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.

when it all starts to come together.

As I wrote a couple months ago, NEW BEGINNINGS have been in the works and all I can say is WOW. I knew in my heart a lot of these changes were what we needed to move forward. No regrets.

My son is taking off.

For example:

HIS SPEECH and LANGUAGE

• 2 MONTHS AGO: "Help you mommy!" TODAY: "Mom I need help! I can't reach my chocolate milk! Mommy help me please!
• 2 MONTHS AGO: "Kailyn soccer. Aiden park." TODAY: "Kailyn go play soccer and mommy and Aiden go play at park. I like the park mommy. Oh thank you!" 
• 2 MONTHS AGO: "I want bed mommy." (meaning he doesn't want to go to bed). TODAY: "After bath, time for bed? I don't want go bed, I stay up you and daddy." 
• 2 MONTHS AGO: "What's next?" TODAY: "After school, library and get books, then what's next?" 
• 2 MONTHS AGO: "Aiden Lucky Charms please?" TODAY: "I hungry mommy. I have Lucky Charms no milk."
• 2 MONTHS AGO: "Ow Kailyn!" TODAY: "Kailyn don't hurt my head! That hurts! owww!"
• 2 MONTHS AGO: "Aiden three year old." TODAY: "I four years old next year I five and then six. I not three no more."
• He's using phrases like - "Oh, it's so beautiful!" and "Wow! That's amazing!" and "I am so excited mom!" and "I said to hang on." (really? I must say this.)
• He's picking up on language through incidental learning left and right. He's expanding his answers to questions to include words within the question.
• When I didn't understand that he wanted me to turn the radio OFF in the car (I thought he was saying up) he overstressed the oFF saying it perfectly (he really has a hard time with this letter) and when I asked, "Why?" he answered, "BECAUSE it's too loud!"

I kid you not. His language has SKY.ROCKETED. We still have a lot of work ahead of us, but I knew it was in that cute little head of his just waiting to explode!

HIS OT
I really need to write a post about Aiden's OT. She is uber-amazing. When I think about her, I smile. When Aiden sees her, his face lights up. She has a gift. I'm going to dedicate a post all to her, but wanted to give an update here.

• Six months ago, Aiden could barely walk across 2 balance buckets, this week, he made it across all SIX (or seven?)!!!
• He's running without falling (ok, most of the time).
• He's processing multiple tasks in an a lot more seamless manner than he's done before (still a little ways to go, but the boy has made HUGE strides!)

A lot of his progress in OT transfers over to his speech. Again, need to dedicate a post about this. We're still scheduled for neurology in May, as he still has off balance days (or hours). I asked Miss A if she thought we could "graduate" soon, and she thinks we still have a bit to go. That's okay, because we'd miss her in our weekly schedule!

HIS DAY to DAY SCHEDULE

• He is sleeping in his OWN BED and going to sleep in his OWN BED at 7:30 and falls asleep on HIS OWN! This is huge. TWO MONTHS AGO: I would have to lay with him every night as he tossed and turned and didn't fall asleep until well after 9 by which time I was also out.  Then he'd be up throughout the night, 3-4 times or more. I was getting no down time at night and neither of us were getting any sleep.
• He has always been a happy go lucky kid, but I'm telling you, the kid has an extra pep in his step these days (literally, because he's learned to gallop (another HUGE milestone for him) and he does it everywhere we go).
• He is eating better. I know kids go through stages, but it seemed like his appetite came back the same time all these changes happened. 
• Him and I get the whole afternoon together - to be silly, play hide-n-seek or go-fish or legos (or work on those pesky /f/ words), or dance, or go to the park, or even just sit back and watch a movie together. It's amazing having this time back with him. I LOVE our alone time together. Seriously, PRICELESS.

He's coming out of his shell and showing us what he has. It's all coming together. I attribute a lot of this to being around HEARING peers (good language models), an amazing new teacher, his wonderful OT, and a new weekly AV tele-therapy program with the amazing Dr. Todd Houston and his grad students through the University of Akron (more to come on this too) ... 

OH, and he's FOUR ... and everything seems to change at FOUR. {SMILE}.

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. 

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.

Decision Made

Not long ago I wrote this post looking for guidance and thoughts on putting Aiden into an additional speech therapy. First, let me say THANK YOU to all who responded! I love this amazing community we are all a part of and the open advice/guidance we provide one another!

Soon before I wrote that post I had no qualms about it, in fact, we were very excited this highly recommended therapist finally had an opening for Aiden. Being the OW (obsessive worrier) type of person I am when it comes to my kids, I decided I didn't do my homework well enough (due to completely forgetting about the first appointment until 15 minutes before it, which led to me NOT being prepared mentally or physically) to make a final decision, and hence, my fret all about it.

