain.

All of these can have an effect on his receptive and expressive language as his mind is constantly working on overdrive to find the next best thing to get into. Along with this, having a high tolerance for pain can have a huge effect on a child's maps since they don't always show visible signs that it's just "too loud".

Aiden was making some wierd noises after one particular mapping session and about the same time, I read the post mentioned above. I called our audiologist and shared Aiden's OT report with her and inquired about him possibly having a high tolerance for pain. She got us in the next day and gave Aiden a "softer" program to work with and he's been doing much better ever since.

As parents to a hearing impaired child, we know all too well how stressful all the appointments, testing, and therapies throughout this journey can be. Since the day I found out Aiden was deaf, I have focused my energy on the one thing I wanted him to do the most - HEAR and SPEAK. I wasn't aware of terms like "sensory integration" and "proprioceptive processing" much less realized these could possibly be holding him back from learning just how to hear and speak.

With that said, we have a lot to focus on this new year. I feel like we're back at square one. Yes, we've come a long way since this time last year, but as we approach Aiden's first hearing birthday, I feel like we're so far behind and now have a couple more ingredients to add to our mixing pot.

Yet I look at the positives. Aiden IS hearing; he has a pretty small vocabulary, but by golly, he IS talking; and above all else, he is such a HAPPY little boy. We are in a new location, with new resources, and building a whole new team for our little monkey. I don't know the final plan yet, or what tomorrow will bring. We have a lot to learn. I do know we'll get to where we need to be when we're supposed to be there. Let's just hope it's sooner than later.

Next Steps After Concerns ... and a little "h"

After posting my concerns about Aiden's standstill I received a lot of great feedback, so first let me shout out a huge THANK YOU! All my CI mommy friends rock and it is so nice to know there is support/words of encouragement/advice out there from those who have been there done that! Second, these comments confirmed my inner mommy concerns, so I scheduled a meeting with the audiologist at Aiden's school for a second opinion.

The audiologist here did reassure me his audiogram was not bad, but that if he was in the 15db to 20db range, across all frequencies, that dropping to 25-30db, was something to definitely recheck. She also mentioned that she doesn't like to see anything less than 15 db as sounds can become distorted any lower than this. She's going to take a look at his maps (programs) and test him in the soundbooth. I love this place.

The school's OT also joined our meeting as they have concerns about Aiden's muscle tone and the fact that he's the only one in his class who is still not walking. They're not overly concerned, but want to evaluate him more and work with him to help him along.

Aiden's sister was a late walker, but her pediatrician was never concerned. She also never crawled, she walked on her knees to get around ... also, no concerns. What I've learned is that skipping the crawling stage can hinder fine motor skill development and muscle tone for years to come. To this day Kailyn's handwriting is not that great, her muscle tone is weak (she's in gymnastics to help this), and even the muscles in her eyes are weak (we just increased her glasses Rx for the second time in 6 months). I wish I had known then what I know now. I'm sure she would've qualified for OT services and there's a good possibility she still may. Just another battle I'm working my mommy magic on.

Anyway, I say all this because if this is a service Aiden's school provides and Aiden will benefit from it (even though this is something else we have to add to our plate of craziness), we're definitely going to take advantage of it. Again, love this place.

I have to say my concerns for Aiden aren't that he's not doing well. I believe my little man is doing a wonderful job with his CIs and coming along beautifully. But I feel we're stuck and I am truly concerned about his map. I need to validate if my concerns are right or wrong. If they're right, we'll get it fixed and move on. If they're wrong, then I will see what I can do differently and continue to work hard on next steps.

My main concerns are:

• Aiden's not using the /oo/, /ee/, /s/ or /sh/ in any babbling or words. Nothing. Nada. Nilch. (I'm not as concerned about the /sh/ and /s/ as I know these come later). We work on them all the time - owls, cars, ghosts, etc. Yes he responds to them by pointing at his ear when I Ling check him, but who knows if he's really hearing the /oo/ and /ee/ like it's supposed to sound. I'm going to talk with his SLP about this more and get her opinion on it. Maybe it has something to do with his oral motor skills?


• Why aren't his maps ever tweaked? Right now we've been going in every three months. There hasn't been one change to any of his maps since the beginning of May.


• Why has he dropped so many of his words? I'm hoping it is because he's been trying out walking more. Many of you confirmed my standstill concerns and said that your children definitely have them, but again, with his most recent audiogram, I can't help but wonder.

To end, I have to share a recent video of my little monkey. All these concerns, and then he does this. Here he is showing off his mouth parts and demonstrating his progressing "h" sound (which he picked up by me saying "hot" every morning as I let him feel my coffee cup).