Wednesday Workout - Self Advocacy

This is something we've been working on for quite some time and will continue to work on for years to come. For us, it's happened in stages, each stage equally exciting and ones you never forget - so exciting that it's baby book (or blog) material:

1. Does not tear off CI when put on - actually wears it most of day showing he LOVES to hear.
2. When coil falls off, puts coil back on without assistance - showing he LOVES to hear.
3. When whole CI falls off onto floor, actually PICKS it up and brings it to you to put back on - showing he LOVES to hear.
4. ASKS for CI first thing in the morning or right after bath - showing he LOVES to hear.
5. When processor portion falls off ear (coil still connected), comes and says, "My CI! Help please." - showing he hates the feeling of it just dangling ; )
6. Tells you (with words) that the CI has turned off and is not working (although still on ear and coil attached to head) - showing he LOVES to hear.

and not that it ends there. Not even close. In fact, that's just the beginning of true self advocacy - truly letting people know, "Hey, I didn't hear you" and it has to start now. I don't want Aiden to be shy about speaking up for himself. I don't want him to feel apologetic for missing a piece of information because he didn't hear them. If he's having technicalities with his CIs, I want him to speak up and seek out the help he may need to get that technicality fixed. If he's having trouble hearing due to where he's sitting in class, or standing in a room, or whatever the reason may be, I want him to feel comfortable, not embarrassed, to SPEAK up for himself.

Unfortunately, Aiden has come home a few times already this school year with one of his implants OFF. Yes, OFF. We have Aiden's lights turned on for this reason - if they're blinking fast - he's good to go, slow - something's wrong, off - the CIs off. This is all documented in his notebook, with each error code, what the error means, and how to troubleshoot it. I've also met with his teacher before school started and gave a quick demo on them. It's hard to say if it turned off on the bus, was never turned on appropriately after nap (oh the thought!), fell off, and while the teacher or aide was putting it back on it turned off (not totally uncommon when putting it on - that's why it's important to do a quick ling check or check the lights), etc. I've talked with his teacher each time about it, but if it happens again, I will call the principal and ask to come in and explain Aiden's CIs to everyone who he is with throughout the day.

in the meantime ...

I'm teaching Aiden, that HE needs to tell the teacher or the aide or whomever he may be around - "HEY, my CI isn't working."

note: stop the music to the right. sorry it's so small too!

so proud!

today

today I went in to meet with Aiden's SLP to review his latest articulation test results.

 (Ling Phonetic Evaluation and The Goldman Fristoe). 

HUGE difference from May to September. 

YAY buddy!

today I learned that even though Aiden's making great strides, there's still a lot of concern

 about his articulation when imitating a sound using a simple consonant-vowel (CVCV)
syllable structure (ex. ba-ba),
particularly with the /oo/ and /ow/ vowel sounds
and /w/, /f/, and /h/ consonant sounds.

today it was reiterated to me, that although Aiden can say most of the phonemic sounds in isolation, 

he struggles getting them correct when spontaneously using them in words

 (without imitation), mainly with multi-syllabic words or in simple sentences,

  and in all placements - initial, middle, and end. 

We know he's hearing them, as he can imitate any sound back, 

but when putting the sounds together, he gets "tongue tied" 

aka problems with motor planning.

today his SLP voiced concerns about his balance 

and that on some days she has to hold his hand all the way back to the classroom

 as she's scared he's going to fall. 

I know he has good and bad days, but I've never thought he was about to fall over from walking. Maybe I'm "too" used to it. 

She asked if we thought about getting him evaluated from a neurologist.
deep breath.

today I reassured myself, that all in all he will be okay.

with a great SLP at his school working on his articulation, 

and a great AVT working on his language and listening, 

and a great OT working on his overall praxis/motor planning

 WE WILL GET THERE!

today I observed Aiden in his classroom (he couldn't see me). 

I love watching my boy in action. He was quite quiet, sorta stand-offish. 

He seemed withdrawn,
he said "I want applesauce" perfectly at snack time.

My mind was being very critique"ish" as I watched.

