Holiday Madness, Holiday Gifts

I am so far behind in everything! Not just Christmas, but everything! I just went gift shopping today, hardly anything is wrapped, and still several people will be getting I.O.U.'s in their packages. I still need to clean the house for Christmas Day company, and there are still cards on my table that haven't been mailed. And I have just plum given up on getting any more projects done, or putting out more decorations, or anything really. I was wiped out and sick as the school semesters finished, and it has taken until now to get my feet back under me. But enough of the whining!

I have really wanted to update Peter's word list, and since we filled out The MacArthur-Bates Communicative Development Inventory for our IFSP meeting, it should be easy. But every time I turn around Peter is adding another word! Some in ASL, some spoken, some both! I am so pleased with his progress! And he is starting to put two words together!!! As I saw with my girls, and I predicted Peter would do the same, the phrases are one spoken and one signed word. "More" MUSIC, and "dada" WORK have come out so far, and I can't wait to find out what is next. Peter is really into colors, so I am curious to see if he will use them in a two-word phrase. I have noticed that Peter will start using a word in ASL, then shortly thereafter say it, or try to say it, so I have no problems with him using ASL, since I don't think it is slowing him down any. It just lets him communicate ideas and words before he is ready to pronounce them- like the word ORANGE - he knows it and can sign it, but he is a ways off from saying it. But because I know what he is looking at or wants, I can talk more about the orange train, or the orange light, etc.  It seems to work for us.

On a slightly different note, we got the Naida processors- the behind the ear (BTE) CI from Advanced Bionics. They are small and sleek, though still bigger than the hearing aids were. I think they might be lighter, though. Peter sometimes REALLY likes wearing them, and other times not so much. If there is a risk of throwing (and since I don't have any wig tape yet, that is any time he is being a stinker) I just put the Neptunes back on. Or I have the Neptunes already in his pockets, and pop them on as soon as the Naidas are taken off/shaken off/rubbed off.  I am hoping the better microphone placement and the multiple microphones in the Naidas make for better hearing and easier  hearing. We will see.

Happy Holidays!

100th Post! And it is a special one!

Yesterday I thought I was going to have a really rough afternoon, as Peter had only napped for a few minutes. But he was Ok. And while we were chatting, he suddenly said:

I was pretty excited! I got both a sign and spoken word, when I wasn't even sure he had signed mom before!! So happy!

Cinema Sunday

More videos! I take so many because Peter acts so differently at home vs. at a therapist´s office, and I want to be able to show people what he is doing most of the time, especially when he just stares at the therapists and waits for them to entertain him ;)  Don't worry, the videos are all very short, less than a minute each.

The words of the week seem to be "hot" and "stop"!  Peter has been saying "hot" a lot- seeing the fire in the pizza oven at Safeway and saying it was great example of unprompted speech showing comprehension!  Another favorite word this week is "stop" though it often sound like bop :) he uses it for the water turning off, music box stopping, songs ending, etc. I didn't get a "stop" video, but I did get a "hot".

Peter is adding so much each week- we have been highlighting color words lately, and here he is signing blue for the first time (that I know) and approximating the word, too! So proud of him!

And then there is the "how can you resist when he asks like this?"

And finally, I have read so much (and watched) about how bad music can sound to CI people. I have also read lots of blogs of people with CIs who enjoy music. I think Peter enjoys it. He is starting to dance, and I couldn't resist this ;)

I just want him to thrive

Is that too much to ask? I want Peter to be a super-user with his CI. I want him to succeed in school, and worry about how to fit in yet another AP class in high school. I want him to learn to advocate for himself. I want him to get a scholarship to university- sports or academic, either would be OK! I want him to have good friends and enjoy life.  I hope everything we are doing now is building a foundation for future success. We are following enough people on this journey that I don't feel lost, but CI kids are still such a minority!

Universal Newborn Hearing Screening in California (Summary of all states) just started in 1998, and has become standard across the country only since 1999, as described in this NIH fact sheet.  And the FDA lowered the age guidelines for Cochlear Implantation to 12 months in 2000.  So the first cohort of early identified, early implanted kids is just getting to high school age! There hasn't been time for most local schools to have a true depth and breadth of experience with "today's" CI kids. So CI parents aren't alone, but we still have to navigate so many decisions on our own, use our gut instincts a lot, and we may go into schools where we are the first ones to educate them about what our amazing kids need to become those poster kids of academic success.

