Wednesday, June 30, 2010

Sudden Explosion ...

like, out of nowhere?

Okay. I'm admitting it, I have a little OWD - "Obsessive Worry Disorder" when it comes to Aiden. Yes, I worry A LOT about his progress - not only in speech, but with his gross motor skills and being able to sit still. I'm his mom. I can't help it.

If you haven't noticed, I have not updated his list of "words" in QUITE.SOME.TIME. Like, since November. Ya, been a bit busy. Honestly though, I haven't been writing them down because a lot of times his words are here one day gone the next; plus a lot of them are more imitations than actually using them spontaneously in context. So being the OWD type of person I am, I decided to make a list of ALL words, but identifying which were spontaneously used in context and which were mere imitation.

With my new goal, I have been stalking my son with a notebook and pen the past few days and I gotta say, the boy is talking. Talking SO much more than this busy mom gives him credit for. I'm not going to wait anymore for that perfect sounding "dog" before I count it as a word. By golly, if I know he's saying dog and he's actually saying it as he points to a dog, the boy gets credit in my book.

It's funny how quiet he is in therapy or even when I'm working with him one on one at home. I asked our Regional Infant Hearing Advisor if she'd do therapy in our car ... because once we leave there, he's nonstop. So I decided to see what he had in his own territory, on his own time, without him knowing someone was "watching him".

and some examples ... (btw, do you know how hard it is to try and to write HOW your toddler says a word? It's not like you can stop and ask them, "can you please repeat that?" Not easy.)

Monday 6/28
We followed each other, doing our own things, but I made it a point to jot down everything I heard (and understood) that he said in context:
  • ha (hot) - as he put his hand on the dryer as I was folding clothes
  • da ih (got it) - as he picked up a puzzle piece off the floor
  • bah (ball) - playing ball
  • on - as he went around turning ALL the lights on as he does ALL the time
  • dye-dye (bye-bye) - as he waved to me to go get into trouble in the bathroom
  • ahey, et, O (ready, set, go) - as he pushed his car across the floor
  • ow!
  • hi! - his all time new (yet old) favorite
Less than 10 minutes worth. If that. I was floored.

Highlights from stalking him the past two days:

Tuesday 6/29
  • Told his dad to "et own" (get down) as he tried to pull him out of a chair
  • Would say something close to "o urn" (your turn) as he played Wii with his sister
  • "ance" (dance) as he brought me the Laurie Berkner DVD to watch
  • "boo" (book) to read him a book
  • "awsh" and "upsais" as we heading upstairs to take a bath.
and get this (we've been practicing and introducing all the sports the past couple of weeks as this summer's main theme):
  • "astabah" (basketball)
  • "oobah" (football)
  • "asbah" (baseball)
  • "oot" (shoot)
Wednesday 6/30
I'm not big with flashcards, but Aiden loves them. Every once in awhile I'll bust them out to get him to practice his pointing at the correct object and get him to imitate the sound/object name.

Out of 20 cards, he spontaneously said 12 of them PLUS added in a the animal sounds or signs. The one that surprised me most was DOG. I've been trying to get him to SAY dog FOR.EV.ER. He's always done a raspberry sound for some reason. Today he flat out said "DAH"! I nearly fell off my chair.

Those were the cards. Today, my little out of nowhere chatterbox,
  • asked for a piece of "she" (cheese)
  • FINALLY made a WONDERFUL /ee/ noise (without all the nasal nastiness) when prompted by an M&M (my new bribery tool)
  • "ah don, et own" (all done, get down) after dinner - does that count as a FOUR WORD SENTENCE?!?
  • and the BEST PART OF THE DAY ... while I cooked dinner he was playing with the dishwasher buttons. As he pushed each button, he'd COUNT! "UN, OO, (something random for three), O, I, SIs" He counted to SIX! We count all the time, but I've never heard him count without imitating me before! WOW.
I think I'm going to take the rest of the week off. The boy's a genius! (I can say that ... I'm his mom!)

Wednesday, June 23, 2010

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. ; - )

Monday, June 21, 2010

Summer O'Fun - Disney World 2010

Every year, Aiden's daddy and I work hard to take our kids on vacation. Last year, with the recent move to Maryland, Aiden's CI surgery, then activation, then many, many appointments, and my husband's new job, it just wasn't happening. In fact, the last couple years have been full of "something" for all of us, and our kids have been nothing but troopers through it all. With our latest move to Ohio, we finally feel at home, settled into our "new normal", rested. We're ready to put the past behind us and have some fun. Therefore we've deemed Summer 2010 to be our family's "Summer O'Fun!"