I like his school, but I don't LOVE it, 

and I don't like that feeling. 

today as I sat there and watched him I held back tears - okay, tears flowed.

 I know he's come so far, but it just seems to be one thing after the other lately. 

We work SO hard with him. We have SO much to work SO hard on.

 So much to do, so much to take in.

 It's time for his break.

today his teacher came in and talked to me as I observed. 

She had great things to say, 

"He's so smart, he knows all his letter sounds, he's such a happy kid, he's so sweet.

 Yes, it's hard to understand him and he can be quiet, BUT we're working on that."

I know.

today I told his teacher I needed copies or names of the songs/poems they learn, 

so we can sing them at home. I need to know what they're doing

 on a daily basis so I can talk to him at home about his day at school. 

I need more, so I can help them help him.

today he was also tested by the school's OT, which I also observed.

 It was hard watching all the other kids leave the class to go play while
 he sat through yet another test for the possibility of yet another therapy.
He's getting one hour a week of a private OT outside of school,

 PT once a week at school, and now they want to add OT to school once a week too. 

I'm going to think about that one.

today his teacher suggested that we take that OT spot at school
and that it happen during recess so he doesn't
miss out on language activities in the classroom.
miss out on recess?
he's three.
I just thought about it.
and I think we'll just stick with his private OT, whom he loves.

today I showed his teacher and the OT his Thera-Tog aka Super Mario suit and how it works.

 He's not too fond of it, but once it's on, seems to be okay. I haven't put it on for school yet, 

as I'm not ready to tackle that fight every morning before the sun's even up 

AND it usually takes bribery of chocolate to get it on. 

Hmmm, chocolate for breakfast. Sure, why not.

today I tried to sneak out of the school to go have lunch with my hubby, 

but a little someone saw me before I left.

today it's raining.

today was a reminder of how far we've come,
yet how far we still have to go.
you know, one of those bitter-sweet,
want to cry, but should rejoice, type of days.

today I took that certain little someone out of school early, 

sang the awesome CD from JTC all the way home, 

and had a great lunch of pb & j with my little man. 

today I made chicken and dumplings in the crockpot. 

Perfect warm the soul food on a cold rainy day.

today is the perfect day to get in a good long snuggle with that perfect little someone,

just the Rx needed.

Ten on Tuesday

1. Aiden had another audiology appointment this past week. They tested him in the soundbooth to see how well he was hearing with his new maps. Unfortunately, Aiden does not like the booth and shows his control. He was not very cooperative. His audiogram looked okay, but I know he was hearing better than what he tested. For example, he finally responded at 40 db at 4,000 hz, yet can imitate the /f/ and /s/ perfectly. We decided not to make any changes and check again soon. Deep breath.

2. The day after his audiology, he had AVT. We haven't seen Dr. Don since June (due to JTC and other family trips), but he warmed right up. We're back on track to three AV sessions a month. I'm excited to get going again, just not excited about all the driving. Ew.

3. Just Aiden and I went to his appointments (2 hours away) since my oldest two had school and weekend activities. Saturday night was girl's night with four of my sister-in-laws, my mother-in-law, yummy food, laughter, and lots of wine. Just what I needed. Love them.

4. I made it home in time for Kailyn's first volleyball game. It's more like a eight week volleyball camp. This program is amazing! The girls are all 5th and 6th graders, broken into 6 teams coached by girls from the HS varsity team. They'll stop in the middle of a game to guide the girls. Everyone plays, every hit is followed up by a "Great job!" or "Good try, now let me show you this...,", and no one feels silly for not getting their serve over the net (seriously, I don't think I could get it over). Love it.

5. Ryan starts lacrosse this week. Just practice. The season doesn't start until THE SPRING! Yes, they will begin practicing now, conditioning this fall, participate in an indoor league, then full on practice after Christmas - all in preparation for the Spring season. Insane, but good.

6. We have deemed Thursdays, THERAPY THURSDAY for Aiden. I'm going to keep him home from school all day since he has OT in the mornings and AVT in the afternoons. Alone time with my baby!

