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showing signed and spoken vocab growth over the last six months, but since I did it for his birthday it is already out of date ;)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 ;).

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.

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.

BEA Event

The second to last weekend in March (or the penultimate weekend for fellow word geeks ;)) Peter, my mom, and I went to the first Pediatric Bionic Ear Association meeting in the SF Bay Area. We met some friends for lunch at a great Deli (thanks for the recomendation, B.!), then caravaned over. I thought it would be packed, since we have at least three major CI centers around here.  But when our three cars pulled in to the tiny parking area at JWPOSD we had our choice of parking places.
Wrong day? Wrong place? Why weren't there more cars?

There was a mom and daughter going in to the school, so I was pretty sure we were at the right place. Inside there was a table of AB equipment to look at, games set up, a snack table, an AB Rep, but only a few other people.  It was designed to be a social event, so I felt bad there weren't many people.

One sweet girl, whose mom had driven a few hours to come, took an instant liking to Peter. I think she would have taken him for the afternoon if I had let her! She had two CI's, and lived in an area with very few other deaf or CI people.  Her mom had brought her because A. likes meeting other people like herself.  I was so happy to meet her and her mom, who is an active participant on one of the yahoo groups I am in.There was one other girl there with a CI, but I didn't see the two interact much.  The girl who liked PJ, A., seemed like any other girl, except for the fact that she had things on her head.

The other girl had come from much closer- her soccer practice in San Jose, as evidenced by her jersey and shorts ;). Her mom and I talked a bit. The girl is a twin, and her sister is hearing. Both were born very premature, and while in the NICU one needed really powerful drugs to fight infection- saved her life at the cost of her hearing. But now they are both amazing kids and doing great. The one thing the twin with the CI didn't do was play basketball. Her mom had played, and had that dream for her daughters, but the noise level in the basketball court was not something the twin with the CI liked. I know I don't want to put any limitations on anything Peter might want to do, but I filed "acoustic environment of various sports" away as something to think about later.

I also talked to a member of the Adult Bionic Ear Association for a bit. T. has had his CI for about 5 years now.  He lost his hearing really suddenly as an adult due to an unknown cause.  He loved his CI, but was on the fence about getting a second one, even though as the noise levels rose in the room he had more difficulty hearing. (Two CIs help hear better in noise) He did say that if he could have done both at once he would have, but insurance wouldn't cover that when he got his first. One thing that I learn from him is that they use different strategies to map kids and adults. I have not learned much about MAPping yet, but I am sure I will. He said that he was initially really frustrated because he would hear voices well, but his dog's bark was wrong, and when they fixed it so the dog sounded like himself again, the phone would sound weird, and so on. Finally after many sessions his CI Audi suggested mapping him like they map kids- with sensors stuck on his head, and having a computer analyze how his brain reacted to different levels of different auditory nerve stimulation. He said it was an amazing breakthrough that had made all the difference, and that everything sounded so much better after that. I am glad to know the kid mapping works well!

My mom hadn't been involved in much of the CI medical visits, so I thought this would be a good opportunity to see the actual devices, meet users, and meet my friend B., too.  We talked to the AB rep, and she showed my mom the outside pieces, and let her hold one of the pieces that goes under the scalp. The electrode is so small and flexible it is hard to believe what it can do! There is a new Behind The Ear (BTE) processor coming out, but we couldn't see one, because they can't show them at all until the FDA clears them. But my mom did get to see the cute little waterproof Neptune processor, though none of the kids at the event were wearing one.

I think my mom was most impressed with a little 22-month old who had been implanted at 16 or 18 months. The little boy knew all his color words, and impressed my mom as being more than age appropriate in language. I am not sure this experience changed anything for my mom, but I know it gave her some really good examples of what is possible.

School, next year?!

The 30th of November we went for a second visit to a private Oral school about an hour from our house. I think that's where I want to take Peter for the 2013-2014 school year, but I needed to see more. I chose a great day for it! It was pouring rain so hard we got drenched just getting to the car. Traffic was miserable, gutters were overflowing, and I was worried about accidents. BUT that was the only day my mother-in-law would also be able to see the school, and I thought it was important for her to see for herself how well these kids were doing.

We were a little later than planned (no shocker with the weather). Originally we were going to watch some of their Friday music assembly for the whole school and parents. We only caught the end of one song, but the kids were all enjoying singing and clapping.  Then there was story time, and the kids acted like any other kids- answering questions, laughing, even joking with each other. The director of the school found us and took us down to the toddler area. It's in another building, and it felt like we had to wade down a river to get there!  But it was worth it to see the class in session.

