Category Encinitas Life
今日はイースターサンデー。Senaが通うプリスクールのイベントに参加してきた。キリスト教の学校だから、ミサの前に子供たちの歌の発表会があるというので楽しみ、というより不安MAXで会場に。
Happy Easter! We went to an Easter event held at Sena's preschool. The school is run by a Christian church and the event included some singing by the kids including Sena. We were a bit worried about it than looking forward to it, honestly.
実は前回クリスマスの時の発表会は、Senaが入場前に大泣きで結局ステージに上がらず。今回は大丈夫かな～なんて心配していたら、案の定…。泣きはしなかったけど、はっきり拒絶。内弁慶で困ってます。ホント。
The reason is... We had a similar singing event during the Christmas last year and Sena was so crying that she did not go on the stage. We were crossing our fingers but it did not happen this time either. She did not cry but did rejected going on the stage like kast time. She becomes shy in front of many people, although she is like a diva at home singing some songs all the time:-(
まあ、でもその後はLeoもSenaも、エッグハント、パペットショー、フェイスペイントなど一通り遊んだから満足したみたい。
But after that, we seemed satisfied with all the events like egg hunt, puppet shows, face painting, etc.
それにしても暑かったな～。
It was just hot today...
午後はおうちでお花植え。うちのあたりは花の栽培で有名みたいで、この時期あたりから街が花で一杯になる。うちもそろそろということで。子供たちも興味深々。ロイも気になるみたい（＾＾
Coming back home in the afternoon, we planted some flowers. Flower industry is a huge business in our neighborhood and it is full of flowers everywhere nearby around this time of the year. Kids helped us a lot and Roy, our dog, is having fun too.
LeoもSenaもジョウロで水やり。体幹を鍛えるいい運動です！
Leo and Sena, watering the followers. Good training for his trunk.
家の隣の木には綺麗な花が…。何の花なんでしょう。
Blooming flower on the tree at our house, although I don't know what tree it is...
いや～。もうすっかり春ですね～。
Feels like totally spring!
こんな花たちが気持ちを少し軽くしてくれます。
Beautiful flowers like these easing our daily concerns...
人気ブログランキングへ
Happy Easter! We went to an Easter event held at Sena's preschool. The school is run by a Christian church and the event included some singing by the kids including Sena. We were a bit worried about it than looking forward to it, honestly.
実は前回クリスマスの時の発表会は、Senaが入場前に大泣きで結局ステージに上がらず。今回は大丈夫かな～なんて心配していたら、案の定…。泣きはしなかったけど、はっきり拒絶。内弁慶で困ってます。ホント。
The reason is... We had a similar singing event during the Christmas last year and Sena was so crying that she did not go on the stage. We were crossing our fingers but it did not happen this time either. She did not cry but did rejected going on the stage like kast time. She becomes shy in front of many people, although she is like a diva at home singing some songs all the time:-(
まあ、でもその後はLeoもSenaも、エッグハント、パペットショー、フェイスペイントなど一通り遊んだから満足したみたい。
But after that, we seemed satisfied with all the events like egg hunt, puppet shows, face painting, etc.
それにしても暑かったな～。
It was just hot today...
午後はおうちでお花植え。うちのあたりは花の栽培で有名みたいで、この時期あたりから街が花で一杯になる。うちもそろそろということで。子供たちも興味深々。ロイも気になるみたい（＾＾
Coming back home in the afternoon, we planted some flowers. Flower industry is a huge business in our neighborhood and it is full of flowers everywhere nearby around this time of the year. Kids helped us a lot and Roy, our dog, is having fun too.
LeoもSenaもジョウロで水やり。体幹を鍛えるいい運動です！
Leo and Sena, watering the followers. Good training for his trunk.
家の隣の木には綺麗な花が…。何の花なんでしょう。
Blooming flower on the tree at our house, although I don't know what tree it is...
いや～。もうすっかり春ですね～。
Feels like totally spring!
こんな花たちが気持ちを少し軽くしてくれます。
Beautiful flowers like these easing our daily concerns...
人気ブログランキングへ
Category Encinitas Life
どっピーカンの土曜日。この時期恒例のカールスバッドのお花畑に行ってきた。ここはとにかく広くて、海も見えてとても綺麗。Leoも今日は調子が良かったみたいで、ぐるりと一周たくさん歩いたね。よしよし！
Sunny Saturday! The spring has come, so we went to the Flower Field in Carlsbad! This is a huge field and you can see the beautiful ocean. Leo was great today and walked across the field a lot. A good exercise!
一方のSenaは着いて数十分で飽き飽き。「公園いこ～」っと連呼の嵐。午後になっても連呼してるので、仕方なく近所の公園へ。とにかくSenaは一日一回公園行かないと気がすまない。そしてこの満面の笑み（＾＾。やっぱり子供にはお花よりも公園か…（＾＾
On the other hand, Sena was totally bored 10-20 minutes after we got there. She was repeatedly saying "I wanna go to the park!" and it continues in the afternoon, so we took them to the park nearby. Sena requires a visit to a park almost once a day and look at her smile below:-) Parks are more important for kids than flowers...
