Not a cow!

I haven't been writing as much lately as I have been busy enjoying summer! I am loving the lack of driving, being able to do some gardening, and going on a family trip!

But there have been a couple things that I wanted to note as milestones. First, Peter can now put his headpieces back on himself! This is huge, as it gives him more control over his technology and how he uses it.  He sometimes wears his Naidas (behind the ear processors), but usually my feisty, active, rough housing guy is sporting his Neptunes in pockets on his shirt. The cables are threaded through a buttonhole I made in each side of the collar, so if he knocks the headpiece off, it just dangles. Now he can get it and stick it back on, though usually with the cable pointed up, and his hair extra crazy ;)

Also, Peter has been asking for his ears (or the shirt with the CI's in it) in the morning and after nap!  Now, it isn't 100%, and there are still plenty of times during tantrums when he takes his ears off, but in general he is great about wearing them, and I am so happy he is asking for them!

Finally, a glimpse of how much CI kids really can overhear and learn naturally: yesterday we walked to the dog park with my mom, and Peter was walking with me, at least 10 feet back (outside, with freeway and other car noise nearby). My mom told her dog to stop eating grass, that he wasn't a cow. Today, on a hike, Peter looked down at Guiness (my mom's dog), who was eating grass and blocking the trail, and yelled "Not a cow!"  At first I was confused, then I realized why he was saying it, and I just laughed! So much speech therapy is focused on auditory memory, so it makes me worried I don't work on that enough, but when he overhears an expression one day and uses it correctly the next it makes me feel like he is on the right track, and will do just fine.

I will leave you with a short clip I filmed before the end of of school. We obviously watched Frozen a few times!

One Year of Hearing!

Today is the first anniversary of Peter's first activation. I am hoping to film him and add that, but unfortunately he seems to have come down with a cold and is not feeling great, so we will see.

This last year has been intense, to say the least. Peter is doing so well, even better then predicted, so I can't complain. As much as I hate being so busy and driving so much each week, I am overjoyed about the results. Right now we have 2 mornings of Oral school (class is 9:00-11:30, with 30 minutes of that time with a speech therapist), one morning with a 45 minute Music Together class followed a 60 minutes AVT session, and occasional play dates at the School for the Deaf to see ASL in action. I had given up on the county services because they were so depressing, but they are revamping the program starting with summer session, so I might see if it's any better.  I don't think you have to do as much as we do to be as successful, but I don't want to cut back on what seems to be working for us.

Peter's vocabulary continues to grow weekly, if not daily, so it's impossible to keep an accurate list! I will add a document showing signed and spoken vocab growth over the last six months, but since I did it for his birthday it is already out of date ;)

Two-word combos are frequent, three words are coming along nicely ("Where mama car?" Or "Where red vacuum?" for example). Peter has some great listening skills- last night from across the room and up half a flight of stairs he heard the door open and shouted "Hello, Daddy!" As my husband came home. He said it so clearly my husband thought it was our 5-year-old daughter!

Current obsessions: the Music Together song "Hop Ol' Squirrel", watering things with the spray nozzle of the hose (sisters included), opening doors, or just shouting "open!" when he sees doors, clocks ("Tick-tick, tick-tick!!!) and identifying people who are crying (and if it is his sisters, making fun of them for it !)

Below: one poorly filmed, hastily edited video snapshot of where we are.

Right now I feel like we are in the middle of scaling Half-Dome. The climb is not over. We are securely tied in, and I don't think we are going to fall at all, but there is still a lot of hard work to do. We will pay for one more year of school, and we have one more year of coverage for the AVT therapy, then we are in the hands of our school district (which is tiny, and I don't think they have ever had a CI kid, and maybe not even any deaf or hard-of-hearing kids). I feel like that set of transitions will be like stepping off of Half Dome, so I had better get to the top before they happen ;).

This week's video check-in

I need to write more, but I need to do a lot of other things more, too ;). Like cleaning my house, finishing projects, or taking showers. It's pretty sad when I am thinking to myself...I gotta try to get a shower at least every other day. Thank goodness I have been too busy to get my haircut and I can put my hair in a ponytail ;)

I am going to make time to update Peter's word list, as a couple therapists have asked for one. And I make time to do these videos, since they help the therapists see what Peter is like in a more natural setting. He will talk to the speech therapists, but not nearly as much as he does at home, and they can sometimes hear or see more on the videos than I can. The videos also show everyone on Team Peter that all the input is paying off!  In this video "I Want" is starting to emerge!

Just a note about how I do the videos- they are shot on my iPod or iPad, often with the forward facing camera, and then quickly edited/titled with iMovie on my iPad.  That app was a great purchase!