There were two 23-month old kids who had been implanted recently (one just a couple months prior) and one hearing child, who was a staff member's child.  There were another 2-3 kids who hadn't come due to the miserable weather, and I didn't think to ask their ages. In this class, two parents were helping out, and there was at least one aid, so each child was getting lots of attention and auditory input from the adult behind their chair, as well as the teacher.

The class was working on "containers" as an overall theme, and had different bags, and different objects in them to work with. One thing I noticed was the open-ended questions they used with the kids to allow as much communication as the kids were ready for. "What do you see?" was used instead of "what is this?" because then the child is always right, and can say lots of things they see on the object in question.

I was really amazed to find out that one child had only had their CI's active for a matter of weeks. Maybe the child had had some access to sound, or had lost hearing after having some, but he was already listening and starting to talk! I know that Peter will probably take more time before he talks, but he will also be much younger at activation.

My mother-in-law got to sit in for a while, too, and I know it really affected her to see these kids. She told my early start teacher, with tears in her eyes, that she finally felt like Peter "was gonna be OK".

Now comes the hard part- seeing how much, if any, the Early Start program can/will contribute towards the school costs. Also, the Oral School doesnt know what days of the week they will have toddler classes next year, as it depends on who enrolls, and how   many. Whether we go for two days depends on how much funding and it also depends when they have the two days for toddlers. Since I want to keep going to the school for the deaf on Fridays, if the toddler class ends up being Wednesday and Friday I might see if we could just do Wednesdays. I really don't want that, though, for so many reasons. First, Wednesday is a short day at the public school up by my house, and I would not have any wiggle room to be home in time to meet the bus (as I fully plan on putting my homeschooled first grader back in school for second grade). Also, I need to figure out where my preschooler will be in school next year. If the Oral school has class Tues/Thurs then I can put her in a nearby drop-off preschool she liked. If the Oral school has class Mon/Wed, I can't pay for Samantha to go to that preschool three days a week, but only go two. If the Oral school classes are Wed/Fri....well, I don't know what I would do for Samantha. Maybe she'd get home-schooled next year....So much that I know I don't know. It doesn't make me philosophical, just crazy.

A Tale of Two Schools

Two weeks ago we visited Jean Weingarten Peninsula Oral Deaf School, and last week we went to the California  School for the Deaf in Fremont. Both of these schools had really friendly staff, nice kids, and classrooms full of fun stuff. The schools have completely different target audiences, and very different approaches.

The Oral School, Jean Weingarten, serves primarily birth to age 5, and aims to mainstream kids by first grade. They are mostly a toddler and preschool program, and their older students were more special needs or late-diagnosed kids. The classes there were all really small, and I can understand when you are trying to group people by language skill/age/developmental level you end up with small Groups. The classrooms were small, too, so I guess it all works out. The teachers there are all Teachers of the Deaf, and I saw lots of positive, encouraging interactions with the students. I got to see the speech/listening therapy rooms, which looked fun, but no one was using them when we were there. We got to meet some parents in their Family Center, but one thing we didn't see was the toddler groups in action. There were some babies/toddlers in high chairs having snack, but I guess I kind of missed the explanation on what group they were part of. The toddler area looked like a very well- stocked playroom, and was large, but still cozy. I think I need to see kids who are the same age as Peter will be using the area before I have a complete opinion. My Early Start teacher and I spoke with the head of the school, and she explained how they didn't teach ASL, but that they often used it as a bridge for kids when they got cochlear implants. She signed to Peter several times, and he liked the attention. I don't think that I will be driving the hour trip up there until Peter can actually hear something, but I may enroll him if/when he gets his bionic ears.  I need to see the toddler group in the classroom before I make any decisions, though.

The California School for the Deaf used to be on the UC Berkeley campus. They had to move, and got a huge, beautiful campus right across from a huge, beautiful park in Fremont. They serve about 500 students, from age 3-high school graduation. They have larger groups of kids in large light, airy rooms. They had amazing art and projects all over the school. The people we talked to were all wonderful, and all conversations were interpreted in ASL. Peter loved it. All the students seemed engaged and interested. It felt good to be there.  I am going to start going to ASL story time once a month, as that is open to the public, as well as their weekly deaf/hoh baby playgroup.  I know it is a bit of a drive, but I think giving Peter access to as much language as possible, and peers, is important.  Maybe Peter won't care that the other babies are deaf, too, but as he becomes more self aware he might. I also might meet parents who share more of my questions than the parents in the Santa Cruz Early Start play group, where Peter is the only deaf baby attending. My goal is to give Peter a positive early experience with ASL, and hopefully, even if he has Bionic ears, he will continue with it.  I hope he doesn't HAVE to attend CSD when he's older, but if did have to or if he chose to, I know he would get a good education there.

I am really lucky to have these two great schools within an hour from my house!