Leoは基本、ブランコは嫌い。やっぱり体幹が安定しないからかな～。頭もがくんと後ろに行ったりするから、ブランコのときは要注意。それでもジャングルジムや滑り台は大好き。でも、ずっと中腰で付きっ切りだからパパの腰が…。
Unlike Sena, Leo does not like swings because his trunk area is unstable and the swings make it even more unstable. His head also sometimes swings back and forth, so we need extra attention while he is in the swing. But he loves going on the playing structure and slides. All with our support, so my back is often screaming...
これからは、もっともっと体力勝負。体を鍛えるためにもサーフィン行かないと。最近全然行ってないし…
ねっ。いいでしょ？ママ？
More and more, it is all a matter of our physical to assist him, so I need to go surfing more often to train myself. I have not gone surfing for a while, so can I go, sweetheart?
人気ブログランキングへ
Sunny Saturday! The spring has come, so we went to the Flower Field in Carlsbad! This is a huge field and you can see the beautiful ocean. Leo was great today and walked across the field a lot. A good exercise!
一方のSenaは着いて数十分で飽き飽き。「公園いこ～」っと連呼の嵐。午後になっても連呼してるので、仕方なく近所の公園へ。とにかくSenaは一日一回公園行かないと気がすまない。そしてこの満面の笑み（＾＾。やっぱり子供にはお花よりも公園か…（＾＾
On the other hand, Sena was totally bored 10-20 minutes after we got there. She was repeatedly saying "I wanna go to the park!" and it continues in the afternoon, so we took them to the park nearby. Sena requires a visit to a park almost once a day and look at her smile below:-) Parks are more important for kids than flowers...
Leoは基本、ブランコは嫌い。やっぱり体幹が安定しないからかな～。頭もがくんと後ろに行ったりするから、ブランコのときは要注意。それでもジャングルジムや滑り台は大好き。でも、ずっと中腰で付きっ切りだからパパの腰が…。
Unlike Sena, Leo does not like swings because his trunk area is unstable and the swings make it even more unstable. His head also sometimes swings back and forth, so we need extra attention while he is in the swing. But he loves going on the playing structure and slides. All with our support, so my back is often screaming...
これからは、もっともっと体力勝負。体を鍛えるためにもサーフィン行かないと。最近全然行ってないし…
ねっ。いいでしょ？ママ？
More and more, it is all a matter of our physical to assist him, so I need to go surfing more often to train myself. I have not gone surfing for a while, so can I go, sweetheart?
人気ブログランキングへ
Category CFDとは (About CFD)
CFDと診断されてLeucovorinを飲み始めて半年。あまり効いてない…正直。やっぱりだんだん悪くなってるような気がする。
先日、病院に勤めているLeoの同級生の親から全ゲノム解析でLeoのような症状の双子がドーパ反応性ジストニアであることが判明し、Lドーパという薬で普通の生活が送れている話を聞いた。近所に住んでるみたい。病院も同じようだ。ニュースにもなったみたい。
この病気関係で調べてみたら、セピアプテリン還元酵素欠損症(SPR)なんてのもでてきた。
どちらも全ゲノム解析で確定するみたい。来月の定期検診で担当医に聞いてみるつもり。
奇跡を信じて…
人気ブログランキングへ
先日、病院に勤めているLeoの同級生の親から全ゲノム解析でLeoのような症状の双子がドーパ反応性ジストニアであることが判明し、Lドーパという薬で普通の生活が送れている話を聞いた。近所に住んでるみたい。病院も同じようだ。ニュースにもなったみたい。
この病気関係で調べてみたら、セピアプテリン還元酵素欠損症(SPR)なんてのもでてきた。
どちらも全ゲノム解析で確定するみたい。来月の定期検診で担当医に聞いてみるつもり。
奇跡を信じて…
人気ブログランキングへ
Category 学校 (School)
息子と会話がしたい…
I wanna communicate with him...
最近、本当にそう思う…
I really feel that way lately...
いろんなことを話したい…
I wanna talk about many things with him...
息子もそう思っていると思う…
I think he wants to do that too...
病気のせいで、筋肉がうまく動かないから、Leoはうまく声がでない。「パパ」っていうのも精一杯。5秒ほどかかる。一番長いフレーズは「あいさそー」（美味しそう）。食べることが大好きだから(^^)/
Leo cannot talk much due to this CFD, which prevents him from controlling muscle movements. Just saying "Papa (Daddy)" is such a challenge for him and takes 5 seconds. The longest word he can say is "aisasou" which is "oishisou", meaning "looks delicious" because he likes eating:-)
サ行、ハ行、ヤ行など口の筋肉やおなかに力が必要な音を出すのが難しい状態。だから「No」は言えるけど、「Yes」または「Yeah」は「でぃぁ」になってしまう。
S, H, and Y sounds are especially tough for him since they require fine mouth/tongue control and also the trunk stability. So he can say "no" but "yes" or "yeah" becomes "diah".
2歳のころははっきりパパって発音してたのに… Leoもそれがわかっている。前に歩けたことも、すこし話せたことも。だから彼もつらいと思う…
He was articulating better when he was 2 years old... Leo knows about it. He knows the days when he could walk and talk a bit. So I feel sorry for him...
