Category つぶやき (Tweets)
アメリカは卒業式シーズン真っ只中。
It is the graduation season here in the States.
Leoも2年ちょっとお世話になっている今の特別学校を19日に卒業します。
And on the 19th, Leo will graduate from the special education school that he's been going for the last 2+ years.
いつも一年の締めくくりの発表会がありるんだけど、あの学校で見る最後の発表会になるのか～
At the end of a school year, they have a performance show, but it will be the last performance at that school...
一緒にLeoのことを支えてくれた、言わば同志の先生たちやセラピストの先生たちに別れを言うのは本当につらい。
It is tough to say goodbye to all those teachers and therapists since they really supported Leo well.
本当にお世話になったから…
and supported us well too...
Leoが大好きなキャロリン先生ともお別れだね。
Leo. Especially tough to say googbye to Ms. Caroline who you like the best, isn't it?
トイレもキャロリン先生じゃないと嫌なんだもんね。
You always want not anyone else but her to take you to the bathroom, right?
今年の発表会は何を見せてくれるのかな？
What will you show us this year?
いっぱいありがとうって言って、いっぱいハグしてこようね。
Let's tell them thank you a lot and give lots of hugs!
その日ばかりはいっぱい泣いていいからね。
You can cry as you want there.
パパもママもこらえきれないと思うから…
Because me and your mom cannot help but do the same...
今まで本当にありがとうってね。
Let's say thank you very much together for everything.
新しい学校に行っても、頑張るよって宣言してこよう！
And let's declare you will keep going forward st the new school too!
そして、最後は笑顔でね。
And with a lot of smile at the end.
Leoらしく、ね(^^)
Much like you do everyday:-)
It is the graduation season here in the States.
Leoも2年ちょっとお世話になっている今の特別学校を19日に卒業します。
And on the 19th, Leo will graduate from the special education school that he's been going for the last 2+ years.
いつも一年の締めくくりの発表会がありるんだけど、あの学校で見る最後の発表会になるのか～
At the end of a school year, they have a performance show, but it will be the last performance at that school...
一緒にLeoのことを支えてくれた、言わば同志の先生たちやセラピストの先生たちに別れを言うのは本当につらい。
It is tough to say goodbye to all those teachers and therapists since they really supported Leo well.
本当にお世話になったから…
and supported us well too...
Leoが大好きなキャロリン先生ともお別れだね。
Leo. Especially tough to say googbye to Ms. Caroline who you like the best, isn't it?
トイレもキャロリン先生じゃないと嫌なんだもんね。
You always want not anyone else but her to take you to the bathroom, right?
今年の発表会は何を見せてくれるのかな？
What will you show us this year?
いっぱいありがとうって言って、いっぱいハグしてこようね。
Let's tell them thank you a lot and give lots of hugs!
その日ばかりはいっぱい泣いていいからね。
You can cry as you want there.
パパもママもこらえきれないと思うから…
Because me and your mom cannot help but do the same...
今まで本当にありがとうってね。
Let's say thank you very much together for everything.
新しい学校に行っても、頑張るよって宣言してこよう！
And let's declare you will keep going forward st the new school too!
そして、最後は笑顔でね。
And with a lot of smile at the end.
Leoらしく、ね(^^)
Much like you do everyday:-)
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 つぶやき (Tweets)
とにかくなるべく書こう。
Let's write something.
なんでもいいから…
Anything is fine...
毎日じゃくてもいいから。
OK if not everyday.
Leoの状態の走り書きでもなんでもいいから。
Just recording Leo's condition or anything is fine.
今日のLeoは比較的にしっかりしてたかな。
Leo was relatively stable today.
左足のクロスも気持ちマシ。
His left leg crosses less than usual.
二日前に近所を3キロぐらい歩行器であるいたからかな？
He walked in the gait trainer 2 miles around our neighborhood 2 days ago.
昨日一週間ぶりに大が出たし、今日もシャワー中に大が2回も！
He made No. 2 yesterday, and No.2 twice today while taking a shower!
一緒に入っていたママとSenaからのヘルプ要請でパパがピックアップ！のドタバタ劇。
My wife and Sena were with him and they screamed for my help, so I ran upstairs and picked them up.