We started it off with a BANG and piled in the car for a ROADTRIP to Florida to meet Mickey and pals. Everyone was excited to get away for some fun, although my older two are pure beach bums and would've rather been heading to hit the waves, but they loved every minute of it!

CI Highlights:

Aiden was wonderful in the car! He left his CIs on, LOVED watching ELMO on the portable DVD player, and would "play lings" (oh my!) with his Legos (hold a Lego to his ear, say a ling, then drop it in the tin can or pass the Lego on for someone else to repeat) ... ya, you think it's part of his daily ritual?

At the Magic Kingdom they had a "Dance Party" with the characters. It was our first day there, it was nearly 11pm, and it was LOUD. Aiden's sister and cousin were tearing it up on the floor, doing the Electric Slide, Macarena, and Cha-Cha Slide and Aiden was right there jammin' along with them! He wouldn't leave Pluto and Goofy alone! I thought it would be too loud for him, but he didn't reach for his CIs once. His goal was to get up on stage and I had to keep pulling him away from the steps, which the loud speakers sat up on!

Aiden was able to go on a lot more of the rides than I thought. Some of his favorites included Dumbo, the Toy Story one (also my husband's fave), Nemo (well, he actually fell asleep during it, but he loved the beginning), the Dinosaur Land rides (at Animal Kingdom) and more. He really loved wearing the 3D glasses some of the rides and shows had. In fact, during the Muppet 3D show, they had bubbles coming down and there's Aiden yelling, "Pop, pop, pop!"

The mini splash parks at Epcot ruled. What an excellent idea for cooling off or for families with small kids waiting for the older ones on rides. Aiden LOVES water. We did take off his CIs for this, as he did get soaked, and as hot as it was, we were just fine with it.

Another of his favorites was the meet and greets with the characters. Aiden's sister and cousin Lizzie were on a mission with their autograph books to get signatures from all the characters. I thought Aiden would be scared, but not at all. He would run right up to them, hug them, then turn around and smile for the camera when asked to do so! Tigger knocked off his coil on accident, but Aiden put it right back on and continued with hugs!

As we were waiting to meet Minnie Mouse, one of the character assistants was so excited to see Aiden and his Cochlears as she had a cochlear implant too! Of course I wanted to stay and chat, but our conversation had to be short. She was born with hearing loss, has had one CI for about five years, and said it was the best thing ever! She was so excited to see Aiden with two and at such a young age.

We found out fast that standing in even a short line with Aiden was not an option. He's much more hyper than your average two year old, and keeping him next to us was not fun. This is where the Fast Pass and parent swap option came into great play. We only stood in lines with him that had immediate to very short wait times OR we had a Fast Pass for. They're heaven sent and I couldn't imagine our trip without them.

Everynight, one (or more) of the parks would put on a spectacular fireworks show. This was another area of concern for me, as I thought they'd frighten Aiden with how loud they are. They didn't faze him. It was either that he was so wiped at this point, or truly enjoyed them. Not once did he try and take off his CIs.

We spent a good part of each day at one of the parks, but always made time for swimming at the condo. Again, Aiden LOVES water and all we had to do was say, "Let's go swimming!" and he was taking his clothes off. We'd talk all the way to the pool about it ... water, swimming, pool, jumping in, floaties etc. Once we got down there though, he'd hand us his CIs, knowing he couldn't wear them in the water. I wasn't ready to try the Aloksak (that protect the CIs from water) that other CI parents have used and Lucas' mom talks about here. It made me too nervous, so Aiden went without sound while swimming. After the first day at the pool, I wish we'd of had them. Not only was it a great listening opportunity, but also for safety. He still had a blast. Next time though I think I'll brave it out and try them.

All in all, we had a great CI experience. It was nice to forget about all the appointments and stressors. It was much needed by all. It was purely MAGICAL to all. It also wore us all out, so now onto the more relaxing Summer O'Fun destination number two ... our FIFTH annual "Camping With Grandma" in Wisconsin and I can't wait!

Thursday, June 17, 2010

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 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.