今日は学校でLeoの一年間のレビューがあった。担任、理学療法士、作業療法士、言語療法士、言語機器の専門家、障害者体育、保健、心理学、カウンセラー、YMCAの計10人の先生たちを交えて2時間半。一年前に立てた目標がどれだけ達成できているか確認するミーティングだったけど、この一年でかなり悪くなったから、ほとんど達成できず。
Today, we had the annual review meeting at school. 2 and a half hours with 10 specialists including the school teacher, PT, OT, Speech, communication technology, APE, school nurse, psychologist, counselor, and YMCA teachers. We reviewed how much goals we set a year ago have been achieved by him, but his symptoms got worse in the year, so most of them were not achieved.
でも、知能、数学に関しては歳相応かそれ以上と判断された！2歳、3歳のときも同じ判断。頭脳に関しては問題なしとのこと。身体的な制限ゆえに一見、知的に障害があるように見えるけど、少しでも一緒にいれば全部わかってるってすぐ気づいてもらえる。
But his cognitive and math skills were evaluated normal or beyond normal! He got the same evaluation results when he was 2 and 3 years old. So intellectually he has no problem. At first, he looks like he has a problem but people realize he does not after being with him for a short period of time. He understands everything.
ただ、わかっていることを言葉で表現できないから、本当に歯がゆい思いをしているはず。先生たちも何とかそれを表現させたいということで、今年度はコミュニケーション機器を使えるようになるのが目標。
But he cannot express verbally he does understand everything, so we think that he is frustrated sometimes. The teachers are trying so hard to enable him to communicate, so he will learn how to use the communication devices this year.
まず、YES/NOボタンを押す練習から始めて、次に縦横にカーソルをカチカチと動かして伝えたいものを選択する練習をする。最終的にはピンポイントで伝えたいことを選択できるようになれればとのこと。とにかく手段さえ習得すれば、コミュニケーションは問題ないと言ってくれた。
It starts with tapping Yes/NO pads, moves on to selecting the ones by moving the cursor by tapping the device, and eventually he can select the items directly. The teachers encouraged us that he will have no problem in communication once he knows how to use the devices.
だから少しずつだけど、がんばって練習していこう、Leo。パパも一緒にがんばるから。
So let's work on that little by little, Leo. Daddy will work together too.
そして、ずっと先でもいいから、いつか、パパと男同士の話でもしよう。
And it is not necessarily in the near future, but let's have a guy's talk someday.
人気ブログランキングへ
I wanna communicate with him...
最近、本当にそう思う…
I really feel that way lately...
いろんなことを話したい…
I wanna talk about many things with him...
息子もそう思っていると思う…
I think he wants to do that too...
病気のせいで、筋肉がうまく動かないから、Leoはうまく声がでない。「パパ」っていうのも精一杯。5秒ほどかかる。一番長いフレーズは「あいさそー」（美味しそう）。食べることが大好きだから(^^)/
Leo cannot talk much due to this CFD, which prevents him from controlling muscle movements. Just saying "Papa (Daddy)" is such a challenge for him and takes 5 seconds. The longest word he can say is "aisasou" which is "oishisou", meaning "looks delicious" because he likes eating:-)
サ行、ハ行、ヤ行など口の筋肉やおなかに力が必要な音を出すのが難しい状態。だから「No」は言えるけど、「Yes」または「Yeah」は「でぃぁ」になってしまう。
S, H, and Y sounds are especially tough for him since they require fine mouth/tongue control and also the trunk stability. So he can say "no" but "yes" or "yeah" becomes "diah".
2歳のころははっきりパパって発音してたのに… Leoもそれがわかっている。前に歩けたことも、すこし話せたことも。だから彼もつらいと思う…
He was articulating better when he was 2 years old... Leo knows about it. He knows the days when he could walk and talk a bit. So I feel sorry for him...
今日は学校でLeoの一年間のレビューがあった。担任、理学療法士、作業療法士、言語療法士、言語機器の専門家、障害者体育、保健、心理学、カウンセラー、YMCAの計10人の先生たちを交えて2時間半。一年前に立てた目標がどれだけ達成できているか確認するミーティングだったけど、この一年でかなり悪くなったから、ほとんど達成できず。
Today, we had the annual review meeting at school. 2 and a half hours with 10 specialists including the school teacher, PT, OT, Speech, communication technology, APE, school nurse, psychologist, counselor, and YMCA teachers. We reviewed how much goals we set a year ago have been achieved by him, but his symptoms got worse in the year, so most of them were not achieved.
でも、知能、数学に関しては歳相応かそれ以上と判断された！2歳、3歳のときも同じ判断。頭脳に関しては問題なしとのこと。身体的な制限ゆえに一見、知的に障害があるように見えるけど、少しでも一緒にいれば全部わかってるってすぐ気づいてもらえる。
But his cognitive and math skills were evaluated normal or beyond normal! He got the same evaluation results when he was 2 and 3 years old. So intellectually he has no problem. At first, he looks like he has a problem but people realize he does not after being with him for a short period of time. He understands everything.
ただ、わかっていることを言葉で表現できないから、本当に歯がゆい思いをしているはず。先生たちも何とかそれを表現させたいということで、今年度はコミュニケーション機器を使えるようになるのが目標。
But he cannot express verbally he does understand everything, so we think that he is frustrated sometimes. The teachers are trying so hard to enable him to communicate, so he will learn how to use the communication devices this year.