それでも二日連続で出たことが嬉しかったし、やっぱり、便秘には運動。あれくらい歩かせないとダメだな～と実感。
It was hectic, but my wife and I were so glad to see them two days in a row. And we felt that more exercise is needed to solve his constipation issue and also thought we need to make him walk even more.
Leo。
Leo.
これから毎朝学校前に一緒に歩こうか？
Do you wanna walk with me every morning before school?
その前に早く起きないとね。
Well, but you need to wake up earlier!
さすがに毎朝9時起床は遅すぎだね。
Waking up at 9 is too late!
今日の日の出は5:40。
Sunrise today is 5:40!
鳥たちのさえずりと、フレッシュなシーブリーズの中を歩くのは気持ちいいよー。
It feels good to walk with birds singing in the fresh sea breeze.
ちょっとずつ早起きしていこうね(^^)
So let's wake up a bit earlier from now on :-)
Let's write something.
なんでもいいから…
Anything is fine...
毎日じゃくてもいいから。
OK if not everyday.
Leoの状態の走り書きでもなんでもいいから。
Just recording Leo's condition or anything is fine.
今日のLeoは比較的にしっかりしてたかな。
Leo was relatively stable today.
左足のクロスも気持ちマシ。
His left leg crosses less than usual.
二日前に近所を3キロぐらい歩行器であるいたからかな？
He walked in the gait trainer 2 miles around our neighborhood 2 days ago.
昨日一週間ぶりに大が出たし、今日もシャワー中に大が2回も！
He made No. 2 yesterday, and No.2 twice today while taking a shower!
一緒に入っていたママとSenaからのヘルプ要請でパパがピックアップ！のドタバタ劇。
My wife and Sena were with him and they screamed for my help, so I ran upstairs and picked them up.
それでも二日連続で出たことが嬉しかったし、やっぱり、便秘には運動。あれくらい歩かせないとダメだな～と実感。
It was hectic, but my wife and I were so glad to see them two days in a row. And we felt that more exercise is needed to solve his constipation issue and also thought we need to make him walk even more.
Leo。
Leo.
これから毎朝学校前に一緒に歩こうか？
Do you wanna walk with me every morning before school?
その前に早く起きないとね。
Well, but you need to wake up earlier!
さすがに毎朝9時起床は遅すぎだね。
Waking up at 9 is too late!
今日の日の出は5:40。
Sunrise today is 5:40!
鳥たちのさえずりと、フレッシュなシーブリーズの中を歩くのは気持ちいいよー。
It feels good to walk with birds singing in the fresh sea breeze.
ちょっとずつ早起きしていこうね(^^)
So let's wake up a bit earlier from now on :-)
Category つぶやき (Tweets)
先月の母の日のこと。
On the Mother's day last month.
最近は仕事が忙しく、LeoとSenaの面倒をほぼ一人でみてくれているママ。
I have been busy at work lately, so my wife is taking care of Leo and Sena all by herself.
そんなママに何をプレゼントしようかな～と悩む。
So I could not decide a Mother's day gift for her.
で、やっぱりモノよりも時間かな～と思い、ママに子供なし完全フリーな一日をプレゼント。
Then, I decided to give her TIME rather than stuff, so I gave her a full kids free day.
ということで、LeoとSenaをつれてお決まりのSea Worldへ。
So we went to the Sea World, as usual.
それにしてもこの笑顔。何度来ても、やっぱり大好きみたい。
We've been there just so many times, but still look at their happy face! Yes, they love it.
入場してすぐ、最近できた魚に触れるところで、Leoと一緒に小さいサメや白いカブトガニなんかに触れる。
Right by the entrance, there was a new pools where kids can touch small sharks and white horseshoe crabs.
Leoはぐいぐい手を突っ込み、触ったあと、「気持ちわる～い」的な顔をするが、でも大喜び。
Leo was really into that but making "ew" face after touching them. He really enjoyed it.
一方のSenaは怖くて近づいてみることもできず、その場から早く立ち去ろうと必死で号泣。
On the other hand, Sena was so scared that she could not even come close to the pool and cried like crazy in order to leave there.
すぐそこを離れて、いつものように丸一日、いろんなショーや動物を見て回る。
So we left the pools and went to the shows and saw the animals all day as usual.