I wonder how the transition to our local school will go for us.  They take over responsibility for services to Peter at age three, and that transition/ hand-off to the local school district starts a year from now. I try not to worry too much, but sometimes it's hard not to after hearing so many stories about contentious IFSP/IEP meetings, and how schools with no experience can have too-low expectations of CI kids.  I will try to keep the worry to a minimum and just continue to educate myself :)

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!

Infographic I thought was neat- ASL

I liked this, but remember- I am Swizerland, so even if I personally like ASL, I don't think everyone NEEDS to learn it. I hope with all the fun YouTube ASL music videos more people WANT to learn it :). I think it would be interesting to see if using more finger spelling and signs in the lower grades of regular schools would help kinesthetic learners, as well as visual learners, but I don't have a soapbox for the issue ;)

I want to be Swizerland...and a video

I like that Swizerland is neutral. I also like that they are tri-lingual and ready to defend themselves if necessary ;)

Having a deaf child means you get free entry into a world where so many of a parent's choices are judged by those who would not make the same choice. Technology, communication, and education are all hot button topics to some people in each "camp". I am incredibly lucky that I live in a region with so many resources. If I lived in the middle of nowhere I wouldn't have choices- there aren't a lot of Deaf Schools, so signing wouldn't be as viable, Oral Schools aren't everywhere, and certified AVT therapists aren't everywhere, so if I lived somewhere else I might be stuck with whatever the state gave me and be glad for it. But I am here. I am availing myself of everything I can, and usually I am happy I can do that.

But when I feel like there might be pressure to just use one approach I feel myself getting defensive. I would defend my choices if anyone at the school for the deaf railed on me for implanting my boy- but no one has, thankfully!  I know I need to respect the parents there (hearing and deaf) who have their own reasons not to amplify or implant their kids and who have just embraced signing. Likewise, parents may never sign, and throw themselves whole heartedly into an Oral or Aditory Verbal approach. If that works for their family I think that is awesome!  I have read many blogs where CI kids thrived with those approaches. But I am doing things in a way that feels right for me.

I love languages, and the more the merrier. If I can give Peter access to multiple languages, I will. Kids in Swizerland don't have problems learning at least two, and often three or four languages.  My friends who have multiple languages at home have kids who maybe started talking a month or two later than my kids, but they now read and speak in two languages at age 7.  I know Peter is a smart cookie- he is now catching up to about where 9-month old hearing kids are, according to a couple evaluation scales. Since he's 18 months old, that may not seem awesome, but he has made those 9 months of progress in Under six months, and less than two of those months with two ears on. If what we are doing is working so far, I don't see a reason to change. Of course if I feel there are issues I will make adjustments, but right now I am still figuring out what proportions of what ingredients are the best for us, and everything is staying in the mix.

Our mix is working well:

Music?

Great talk. Makes me think about how Peter perceives music. I know he likes music class, and I really hope we are helping train his brain to hear the beauty.

TED talk on Building the Musical Muscle (about music and CIs)
http://www.youtube.com/watch?v=bTE0MRRXNzs&sns=em 
(If there is no video above here is the link)


So much is being said right now about music and how CI recipients hear it. Just remember that brains are amazing, and they can learn more than we think;)

 ;)More hope for music! New Sound processing strategy being studied :)

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.

Rhyme and rhythm in ASL

Peter and I went to the CSD ASL workshop/ Playgroup today, and it was a blast.  I loved learning about some of the rules to ASL poetry and how ASL nursery rhymes can be constructed. I am starting to recognize more and more signs, but I was also reminded of how much I need to practice my receptive finger spelling!
The ASL workshop was taught by a new teacher at CSD, who was recruited from Massachusetts. She signs a lot of music videos, and her talk on bringing rhythm, repetion and physical rhyme into ASL for young kids was really nicely done. She quoted a statistic that hearing kids who had 8 nursery rhymes memorized by age four were much more likely to become skilled readers. The foundation of rhythm and auditory memory helps with literacy. ASL rhymes can help the same way for kids who can't hear. They build up the memory pathways and strengthen the language foundation.
How is a rhyme made in ASL? I am sure I didn't grasp everything, but there are different ways to express it- using the same hand shape in different ways (like the clawed hand for bear ears, chubby cheeks, and a chubby belly) or choosing words that use the same handshap and repeating them (like the open palm used for SCHOOL, HERE, HELLO, C'MON that was woven into a welcome back to school poem).
The talk was getting really interesting when Peter decided he was done sitting still and wanted to go play- and that I had to come, too. I hope they post the video on YouTube!

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.

