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Ian has been getting on a school bus since he was 18 months old, since he started deaf education with the texas school for the deaf and now with the deaf ed program run by AISD. I've been getting up with him, usually around 6:45, dressing him, and putting him on the bus every week day for about a year and half (he only went 3/days a week for about half the summer). What I have learned about Ian from these mornings is that he is a person who wakes up in a good mood. This morning he was literally jumping around when he saw the school bus. When he gets on the bus, he waves and waves and says "bye". I'm sure he's had a bad morning at some point, but my predominant memory is him being very happy to be getting up and getting to school.
Last week we visited Live Oak elementary in Round Rock, which is where we've decided to send Ian for preschool and K-6. They are the region 13 magnet for public deaf education, and have about 50 kids with cochlear implants, hearing aids, or other auditory issues enrolled. It is a normal school, in that the classrooms are mostly non-deaf students, and they aggressively mainstream the deaf students with their normal hearing peers. The philosophy of the school is that deaf ed students are just regular kids, who should be in the classroom with the other kids, and that the expectations of their academic, social, and emotional development are no different than anybody else, and that the best way to get there is for the deaf ed kids to be with peers. They have a deaf ed teacher in every room that has a deaf student to support, so basically every classroom has an extra teacher, and all of the deaf ed kids get separate class time for language arts which they do in a small group to focus on listening and speech skills. Live Oak also has both a total communication program (sign and speech) as well as auditory-oral, so they have great flexibility in addressing the student with whatever method works best for that particular student. Ian is auditory-oral at this point. The classes that have sign are mostly hearing students with a full-time interpreter providing all the visual communication for the deaf kids in the room. The teachers we met typically had about a decade of experience in the classroom working with deaf ed kiddos.
I have visited the Austin program that Ian has been attending, and there isn't anything wrong with it, but the Live Oak program has more resources than any school in AISD, and has such a pro-active orientation towards mainstreaming that is stands out. Most public education treats deaf ed more like special ed, and does not have the expectation that the deaf ed students are at their peer level in academics and other skills. Basically the deaf kids are allowed to be "behind". AISD does mainstream, but lacks the resources to put a deaf ed teacher in the classroom for K-6 - either you are in the deaf ed program, or your mainstreamed, and there is not an "in-between" place where the kids can be in a normal setting and get the extra support they might need due to deafness.
I was surprised by how emotionally moved I was by the visit to Live Oak. I just felt like sobbing while we were there; seeing how great a program it is and how it is so well designed around the needs of the deaf students. Say what you will about public education, the program director and teachers I met love these kids and are doing something extraordinary to move them forward. There are parents that have moved from other states to get their kids to this particular school, so there is something special going on up in Round Rock.
So we're moving to Round Rock ISD as soon as we can - pulling up stakes from Austin and heading north-ish, most likely to the Milwood area so we can get Ian to where I think he'll do best. Craig will go to Live Oak as well, they will do an in-district transfer to keep siblings together and that makes me very happy as well.
J
Read original entry at Ian's blog.
| Ian finished his first week of school last week and he seems to have made progress already. He is saying 'finished' and babbling more in general. He seems happier, too! Here is the latest piece of art he created. -Mom |
Read original entry at Ian's blog.
We ended up having most of our AV session with Amy and discussed some things we could do at home with Ian, as well as looked at recent progress.
From our session today:
Create an experience book to talk about about actions, common phrases,
and requests by taking photos of people Ian recognizes doing things.
Use this to model and set up Ian to ask for things.
Use the syllable paper set that builds to three syllable words.
Work with Ian in identifying and vocalizing shapes.
Work on Ian identifying words in isolation vs in a sentence.
Continue working on expansion (adding words and modifiers to words he
already knows).
Also expand on the newly acquired action words (person plus action)
like "mommy walking".
Start giving him two sets of directions, like "get your shoes ... And
go sit down."
Work on identifying opposites: big/little, short/long, hard/soft -
take objects and hide them where he can touch them, and the work on
him identifying things by characteristic.
Read original entry at Ian's blog.
into the phone to the person on the other end.