まず、YES/NOボタンを押す練習から始めて、次に縦横にカーソルをカチカチと動かして伝えたいものを選択する練習をする。最終的にはピンポイントで伝えたいことを選択できるようになれればとのこと。とにかく手段さえ習得すれば、コミュニケーションは問題ないと言ってくれた。
It starts with tapping Yes/NO pads, moves on to selecting the ones by moving the cursor by tapping the device, and eventually he can select the items directly. The teachers encouraged us that he will have no problem in communication once he knows how to use the devices.
だから少しずつだけど、がんばって練習していこう、Leo。パパも一緒にがんばるから。
So let's work on that little by little, Leo. Daddy will work together too.
そして、ずっと先でもいいから、いつか、パパと男同士の話でもしよう。
And it is not necessarily in the near future, but let's have a guy's talk someday.
人気ブログランキングへ
Category Encinitas Life
やっぱりブログをしばらくつけてなかったから、結構筆不精になってると自分で感じる。いかん、いかん。日々の生活の記録を通して、Leoの症状をモニターするのもこのブログの役目。今週は仕事でほぼ徹夜続きだけど、怠けないでがんばろう。
I feel like I am now lazy not to keep posting on this blog after a long period of not working on a blog. I should work on this more since the purpose of this blog is to monitor Leo's symptoms through recording our daily life. It has been busy at work and barely had a good night sleep recently, but I should stop being lazy now...
今日は天気もよかったからサファリパークに行ってきた。サンディエゴ動物園の弟分で、郊外のすごいオープンなところにあるんだけど、ホント気持ちよかったな～。
In any case, it was a wonderful weather today, so we went to the Safari Park. It is run by the same organization that runs San Diego Zoo, but unlike there, the Safari Park is located in a very open space in the suburb, so it felt so good.
最近はどんどん春めいてきて、だんだんあったかくなってきた。暑くもなく寒くもなく。やっとサンディエゴらしい天気が戻ってきたかな。空が青い青い。LeoもSenaも大喜び！
I would say Spring has come and it is getting warmer day by day. Not too hot but not too cold, which is like "THE" San Diego weather is back! The sky is so blue and Leo and Sena like it of course.
東京から遊びに来ているおばあちゃんもリラックスできたかな？
Being relaxed grandma? She is staying with us for a month from Tokyo.
きょうのLeoは比較的体の芯がしっかりしていてたくさん歩いた。ブレースも少しずつ慣れてきたみたい。
Leo walked long today with his trunk felt more stabilized. He's getting used to the braces little by little.
ふと気づくと動物の写真があまりない。。。ここに来過ぎだな。ははは
I just realized that I did not take the pictures with animals much... I guess we have come here just too many times...
今週は宮里愛ちゃんが出てるゴルフの大会が家の近所でやってたから、実は、そっちに行こうかと思っていたけど、ゴルフ場に2歳と4歳連れていってもね～。家の周りはゴルフ場だらけだけど、未だに回ったことなし。まだまだ先かな～。やっぱり。
Originally this week, we were talking about going to see the ladies golf tournament in my neighborhood, in which a famous Japanese girl Ai Miyazato was playing. But we took it back considering stuff to do at a golf course for 2 years old and 4 years old. Well, there are just many golf courses nearby, but I have not played at all. I guess that's not happening in near future...
たまに自分の時間が欲しいな～なんて思う今日この頃でした。
I feel like I need a time off for myself sometimes...
人気ブログランキングへ
I feel like I am now lazy not to keep posting on this blog after a long period of not working on a blog. I should work on this more since the purpose of this blog is to monitor Leo's symptoms through recording our daily life. It has been busy at work and barely had a good night sleep recently, but I should stop being lazy now...
今日は天気もよかったからサファリパークに行ってきた。サンディエゴ動物園の弟分で、郊外のすごいオープンなところにあるんだけど、ホント気持ちよかったな～。
In any case, it was a wonderful weather today, so we went to the Safari Park. It is run by the same organization that runs San Diego Zoo, but unlike there, the Safari Park is located in a very open space in the suburb, so it felt so good.
最近はどんどん春めいてきて、だんだんあったかくなってきた。暑くもなく寒くもなく。やっとサンディエゴらしい天気が戻ってきたかな。空が青い青い。LeoもSenaも大喜び！
I would say Spring has come and it is getting warmer day by day. Not too hot but not too cold, which is like "THE" San Diego weather is back! The sky is so blue and Leo and Sena like it of course.
東京から遊びに来ているおばあちゃんもリラックスできたかな？
Being relaxed grandma? She is staying with us for a month from Tokyo.
きょうのLeoは比較的体の芯がしっかりしていてたくさん歩いた。ブレースも少しずつ慣れてきたみたい。
Leo walked long today with his trunk felt more stabilized. He's getting used to the braces little by little.
ふと気づくと動物の写真があまりない。。。ここに来過ぎだな。ははは
I just realized that I did not take the pictures with animals much... I guess we have come here just too many times...
今週は宮里愛ちゃんが出てるゴルフの大会が家の近所でやってたから、実は、そっちに行こうかと思っていたけど、ゴルフ場に2歳と4歳連れていってもね～。家の周りはゴルフ場だらけだけど、未だに回ったことなし。まだまだ先かな～。やっぱり。
Originally this week, we were talking about going to see the ladies golf tournament in my neighborhood, in which a famous Japanese girl Ai Miyazato was playing. But we took it back considering stuff to do at a golf course for 2 years old and 4 years old. Well, there are just many golf courses nearby, but I have not played at all. I guess that's not happening in near future...