The boy who signed wolf

Lately our life is all about speech therapy....but it isn't just about speech. The goals of the sessions encompass listening, thinking, and social aspects in addition to speech. Cognition demonstrated by Peter on Tuesday for his therapist at the school when he saw a Little People pay house. He rang the pink doorbell, and there was a noise. She opened the house, and Peter immediately found all the pink objects and pushed them to make noises.

Cognition and audition were demonstrated tonight.....Tonight I was in Peter's room getting Peter clothes for tomorrow and he looked around, saw a picture we hadn't really talked much about, and signed WOLF. Yes! It was a picture of a wolf, five of them! Cool, but that just shows he is observant, and know what a wolf looks like (the app called SoundTouch has several wolf pictures we look at). But the cool thing? I was in our bedroom with my husband and Peter, telling Chris about Peter signing WOLF downstairs. Peter looked up, signed WOLF, and then bent his head around to point out the picture of a wolf in our bedroom! He understood at least some of what we said, and made the connection between all the different wolves! I am very proud of my little guy :)

2 Ears On!

We had a busy couple of weeks! Peter started school on Tuesday 9/27 AND we got his right CI activated. I have video, but I haven't edited it yet. It was not as dramatic as the first activation. Mostly he looked like it was really no big deal. No shock, no fear, just picked up that drumstick and started banging away!
So far Peter has seemed to be doing well with the second CI, though it seems to pop off easier, and I can't tell if he is knocking it off on purpose, or if it is just coming off.
We also went to our new early start playgroup on that Friday. Peter loved the ball pit!

This last week we still had bad traffic for the commute to school. We are slowly adjusting to getting up extra early. My girls decided they would sleep in the next day's outfit to save time in the mornings we commute. I have two wonderful friends with kids the same age who are taking the girls on Tuesday and Thursday, then dropping the older kids off at elementary school, and the younger ones at preschool.  I am so thankful for this crazy arrangement! I just have to figure out what I can do to give back.

Just a little bit awesome

Something just happened that made me so happy I had to make note!  I was drying my hair, and my deaf son came to tell me he heard the phone ringing! I couldn't hear anything over the hair dryer, and I look up to see Peter coming over with that "I need to tell you something look" and he was signing PHONE.  Sure enough, I turned off the hair dryer, and a neighbor was starting to leave a message on our answering machine.
I am so happy that
 a) he heard it
b) he knew what the sound was
c) he knew the sign
d) he knew I usually respond to the phone and he needed to tell me

Thanks to that, the girls get to go on a play date instead of to the grocery store. They owe their brother ;)

Happy Friday :)

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!

Second Surgery done!

Phew. We are home from our overnight at the hospital. Peter is doing well now, and napping comfortably after some baby Tylenol.

This surgery took longer than the first. The surgeon had mentioned that it might be a bit slower because they can't use the electric cauterizing device because of the existing implant. I was prepared for a little slower, but when it stretched to a couple hours I was starting to get worried. Finally the Dr. came out to explain that they had to use a different shaped electrode in this ear, because after two (gentle) attempts with the same shape that is in his left ear she decided there was too much resistance and went with the "J" shaped one instead of the helix electrode. Then they had to re-do the X-ray 3 times to verify position, because the picture wasn't clear enough the first times.  But it was finally done, and I could go to Peter, who was feisty and cranky like last time.

 This go round it seemed like he had more pain overnight, and I was pretty willing to ask for the morphine every two hours. The nurses seemed like they were trying to stretch it out a bit, so even if I asked at the 2-hr mark, it was usually a little longer than that. Peter seemed content as long as I was there, but WAS NOT happy if I needed to get up for any reason. When it came time for discharge we couldn't do any more intravenous pain meds, and Peter did not like the LorTab (baby Vicodin) and tried to spit it out. Blood came out of his mouth when he spit, and I realized there was some blood on his nose, too. That didn't happen last time, though I knew it could happen. I managed to stay calm.

The Dr. was very insistent we keep the pressure bandage on at least 48 hours this time, since Peter yanked it off after less than 24 last time, and he had swelling still at the 1-week post-op as a result. I will do my best!  They did the pressure bandage in a way that I only had to fold down one little part, and I can put Peter's left CI on, so he can still hear when he's awake (which might be less than normal for the next couple days).

I am so thankful to my friends who took such good care of my girls Wednesday and Thursday. Knowing that they were in good hands and having fun removed a lot of stress!  I am grateful to my husband, who stayed with stressball me until Peter was in his hospital room after surgery. I am glad my husband's work is flexible enough that he's been able to be there for both surgeries, and any meetings we had to attend as part of the CI process. And most of all, I am so happy both ears are DONE!!

