Category 障害者福祉(Disability Welfare)
今日したこと。
What's done today.
1. パパの過去約一年分の在宅介護サービスの勤務時間表に記入後、送付。
1. Completed and sent IHSS timesheets for retroactive payment.
障がい者福祉の一環。
One of welfare for disabled.
パパもママもLeoを介護して給料をいただきます。
My wife and I are getting paid as caregiver for Leo.
2. ワクチン打ちません宣言
2. Declared no vaccine for Leo
様々な弊害が指摘されるワクチンは打ちませんと学校側に伝えた。
After extensive study, we submitted the document for the vaccine waiver to his school. Too many bad stuff in it and no vaccine is needed for him.
3. Eye-tracking deviceを自分で作ってみようと調べた。いまはChromeなどのブラウザがすでに目の動きを追うから、意外に簡単にできそうだ。
3. Researched if I can make Eye-tracking device by myself. Nowadays a browser like Chrome can chase eye movement, so looks like it is not that difficult.
自分の専門をいかして、Leoを、そして同じ障がい者をもつ人のためになれることは何か、常々考えていた。
I have been always thinking how to use my skills and what I can do to help Leo and other disabled kids like him who cannot verbally communicate.
今日、そのヒントを得たような気がする。
Today, I think I got a clue for that.
今週すべきこと
To Do List this week
1. 半年ぶりの神経科の主治医と面会(金曜日)
1. Neurologist appointment (Friday) for the first time in 6 months
2. 面会のアジェンダ作成
2. Make agenda for the appoitment
遺伝子検査結果のレビュー (Review Whole Exome Sequencing results)
筋肉の生検の予約 (Schedule Muscle biopsy)
左のタマタマちゃんの手術について (Discuss about the operation for saving his left ball)
MRIの予約(脳の再確認) (Schedule MRI for re-examining current state)
体内重金属検査の予約 (Schedule heavy metal test)
血液検査の予約(数値再確認) (schedule blood test for re-examining current state)
食物アレルギー検査の予約 (schedule food allergy test)
介護必需品購入のための文書 (get documents to obtain Durable Medical Equipment)
Eye tracking device + mount
トイレ補助イス (support chair for toilet)
Tomato Chair
嚥下障害検査(Swallowing test)
ワクチン接種の放棄(Vaccine waiver)
症状の悪化と共に酸っぱいものが食べれなくなっている件(about becoming unable to eat sour food as symptoms get worse)
セラピー関係 (Schedule therapies)
OP,PT,SLP、
ホースセラピー、(Horse therapy)
水中セラピー、その他 (water therapy, and others)
3. 学校の言語療法士からの評価表のフォローアップ(Eye tracking device購入に必要)
3. Follow uo with the school Speech and Language Pathologist on the evaluation report (needed for purchasing Eye tracking device)
4. Tomato Chair 購入のため地域センター、保険の再確認
4. Check Regional Center on what needs to be done for purchasing Tomato Chair, check also insurance
5. 金曜日に休みを取る
5. Take Friday Off
やることたくさんだ^_^
Too many stuff to do...:-)
What's done today.
1. パパの過去約一年分の在宅介護サービスの勤務時間表に記入後、送付。
1. Completed and sent IHSS timesheets for retroactive payment.
障がい者福祉の一環。
One of welfare for disabled.
パパもママもLeoを介護して給料をいただきます。
My wife and I are getting paid as caregiver for Leo.
2. ワクチン打ちません宣言
2. Declared no vaccine for Leo
様々な弊害が指摘されるワクチンは打ちませんと学校側に伝えた。
After extensive study, we submitted the document for the vaccine waiver to his school. Too many bad stuff in it and no vaccine is needed for him.
3. Eye-tracking deviceを自分で作ってみようと調べた。いまはChromeなどのブラウザがすでに目の動きを追うから、意外に簡単にできそうだ。
3. Researched if I can make Eye-tracking device by myself. Nowadays a browser like Chrome can chase eye movement, so looks like it is not that difficult.
自分の専門をいかして、Leoを、そして同じ障がい者をもつ人のためになれることは何か、常々考えていた。
I have been always thinking how to use my skills and what I can do to help Leo and other disabled kids like him who cannot verbally communicate.
今日、そのヒントを得たような気がする。
Today, I think I got a clue for that.