たまに自分の時間が欲しいな～なんて思う今日この頃でした。
I feel like I need a time off for myself sometimes...
人気ブログランキングへ
Category つぶやき (Tweets)
Facebookの記事のシェアです。作り話のようですね。
まあ、でも、いい機会なので、これをネタに障害者への差別を禁じた法律という点で日米比較でもしようかと。
The link to a Facebook post, which is reported a fake story.
But it is a good time to discuss about the laws to prohibit discrimination against people with disability around the world.
バスの運転手
アメリカで生活していると、障害者への差別に出くわすことがあまりない。法律で差別が禁止されているし、障害者の人権も守られているから。もちろん、どの世界にも心無い人はいるけど、みんな率先して親切に助けてくれるし、もちろん自分も助ける。それが「当たり前」のことだから。
I don't encounter often the scenes where people with disability are discriminated here in the States. I guess it is because the discrimination is banned by law and their rights are protected. Of course there are some bad people anywhere in the world, but people in general here are willing to help a person like Leo and we are willing to help them of course too. It is a "normal" thing, nothing special.
アメリカだけじゃない。カナダ、ヨーロッパ諸国。最近では韓国でも同じような法律がある。「当たり前」のことのように。
Like the States, there are similar laws in Canada, EU, and recently South Korea much like it is a "normal" thing to have it.
ソース:日本国内外の障害者差別禁止法・条例 (Disability Discrimination Act around the World)
1985年 カナダ (Canada)
1987年 フランス (France)
1990年 アメリカ (US)
1992年 オーストラリア (Australia)
1992年 アイスランド (Iceland)
1992年 エストニア (Estonia)
1992年 イタリア (Italy)
1993年 ベルギー (Belgium)
1995年 イギリス (Great Britain)
1995年 インド (India)
1995年 香港 (Hong Kong)
1998年 ハンガリー (Hungary)
2002年 ドイツ (Germany)
2004年 フィンランド (Finland)
2005年 オーストリア (Austria)
2005年 ギリシャ (Greece)
2005年 アイルランド (Ireland)
2008年 韓国 (South Korea)
2008年 スウェーデン (Sweden)
...
20??年 日本?? (Japan??)
この「当たり前」のような法律が、残念ながら未だに日本には存在しない。
国連の人権委員会から再三の指摘にもかかわらず...
Unfortunately though, there is no law like this in Japan yet that prohibits discrimination against people with disability. UN Human Rights Committee issued warning several times but nothing has been done...
だから、作り話の中に出てくる、こっちでは犯罪行為のようなことも罰することができない。
So the story in the link above, which is a crime in most countries, is not charged in Japan.
日本とアメリカ。
Japan and the US.
将来、個人的には日本に帰りたいと思ってるけど、正直、比較してしまうし、日本はまだまだハード面（バリアフリー）やソフト面（人）で、障害者に優しい社会とは言えないような気が...正直、どう選択すべきか、悩んでしまう。
I personally wants to go back to Japan but honestly speaking, I am not that sure considering Leo. Compared with the States, Japan is not a best country for people with disability. Slopes are not always available and the disability services are not expected this frequently. I have been thinking about it like crazy, but have not yet come to the conclusion on which country is best suited for Leo...
息子のためなら本当に何でもできる。
I can do anything for my son.
こういう話が「美談」ではなくて「当たり前」のことになるために、自分も積極的に活動していこうと思う。
The above story of helping a disabled is considered a "good" story. But I would like to work toward the society when the story like this is just a "normal/nothing special" story.
まあ、でも、いい機会なので、これをネタに障害者への差別を禁じた法律という点で日米比較でもしようかと。
The link to a Facebook post, which is reported a fake story.
But it is a good time to discuss about the laws to prohibit discrimination against people with disability around the world.
バスの運転手
アメリカで生活していると、障害者への差別に出くわすことがあまりない。法律で差別が禁止されているし、障害者の人権も守られているから。もちろん、どの世界にも心無い人はいるけど、みんな率先して親切に助けてくれるし、もちろん自分も助ける。それが「当たり前」のことだから。
I don't encounter often the scenes where people with disability are discriminated here in the States. I guess it is because the discrimination is banned by law and their rights are protected. Of course there are some bad people anywhere in the world, but people in general here are willing to help a person like Leo and we are willing to help them of course too. It is a "normal" thing, nothing special.
アメリカだけじゃない。カナダ、ヨーロッパ諸国。最近では韓国でも同じような法律がある。「当たり前」のことのように。
Like the States, there are similar laws in Canada, EU, and recently South Korea much like it is a "normal" thing to have it.
ソース:日本国内外の障害者差別禁止法・条例 (Disability Discrimination Act around the World)
1985年 カナダ (Canada)
1987年 フランス (France)
1990年 アメリカ (US)
1992年 オーストラリア (Australia)
1992年 アイスランド (Iceland)
1992年 エストニア (Estonia)
1992年 イタリア (Italy)
1993年 ベルギー (Belgium)
1995年 イギリス (Great Britain)
1995年 インド (India)
1995年 香港 (Hong Kong)
1998年 ハンガリー (Hungary)
2002年 ドイツ (Germany)
2004年 フィンランド (Finland)
2005年 オーストリア (Austria)
2005年 ギリシャ (Greece)
2005年 アイルランド (Ireland)
2008年 韓国 (South Korea)
2008年 スウェーデン (Sweden)
...