Video Check-in

Thank goodness I don't get fined for late check-ins on the blog! I am trying to keep up recording progress and what is happening, but it's hard! The last two weeks we were hit with kidney stones (my hubby) and the flu (everyone else) , busy work, late meetings and oral surgery (hubby), keys locked in the car after speech therapy (Peter and I were outside the car), and then the fun stuff, too- making Halloween costumes for the girls, and me teaching French again. But it has added up to me being busy, and wondering how badly I'm failing something or someone at any moment.

But we are now all healthy, and Peter seems to be doing great!

Note that this video was made using a treat- I do not force him to talk for food! I want to make communicating fun, and what is more fun than chocolate ;)
And puppets...

iPad Apps We Use

Here is a list of the Apps I am currently using with Peter:

Speech-related:
SoundTouch (pairs real pictures with real sound clips)
MusicOBaby (interactive instruments on the iPad screen)
Musical Hands (easy to play colored screen for sound awareness)
The Farm (easy farmyard games with animal sounds)
Bugs & Bubbles (right now we are only using the colored-bubble popping part, but it's good for practicing "bubble" and "pop"!  My girls like the other parts of the app)

Monkey Preschool is not used by Peter, but he is VERY interested when Samantha plays it. I swear I heard him say "mmmm" when she turned it on last time!

Fine motor:
DoodleBuddy (free, and great for finger painting with no mess!)

Sign Language:
The Baobab (a beautifully illustrated written and signed story)
Signed Stories (a whole library of ASL-interpreted and read-aloud stories. Peter loves "Five Speckled Frogs". I have fun taking the ASL quizzes based on each story :))
Not used as much:
SignShine (signed, but not illustrated nursery songs)
Baby ASL (good for my girls to practice on)


I am always looking for more fun, smart apps. If you have any you love, let me know!

Animal fun

A couple videos to show what we have been working on. We are giving everything a sound, and labeling sounds. One example is saying "walk, walk, walk" when moving a toy. We have used the phrase at home with animals, and in speech therapy with Mr. Potato Head. And here is what happened:

And farm animals are always fun, and we have so many versions of them-Little People, vintage Fisher Price, puzzles, books, puppets, etc. so it is easy to expose Peter to lots of repetition of the same sounds in different ways. The following video has times where Peter isn't saying anything, but I kept the wait time to show a little about how much I have to model and how long I have to wait. Any signs in the video are spontaneous.

Ahhh for Airplane

Just a quick video check-in!

Have a great week!

School Days

We have enrolled Peter in a non-public school that specializes in aural rehabilitation for deaf children. Most kids there have Cochlear Implants, but some have hearing aids, and there are also quite a few "hearing peers" (mostly teachers' or therapists' kids) mixed in. This school has students from all over the SF Bay Area- I have heard from parents who commuted from Monterey and Berkeley. The school said there had even been some from Marin, which seems really far away, but I don't know if its a worse drive than Monterey. Right now I know of families coming from Santa Cruz, Fremont, and me from my mountains.  So this school has got a good reputation, and draws from a pretty big area.

 A lot of people get their Early intervention programs to pay for it, since their EI departments don't have the training to help CI kids.  Santa Clara County has a program.  I can't speak to the quality of the program until I have seen more, but they have one, so they won't pay for anything else. So we are footing the bill. Is it worth it? We will see. There are some things about the school that have nothing to do with classes that I wanted for Peter- things like seeing loads of other kids with CI's, and having friends who also have CI's. I was hoping to meet other parents, and expand my support network.  I was willing to spend the money to make sure Peter had experienced teachers and therapists. So what does a day look like at this school?

Today we arrived about 10 minutes late- thanks to crazy traffic, a three car pile up (off on the left, but still slowing everything down) and a motorcycle-car incident (motorcyclist hit the car, I think- he was standing there looking embarrassed).  I bring up the commute because that is the one thing I really really really don't like.  But we get there and go to Morning Music first thing. There is a half hour of music for everyone- lots of classic kid songs, mixed with some just for the school, and some dance music once in a while. Last Thursday the woman who leads had a fake chicken and did the chicken dance- Peter was shouting "la la la" right along with her! After music each class is sent off to their room.