今週すべきこと
To Do List this week
1. 半年ぶりの神経科の主治医と面会(金曜日)
1. Neurologist appointment (Friday) for the first time in 6 months
2. 面会のアジェンダ作成
2. Make agenda for the appoitment
遺伝子検査結果のレビュー (Review Whole Exome Sequencing results)
筋肉の生検の予約 (Schedule Muscle biopsy)
左のタマタマちゃんの手術について (Discuss about the operation for saving his left ball)
MRIの予約(脳の再確認) (Schedule MRI for re-examining current state)
体内重金属検査の予約 (Schedule heavy metal test)
血液検査の予約(数値再確認) (schedule blood test for re-examining current state)
食物アレルギー検査の予約 (schedule food allergy test)
介護必需品購入のための文書 (get documents to obtain Durable Medical Equipment)
Eye tracking device + mount
トイレ補助イス (support chair for toilet)
Tomato Chair
嚥下障害検査(Swallowing test)
ワクチン接種の放棄(Vaccine waiver)
症状の悪化と共に酸っぱいものが食べれなくなっている件(about becoming unable to eat sour food as symptoms get worse)
セラピー関係 (Schedule therapies)
OP,PT,SLP、
ホースセラピー、(Horse therapy)
水中セラピー、その他 (water therapy, and others)
3. 学校の言語療法士からの評価表のフォローアップ(Eye tracking device購入に必要)
3. Follow uo with the school Speech and Language Pathologist on the evaluation report (needed for purchasing Eye tracking device)
4. Tomato Chair 購入のため地域センター、保険の再確認
4. Check Regional Center on what needs to be done for purchasing Tomato Chair, check also insurance
5. 金曜日に休みを取る
5. Take Friday Off
やることたくさんだ^_^
Too many stuff to do...:-)
Category 障害者福祉(Disability Welfare)
一ヶ月ぶりの更新。なかなか日々忙しい。
Updated for the first time in more than a month. Busy everyday.
Leoもいよいよあと数ヶ月で、今行っている障害児のプレスクールを卒業し、今秋から近所の小学校のキンダーに入る。
Leo will graduate from the special education preschool and is going to the neighborhood Kindergarten this coming fall.
そこで、もう2週間前の2月28日になるが、今の学校の先生達と関係者、そして次のキンダーの先生達総勢10人程とミーティングを行った。
So we had a big meeting two weeks ago on the 28 of February, with more than 10 teachers, therapists, and others from both schools.
今年一年のLeoの成果と来年の目標、キンダー移行の手続きや、Leoのサポートや、Leoに必要なものをリストアップ。
We discussed about the achievement he made this year, and the goal for the next year, the procedures to transfer to the kindergarten, his support equipment, and others.
キンダーでは特別学級でLeoにあったプログラムをやることになった。
Leo will be in the special education class, doing individualized program for improving his functional skills.
そこで、議題にあがったのが、意思疎通の問題。
The big topic we discussed is communication.
最近のLeoは、より音を発するのが困難になり、体幹がぐらぐらで指で意思表示もできなくなってきた。
Lately it has been more difficult for Leo to utter sounds due to unstable trunk and now he cannot point what he wants by fingers or any other body parts.
なのでただひたすら、したいこと、欲しいものをじっと見ることで、意思を伝える傾向が強くなってきた。
So he now tends to gaze at what he wants.
自分の意思どうりに体が動かないから、彼自身の最善の方法なのだろう。
I can easily imagine that he thinks this is the best method for him to communicate because he himself understands that his body parts are not controlled.
でも、我々親はそれがわかっても、他の人はそれでは分からない。
And we parents know what he wants but not the others.
今後、小学校に入って勉強するにも、意志表示ができなければ、分かっているのかも分からない。
Studying at school does require communication and no one can tell what he wants without it.
正解、不正解のフィードバックも得られないから、脳の学習機能も発達しない。
And for his brain, since it does not get any feedback signal of whether he got the answer right or wrong, it is not good for his intellectual development.
何とか意思を伝える方法がないものか？
Is there any other method that he can use to express what he wants?
ずっと考えた結果、先生達に目で意思表示する装置はどうかと提案した。
After a long brainstorming, we proposed if he can obtain some eye tracking device for communication.
そしたら、どうやら先生達も同じことを考えていたようで、試してみようということに。
Then it turned out even teachers had been thinking the same thing, so we decided to give it a shot.
そして、昨日、Leo、目で意思表示する装置に初挑戦！
So here is Leo, trying the device yesterday.
この装置、なんと140万円だそうです（驚！
This stuff costs $14K!(OMG!
最初はなんだこれって感じでしたが、、、
At first, we was just curious...
だんだん慣れてきて、上手に目でカーソルを動かせるように！不思議と首も安定してる！
But soon, he got it and could move cursor by his eyes! And it is interesting that his head/neck is more stable than the beginning.