20??年 日本?? (Japan??)
この「当たり前」のような法律が、残念ながら未だに日本には存在しない。
国連の人権委員会から再三の指摘にもかかわらず...
Unfortunately though, there is no law like this in Japan yet that prohibits discrimination against people with disability. UN Human Rights Committee issued warning several times but nothing has been done...
だから、作り話の中に出てくる、こっちでは犯罪行為のようなことも罰することができない。
So the story in the link above, which is a crime in most countries, is not charged in Japan.
日本とアメリカ。
Japan and the US.
将来、個人的には日本に帰りたいと思ってるけど、正直、比較してしまうし、日本はまだまだハード面（バリアフリー）やソフト面（人）で、障害者に優しい社会とは言えないような気が...正直、どう選択すべきか、悩んでしまう。
I personally wants to go back to Japan but honestly speaking, I am not that sure considering Leo. Compared with the States, Japan is not a best country for people with disability. Slopes are not always available and the disability services are not expected this frequently. I have been thinking about it like crazy, but have not yet come to the conclusion on which country is best suited for Leo...
息子のためなら本当に何でもできる。
I can do anything for my son.
こういう話が「美談」ではなくて「当たり前」のことになるために、自分も積極的に活動していこうと思う。
The above story of helping a disabled is considered a "good" story. But I would like to work toward the society when the story like this is just a "normal/nothing special" story.
Category CFDとは (About CFD)
3歳4ヶ月。立って歩いているのもやっとな感じ。学校、家でもよく頭から転んで傷だらけ。このころ医者に、検査の結果は問題ないが、脳性まひの一つの運動失調の疑いあり。今後、普通の子のようには成長しないと言われる。言われたときは、何も考えられなかった。目の前、頭が真っ白になり、ただシーンとした時間だけが経っていた。その時間はかなり長く感じられた。ママと二人で泣いた...
3 years and 4 months. Still keeping standing and walking but very unstable. He was often falling at school and home, so he had many wounds on his face. Around that time, the doctors told us that his symptoms are those of cerebral ataxia even though no physical evidence was found. We were told that he would never grow up normal like other kids. We could not think about anything when we first heard it. Nothing was in my head or in front of me. Everything looked blank or empty and the absolute silence dominated the room. It felt lasted very long, and my wife and I were in tears more than ever before.
3歳6ヶ月。上のビデオからたった2ヶ月で立つのも困難になった。
Just 2 months from the video above, at 3 years and 6 months, he started having trouble standing up.
3歳10ヶ月。自分では立てなくなった。病院でいろんな検査をしたけど未だに原因不明。痛かってよね～。様々なサービスを受けるため、症状から脳性まひ・運動失調と診断確定。しかし、このころ、担当の医師が思い当たる非常に稀な病気の検査のために髄液をとる。結果が出るのが数ヵ月後。毎日不安で不安でしょうがなかった。
Became not able to stand up by himself at 3 years and 10 months. He went through various tests at the hospital, but the exact cause was still unknown. To receive various services he needs, he was officially diagnosed as cerebral ataxia. But his neurologist had some idea on a rare disease, so they took his Cerebrospinal fluid (CSF) to test it. I was worried about everything everyday...
この数ヶ月後、検査の結果が出て、非常に稀な病気である脳葉酸欠乏症が判明。2012年11月のことだった。最初の受診から約2年。もしかしたら薬で症状が少しよくなる可能性が出てきた。空が抜けるような青空だったのを今でも覚えている。
A few months later, the results came back and found that Leo has a very rare disease called Cerebral Folate Deficiency (CFD). It was October 2012 and two years had passed since Leo saw the doctor for the knock-knees in 2010. The neurologist told us that there is a potential that he gets better with medicine. I still remember that the sky was very clear back then.
3 years and 4 months. Still keeping standing and walking but very unstable. He was often falling at school and home, so he had many wounds on his face. Around that time, the doctors told us that his symptoms are those of cerebral ataxia even though no physical evidence was found. We were told that he would never grow up normal like other kids. We could not think about anything when we first heard it. Nothing was in my head or in front of me. Everything looked blank or empty and the absolute silence dominated the room. It felt lasted very long, and my wife and I were in tears more than ever before.
3歳6ヶ月。上のビデオからたった2ヶ月で立つのも困難になった。
Just 2 months from the video above, at 3 years and 6 months, he started having trouble standing up.
3歳10ヶ月。自分では立てなくなった。病院でいろんな検査をしたけど未だに原因不明。痛かってよね～。様々なサービスを受けるため、症状から脳性まひ・運動失調と診断確定。しかし、このころ、担当の医師が思い当たる非常に稀な病気の検査のために髄液をとる。結果が出るのが数ヵ月後。毎日不安で不安でしょうがなかった。
Became not able to stand up by himself at 3 years and 10 months. He went through various tests at the hospital, but the exact cause was still unknown. To receive various services he needs, he was officially diagnosed as cerebral ataxia. But his neurologist had some idea on a rare disease, so they took his Cerebrospinal fluid (CSF) to test it. I was worried about everything everyday...