He's getting there!
J
Read original entry at Ian's blog.
| Ian's drawing still continues to amaze me. An art professor friend mentioned Paul Klee and I agree. Here is his latest. Also, today he used a three word sentence spontaneously. "Watch TV Pee Wee." His 'watch' has gotten very clear. More and more he is imitating words very well on the first try. He said a clear 'yellow circle.' -Mom |
Read original entry at Ian's blog.
| Ian has started singing the ABCs up to and including the 'next time won't you sing with me.' There are a lot of letters that are off. For example; he says 'y and y.' And all the words at the end are all approximations. Still cool and out of the blue. -Sarah |
Read original entry at Ian's blog.
* spontaneously started counting (up to five)
* spontaneously sang the itsy-bitsy spider song when were reading a book with a spider in it
* spontaneously started naming the colors of balloons in a book
Earlier, he was bringing me different colored objects for making a mr. potatohead, like a "green hat", and "blue shoes"
possession (me my mine), preposition (under, over, in), articles (a,
this, that).
Take photos of people he knows doing actions and use like flash cards
for actions.
Ask questions like "what is he doing?" "What are you doing?"
Game with three people - take turns with the book, first person asks
"what doing" to mommy, the goal is to have Ian ask mommy "what doing?"
With a picture in the book.
Set up dinner so ian has to ask a question of each person at dinner,
model this every evening.
Two word phrases, like "rope in" "rope out" when using threaded toys
that have holes.
We normally go to our auditory verbal therapist every week with Ian; last week my mom took Ian while we were on vacation so she sent us notes about the session.
-Jack
----
Jack & Sarah,
Hope you’re having a nice vacation! I must say….Ian was VERY verbal today in therapy! I don’t know if it’s the new program on his right side, or the fact that you’ve been working with him a lot at home, or the fact that we pulled out a ton of Mr. P-Head toys during therapy today.
It was so awesome for me to hear him making so many verbal requests spontaneously (ex: more, a shoes, a hat, ears, a baby, a mommy, mouth, tie….). Today was my first day to hear him use the article “a” before words. He definitely has all his major facial body parts, and asks for them very spontaneously. I would like to hear “mouth” a little better with the first two sounds, but I still knew what he was asking for. His “R” sounds are really clearing up as well – such as in the words “more” and “ear.” His vowel sounds are almost perfect in most words, so that’s a very good thing. I like that he is taking his time to produce the words clearly and with proper vowels, but not so slow that he is distorting the words.
Also, he is doing very well with imitating 2-word phrases if I only say them 1 time….and he is getting much faster at producing the words. For example…. We were working on i.d. of color and number of objects. He would ask for a Mr. P Head part (ex: hat, ear, nose, eyes….etc) and then I’d give him just two options, “Do you want the yellow hat, or blue hat?” (making sure to emphasize the color word, and talk slowly). He was very quick to say which one – such as “boo hat” or “yewo hat.” He did the exact same thing with multiple primary colors added onto shoes, nose, ears, eyes, etc. I get the feeling he doesn’t understand the meaning of each color word…..but after hearing them more through modeling, he’ll be fine.
In addition to these words/phrases…..he did great asking for help. When he needed grandma and I to open a container for him a few times, we would pause and give him an expectant look and say “Help me!” (slowly, with a more breathy “H”) I heard him say every single letter sound (phoneme) pronounced very well, even if he did need to say it a bit slower than normal. Also, later in the therapy session (when he was needing help again), all I needed to do was give him an expectant look and he automatically said, “Help me!” without me even modeling. Yeh!
Keep up with all your activities at home. It’s making a big difference!
See you next week, and have a good weekend!
~Amy
So, in an effort to make it really easy to track what words Ian is mastering, we've set up a twitter account for Ian:
twitter.com/ianspeaks
I cannot imagine that everyone will find this nearly as interesting as Sarah, myself, and our auditory-verbal therapist Amy - but in case you feel the need for up-to-the-minute updates on words Ian 1) understands 2) can use when prompted or 3) uses spontaneously - you have been warned if you follow!