After a weekend of wondering and hearing back from all of you, I decided I needed to speak with Miss Cheryl again, so I called her, this time much more prepared.

I was very upfront and honest explaining I was nervous about mixing philosophies, about confusing Aiden, about her plan for him, about having "too much" therapy, and how I truly didn't know her background except for what I'd heard from others. We spoke for nearly an hour.

She had a very impressive background, attending Galludet and George Washington Univ. She's worked with kids with hearing loss, but Aiden would be her first bilateral CI kiddo. We spoke of how far technology has come. She told me she'd like to get in contact with Aiden's AV therapist and take some auditory verbal classes for her continuing education classes this fall.

She told me she'd been thinking of Aiden since we left ... how amazed she was with his excellent vocal quality and thresholds; how his speech production is very close to his chronological age, yet right on for his hearing age; how she shouldn't use much sign at all with him since HE'S A DEAF CHILD LEARNING TO LISTEN AND SPEAK and how it would be easier for him to sign than to speak, so she will refrain from using sign unless she sees it as a means to an end (which we do too). Overall, she'd like to approach him as a child with a mild expressive speech delay due to low muscle tone (which affects his breathing and therefore expressive speech ... this is why Aiden will sometimes make that annoying high pitched "gasping for air" sound when trying to speak) and minor oral motor issues (and of course, him being deaf).

We will continue full force on our AV path. We have a WONDERFUL AV therapist who teaches us ways to continuously incorporate language opportunities into everything we do. In the same sense, I believe Miss Cheryl will complement this program well working on other areas such as Aiden's breathing patterns, duration and pitch, and as time tells, articulation.

In the end, we agreed that a trial period of eight weeks would be a good amount of time to see if we are a fit for each other and reevaluate where we want to go from there. I feel good going forward and hope this does work out ... especially since she's our only therapist less than 30 minutes away!

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. ; - )

Terrible (yet Truly Terrific) Twos

Okay, I know Aiden's TWO, and going through what every parent hears as the "terrible twos". I think it's more like the "terrible two years", because this started quite some time ago and I see no light of it getting better in the near future. *VERY DEEP BREATH*

The boy keeps me on my toes all.day.long. Being a sensory seeker and not being able to stay still for more than 10 minutes (unless it's for an episode of Elmo, with a binky, and a sippy cup of milk OR he's strapped into his high chair), there is much trouble to get into. Aiden's not a child to sit and play with his toys for too long, that is, unless I'm sitting right next to him entertaining (which I attribute to the COUNTLESS hours of at home play therapy). He'd rather climb to his sister's top bunk and take all the deco off her walls; or head upstairs to get into his brother's xBox gear; or into the bathrooms to stuff toilet paper in all the toilets and watch the toilet flush, then of course, wash his hands. All this, with spurts of a here and there tantrum, makes for a very long day for mom.

Other examples of our day include:

Bedtime. UGH. We start his nightly routine (bath, book, prayers, take off CIs, bed) around 7:30 and he's not sleeping until nearly 10, sometimes later. Aiden's now in a big boy bed. I would've kept him in a crib well over the age of three, but my little Houdini was a master of escape and I was terrified he'd break a bone sooner or later. He likes his bed, but getting him to go to sleep has not been easy. He stands at his gate and screams. I've gone in, put his ears back on, talked to him about how it's "night-night" time yada, yada, but I gotta say, this is wearing. CIs off, CIs on, CIs off, CIs on. It's not easy and so now I just leave them off, sign to him it's time to go to sleep, and let him alone (or one of us climbs in bed with him until he falls asleep - I know, not good). We added the gate to keep him in since he was getting up in the middle of the night to head downstairs for some late night tv and Nilla Wafers. Seriously.

Naptime is no more. Well, I do still stick him in his room for one, BUT 1) he either cries until I let him out or 2), he'll tear it up. Very seldom does naptime = sleep a.k.a. a break for mom. The other day I went to "check on him" and he had moved the rocking chair to his dresser, got the wipes out of his top drawer and pulled out eachandeveryone, (and ya, it was a new pack). This was after he decided to "clean out his closet". Good thing I caught him before he emptied the drawers.

Bathtime. It used to be easy, LOVED bathtime! He'd let me wash his hair without a problem, would play forever, it was simple. Fun. Now however ... water + a toddler who cannot hear = disaster. That's all I'm going to say. (besides I need to learn a few new signs ... NO and STOP are not working in this situation).