この数ヶ月後、検査の結果が出て、非常に稀な病気である脳葉酸欠乏症が判明。2012年11月のことだった。最初の受診から約2年。もしかしたら薬で症状が少しよくなる可能性が出てきた。空が抜けるような青空だったのを今でも覚えている。
A few months later, the results came back and found that Leo has a very rare disease called Cerebral Folate Deficiency (CFD). It was October 2012 and two years had passed since Leo saw the doctor for the knock-knees in 2010. The neurologist told us that there is a potential that he gets better with medicine. I still remember that the sky was very clear back then.
Category CFDとは (About CFD)
2歳ちょうど。走ってます。でも、Ｘ脚なので主治医に見てもらったら、偏平足だから心配ないと言われる。このころまでは何も悪いなんて思わなかった。
Just turned 2 years old. Running! But we saw his doctor for the knock-kneed legs, but she said "no worries, it is just flat feet." So we never thought that something bad was going to happen back then.
2歳5ヶ月。実家に帰ったときの歩行の様子。ちょっと不安定に見える。親父に医者に行くように薦められる。
2 years and 5 months. Walking near my parents house in Japan. Looks a bit unstable, so my dad recommended us to go see a doctor.
2歳11ヶ月。近くのビーチで。歩行がかなり不安定になってきた。このころにいろんな医者に見てもらい始めるが原因不明。
2 years and 11 months. At the beach nearby. Walking was getting more unstable and started seeing various doctors, but the cause was unknown.
Just turned 2 years old. Running! But we saw his doctor for the knock-kneed legs, but she said "no worries, it is just flat feet." So we never thought that something bad was going to happen back then.
2歳5ヶ月。実家に帰ったときの歩行の様子。ちょっと不安定に見える。親父に医者に行くように薦められる。
2 years and 5 months. Walking near my parents house in Japan. Looks a bit unstable, so my dad recommended us to go see a doctor.
2歳11ヶ月。近くのビーチで。歩行がかなり不安定になってきた。このころにいろんな医者に見てもらい始めるが原因不明。
2 years and 11 months. At the beach nearby. Walking was getting more unstable and started seeing various doctors, but the cause was unknown.
Category CFDとは (About CFD)
1歳4ヶ月でビールの缶を積み上げる。
1 year and 4 months old. Piling cans of beer.
1歳5ヶ月。歩行も安定してきた。
1 year and 5 months old. Walking firmly.
1歳6ヶ月でサーフィンのバランスの練習。このときは「将来はプロサーファーだね」なんて言ってたな～(涙
1 year and a half. Practicing balance for surfing. I remember I said "Future pro surfer here!"... tears...
1歳11ヶ月。まったく普通の歩き方。
1 year and 11 months old. Normal gait.
1 year and 4 months old. Piling cans of beer.
1歳5ヶ月。歩行も安定してきた。
1 year and 5 months old. Walking firmly.
1歳6ヶ月でサーフィンのバランスの練習。このときは「将来はプロサーファーだね」なんて言ってたな～(涙
1 year and a half. Practicing balance for surfing. I remember I said "Future pro surfer here!"... tears...
1歳11ヶ月。まったく普通の歩き方。
1 year and 11 months old. Normal gait.
Category CFDとは (About CFD)
Leoがちょっと前まで歩けていビデオを見るのはつらいけど、症状の記録のために時系列で過去４年のビデオをざっと振り返ってみる。正直、ここまで悪くなるとは思ってなかった。今後の新薬の開発や研究に役立ててほしい、何とかLeoや同じ病気に苦しむ人々によい治療法が開発されるようにとの願いをこめて。
It is tough for me to see Leo walking in these videos, but I review them here just for the record of how his symptom progressed over the latest years. To be honest, I didn't expect that the symptom gets this worse, but I am hoping that these videos help promote R&D in new medication or new treatment for Leo and others who suffer from the same disease.
Leoは普通に何の問題もなく生まれた。
Leo was born absolutely normal without any problem.
6ヶ月で寝返り。
6 months old, turning over.
7ヶ月で飛行機とハイハイ。
7 months old. Doing airplane and crawling.
9ヶ月でハイハイマックス ＆ Royとボールの取り合い。
9 months old. Fast crawling and play with Roy over a toy.
11ヶ月で立ち上がる。いきなりすくっと立って驚いた。
11 months old. Standing up. He just stood up! A big surprise!
1歳で歩き始める。よちよち歩きがかわいい
1 year old. First walk. Cute...
It is tough for me to see Leo walking in these videos, but I review them here just for the record of how his symptom progressed over the latest years. To be honest, I didn't expect that the symptom gets this worse, but I am hoping that these videos help promote R&D in new medication or new treatment for Leo and others who suffer from the same disease.
Leoは普通に何の問題もなく生まれた。
Leo was born absolutely normal without any problem.
6ヶ月で寝返り。
6 months old, turning over.
7ヶ月で飛行機とハイハイ。
7 months old. Doing airplane and crawling.
9ヶ月でハイハイマックス ＆ Royとボールの取り合い。
9 months old. Fast crawling and play with Roy over a toy.
11ヶ月で立ち上がる。いきなりすくっと立って驚いた。
11 months old. Standing up. He just stood up! A big surprise!
1歳で歩き始める。よちよち歩きがかわいい
1 year old. First walk. Cute...