Here is my project that I worked on in the waiting room, since I don't know how to knit or crochet, and I was too nervous to read for long:

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)

Fun "Speech Therapy"

Friday we went to a local park for a picnic with friends. It was a regular fun outing, but then we went on the little train they had there....and Peter LOVED it! We had watched them hitch up the engine, and listened for the whistle while we were in line, but it was once we were seated, and we started to move that Peter's eyes got huge with excitement :). I pointed to the engine and signed TRAIN, and said "whoo, whoo". Peter was laughing with the wind in his hair, and by the middle of the ride he was signing train (with just his pointer, but he was moving it in the right way) and saying "ooo, ooo". So fantastic, especially since I couldn't get him o say "ooo" at home ;).

I am working on a couple videos to post showing speech so far, and to document progress with one CI. After surgery this Wednesday and activation in three weeks we will get to work with two ears!  I am excited to see what Peter will do with two CIs, though I am not excited to go through surgery again. At least we know better what to expect.

MOMMY, finally!

   

Last night Peter finally signed MOMMY!  It was a hand wiggle with his thumb on the side of his chin, but he was looking at a picture of me :D. He has sort of made signs for Sydney and Samantha, and DADDY and GRANDMA, and BABY, so we are slowly getting all the family members. I still rated after DOG, CAT, and FISH, though! He even signed GRASS  last Friday before he signed MOMMY. I hope he says "mama" before those other words to make up for it!

DADDY

Peter's sign for his Daddy is also the sign for DONKEY

Coincidence?

I heard from another mom who went to a CI conference that the professionals were recommending not introducing any new signs after a child gets an implant, at least until spoken language is established. IF I wanted to stick hard and fast to those guidelines I could still talk to Peter when his CIs are off, BUT only because I exposed Peter to so many signs that even if I don't teach him any new ones, he has hundreds that we could still use!. One small study touting benefits of early signing showed CI kids with deaf parents did better learning spoken language than CI kids with hearing parents- the assumption being that the signing from birth gave them early access to language, which ported over to spoken language. This study is pretty old, before the FDA lowered the implant age guidelines, and it doesn't have any hearing parents who signed. Another old (1996) study showed that continued development in sign did not have a negative effect on spoken language, and possibly had a positive effect. The authors of the study also point out that people who posit that signing is detrimental tend to be monolingual, where most of the world is bi-, or multi-lingual, and that they develop just fine!  I keep this information in the back of mind when I feel pressure to drop signing.  I also know that signing is not for every family- we had a head start because I had used it with my girls. People who have late diagnosed kids, or whose children lose their hearing suddenly may not even have time to think about learning sign before their child has CI's and they are focusing on talking talking talking! And if the FDA lowers the age guidelines to 9 months for CI surgery then there will be even less time to focus on sign- but that doesn't mean it wouldn't help....

But what is the magic formula?  Several studies seem to show that CI Children in Oral programs speak and understand spoken language better than CI Children in Total Communication programs.  Is it that TC is not the best of both worlds, and immersion in each separately would be more beneficial? Where are those studies? What would I even look for?  I suppose it doesn't really matter right now, as I already knew I wanted to do an oral school at this point, but still use sign. We have times like bedtime, where we read some stories aloud, with some signs on the book, then take off the CI and have a 100% signed story or two. Peter seems pretty happy with that arrangement :)

Some traction and new SHOES

After my entry about trying to get the ball rolling I got lots of things almost checked off the list :)

1) I went to a play date at the new Early Start group. I was part of a dedicated hearing loss group, so having several other parents (all hearing) with children with hearing aids or cochlear implants was a different experience (as compared to Santa Cruz County, where no other kids with hearing loss were at the play dates).  Everyone was nice, and the woman I met with said she thought from here on out Peter should get two weekly home visits starting that last week in August. I forgot to give her the massive packet of paperwork, but at least all the forms are filled out ;). The one bummer: the play groups are on Fridays, so I will have to choose between CSD (the School for the Deaf) and the Early Start get together. It is unfortunate the two big programs don't have different days, and at least some days where they welcome each others families. Sharing information, and having access to both environments woud be so beneficial to kids with hearing loss (in my mind). Also, building a bridge between the ASL and spoken English programs would help families see that there are lots of options out there, and find what combination works best for their child. Something else to work on in my spare time ;)

2) my meeting with the Oral School was pushed out until next Tuesday. I can't say it was a total surprise, more like par for the course. If this wasn't the only program of its kind for the youngest kids I think they would have to run a much tighter ship. Bleah!

