One of Those Weeks

When we started this journey over a year and a half ago I knew I was in for some extremely hard work, sincere dedication, and definitely a roller coaster ride of emotions. Eighteen months ago I watched all these videos of deaf/hoh children and they provided me great hope - tremendous hope that one day my son would babble, tell me "I love you", yell at his siblings, all because he could HEAR through the miracle of Cochlear Implants. I know they say "EACH CHILD IS DIFFERENT .... never compare your child to another ... blah, blah, blah." I TRY MY HARDEST NOT TO, but how can you not.

I'm down on myself right now and I hate writing these posts, BUT, I think the reality of having a deaf/hoh child is that you have these days, no getting around them. I have reasons for being Miss Debbie Downer right now, which I'll get to. I truly believed that by the time my son was this age that he'd be further than he is ... because I've watched the videos, I've talked to moms.

I attend Auditory Verbal Therapy with him, I've put my career on hold and have become his full time mommy/primary therapist, I take him to an oral school so he can be around hearing peers for a language model along with their awesome language theme based program, I have a TOD and PT come to our house every other week, I read other's blogs and talk to other mommies to get ideas, I work, work, work, and work with my son (I mean PLAY, PLAY, PLAY), all to get these dang reports that make me wonder if I'm truly doing enough ... and now I'm finding out that we need to integrate even more therapies into our days ...

... and it is SO DAMN FRUSTRATING!

It all started Tuesday. Aiden has OT right after his class to help him with his gross motor skills (they don't have a PT program at the school, but still wanted to work with him). After his OT services, the therapist told me Aiden is having some fine motor skill issues and would benefit from at least an hour and a half of OT services per week. Great. Add it to the list.

THEN on the way home I open up the audiology report containing Aiden's soundbooth results.

NOTE TO ALL MOMS ... FOLLOW YOUR GUT! YOU ARE RIGHT! NO ONE KNOWS YOUR CHILD BETTER THAN YOU!

As I've written in the past, I was not happy at all with Aiden's last soundbooth/mapping appointment back in Sept. Going from 15-20 db across all frequencies to 25-30db was not okay with me. Plus I felt he just didn't react in the soundbooth like he normally does. I didn't feel good about any of it. I brought up my concerns with the audiologist (which wasn't his typical one), but was told things were just fine, he's doing great, 30 db is wonderful blah, blah, blah ... and I accepted it and went home, knowing my little rockstar had been at 15 to 20db since his first soundbooth after activation.

I then brought my concerns to his school audiologist to get a second opinion. She took our case history and got Aiden in the soundbooth as soon as she could, but he wouldn't perform. Then he had three ear infections, the flu, and respiratory issues all within the month. Finally last week, Aiden was cooperative, but she wanted to confirm her results the following school day - which was this past Tuesday.

When I looked at the results on my ride home my eyes just welled up with tears. I had known something wasn't right. Aiden flatlined at 40DB with his left ear, and with his right ear was at 30db/500hz, 55DB/1,000hz, and no response from there on out. My stomach hurt.

THE NEXT DAY (yesterday) we had an appt. at Hopkins with Aiden's primary audiologist and his school audiologist joined us there. His soundbooth results were better, but not much. The results showed he definitely needed some program changes, especially in the right ear where he was getting very little high frequency sounds. All I could think of was how we had to move forward ... don't think of the past, it was over.

Let's hope it's fixed. He'll be tested next week at school to verify he's still responding and then return to Hopkins in three weeks to check his maps again. We left there with four programs, one for noise, and two additional ones to work with if we feel he comes to another standstill. So glad his audi is back.

FAST FORWARD to today, parent-teacher conferences at Aiden's school. As we headed there, I read over the three page typed report from his teachers. There were A LOT of positives and he has transitioned well into a preschool setting. He likes school. But there's so much he needs to work on. A small example:

• Aiden does not yet respond to peers who approach him without prompts from the teacher. While cruising around the classroom he requires prompts to shift his attention to notice where his peers are and navigate his way around them.
• Aiden rarely turns to his name when called in the classroom (noise factor?) His teachers often have quite a bit of difficulty gaining his attention.
• Aiden is not yet finding items on request and requires physical prompts to follow routine directions.
• Aiden has difficulty attending to teacher directed activities even for a brief period of time (ex. reading a book).
• Aiden has very inconsistent visual attention to fine motor tasks which makes it more difficult for him to complete these tasks and sometimes requires cues to look at the toy while he plays.

I can't help but look at this, plus others that were listed and cringe. One part of me thinks I started him too early in school ... he should be at home with me. But then, how much farther would he be behind next year or the year after? The bigger part of me KNOWS these concerns need to be addressed now. He needs to start learning NOW to compensate for his hearing loss and learn how to be successful in an oral, mainstream classroom, with noise. I want him to learn these communication/cognitive/social development skills NOW as to not further delay him in his hearing and speaking.