7. So between #4, #5, and #6, then throw in PSR (Parish School of Religion aka CCD), Kailyn's soccer, and Ryan's TeenLife, the crockpot is about to become my best friend. Favorite recipes?

8. Yesterday Aiden had a slight fever so I kept him home. So he was out last Thursday for OT, Friday for audiology, then again Monday. I have to admit, it was really hard to send him back today. He's become a mommy's boy all over again, constantly wanting to snuggle and hug on me, and I'm secretly loving every minute of it. Before I know it, he'll be all grown up, and I'm not ready for that.

9. I sat back today and watched Aiden play house and bus. It was amazing. I was in awe as I listened to him mimic his bus driver and two friends who ride with him. Then at "home" he talked nonstop as he set up the "batroom", "tichen", "wiffin room", and "bedroom" and moved everyone around. Before I knew it, he had the cake on the table with everyone sitting around and EVERYONE got to blow out candles after their song. I cracked up as he sang, "happy birfday daddy, CHA-CHA-CHA, happy birfday daddy, CHA-CHA-CHA...".


10. Resume = still not done = still have no clue what I want to do = stressed out momma = need to find something flexible/work from home because my life is WAY too busy with THREE kids and all their business to go to work in an office 8 to 5 = I really don't want to go back to working full time because I LOVE being a mom and staying home with my kids, YET, I want to help provide more for my family and it would feel nice doing something I enjoyed. If you could work from home, what would you do?

Wordless Wednesday

 my loves. my life.

Ten on Tuesday

1. I have been very busy trying to put together an updated resume, not an easy task when you've been out of the workforce for over three years and the whole look of them has changed. I think I have gained more experience from what I've done the past five years (including the two years of taking care of my dad), than I have my entire professional life.

2. What makes it even harder is what to pursue!?! There are so many teacher lay-offs around here they've already planned for next year's! AND I just heard today on the news that they may base those layoffs on how well the teacher's students perform on standardized tests. Because you know, it just doesn't matter if half the class doesn't get it, it's time to move on because we have to stay on the "teach to the test" schedule. No thank you. ugh.

3. Speaking of ugh, poor Kailyn (5th grade) has had over two to three hours of homework A NIGHT since school started. After a week and a half of it, I scheduled a meeting with her teacher to "review" her IEP and make sure it was being followed, discuss K's performance in class, as well as to set up a team plan to help Kailyn be successful.

4. Aiden's literacy skills are taking off. He loves making the different sounds letters make. He's starting to put these sounds together to spell words - seriously. He knows how to spell cat, cow, mommy, Aiden, and dad and is identifying many written words in isolation (star, car, house, boy, girl, ball, love etc). I think he'll be reading before kindergarten. I write him a note on a napkin everyday for his school lunch and his teacher told me today that he read it to her! It said, "I love you Aiden! Love, Mommy" (out of memory, but still! ; )

5. Another thing Aiden loves to do lately is look at everyday objects and tell me what shape they resemble. For example, the other day he pointed at the fresh sunflowers in a vase and pointed out how the middle are circles or he'll pick up the cereal box and say "two rectangles" (front/back). He does this everywhere we go.  Out of nowhere I'll hear him say, "triangle" as he points to the roof of a house, or "mommy look, circle", as he points to the tires on someone's car. My future engineer.

6. This week we head back to Cleveland for another audiology appointment - this time we're going straight to the booth to see how he's hearing with his new maps, hopefully it will be short and sweet. Then on Saturday we start back up with AVT after taking the summer off due to all our travels.

7. I have received so many compliments this past couple weeks on Aiden's speech. His OT saw a difference within a week's time (both in speech and balance) and said, "He sounds so much clearer."  His speech therapist from school called to tell me, "I can't believe how far he's come over the summer! It's night and day!" I've even received a record number of compliments from complete strangers. LOVE IT!

8. For my birthday, my mom bought me this. Best.Birthday.Present.EVER. So far, I've read this and this and I can't wait to start this , although I'll need a good fiction one to go with it. Suggestions? AND, there's always a daily deal AND I found out you can SWAP books with other owners!!! Loving it.