3) I signed Samantha up for a preschool that meets Mondays, Tuesdays, and Thursdays!  I visited and LOVED the environment, and the teacher was so open and friendly and happy! Such a change from the last preschool teacher I worked with! And the way the schedule works means that no matter what days JWPOSD (the Oral School) recommends, I will have at least one day a week when I can drive the carpool (there are at least two other mountain families there) or maybe even work if I get baby care for Peter. My mom offered to do most of the work shifts, though, so I will just be doing the monthly meetings and committee work as my part of the cooperative preschool.  I got most of that paperwork done, and just need to send in the check.

4) got the re-enrollment packet for Sydney filled out. There was a ton of paperwork! And I can't turn it back in until she gets a TB test.  Since we officially "left" the county to go to school last year (even though we were at home, or in Los Gatos for classes) they require the TB teats to come back. Luckily I need a TB test, as does Samantha for the preschool, and Peter still hadn't done his 12-month well-baby visit, so all of that is Wednesday. So #4 is almost done, too.

5) The second surgery is scheduled! August 7th. So Peter will have two ears starting August 27th, which is also the day JWPOSD starts. So happy!! I still need to arrange kid care and all that for surgery day, since my mother-in-law isn't around, but several people have offered help. I am soooo thankful for all my awesome friends that have helped me out by watching my girls when I have appointments for Peter.

6) Vacation. I am not saying no with a capital N, but I don't think it's gonna happen. Looking at the calendar, with Pre-Op and Dr. Visits, the surgery, post-op, and THREE different start dates for schools I don't see a good time.

So we have traction. We are moving forward! And on Friday, at the Early Start parking lot I said to Peter, "let's get your shoes". I reached for them, and he signed SHOES for the first time!  My boy is so smart!

Stuck in First Ear

I haven't had enough positive stuff to write about lately, but I decided I ought to make a note of what is going on for posterity's sake ;)

My frustrations:

1)  my Early Start situation - we are being transferred from one county to another, and I don't know exactly what the new county offers.

2) Oral Deaf School for next year- I still don't know what days they are recommending for Peter.

3) Preschool for Samantha- some of it depends on what days Peter goes to school. I feel like it is really late to be starting the enrollment process.

4) Getting my older daughter re-enrolled at the local school. Not really a big deal or stumbling block, but it needs to be done!

5) Surgery date for Peter is still not set

6) Vacations are not taken or planned, or even positively decided upon until the surgery date is on the calendar.

So, I am trying to get the ball rolling. I made some phone calls, left messages about 1-5, played some phone tag, and now I have a little bit of progress.

1) I spoke to M., the director of early start in the new county. She followed up with an email and a promise that one of the actual service providers would call by end of day Wednesday. So I still don't know anything, but I have some names and phone numbers. The goal is to have Peter completely enrolled and familiar with the services they offer before end of summer session 7/26, and to have home visits and all that start from the first day of the new school year (aug 26 or so).

2) I have a visit planned for Thursday or Friday at the Oral Deaf School. Even getting a visit is frustrating! Can't schedule anything with just one phone call it seems. But then by Friday I should know which group of kids Peter would fit in with best.

3) I scheduled a visit at a local preschool for tomorrow. Hopefully it is nice!

4) enrollment packet should be in the mail to me- I spoke to the district secretary yesterday. As soon as I get it and fill it out I can drop it back off and be done with it!

5) Left a message for the surgery coordinator yesterday. They promise 48 -hour max response time. No news yet.

6) Depends on number 5...

So, hopefully everything will be morning along nicely by end of week.

Luckily Peter is still doing great! He is experimenting with a lot of "aaaah" and things that sound like "la, na, ha, ba all rolled together ;). I need to video it, since he didn't really make any of those sounds before he got his CI.

New Signs....and a new SELPA

Quick note before I forget - Peter added GIRAFFE, (raises hand from neck to above shoulder),

DIRTY

 and PHONE (puts all knuckles on cheek)

Also, the top two teeth next to the front teeth came in on the 22nd, so he missed the predicted 11-13month window by a few days ;)

And....I got a phone call from my Early Start director saying that we were getting services from the wrong county, and that the IFSP meeting would be the start of a handoff.  Uh...ok...I knew we lived in an odd place- we live in one county, our school district straddles two counties, and our official Town is in the other county...but they called me- I didn't call them a year ago when this whole thing started.  We liked our Early Start teacher, too! I am still thinking what else this means for Peter, but I do know that the meeting where I got Early Start to agree to pay some of Peter's school and therapy next year was all for naught. I have to start all over with a new county and new people. I am sure they are great, awesome providers, but I was hoping for some clarity about what was happening next year, and not a total upheaval!