All of this has been such a huge reminder that my child is DEAF and even with Cochlear Implants he is going to have challenges ... not just now, but always. and today, I.hated.it.

I couldn't take anymore. We did discuss ways I can work, I mean PLAY, with him at home to help in these areas, but I'm feeling so spent. We're all hoping that a lot of these areas are due to his not hearing very well the past couple of months and that this revamp in his maps will increase his activity in the classroom as well as with his language.

THEN on the way home I opened up his Speech and Language Evaluation. Why do I do this to myself?!? I'm not even going to go there now. I'll write about it after his IEP meeting next Tuesday. I'll just say they weren't great. Definitely not what we see at home and reinforced my son is having trouble communicating in a group setting.

To end my day, I had a Dr. appointment for Aiden's sister to start her on ADHD meds (this is after a full evaluation including IQ and cognitive tests etc). By this time though I was done with any type of "test" results. While we were there I had them perform a basic hearing test (beeps and headphones) ... I wanted to rule everything out. Well, she was at 20 db in her left and at 40db in her right?!?! The Dr. said it could've been an attention issue. The test took five minutes, I know she has trouble sitting still, but not for 5 minutes! I have an email into our audiologist.

To overcome the whole day, on the way home we turned up the tunes, and JAMMED the whole way home ... SINGING our hearts out. I needed that. and the glasses of wine haven't hurt much either.

the Good, the Bad, and the Ugly

the GOOD Aiden has added new words to his vocabulary list! He now says "meow" (without the /e/, so more like "mmmmow"), "hah" (hot), "buh, buh" (boat), "dah, dah" (duck or quack), and "En" for his classmate Ben.

He has even attempted to say his own name, is sounds like "Ay-en"!

Aiden continues to try to walk. He's going further and further, but just is not taking off. He can walk clear across the living room, will look at us, then fall to his knees. Frustrating but good that he continues to try.

He is trying to blow ... bubbles, a piece of paper across the table, my hair, anything. We've been working on this to help him with his "oo". It's hilarious! He either lets out a big ol' raspberry or has a wide round mouth blowing out, like sounding out the letter h.

He is trying to imitate us more, but mainly just the number of syllables. For example, for banana, he will say "ah-ah-ah" or pumpkin (and open and many other two syllable words) he will say, "uh-um" or "ah-um" and with each one he inflects his voice.

He's trying out /p/. I have been working on p since last summer! He's been saying "uh, uh, uh" (up, up, up) for some time, but I've heard it with that /p/ a few times now. We've been blowing a lot of bubbles lately too to help that /p/ POP!

His receptive language is growing. I really need to sit down and write a list.

He doesn't cry anymore when I drop him off at school! He smiles! This is HUGE!

the BAD Aiden is still stuck on the same consonants and same vowels. We have m, b, d, and sometimes n (although it seems we've lost it). Then put these with the his vowels of "ah" and "uh", and so consists his vocabulary list.

Even with all the HallOOwEEn sounds of /oo/ and /e/, still nothing. For /oo/ we get a deep, nasally /m/ and for /e/ we get that gasping for air sound.

Buh-buh (bye-bye) is just that and has been replaced with da-da. No clue.

We've completely lost the long o and long i that we'd hear every once in awhile.

The only Lings he'll use are /ah/ and /m/. Period.

He's still on the bottle. This is supposed to be only right before bed, but when Aiden wants a bottle he goes into the fridge, climbs up, and gets his own. I often find him sitting on the couch drinking his bottle. We had to put a lock on the fridge.

He's still not walking.

and the UGLY

Terrible twos 6 months too early ... the boy is out of control.

He's stopped sleeping through the night. Again.

He screams. Either a deep throat gurgly all out "AHHHHHH" or a shrill high pitched "AHHHH". His AVT thinks it's the boy in him. I'd like to take this part of the boy out of him.

We're working on the term "inside voice".

He's still not walking.

I have to say though that my little monkey makes me smile all.day.long. He has such a great personality, so much spunk, is such a little comedian, and truly is always happy (even when he is screaming, he laughs at himself when he's done ... he thinks it's funny ... I don't).

So there you have it ... so glad the "good" list is longer than the others! Although I have concerns with his expressive language and his maps, I do believe he's doing amazing. I look at him everyday and can't believe my baby is deaf. We have an appointment Wed. with our Hopkin's audiologist to hopefully clear up these mapping issues ... hope this adds more to our good list!

Halloween Fun

HaPpY HaLLoWeEn!!!

We started our festivities with a little bit of

pumpkin carving, or as Aiden calls it

"uh-un".