牛はどれ？など、いろんな質問にすぐ答えれた！
He was answering very quickly to the questions like "where is the cow?"
先生達も大興奮！
The teachers were so excited!
そして、何より、Leoの満面の笑顔！
And what's best is Leo's great smile!
ほんとうにうれしかったんだろう...
He looked so happy!
これでトイレに行きたいとか、のどが渇いたとか、アルファベット、数字、言葉など、もう動かない体を使って指さししなくていいね。
With this, he can express if he wants to go to the bathroom, feels thirsty, Alphabets, numbers, words, and others! No need to struggle and get frustrated with his uncontrolled body parts.
涙が出るくらい感動して、信じられないくらい希望が持てた。
I was so moved, almost crying, and started having an unbelievably big hope.
そんな一日になった。
That made my day.
Leo。
Leo.
なるべく早くこの装置をGETしてやるからな！
I will get it for you ASAP!
そして、パパと将来、冗談でも言い合おうぜ！
And let's joke each other in the near future!
Updated for the first time in more than a month. Busy everyday.
Leoもいよいよあと数ヶ月で、今行っている障害児のプレスクールを卒業し、今秋から近所の小学校のキンダーに入る。
Leo will graduate from the special education preschool and is going to the neighborhood Kindergarten this coming fall.
そこで、もう2週間前の2月28日になるが、今の学校の先生達と関係者、そして次のキンダーの先生達総勢10人程とミーティングを行った。
So we had a big meeting two weeks ago on the 28 of February, with more than 10 teachers, therapists, and others from both schools.
今年一年のLeoの成果と来年の目標、キンダー移行の手続きや、Leoのサポートや、Leoに必要なものをリストアップ。
We discussed about the achievement he made this year, and the goal for the next year, the procedures to transfer to the kindergarten, his support equipment, and others.
キンダーでは特別学級でLeoにあったプログラムをやることになった。
Leo will be in the special education class, doing individualized program for improving his functional skills.
そこで、議題にあがったのが、意思疎通の問題。
The big topic we discussed is communication.
最近のLeoは、より音を発するのが困難になり、体幹がぐらぐらで指で意思表示もできなくなってきた。
Lately it has been more difficult for Leo to utter sounds due to unstable trunk and now he cannot point what he wants by fingers or any other body parts.
なのでただひたすら、したいこと、欲しいものをじっと見ることで、意思を伝える傾向が強くなってきた。
So he now tends to gaze at what he wants.
自分の意思どうりに体が動かないから、彼自身の最善の方法なのだろう。
I can easily imagine that he thinks this is the best method for him to communicate because he himself understands that his body parts are not controlled.
でも、我々親はそれがわかっても、他の人はそれでは分からない。
And we parents know what he wants but not the others.
今後、小学校に入って勉強するにも、意志表示ができなければ、分かっているのかも分からない。
Studying at school does require communication and no one can tell what he wants without it.
正解、不正解のフィードバックも得られないから、脳の学習機能も発達しない。
And for his brain, since it does not get any feedback signal of whether he got the answer right or wrong, it is not good for his intellectual development.
何とか意思を伝える方法がないものか？
Is there any other method that he can use to express what he wants?
ずっと考えた結果、先生達に目で意思表示する装置はどうかと提案した。
After a long brainstorming, we proposed if he can obtain some eye tracking device for communication.
そしたら、どうやら先生達も同じことを考えていたようで、試してみようということに。
Then it turned out even teachers had been thinking the same thing, so we decided to give it a shot.
そして、昨日、Leo、目で意思表示する装置に初挑戦！
So here is Leo, trying the device yesterday.
この装置、なんと140万円だそうです（驚！
This stuff costs $14K!(OMG!
最初はなんだこれって感じでしたが、、、
At first, we was just curious...
だんだん慣れてきて、上手に目でカーソルを動かせるように！不思議と首も安定してる！
But soon, he got it and could move cursor by his eyes! And it is interesting that his head/neck is more stable than the beginning.
牛はどれ？など、いろんな質問にすぐ答えれた！
He was answering very quickly to the questions like "where is the cow?"
先生達も大興奮！
The teachers were so excited!
そして、何より、Leoの満面の笑顔！
And what's best is Leo's great smile!
ほんとうにうれしかったんだろう...
He looked so happy!
これでトイレに行きたいとか、のどが渇いたとか、アルファベット、数字、言葉など、もう動かない体を使って指さししなくていいね。
With this, he can express if he wants to go to the bathroom, feels thirsty, Alphabets, numbers, words, and others! No need to struggle and get frustrated with his uncontrolled body parts.