9. This past weekend I had a cold that put me down and out like no other. I did something I rarely do, and I did it for two days straight - ABSOLUTELY NOTHING - and I'm proud of myself for it. (ok, I cleaned a bathroom and vacuumed downstairs the first day before I started doing NOTHING, but then I felt better about doing NOTHING ... don't say it, I already know).

10. It's eleven pm, the house is silent, and I'm off to beat my latest game addiction on my new iPad - my other best.birthday.present EVER from the loves of my life.

Wednesday Workout - Cheap Therapy

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

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

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

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

and some auditory goals:

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

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

Aiden creating his own pattern

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

ALL FOR A BUCK.

Out of the Booth Audiology

Here is a more detailed account of our recent "out of the booth" experience at the audiologist's.

In the past, Aiden's mapping appointments always started with him in the soundbooth - test lings, create audiogram based on his conditioned responses using pure tone audiometry (or sometimes warble tones), measure speech recognition (repeat for each CI separately, then together). Then head back to the audiologist's office and adjust CI programs based on new audiogram and parental feedback of ling checks, voice quality, spontaneous language use etc.

This appointment went more like this (I'll do my best to explain it, but let me preface by saying I am by far not a professional audiologist. I know enough about mapping to be dangerous and explain it to the best of my knowledge.)

• FIRST - changed maps based on Neural Response Telemetry. (background if you'd like: Aiden's implanted electrode arrays each contain 22 electrodes, each one delivering different loudness and pitch of sound to his auditory nerve then onto the brain. The NRT provides an objective measure of how his auditory nerve responds to the electrical stimulation produced by each electrode. This provides the audiologist with initial programming parameters.)
• I had learned from another audiologist that they typically see a common shape on the maps based on NRTs.
• Aiden's "old" map on his right CI was very similar to this said "commonality", and to his NRT.  There were no neural responses in the high frequencies (in which she calmed me down after a brief mom freakout and helped me understand that just because there isn't a response to some electrodes, doesn't mean he isn't hearing the sound - in fact on his right CI, there were only THREE responses out of the 22 electrodes. She reassured me that this in not uncommon and that older CI patients reiterate they still hear  sounds where electrodes show no response). So, based on our personal observations and his audiogram from JTC (30db@4000hz), she increased high frequencies too.
• For his left CI, there were more drastic differences in his old map vs. this commonality AND his NRT results, especially in the low and high frequencies. We did see a lot more responses across all frequencies from this NRT, which went hand in hand with this "common" map shape I was told about. His lows here were very sporadic and were made more "fluid" and the mid and high frequencies were both increased.

• AFTER, changes were made based on NRTs, we talked to Aiden about things sounding "too soft", "good" (thumbs up!), or "too loud", and we showed him a picture of monkeys demonstrating each. She would then bump up his levels, across the board, little by little. I was very apprehensive of this, as he is only 3 1/2 years old, and wasn't quite sure he completely understood what kind of response we were looking for. Low and behold, he seemed to be pretty on target instead of all over the board with just "choosing" whichever monkey. After a couple increases, he would immediately cover his ears and say, "it's too loud". Very small changes were made based on this. 
• FINALLY, she tested him based on his phonemic awareness that ranged across all the frequencies for each CI. For example, he had to imitate back /p/, /t/, /k/, /d/, /g/, /b/, /m/, /n/, /f/, /s/, /sh/, /v/, /z/, /ch/, /dg (j)/, /y/, /l/, /r/, /h/, /l/ and all long and short vowel sounds, including diphthongs. (all the sounds noted are listed as you and I know them - not as a speech pathologist writes them ; ) )
• With his right CI, he repeatedly imitated /k/ as /p/, /f/ as /s/, and /g/ as /d/. After making a few adjustments, he said each one pretty darn perfect.
• With his left CI, he repeatedly imitated /f/ as /p/, /g/ as /d/, /p/ as /t/, /k/ as /t/, and he was very closed mouth with the short i and e. Again, after adjustments, he was saying each one beautifully!
• /v/ was hard on both sides and we couldn't get him to imitate it, but at one point he was pretty close. We also could not get him to reproduce /n/ for the life of us (kept reproducing it as /m/; they overlap each other on the speech banana), but he does not seem to confuse them in his speech (besides the word "milk", which he says "nilk"), which we'll keep watching.