PS I don't remember what exactly SELPA stands for, but it the service district for Early Start and Special Ed.

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!

The Top Ten ASL Signs for a Newborn I Wish I Had Known

When we came home from the hospital with Peter I knew he had something going on with his hearing. He had gotten "Refer, Refer" on several of the newborn hearing screenings. Basically he failed the hearing tests, but they don't like to say FAIL! We had appointments for further tests, but we didn't get a lot of information at that point. I did know that even if the problem was "fluid in the ears" or a "late maturing auditory nerve" and would eventually be resolved, that couldn't hear me at that point.  I wanted to communicate from the start in a way that was accessible to my baby.

I had used sign with my hearing daughters starting at a few months old, so I knew some signs, but many were not useful at all for a brand new baby with limited daily activities.  I had to look up some signs below, and they are the ones I with I had gotten in a pamphlet right after that first failed screening. At that point I didn't want to learn about the top 100 signs for parents. I didn't need to know LION or BALL. I needed something simple. Those first few weeks were overwhelming enough, without having to dig through the web for the ASL words I could use so often with my baby. I also wish I had gotten something that talked about using sign at first EVEN IF the oral route is preferred, and something that talked about ASL without an anti-CI bias (and CI's without an anti-ASL bias!). 

A friend just posted an an article about early language access, and that got me thinking about my (fantasy) project to design a brochure for REFER,REFER folks. Anyone have any other suggestions about what 10 signs a hearing parent might want to know? I chose these because they could be mixed and matched to say so many things about a newborn's day, you can do them leaning over t he changing table so the baby can see them, and they are an easy entry into signing. Also, with CLOTHES being close to GET DRESSED, i felt this group had even more possible combinations. But I am no expert.  My ASL grammar is non-existent. Hopefully someone who is fluent can take what I felt I needed, and massage it ;)

And now that Peter has his CI? I am still signing.  I am always talking, too, but being able to "chat" when his CI's are off, or knowing what he is thinking about, so I can talk about it...priceless! He just learned the sign for LION ( he just sort of rubs the side of his head) and I can tell he loves his stuffed lion, because he signs to it/ about it a lot! I talked about the lion's (and Peter's) eyes and ears today since he was focused on it and excited about it :)

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.

The Butterfly Effect?

Yesterday my girls found a huge black and yellow (dead) butterfly. I think the cats had gotten it, but it was still mostly in one piece. It was beautiful, and we talked about it, and signed BUTTERFLY.  Peter was really interested and signed butterfly back! He didn't cross his hands like the adult version:

But he put his hands together at the knuckles and wiggled his fingers on both hands at the same time! It was adorable :). Later, and maybe this was just a coincidence, we were looking up the hill, no longer staring at the butterfly, and I said "butterfly", and Peter signed it!!  It would be amazing if he recognized the spoken word already, and that is probably too much to expect :/. I will keep signing, because if Peter can show us what he is hearing with signs I think that is pretty cool :).

New Signs

Just a quick update on new signs (more for me than anything else ;)
Hot
Sleeping
Ball
More

I am taking a free ASL class at a local church. It is taught by a woman who is deaf/hard of hearing.  She grew up speaking, and didn't have hearing aids because her family didn't have the money to buy them. She has a hearing aid now, but still prefers to go without and lip read. She can hear tones, and she has a beautiful singing voice. Talking to her you wouldn't know she was deaf.

Today was the first class, and it was a great cross-section of my community. Middle schoolers, young adults, moms, grand parents. And everyone was so willing to just jump in!  I knew most signs used today (idid learn FROM) but it was great to practice :)

What can he hear, and what does it sound like?

I ask myself this a lot.  Peter will be able to hear, but what he hears will be different than what I hear. The following video is really interesting and has some good examples.  It should just keep getting better as they do more research :)

Wearing a Neptune - Boy Style

The Advanced Bionics Neptune processor is awesome for kids- it is waterproof (so also milk, applesauce and other mess proof) and they don't have to wear something on their ear. The processor can be clipped to ponytail for women, or clipped to clothes for adults and kids.  But clipping the processor to a kid's collar  is a little awkward, though it works fine.  Putting the processor in the breast pocket of a button up shirt works- if you clip the processor in, and they don't quite fit all the way in the tiny little 12-month size pockets. I have also altered a vest Peter got by cutting a small hole in the back of the pocket and running the wire up the inside of the vest, and clipping the cable to the outside of the shoulder.