Ryan was feeling "too cool" to help out,

Kailyn ran the other way after a couple handfuls of goop.

but Aiden sat alongside daddy,

helping out the whole time!

TrIcK aNd tReAt!!!

We started our day making a bunch

of yummy Halloween treats.

Cupcakes, orange Rice Krispy Treats, and of course,

caramel apples!

Kailyn was my little chef, head of the kitchen

while Aiden cleaned up the mess. After taste testing all our yummies,

the kids got all dressed up to

go collect even more sugar!

Aiden's sister was a "good" witch,

which she reminded us of many times.

Aiden's brother put on his Yankees

jersey and hat and was an

instant baseball player.

Then there's my little monkey,

whose costume fit him perfectly,

in more ways than one.

(actually sitting in his stroller)

When we got home I went to change

and my little monkey immediately headed

to his favorite place - his sister's room

to find his own monkey business,

aka - up to no good.

The costume was definitely a good fit.

All in all, we had a

SpOoKtAcUlAr EvEnInG!

Hope you did too!

Walk4Hearing

The Walk4Hearing was this past weekend in DC. This is a walk produced by The Hearing Loss Association of America (HLAA) in an effort to end the stigma associated with hearing loss and provide support and resources for hearing loss prevention and education programs. The Honorary Chair for the DC walk was Reed Doughty, Washington Redskins #37! You can read about his journey with hearing loss here.

We joined Aiden's school's team a few weeks back to help raise money not only for the HLAA, but also for his school. Christian's mom started this team last year and so we jumped on the bandwagon this year to help raise money for such an important cause. I have to shout out that our team had two of the top earners of the entire walk (YAY Stephanie and Tina!) AND was the number one fundraising team raising over $8,000, with half the money raised going directly to our children's school! WAY TO GO TEAM!

This would have been our first walk ever, but we were home sick with the flu (hence, no pictures)! ICK! I was so bummed we could not make the walk, but with our temperatures finally under control and still not feeling too great, I couldn't risk taking Aiden out in the 40 degree rainy damp weather. I could barely make it up and down the stairs carrying him, I doubt I would've made it the short 3.1 miles. Needless to say, I was VERY, VERY bummed, but I look forward to the next one! I heard regardless of the weather, there was a great turnout and the DC Walk4Hearing surpassed their total goal!

THANK YOU! THANK you! thank you! to all of you who made a donation in support of Aiden and helped us make this walk a success for such an important cause! It feels SO good to help give back to Aiden's school and the HLAA, both of which have been tremendous resources in our journey to help Aiden hear! Your generosities are truly appreciated!

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).

Apples and Leaves

Sometime ago, I said I wanted to post on Aiden's blog the particular theme we're working on. I'm finally getting around to it and I'll start with what we're doing now then go back as time allows and post the others. I hope to keep these up as a recurring post everytime we start something new. This is good documentation for Aiden's journey, but I hope it helps others too. If you have anything to add (activities, songs, etc), please leave them in the comments section for all to see!

With fall in the air, what a better time to work on the two things that remind me most of this beautiful season - apples and leaves. We started with apples/fruits about a month ago, but added in leaves. We're slowly moving on to pumpkins/Halloween for our next theme.

Theme: Apples and Leaves

Vowel Variety: oo, yum, oh, wow, up, down, fall, ah, pretty

Functional Words in Phrases: cut, peel, more, bite, crunchy, smooth, down, uh-oh, eat, pick, pour ... etc.

Activities:

Play farm/store/baby with apples

Cut up an apple and look at the core, seeds, stem, apple slices

Use half the cut apple and apple slices, dip in paint, and press onto paper.

Make an apple pie and/or apple butter

Go apple picking and/or visit a Farmer's Market

Separate the apples or leaves into big and small

Go on a walk and watch the leaves fall from the trees and hear them crunch under our feet

Play in a pile of leaves talking/singing about throwing them "up, up, up" then watching them fall down, down, down and hearing them "crunch, crunch, crunch".

Collect all shapes, sizes, and colors of leaves then bring them home to use in song play, books, arts/crafts, etc.

Print out apple/leaf clip art to color

and ... climbing trees with dad

Books:

• Up, Up, Up! It's Apple Picking Time, by Jody Fickes Shapiro
• Apples, Apples!, by Salina Yoon
• Apples, by Gail Gibbons
• Leaves, Leaves!, by Salina Yoon
• Leaves, Leaves, Leaves!, by Nancy Elizabeth Wallace
• It's Fall!, by Linda Glaser

Songs/Finger Plays:

Falling Apples (to the tune of London Bridges)
This is Aiden's favorite song for both apples and leaves (just replace apples with leaves) I use real leaves and real apples and do the motions as we sing.