でも、ここでSenaが避けるもう一つ鬼門が！
Then we passed another place where Sena always tries to avoid!
それはセサミストリートのエルモと一緒に写真を撮るブース。
It is the place where you can take pictures with Elmo from Sesame Street.
Senaは基本的に着ぐるみが怖い。
Sena basically does not like those characters in costume.
だから、それがいると近づこうともせず、10メートル以内に来ようものなら号泣絶叫で大暴れ。
So she usually stays away from there and once it is closer to her, she usually screams, cries, and goes crazy.
が、今までのパターン。
That was the pattern before.
しかし、そのときは、
But this time, it went something like:
パパ： 一緒に写真とってみる？
Sena： うん。もうおねーちゃんだから写真一緒に撮ってみる！
Dad: Do you wanna take a picture with you and Elmo?
Sena: Yeah. I am grown-up now, so I can be in the picture with him!
と宣言。
What a declaration!
列で待っている間も怖そうにしてたが、じっと前の子供たちの様子を観察しながら、下を向いて自分を鼓舞。
She looked scared while waiting in line, observing carefully the kids in front of us, and was looking down and trying to encourage herself.
そして、とうとう生まれて初めてエルモと一緒に写真をとることに成功！
And... yes, finally she did it! For the first time being in the picture with Elmo!
「怖くなかった～！楽しかった～！」
"It was not scary! It was fun!"
満面の笑みとともに、Senaの成長を実感し、ちょっと感激。
Her smile with full of satisfaction made me feel that she's grown up really, so I was a bit moved.
そして、今度は帰り際。
And another thing when we were on our way back to the exit.
また、あの魚に触れるブースを通るとき、「Sena、サメ触ってみる！」と自分から主張。
When we were passing the pools with fish, Sena suddenly claimed by herself "I want to touch the sharks!"
恐る恐るだが、自分から手を入れて、小さなサメについに触れる。
She looked scared again but she finally put her hands in the water and touched a little shark!
「うわ～。ざらざらしてるね～」と、これまた満面の笑み。
"Wow! The skin feet rough!" again a big smile followed.
たった一日で出来なかったことが2つ出来るようになったSena。
She overcame two things in a single day that she was not able to do before.
「子供の成長」を実感し、素直に感動する。
Again, I could not help but feel her growth and very moved by that.
でも同時に、そこではっと気づく。
However at the same time, I realized one thing...
正直、こんな風に「子供の成長」を実感したのは、実は初めてのような気が…
Honestly, this is the first time I felt our kids' growth.
今日みたいに、以前できなかったことが少しずつ出来るようになっていく妹のSena。
Like what happened today, Sena is becoming able to do what she was unable to do before, little by little.
そして、その隣で、以前できてたことが、少しずつ出来なくなっている兄のLeo。
And next to her is her brother Leo who is becoming unable to do what he was able to do before, little by little.
Leoはそんな妹を見てどう思っているんだろう…
I wondered what Leo is thinking about her sister becoming able to do anything...
そして、そんな自分を見てどう感じているんだろう…
And also wondered what he is feeling about himself, becoming unable to do anything...
感動と共にちょっと複雑な心境になる。
I was moved but felt sad at the same time.
そんな一日だった。
It was a day like that.
Leo、Sena。
この先、色んなことが待っているけど、お互いに支えあって、これからも生きていこうね。
There will be so many things waiting for us, but let's support each other and get it going.
兄妹で仲良く…
With brother and sister together...
そして、家族みんなで力を合わせて…
And with a whole family together...
On the Mother's day last month.
最近は仕事が忙しく、LeoとSenaの面倒をほぼ一人でみてくれているママ。
I have been busy at work lately, so my wife is taking care of Leo and Sena all by herself.
そんなママに何をプレゼントしようかな～と悩む。
So I could not decide a Mother's day gift for her.
で、やっぱりモノよりも時間かな～と思い、ママに子供なし完全フリーな一日をプレゼント。
Then, I decided to give her TIME rather than stuff, so I gave her a full kids free day.
ということで、LeoとSenaをつれてお決まりのSea Worldへ。
So we went to the Sea World, as usual.
それにしてもこの笑顔。何度来ても、やっぱり大好きみたい。
We've been there just so many times, but still look at their happy face! Yes, they love it.