9:00 Circle time - I guess some classes start with free play, supervised and narrated by the teacher and an aide, but Peter's class all just head to the chairs first thing. There is another boy with hearing aids, a little girl with normal hearing, and Peter. The little girl has only spoken Spanish up to now, but she is learning English quickly. During circle the teacher does things like blowing bubbles, but it isn't just bubbles. First she gets two bottles out, and asks them which one has bubbles in it, based on weight (if they hold it) or looking in it. Or she has ice cream cone shaped bubble bottles and has them pretend to lick to increase awareness of their tongues. Then she tries to get them to ask for the bubbles to be opened with "O!" Or "open" or "open bubbles please" - depending on where they are in their speech development. Peter is slowly warming up, but until today he was just very observant, and didn't participate as much. Then they try to blow the bubbles, ask for more (mmm, or more, or bubbles!) and eventually say bye-bye to the bubbles. Then we do songs, and the kids then use a pointer to see if they can match up a picture to a song.  We also talk about who is there, and today we also talked about the mommy and daddy of each child in class. The teacher and aide do most of the real talking, but they are really good about waiting to see what the kids will say, and praising them for talking.

9:30 Peter and I head to another room with our Speech Therapist for our 1/2 session. The class does snack while we are gone, talking about colors, textures, crunchy, flavors, more, etc.

10:15-10:45 After our therapy time the class has about 1/2 hour outside. The adults narrate some of the play, but also give the kids a chance to just run around or dig in the sandbox (Peter's favorite thing outside).

Back inside there is some guided activity- today it was stories, then a monkey tree toy, then using cut up maradi gras necklaces like noodles.  Lots of auditory input, sensory stuff, and so much individual attention. But most important to me- Peter is having fun while learning.

11:15 we do a quick cleanup and a goodbye circle with more songs and pictures. We head out at 11:30.

I like that Peter is getting so much attention, and there is a lot to be said about "monkey see, monkey do". Peter will mimic other kids much faster than he will mimic me;)

An idea of our busy schedule

Monday:
8:15 - leave home to drive to local elementary school to pick up my preschool carpool kids
9:00 - drop off preschoolers and drive to Early Start school
9:30-10:30 Speech Therapy provided by Early Start
Free time (park? Story time at a library? Coffee with a friend? Errands?)
12:30 - pick up preschool carpoolers and deliver them back home.

home in the afternoon (refrain)
1:00 - 3:00 Peter naps
3:15 -Sydney gets home (except Wednesdays, it is between 1:45-2:00)
Homework, bath, dinner, cleanup, choosing clothes, storytime and lights out :)
And every night I have to pack lunches and snacks for the next day, as well as making sure the batteries for Peter's CI's are charged.

Tuesday:
7:00 - leave home to drop girls off at carpool mom's house
7:15 - start drive to Peter's school
8:15 - Peter is tired of the carseat and starts to scream
8:30 - arrive at school (I will detail a typical day there in a separate post)
11:30 - school ends, get snack/lunch for Peter and start driving back south
12:30 - pick up Samantha and maybe one carpool buddy to take home
Refrain

Wednesday:
9:00 - leave home for music class
9:30-10:15 Music Together (so fun!)
Snack, drive 20 min.
11:00-12:00 Speech Therapy paid for by our health insurance
Drive home 30 min.
Refrain

Thursday:
See Tuesday

Friday:
8:00 - leave to go to School for the Deaf if there is a play date
8:30 - leave to go to Early Start Playgroup if no CSD play date.
9:00-11:00 Playgroup
Maybe time for an errand, otherwise just head home
Refrain
4:30-5:30 Teletherapy through BabyTalk program

And then I am a tired little heap on the floor, and my car needs another full tank of gas...

I will evaluate everything in December to see if we keep going like this, or drop anything that isn't worth the time/effort to do it.

Recovery well under way!

Here we are, six days post-op, and Peter is 90% back to himself. He still has steri-strips over the incision, and he is a little more cranky than usual, but not much. He also has a new molar poking out, and two more close behind, which may be more the cause of the crankiness than the surgery. For the most part he is just doing his job (his title around here is Rascal). Two weeks to activation!

More videos, showing progress in speech AND signing :)
First, bunny fun (I apologize in advance for the singing)

Next, the Stair Climber as speech therapy ;)

And finally, a little safari vacation ;)

Thanks for watching!

Video check-in

I just wanted to post a couple videos that I think show how much Peter is gaining in terms of sound, and language. I am so proud of my little guy! Not even 3 months post-activation, and he has so many new sounds!


Also, he is signing up a storm!