For ease of reading the twitter feed, (and so this is written down somewhere)
u <word> - Ian understands this word
p <word> - Ian can repeat this word when prompted
s <word> - Ian uses this word spontaneously
Sarah and I will both be updating the feed. We will probably come up with some other short hand to indicate pronunciation success and speech babble stuff we're doing with him... but it's late and there is only so much folksonomy I can invent for this right now.
-J
All very good progress the last couple of weeks! He is communicating more with us and with his peers at school.
Last week, Sarah and I were in the kitchen and we were hugging, and he came over and signed "mom" and "dad" and asked to be picked up - it was very sweet and the first time when he named both of us specifically at the same time - he had been calling everybody "dad" or "granddad" most of the time before.
I like that it addresses questions about membership in the Deaf community and culture.
Interview with Tammy 1 year after receiving her cochlear implant
The rest of the series is pretty interesting as well!
-J
Photos by Brent
Here are some photos from the event:
Ian had a lot of fun playing with the other kiddos at the event.
We met another family there that has a son who attends TSD; their son has a single CI and signs as well as speaks. He is a couple years older than Ian and has been in the TSD program for a while.
I really appreciate that the audiology department puts this event on, since we don't get to see all the other CI kids in central texas that often - it's nice to not be alone and be able to talk to parents that are working with their kids on developing speech and language.
So Ian is having more conversational interactions with us lately.
Last night, I took him to his room to put him to bed, and he pointed to himself and made the sign for "awake".
I signed back to him that it was time to go to sleep. He signed sleep back to me and started to lie down.
He is also explicitly asking for help, also.
We are going to start doing more auditory verbal work with him as well - I'm pleased with his progress with sign, and I would like to see him using his voice to communicate also. We have some games that we can play with him to explore this, and are going to make some time in the day for this practice. He is definitely noticing sound more, and our next step is to get him to "play" with sound and his voice.
We're about 20 pages into The Hobbit, which I have decided to use as our daily reading - Sarah ordered an illustrated version of the book for me to read to him. This will give him a structured listening activity every day, and hopefully will build his listening skills. Right now he pays attention to me reading less than I would like, although it is getting better and more consistent.
Jack
| Surgeon - PAID | $5,600 |
| Anesthesia (1) PAID | $820 |
| Hospital (2) | $17,000 |
| Devices - PAID | $45,396 |
| Testing Costs (3) | $17,059 |
Total: $85,875.00
(1) We have not received our final bill from Anesthesia. The $820 figure was based on a 2.5 hour procedure; Ian's ran closer to 6 hours, so we're probably looking at at least double that figure. We paid in advance to get a discount for anesthesia services.
(2) We are still negotiating with the hospital over our final costs. Since his surgery went longer than expected the cost for this portion nearly doubled. We had originally estimated $10,000 for this based on prior surgeries and a negotiated discount.
(3) All of our outstanding claims with HR Trust have not been paid, and since they recently ceased operations in Texas due to the Cease and Desist order by the Texas Department of Insurance, we may not recover any of this. We are talking to the Department weekly about our case, and they are aware that we have a large number of outstanding claims with the insurer. There is also a good chance that the costs for Craig's birth will not be paid for as well, especially if the insurer does not have any money.
Everybody that has been paid so far is sitting either on my business credit line or a credit card.
So far we, have raised a grand total of:
Total Raised: $35,000.00
Additional Pledged So Far: $15,000
Total Needed Pledges: $35,875.00
Thanks for everyone's support!
Jack, Sarah, Ian and Craig
Thanks for everybody's support the last 48 hours, we were caught by surprise with this whole deal.
-J
We're going to be in the hospital at least through tomorrow afternoon - they are waiting for the culture to grow some more so they can identify it and treat it with a more targeted anti-biotic.
Another night at the hospital!
If you're at all bored and want to visit, we're in room 344! You can reach us on our cells or at the room number 324-0344.
- Location:Dell Children's Hospital, Room 344
He had a 2nd test, a contrast x-ray of his bladder. We should have results soon.
-J