The cats ... oh the poor cats. Thank God one of them is patient and the other one can run fast.

Grocery Shopping. Reserved for my husband or for me on my husband's days off. I continuously torture myself to "try again", thinking it will be different this time, only to fight a screaming toddler to sit in the cart, strap him down, and then start all over because somehow, someway he always gets out (see above comment about "Houdini"). Honestly, I have had people ask me if I needed help.

Restaurants aren't any better. He's at the age where home or a park is the best (and safest) environment.

I'm working on him understanding that sitting in the "time out" chair is not a fun thing to do. He laughs when I put him there and tries to give me countless hugs as I try to talk to him about what he did to get there.

I'm working on trying to use other words besides "no" and "stop" (which he completely understands), and use these times as "learning to listen" opportunities.

I'm working on my patience ... or should I say, Aiden is working my patience.

I often remind myself he's a sensory seeker, most likely due to his vestibular/balance issues. It's easier for him to be constantly on the go than to sit still, feel off balance and become dizzy. I know he gets just as frustrated with communication as we do. At 2 1/2 with my hearing kids, they understood and could speak back. They could tell me if they "got it" or not. Aiden's been hearing bilaterally for just about 13 months and understanding what I'm saying or communicating back is not near as easy. I won't let his hearing loss or sensory issues be an "excuse", but most definitely know they're a huge factor.

and even though I say all this, I do have to say, Aiden is truly a happy go lucky kid with a smile that melts hearts, has hugs for everyone, is in constant exploration, and is all around, a very good boy. He has an amazing personality, one that will take him far in life.

and for all this, I am thankful.

Patience ... oh, and watching my little man hear and speak ... yep, that's truly all it takes (well, and a glass of wine doesn't hurt) to get through these "terrible, yet TRULY TERRIFIC", days.

Muffins With Mom

Keeping Aiden busy during the day can be quite the task. One of his sensory goals for OT is:

"Persist at a purposeful activity for 5 minutes, with prompts if necessary."

which is one of a few short term goals to help achieve the long term goal to:

"Demonstrate simple praxis and organization of behavior by persisting at interactions with toys/equipment and imitating actions of others to enable purposeful play."

One way I have found that helps us reach this goal is to engage Aiden in helping around the house. He LOVES to help with cleaning up, laundry, sweeping the floor, feeding the cats, COOKING, etc. Not only are these activities filled with wonderful vocabulary, but Aiden is completely engaged until the end, which provides that needed sense of accomplishment and feel good of "I did it!". Even though it may take me twice as long to get these activities done, each additional minute is worth it.

So, the other day we made muffins.

Well, truly, Aiden baked and I directed.

"Open please mommy!"

We measured ...

and he poured ...

then stirred it all up (with a little help from mom).

He placed all the muffin foils into the pans,

and of course, we had to lick the bowl. YUMMY!

Even though we set the timer, he kept coming back to check out his muffins,

and like any good cook, insisted on tasting them before sharing with anyone else.

From Snow to Sunshine

Just a few weeks ago we were overloaded with snow. Since it was too cold to go outside and play, we brought it in.

Aiden got to SCOOP and DUMP, make HILLS then pretend to drive the trucks UP and DOWN the hill, make SNOWBALLS, play find the (insert object), BURY, DIG, and "ooooo, the snow is so COLD, brrrr", FILL the cup up until it's FULL then PAT-PAT-PAT the snow down, and even make a mini SNOWMAN ... all from the kitchen sink.



Oh, and his big sister even taught him about "yellow snow" and how never to eat it.


Aiden has played in the snow before, but not like this. Everytime we took him outside he sort of stayed away from touching too much of it. It took him a little bit to get his hands "cold and wet", but before too long, he was having a blast.

Fast forward just a few weeks and it's feeling like Spring outside! The sun is shining and I can't keep Aiden inside. So I picked up an indoor herb garden to plant with Aiden.

With this Aiden got to POUR the water into the BOWL to BREAK UP the SOIL and MIX it all up with a big SPOON, SCOOP the soil into the PLANT POTS, OPEN the SEED packets and POUR them into the soil then PAT-PAT-PAT the soil down, and pour more SOIL into the POTS, then WATER the PLANTS so they can grow.

Both of these activities also worked on Aiden's sensory integration (SI) goals, such as being able touch and feel different textures but even more so, being able to sustain attention to one activity for more than 5 minutes (which we're working very hard on)! It is very important that he feels a sense of accomplishment to help him attain this goal.

And as you can see, he is very proud of his final product!

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.