For myself I need to post a list of signs he knows, but not tonight! Maybe something to do in the hospital during CI Surgery #2, in two days! (Aaack)

A few new things

First, a new tooth! Just shy of 14 months Peter got his fifth tooth, a lower left incisor. It wasn't even one I expected, so my tooth predictions are at an all-time low :/

Second, a sign for UMBRELLA.  Peter signs it by bumping the backs of his fists together a couple times.  But he is consistent, and usually looking at an umbrella when doing it, so I know that is what he means. We went to a kiddy zoo with some deaf friends and their deaf babies, and one mom whose baby is just a year old, asked if Peter was signing yet.  I replied, lots! Her little guy is still just soaking it up, but not signing yet. While I know Peter does not get nearly the amount of fluent ASL her son is getting, I was so proud that I could talk about all the signs he already uses!

Third, the "mmm" sound!

After Peter ate some baby food he was playing with the clear plastic lid. I kissed it, mashing my lips into it and said "mmmmmmwah!"  Peter thought it was hilarious, so I did it more, and look at him go! I will gladly make a fool of myself for results like this!

Receptive Language?

Two cute things that made me so hopeful- first, every speech therapist wants us to get Peter to imitate us, but he hadn't for so long. Then the "magic microphone" was suggested. This is where you use one of those spinning LED toys, and pretend it's voice activated. I was skeptical, but willing to try it. When we first tried it I said "ahhh" and lit the toy up while my voice was on, then I passed it to Peter- nothing. Then I demo'd it, then Sydney, then Samantha. After several silent turns Peter finally stated saying "ahhh" also!!  For anyone who has a normal hearing child this may seem really trivial to get excited about, but since my little guy had no way to hear himself before getting his cochlear implant,  now that he is starting to mimic sounds it shows that the technology is helping him!

The second thing happened today. At gymnastics I asked "where is Sydney?" I did not use sign, as I had Peter and other things in my arms. Peter held up two fingers and his thumb to his face and then pointed to where Sydney was sitting behind some other girls.  Those two fingers and thumb? It was the sign for BUG (Sydney's nickname, and the sign we use for her).

 Maybe he heard and understood me? Lately he has also been looking for and signing CAT when I say "Hello, kitty!", but he is so aware that he could spot the cat before me, so I am never sure if it is my voice and words, or the sight of the cat he is reacting to. But I am starting to think he might recognize the words!! And that new sound "kghghg", it could be a hissing, like my girls do when they play cat, or maybe he is starting to try to say kitty. All very exciting for me :)
ASL for cat pictured below, but Peter just uses his pointer finger and flicks it on his cheek.

New Signs and Sounds!

Today I was getting out my bag of toys I have reserved for "Learning to Listen" playtime, and I got out an airplane. I said "ahhhhhh, airplane" and made the sign for plane. Peter signed it back! Granted, it was a baby version, with just an index finger instead of thumb, index, and pinky all extended.

But the intent was very clear, and he repeated it several times while holding or looking at the toy, and then again outside looking at a real plane!  So I spent a lot of time, spread out throughout the afternoon saying" ahhhh", and Peter did say it at one point, while walking with the toy plane. It could be a total coincidence, but it seemed like the sound was a little different than the noises he usually makes. He is a very vocal little guy, but usually he his more of an "oooh" er than an "ahhh"er. 

He is also signing ALL DONE, MILK, and he sort of signed STAR, but that last one was just pointing at them in a book, copying me, so I don't really count it.  I am not a voice-off ASL user at this point, so all my signs are accompanied by me talking, and I respond to Peter's signs with both hand and voice. I used ASL to reinforce words in the French classes I was teaching, too. I am probably screwing myself up to ever be really fluent in sign, but I hope Peter gets a lot of good vocabulary that he can build on in both signed and spoken language. 

Peter also starting making kissing noises today! I would give him a kis when he did it, so he kept going :)

Tomorrow we meet with the speech therapist our insurance covers. She sort of specializes in CI clients, but I also heard she is a little old school about sign. I guess I will know for sure after our meeting!

Teletherapy Tuesday 2

Tuesday we had the second session of distance therapy. The Facetine server was having issues, though, so it took 20 minutes to get connected, and it was old-school - no Facetime, no video, just speakerphone. I updated J. on all the signing Peter did this week. Peter vocalized in the background , "ooop, ooop!".  I told her Peter was so excited when I got out "his" iPad, and how he was looking for the video....alas, little guy didn't get to see J., and chances are, even with his hearing aids, he didn't really hear her, either :(

We went over the previous goals, and she had some great suggestions for eliciting more "MORE" or how to get Peter to stick his tongue out (ice cream ;))

J. was impressed that my mom had told me with my first baby to narrate everything, and that we were already doing that with Peter.  She asked if my mom was a speech therapist ;). My mom WAS a teacher, but also a smart, involved mom who raised two very verbal and literate children :D


Some other notes:

Listening

Wait time, waiting 7 seconds expectantly when you think he may spontaneously express a sign or gesture.