After all this, we would ultimately bring him to the soundbooth, but after two plus hours, he was spent. We are heading back in two weeks for a new audiogram. I can say though, that the days following, I'd sporadically ask him how things sounded, and before I could get out the choices of too soft, good, or too loud, he'd throw up his thumb and tell me, "good!"

During the whole appointment, my little monkey entertained. What cracks me up is he knows he's funny and laughs at himself. A few times throughout, his audiologist would cover her mouth and tell him to listen, and before she could get anything out, he'd yell out, "ah, oo, ee, s, sh, m" then laugh and laugh. Or she'd say a letter sound, and instead of imitating it back, he'd tell her what letter it was, then laugh some more.

Little stinker.

After four days with his new map, I still see very good changes in his speech, but he still sounds very jumbled when putting more than two or three words together. Even though his technology definitely needed a good tune-up, he still has motor planning challenges, which is why we will continue on strong with OT. As Aiden strengthens and overcomes his praxis challenges, we should also start to see an increase in his conversational speech. I think this is going to be a GREAT year for him!

High Expectations + Hope & Faith = Road to Success

I think we're finally on the right track. I finally feel like we're getting somewhere. I finally feel like the light is getting brighter; like our team is complete and that everyone is on the same page, on the same team.

After two plus years of trying out a couple OTs to an evaluation from a different OT to being told he's fine, we have finally found a PHENOMENAL one who truly specializes in sensory processing/sensory integration, which both go hand in hand with Aiden's whole body motor planning/vestibular/proprioceptive/praxic challenges. But more than this, I found one who LISTENS. I was beginning to think I was a crazed mom with too high of expectations that people looked at like, "you're kid is really fine lady", until I went to JTC, and they concurred with me, plus some. Then I came home and was presented with Miss Amie (whom, btw, is not only the best OT ever, but Aiden also receives "free" speech therapy as she makes him talk - imagine that!) She gets it. She sees it. She works him. She works me. I'm understanding more. I get it. I now see why OT is the "fun" therapy. I also get homework every.single.week. I knew she was out there. I LOVE her, but better yet, Aiden loves her.

 

Aiden in his Thera Togs aka "Super Mario Suit"

AND

After two plus years of searching for a consistently good map for Aiden, I think we have finally found the strategy that will work for HIM. It's based on phonemic mapping, not mapping just based on pure tone audiometry, but based on phonemic awareness. Amazing. I learned about this from seeking out an audiologist from this clinic in San Diego. I heard about them from our former AVT, Miss Becky, after she heard we were possibly looking at an apraxia diagnosis. She knew we always had trouble with Aiden's maps and expressive language, so she suggested I contact this clinic. Which I did; which I spent countless hours on the phone with them understanding their mapping theory; which I loved and which made sense. But I knew a trip to San Diego every three months for mapping appointments wasn't fathomable, not out of the question, but seriously expensive. I called Aiden's audiologist and her words to me,


"I will do whatever it takes to get Aiden on track to be successful. I will talk to them, we will get there."

Yesterday was our first mapping appointment utilizing this new technique. One word - AMAZING. In less than 24 hours, I hear a difference in Aiden's speech - it's CRISPER, the ending sounds on words are CLEARER (including the /t/ and the /k/ and the P!) My boy said Fish and LeaF.

OT will work on his motor planning; a new mapping strategy will get his maps back on track. Between the two working together, I see the light. My hope has been reenergized. I finally feel like we're not stagnant, but the train is moving forward and everyone's on board, as a team. I can't wait to see what's around the corner.

I have more details on both, which I will get to, but to end, what I've learned is,

never give up; I will always strive for what I know best - MY CHILD - because I am his biggest advocate - and honestly, can my expectations ever by TOO high? Never.