 The kid harness they gave us is bulky and awkward and too big for my big 12-month old. The lanyard was ok for the bath, but I am not comfortable having Peter wear something around his neck all day (choking hazard).  I have not yet tried the armband, which I am sure will be great when he is a little older. It seems a bit big right now.

In some spare time (haha right!) maybe I can doctor up a vest pattern to have good Neptune-sized and placed pockets, and distribute it.  I think a cute Safari vest,

 or a waistcoat, or even a cute orange construction-worker style vest...and there is this cute vest/hoody I saw that would be great to pocket a Neptune :) Other ideas always appreciated!

Is more better?

Speech therapy and aural habilitation are now art of our lives. I try to integrate the things the therapists are teaching me into daily life, so we are doing a lot of sing song, and repeating and emphasizing certain sounds. My challenge right now is finding which therapy approach resonates with me and engages Peter. We have the weekly visits with our Early Start teacher, the weekly teletherapy sessions which are part of a free pilot program, now weekly sessions with the specialist paid for by insurance (mostly paid for, still a $15 co-pay, which adds up with 50 visits/year), and then in the fall adding in classes a couple times a week and still going to the school for the deaf when we can....and I want to add in a Music Together class, too!

With Peter being kid number three the scheduled sessions/classes ARE a way to make sure he is getting at least an hour a day of focused time, but will it all drive us crazy? Will the different people and their approaches work harmoniously or at cross-purposes? My goal is mainstream school by kindergarten, my hope is mainstream by preschool- but I don't know what the right mix is to get us there.

This week we are trying to focus on "mmm", "p", and "b". I can sing songs and rhyme words and alliterate 'til I am blue in the face, but trying to get my kid to sit down and repeat what I am saying has so far been beyond me. Some suggestions were to have a bunch of boats and a tub of water, try saying "buh, buh, buh" and waiting for Peter to attempt some vocalization before giving him a boat, then repeat. I will gamely try this. My prediction: splashing will be fun, and he won't give a hoot about the boat. I was also given the idea to give balls to roll in a tube/ramp- the balls can be "b" or any sound we are focusing on, say the sound, wait, if there is any kind of response he gets a ball.  I know Peter will like this, but I bet he will go looking for the first ball instead of trying to get a second. I am also supposed to keep working on presence vs absence of sound with toys in boxes. This sort of works, but unless I find a sterile room with NO other toys Peter will not focus for long. And there aren't any rooms in my house that have zero toys ;)

Sound reaction notes: sneezing behind Peter freaked him out, as did the hair dryer. These weren't on purpose, of course, and once I showed them what it was he was ok. A couple toys that had crunching or revving noises scared him, too, but in general he just seems more engaged. He loves his noisy crazy sisters, too!

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!

So far so good

When a Cochlear Implant is first turned on it is set at a really low level to give the brain a chance to adapt to the torrent of new information it is receiving. Peter should be hearing all the noises around him, but softly.  We are slowly increasing the volume this week, and will get three new levels (created within a program, or MAP) next Tuesday  

Peter is doing really well. I have slowly been turning up the volume, and he is now on the third program at about 2:00 (on the Neptune they have two dials, and the default setting is straight up to the mark, or 12:00, 12:00, more obvious the way the black model is shown below) we don't touch the sensitivity dial, but the audiologist told us to slowly adjust the volume dial using each program from 12:00-3:00, and that we could even go to 4:00, but at that point he would just be ready for the next program.

 Neptune controls (removed when in waterproof mode)

We have been playing games with empty and full containers to show presence vs. absence of sound. We have been playing a dance party game where Peter turns on his little music player, and we dance around while there is sound, and freeze when it stops. 

We have let him ring the wind chimes, or bang the pots, and I am trying to make a big deal out of it when I hear something.  But we are also just letting him play, and talking to him.  I am also signing when I am talking- as much as I know, in the hopes that he will pick up the spoken sounds as representing the object (like BIRD) just as the gesture does. 

Girls get to wear these cute headbands to hold their behind the ear (BTE) processor, but that would look silly on Peter!  He has a bodyworn processer, and it came with a harness, but the harness is a little too big. I have been putting the processor in a pocket of Peter's overalls. I am lucky- I have about 5 pairs of overalls- just happened to be in the clothes people gave me!  They work well if I clip the processor into the pocket, then clip the wire onto the strap. I read about a little boy who had a special-made vest, which looked like regular clothes, but had a pocket in the back.  I think there might be a need for some cute CI friendly boy's designs!