涙が出るくらい感動して、信じられないくらい希望が持てた。
I was so moved, almost crying, and started having an unbelievably big hope.
そんな一日になった。
That made my day.
Leo。
Leo.
なるべく早くこの装置をGETしてやるからな！
I will get it for you ASAP!
そして、パパと将来、冗談でも言い合おうぜ！
And let's joke each other in the near future!
Category 障害者福祉(Disability Welfare)
IHSSのオリエンテーションに行って来た。
I went to the enrollment session for IHSS.
IHSSとは、In-Home Supportive Servicesの頭文字をとったもの。
IHSS stands for In-Home Supportive Services.
日本語だと「在宅介護サービス」でアメリカの障害者福祉の一つ。
In Japanese, it is "ZAITAKU (in-home) KAIGO (supportive) SAABISU (service)" and it is part of the welfare system for disabiled people in the U.S.
障害者のLeoは家で彼の介護をしてくれる人を雇うことができる。
Leo, disabled for now, can hire aides to take care of him at home.
このシステムの優れた点は、親も介護提供者と登録でき、そして州から給料ももらえるという点。
What's great about the system is that even parents can register themselves as a caregiver and get paid by the State.
設立の目的は、
Original goal of the system is:
- 障害者が施設に入った場合にかかるコストより、家で家族が看てくれた方が州の財政的に負担が少ない
to reduce state cost
(it is more expensive for a disabled person in a facility than at home)
- 障害者の家族は介護のために外で働く事が難しいので、介護を通した財政支援を提供する
to provide financial support via the system to parents of a disabled person,
who often have hard time working outside of their home.
ことらしい。
Well thought, I think.
もちろん、時給はほぼ最低賃金で月にかなり少ない決められた時間のみだが、何かと出費が多い障害者の親にとっては、正直ありがたい。
Of course, the wage is almost minimum for only a limited hours per month, but it is better than nothing for us, parents of a disabled kid and helps the financial burden with him.
州の労働組合費も払うし、保険も適用になるパートの州公務員といったところかな。
The law mandates the providers to pay the Union fee, so we are working as a union worker for the State.
これでLeoが雇用者で、パパとママが被雇用者という、アメリカらしい関係が成立。
So Leo is our employer and we are serving for him on a contract. Cool, isn't it?
Leoにずっと仕えることができるように、いつまでも若くいないと！
So we need to stay fit and young so that we can serve for him forever.
ね、Leo(^^)
Right, Leo:-)
I went to the enrollment session for IHSS.
IHSSとは、In-Home Supportive Servicesの頭文字をとったもの。
IHSS stands for In-Home Supportive Services.
日本語だと「在宅介護サービス」でアメリカの障害者福祉の一つ。
In Japanese, it is "ZAITAKU (in-home) KAIGO (supportive) SAABISU (service)" and it is part of the welfare system for disabiled people in the U.S.
障害者のLeoは家で彼の介護をしてくれる人を雇うことができる。
Leo, disabled for now, can hire aides to take care of him at home.
このシステムの優れた点は、親も介護提供者と登録でき、そして州から給料ももらえるという点。
What's great about the system is that even parents can register themselves as a caregiver and get paid by the State.
設立の目的は、
Original goal of the system is:
- 障害者が施設に入った場合にかかるコストより、家で家族が看てくれた方が州の財政的に負担が少ない
to reduce state cost
(it is more expensive for a disabled person in a facility than at home)
- 障害者の家族は介護のために外で働く事が難しいので、介護を通した財政支援を提供する
to provide financial support via the system to parents of a disabled person,
who often have hard time working outside of their home.
ことらしい。
Well thought, I think.
もちろん、時給はほぼ最低賃金で月にかなり少ない決められた時間のみだが、何かと出費が多い障害者の親にとっては、正直ありがたい。
Of course, the wage is almost minimum for only a limited hours per month, but it is better than nothing for us, parents of a disabled kid and helps the financial burden with him.
州の労働組合費も払うし、保険も適用になるパートの州公務員といったところかな。
The law mandates the providers to pay the Union fee, so we are working as a union worker for the State.
これでLeoが雇用者で、パパとママが被雇用者という、アメリカらしい関係が成立。
So Leo is our employer and we are serving for him on a contract. Cool, isn't it?
Leoにずっと仕えることができるように、いつまでも若くいないと！
So we need to stay fit and young so that we can serve for him forever.
ね、Leo(^^)
Right, Leo:-)