See the apples falling down,
Falling down, falling down,
See the apples falling down,
Down to the ground.
Pick the apples and throw them up,
throw them up, throw them up.
Pick the apples and throw them up,
Up to the sky

Applesauce (to the tune of Yankee Doodle)
Peel an apple, cut it up
Cook it in a pot, When you taste it
You will find, it's applesauce you've got!

Apples/All the Leaves are Falling (to the tune of Are You Sleeping?)
Apples are falling, apples are falling,
From the tree, from the tree.
Pick up all the apples, pick up all the apples,
One, two three. One, two, three.

Five Little Apples (similar to Five Little Pumpkins or Five Little Monkeys)
Five little apples hanging on a tree
The farmer didn't care
So guess who came to eat?
A caterpillar! Munch, munch, munch!
Repeat four more times using a different animal
(again, I use real apples and leaves and whatever toy animals/puppets I have. It's a lot of fun singing this with the names of people in your family too!)

We sing all these songs with props and Aiden is very active in it. He likes making the animals eat the apples and the leaves or picking up the leaves and throwing them in the air! Another idea is to use a felt board if you have one and use cut out felt apples and leaves.

With this theme, he's voiced apple a couple of times. I don't even know how to spell how he says it, but it's more of just the vowels "a - le" without too much of the /l/. I just can't get him to say that dang /p/! Whenever he sees an apple he does say "mmmmm" and rubs his belly! When I ask where the leaves are, he'll look up in the tree or throw his hands up.

Standstill

I'm looking for some advice and guidance. Aiden has been hearing for almost 7 months with his right CI and just over 5 months with his left, but I feel we're at such a standstill.

Aiden had a mapping appointment a couple of weeks ago. I didn't feel my usual warm and fuzzies leaving that appointment, but then again, Aiden's booth test results weren't what I was used to seeing either, not bad at all, just not as good.

His last mapping was the beginning of June, in which nothing was changed. Aiden's audiograms have been at 15 to 20 db, sometimes dipping to 25db, since each ear's third mapping appointment. This recent appointment (his fifth soundbooth since right activation and third soundbooth since left activation) he was hitting the higher frequencies at 20 to 25 db, but the lower and mid frequencies he was at 25 to 30 db. I know this is still good ... amazing in fact, but to me, it was a drop in over 10 db at some points.

When I brought up that his past audiograms were from 15 to 20 db (with a speech awareness threshold of 10db), she told me that they don't like to see audiograms at 15db because hearing with a CI can get distorted at this point. Is this true? And if so, why was it okay in the past that Aiden was testing at this level and all was great? (his current audi is on leave, so this was a new audi that I felt very comfy with).

I walked out of there knowing that 25 to 30 db is still SO amazing and also took into consideration that Aiden was not his typical "great, easy to read" tester. There is typically no question when he hears a sound, as he looks right at the speaker it comes from. This time, he played shy, hung his head low. The audi. said she could tell when he heard something based on his eyes.

So my questions:

• How often are your child's maps adjusted?
• Have you ever heard that it's "not good" to be at 15db or lower with a CI?
• How long do your child's soundbooth/mapping appts typically last?
• What should I be looking for at this point to tell if Aiden's maps need adjusting?
• LVAS/EVAS moms/CI users - do you see good hearing days and bad hearing days due to the LVAS/EVAS?
• Did you find your child went through standstills with language development?
• The only lings Aiden is repeating at this point are /ah/ and /m/. We hear very few /oo/ in his speech, but no /s/, /sh/ or /e/. Should I be worried about this?

The other reason I'm getting more concerned about his recent results is that he seems to be at a standstill with language. Last month we had a small language explosion - new sounds, new words, and all with good consistency. In the last few weeks, we've seemed to have lost it.

For awhile, he was always saying "mil" (milk), "ah-da" (all done), and "um-um" (yum-yum), among a few others. He's not saying these nearly as much as he used to. Then again, we've began to focus on new vocabulary feeling he had these others down quite well. He has picked up a couple new words, such as "baaaa" (for sheep), "mmmma" (for cow), and "bock bock" (for chicken - thank you Elmo). We've been working on these "new" farm animal sounds since day one though. The only new vocabulary he's even tried to imitate is apple, and that was just a couple times. It seems he's resorted back to his good ol' "mmmmm" for everything he wants lately. I hold out though and keep repeating "more" or "milk" or whatever word it is I know he knows, and sometimes, he'll eventually say it.

This is such a hard stage. At home, when I do the lings, he responds by pointing to his ear and saying "ah-na" (I heard that). So I know he's hearing them. I just wish he could tell me what they sound like to him. I wish he could tell me if something sounds funny. It just all seems like such a guessing game right now. Ugh.