We also have an armband for bath or pool!  

Picture below is not Peter- it is from the advanced bionics website.

Left Ear Activation!!

Wow! To get to this post we had so many Dr. visits, so many hours of driving to different appointments, a new language (ASL) to learn, CT, MRI, surgery....and then when I watched the video of activation I found my husband had recorded it one way, and I had taken the camera and flipped it over....so I also had to learn video editing on my iPad ;).  But here we are, only two days after activation, and I can actually post something that won't give you neck strain from watching it sideways!

http://youtu.be/A8ppuZOlYIw

All cleared for takeoff!

Our second post-op appointment with the surgeon went well today. She said Peter looked great, and everything was healing perfectly. All the swelling is gone, and the incision is flat and barely noticeable. She just recommended having him wear a hat in the sun so the healing skin doesn't turn darker there. So that's that. All set to be activated next Tuesday.

I did ask if there were things Peter shouldn't do- like pop his ears, or blow his nose forcefully. Should I get him a medic alert bracelet about no MRI (without first removing the magnet)?  She said we should avoid head trauma, but that kinda goes for everyone. She said the bone really grows around these, and that the silicone cases are really very durable. I guess once she had to work on a kid who had an original ceramic case CI- the poor kid had walked into a pole and cracked the CI- but that should not happen to Peter!  She said most places are very careful about CI's and MRI, but she did know of one situation where a kid with a CI almost got an MRI (not at Kaiser, and the MRI didn't happen) so it is really up to us if Peter needs the bracelet. The ear popping, nose blowing? The concern is more about a ruptured eardrum if one does those things too forcefully. If Peter gets an ear infection she did say we needed to be very proactive and aggressive about treating it.  None of my kids have ever had an ear infection, so I hope that trend continues.

Last thing I asked about the right ear surgery.  She said she could put in a request for July- I said any time that month (other than the 4th), and if July gets full with non-elective surgeries, then August is still good. Phew! Somehow scheduling (well, prescheduling) the second surgery doesn't feel nearly as momentous.  Plus, now there is no choice/debate about two or one, so it feels easier.

Tomorrow is a play date at a park near the School for the Deaf. We haven't seen everyone for a while.  The school had a couple evening events (which just don't fit into our schedules) and so didn't have the usual morning meetings, and at least one day the school was closed. I am a bit apprehensive about possible reactions to Peter getting a CI. Not that I will hide it (I personally think it is so amazing I want to talk to everyone about it!), but perhaps I will be extra careful about ensuring the recommended sun hat is worn tomorrow.

Oh, the suspense!

Peter is back to himself. It has been just under two weeks since the surgery. Antibiotics are done. Pain meds haven't been needed for a while now, and today we finally took the steri-strips off that were covering the incision. I don't think it looks too bad, but he does have a raised area where the internal device is under his scalp.  (The last picture shows that- and only that, as my boy did NOT want to pose). As he grows that bump should be less distinct.

Now we are just preparing for activation. There are loads of YouTube videos of people (babies, kids, and adults) having their cochlear implants turned on for the first time. But that moment of joy, or fright, is just the beginning. We have a long road to teach Peter how to listen, and how to get the most out of what he will be able to hear.

I printed out the first week of the Sound Foundation activities, which are designed to be used from the very first week of activation.
http://hope.cochlearamericas.com/sites/default/files/sound_foundation/SF_Week1.pdf
I went to the library and checked out the book recommended for one of the exercises. I gathered up various toys for both the "learning to listen sounds" (http://www.listen-up.org/dnload/listen.pdf) and the Ling-6 sounds (the Ling sounds cover the different frequencies of speech, and, among other things, are used to test the equipment every morning). I think we are covered for all the transportation-type toys, but when I went to get animals, the girls informed me that the cats and dogs were all their favorites, and I couldn't take them. I did find a bath toy dog that will work, but I am still looking for a toy cat that will work. I need a cat for the Sound Foundation Week 1 song, too, so I better keep looking :)

I also visited the hearing aid audiologist on Friday, and she took the hearing aid that went through the washing machine. It is still under warranty, so she said we might as well get it checked out and repaired if necessary. She was very understanding...guess it happens more often than I thought.

Next week we have another Post-Op, and then the week after that is activation!!!  I can't wait!

At a play Peter was obsessed with the firefly costumes- he signed LIGHT so many times!