入場してすぐ、最近できた魚に触れるところで、Leoと一緒に小さいサメや白いカブトガニなんかに触れる。
Right by the entrance, there was a new pools where kids can touch small sharks and white horseshoe crabs.
Leoはぐいぐい手を突っ込み、触ったあと、「気持ちわる～い」的な顔をするが、でも大喜び。
Leo was really into that but making "ew" face after touching them. He really enjoyed it.
一方のSenaは怖くて近づいてみることもできず、その場から早く立ち去ろうと必死で号泣。
On the other hand, Sena was so scared that she could not even come close to the pool and cried like crazy in order to leave there.
すぐそこを離れて、いつものように丸一日、いろんなショーや動物を見て回る。
So we left the pools and went to the shows and saw the animals all day as usual.
でも、ここでSenaが避けるもう一つ鬼門が！
Then we passed another place where Sena always tries to avoid!
それはセサミストリートのエルモと一緒に写真を撮るブース。
It is the place where you can take pictures with Elmo from Sesame Street.
Senaは基本的に着ぐるみが怖い。
Sena basically does not like those characters in costume.
だから、それがいると近づこうともせず、10メートル以内に来ようものなら号泣絶叫で大暴れ。
So she usually stays away from there and once it is closer to her, she usually screams, cries, and goes crazy.
が、今までのパターン。
That was the pattern before.
しかし、そのときは、
But this time, it went something like:
パパ： 一緒に写真とってみる？
Sena： うん。もうおねーちゃんだから写真一緒に撮ってみる！
Dad: Do you wanna take a picture with you and Elmo?
Sena: Yeah. I am grown-up now, so I can be in the picture with him!
と宣言。
What a declaration!
列で待っている間も怖そうにしてたが、じっと前の子供たちの様子を観察しながら、下を向いて自分を鼓舞。
She looked scared while waiting in line, observing carefully the kids in front of us, and was looking down and trying to encourage herself.
そして、とうとう生まれて初めてエルモと一緒に写真をとることに成功！
And... yes, finally she did it! For the first time being in the picture with Elmo!
「怖くなかった～！楽しかった～！」
"It was not scary! It was fun!"
満面の笑みとともに、Senaの成長を実感し、ちょっと感激。
Her smile with full of satisfaction made me feel that she's grown up really, so I was a bit moved.
そして、今度は帰り際。
And another thing when we were on our way back to the exit.
また、あの魚に触れるブースを通るとき、「Sena、サメ触ってみる！」と自分から主張。
When we were passing the pools with fish, Sena suddenly claimed by herself "I want to touch the sharks!"
恐る恐るだが、自分から手を入れて、小さなサメについに触れる。
She looked scared again but she finally put her hands in the water and touched a little shark!
「うわ～。ざらざらしてるね～」と、これまた満面の笑み。
"Wow! The skin feet rough!" again a big smile followed.
たった一日で出来なかったことが2つ出来るようになったSena。
She overcame two things in a single day that she was not able to do before.
「子供の成長」を実感し、素直に感動する。
Again, I could not help but feel her growth and very moved by that.
でも同時に、そこではっと気づく。
However at the same time, I realized one thing...
正直、こんな風に「子供の成長」を実感したのは、実は初めてのような気が…
Honestly, this is the first time I felt our kids' growth.
今日みたいに、以前できなかったことが少しずつ出来るようになっていく妹のSena。
Like what happened today, Sena is becoming able to do what she was unable to do before, little by little.
そして、その隣で、以前できてたことが、少しずつ出来なくなっている兄のLeo。
And next to her is her brother Leo who is becoming unable to do what he was able to do before, little by little.
Leoはそんな妹を見てどう思っているんだろう…
I wondered what Leo is thinking about her sister becoming able to do anything...
そして、そんな自分を見てどう感じているんだろう…
And also wondered what he is feeling about himself, becoming unable to do anything...
感動と共にちょっと複雑な心境になる。
I was moved but felt sad at the same time.
そんな一日だった。
It was a day like that.
Leo、Sena。
この先、色んなことが待っているけど、お互いに支えあって、これからも生きていこうね。
There will be so many things waiting for us, but let's support each other and get it going.
兄妹で仲良く…
With brother and sister together...
そして、家族みんなで力を合わせて…
And with a whole family together...