Cognition

Anticipating what will happen next... parent holds up bucket of Leggos and begins to dump it out, but waits and pauses expectantly at the top to see if Peter will request the action.  Encouraged Ellen to wait for him to request through gesture plus eye contact if he is not vocalizing. 

Language

Worked on sign for “more” with tinker toys.  Suggested for Mom to bring out box of tinker toys and ask if he wants to play with them, encouraging him to use the sign for “want.”  Then give him one tinker toy and wait to see if he will request more with the sign “more.” 

Speech

Peter stuck out his tongue to imitate his mom twice during the session today.  We talked about using ice cream to encourage this a bit more.  Also a hand held mirror to take turns can help clarifying turn taking.  Also, parent can work on puffing out cheeks, blowing, moving lips around, etc... to see if Peter will imitate those actions. 

Miscellaneous

We discussed the resource, Sound Foundation for Babies by Cochlear, a 40-week post-CI home program that suggests goals and activities for the domains of audition, receptive language, expressive language

The link for Sound Foundation for Babies is: http://hope.cochlearamericas.com/node/2256
 

Teletherapy Tuesdays

We had our first teletherapy session a little over a week ago.  I wasn't sure what to expect, as the literature said we were responsible for being prepared with whatever had been requested, but I hadn't gotten any emails or calls. I didn't even know who was initiating the FaceTime session.  Luckily J. called right at 1:00, and Peter was REALLY interested in this person in the iPad. He kept poking the screen and looking behind it. Peter and J. played peekaboo and then we had one last benchmarking questionnaire to do. Peter sat and played with Tinkertoys behind me while I talked with J., and i have to say that on FaceTime that little window on the screen showing what the front camera sees was very handy for keeping the mischief maker out of trouble. I felt like I really did have eyes on the back of my head.
J. had scored the other assessments, and I think Peter was in the 5%ile for response to language or similar. Sounded really low, and J. said that anything below 7 was considered delayed,  but J. also said that many babies with a hearing loss like Peter's are in the first or second percentile, so being in the fifth was actually pretty good.
Last thing for this session was to take J. on a FaceTime tour of the places Peter hangs out in our house. That way she has an idea about his routines and where they take place, and what materials we have available.  Stanford is on Spring Break this week, so our next session is next week. We have some goals we are working on:

Here are the goals we discussed, based on the CASLLS assessment:

1.  Domain: Receptive Language

Goal: PJ will imitate familiar actions and gestures 4 out of 5 times.

Strategies to work on this goal: Turn taking, modeling, wait time.  (e.g., "More" during mealtimes).

2.  Domain: Social Pragmatics

Goal: PJ will request actions through vocalizations, gestures, signs, or words in 4 out of 5 opportunities.

Strategies: Modeling, hand over hand, wait time. 

3.  Domain: Speech

Goal: PJ will open his mouth or stick out his tongue in imitation of parent in 4 out of 5 trials.

Strategies: Using a mirror, turn taking, wait time, modeling.

Teletherapy and Cutting Teeth

Peter is now 11 months old. He cut his second tooth (the top tooth opposite the bottom one he already had) a week and a half ago, so I can say he had two teeth at 10 months. The third tooth- his other front bottom tooth cut on his 11 month birthday. I think that tooth contributed to a couple REALLY hard days for mommy.

We had gotten accepted for a pilot program of teletherapy out of Stanford, and notified on a Friday that they wanted to start the following Tuesday! I managed to rearrange my day, get everything ready for the French class I teach, and ask my mom to take Samantha to dance and bring the girls back to my house just in case I didn't make it back in time to meet the kids arriving for French. Peter was supposed to sleep in the car all the way to Stanford so he would get an hour-plus nap. Of course, he didn't sleep until JUST before we got there and woke up in the waiting room, cranky. That trend continued throughout the meeting :(

We met with a social worker to talk about how we approached Peter's deafness, and she offered to touch base as the surgery date approached, when I might be having more concerns. Then we met with J., Peter's Speech Therapist for the program. She talked to PJ for a while, then we filled out some assessment questionnaires to set the "Starting Point" benchmarks. Peter screamed. Peter cried. Peter threw toys. Peter was calmer when I held him upside down like a bat, but he was definitely tired and unhappy!  I felt bad that the team at Stanford was being screamed at, and I was getting stressed, too.  Finally she gave me my loaner iPad and I sort of ran out of there juggling the carseat, Peter, iPad and stand, and the diaper bag. Hopefully Teletherapy is smoother!

The next day that third tooth came in, and a couple more days and he got his 4th tooth! No wonder he was so cranky!!!