Category リハビリ (Rehab)
レゴで指先の動きと体幹を安定させる練習中。私のアシスト付きだが、これを作るまでに1時間。忍耐力もあるし、途中で諦めない。最後までいつも頑張る。
OT session at home for fine finger control and better trunk stabilization. It took an hour for Leo to build this tower with my assistance. He is very patient, never gives up, and always tries his best to complete any exercise.
たまにどっちが教わっているのか分からなくなる…
Sometimes, I feel like he is the one who's teaching me so many things in life...
何でもできる大人の自分は、もっともっともっと頑張らなきゃって思う。
I am an adult without disability. I can do anything I want to do. I feel obligated to try harder on more things, much like how he does always.
Leo, いつもありがとう。
これからも一緒に歩んで行こうね。
少しづつでいい。ゆっくりでもいい。
ちょっとづつ、前に進んで行こう。
ずっと一緒に。
Leo, thank you always.
Let's go together, slowly sometimes.
Let's move forward, little by little.
I am always with you, together and forever...
OT session at home for fine finger control and better trunk stabilization. It took an hour for Leo to build this tower with my assistance. He is very patient, never gives up, and always tries his best to complete any exercise.
たまにどっちが教わっているのか分からなくなる…
Sometimes, I feel like he is the one who's teaching me so many things in life...
何でもできる大人の自分は、もっともっともっと頑張らなきゃって思う。
I am an adult without disability. I can do anything I want to do. I feel obligated to try harder on more things, much like how he does always.
Leo, いつもありがとう。
これからも一緒に歩んで行こうね。
少しづつでいい。ゆっくりでもいい。
ちょっとづつ、前に進んで行こう。
ずっと一緒に。
Leo, thank you always.
Let's go together, slowly sometimes.
Let's move forward, little by little.
I am always with you, together and forever...
Category リハビリ (Rehab)
前日からLeoは微熱続きで、せっかくの土曜日なのに、今日はお家でパパと2人でお留守番。まるで学校ばりに、塗り絵、アルファベット、数字、レゴブロックと勉強したね(^-^)/
Leo had a little fever since yesterday, so he and I stayed home this Saturday. But together, we worked on paintings, alphabets, numbers, and LEGOs, much like what he does at school:-)
2日前からつけ始めたブレースも、頑張って慣れようとしてる姿にパパはまた泣きそうになったよ。もちろん、嬉しくてね。
He started putting the braces 2 days ago, and I was so glad or even almost crying seeing him trying to get used to them without much complaint.
でも、今日一番嬉しかったのは、Senaが帰ってきて、パパとLeoが遊んでいるところに割って入ってきたときのこと。いつもは大人しいLeoが、「なんだよ～！パパは今日は僕と遊んでるからじゃまするなー！」って感じでSenaに殴りかかっていったこと。
But what made me feel the happiest today was when Sena came back home, she cut in between me and Leo playing. He got very mad and hit her like crazy. He is usually very mellow but today, he was showing his emotion maximally with his body expressing "daddy is all mine today, so leave us alone!"
もちろん、殴りかかる行為自体は怒ったが、今まで見せたことがない感情表現にちょっと感動。言葉も動きも不自由なのに、一生懸命Senaを押し返してた。
Of course, I scolded him for hitting her. But to be honest, I was so happy to see that because he had never shown it before. OK, he cannot move his body well nor say things as he wants (for now!), but he was expressing his emotion by pushing her very hard.
そうだよな～。4歳半だし、普通の子はそれぐらいするだろうな～なんて思っても、その「普通」さがやけに嬉しかった。
Well, he is 4 and a half, and normal kids in his age do that "normally". But the "normalness" he showed today made me feel "exceptionally" happy and realize that he has been growing, much like other kids...
いつもよりビールが美味しかった。
At the dinner table today, a "normal" beer tasted "exceptionally" better :-)
Leo had a little fever since yesterday, so he and I stayed home this Saturday. But together, we worked on paintings, alphabets, numbers, and LEGOs, much like what he does at school:-)
2日前からつけ始めたブレースも、頑張って慣れようとしてる姿にパパはまた泣きそうになったよ。もちろん、嬉しくてね。
He started putting the braces 2 days ago, and I was so glad or even almost crying seeing him trying to get used to them without much complaint.
でも、今日一番嬉しかったのは、Senaが帰ってきて、パパとLeoが遊んでいるところに割って入ってきたときのこと。いつもは大人しいLeoが、「なんだよ～！パパは今日は僕と遊んでるからじゃまするなー！」って感じでSenaに殴りかかっていったこと。
But what made me feel the happiest today was when Sena came back home, she cut in between me and Leo playing. He got very mad and hit her like crazy. He is usually very mellow but today, he was showing his emotion maximally with his body expressing "daddy is all mine today, so leave us alone!"
もちろん、殴りかかる行為自体は怒ったが、今まで見せたことがない感情表現にちょっと感動。言葉も動きも不自由なのに、一生懸命Senaを押し返してた。
Of course, I scolded him for hitting her. But to be honest, I was so happy to see that because he had never shown it before. OK, he cannot move his body well nor say things as he wants (for now!), but he was expressing his emotion by pushing her very hard.
そうだよな～。4歳半だし、普通の子はそれぐらいするだろうな～なんて思っても、その「普通」さがやけに嬉しかった。
Well, he is 4 and a half, and normal kids in his age do that "normally". But the "normalness" he showed today made me feel "exceptionally" happy and realize that he has been growing, much like other kids...
いつもよりビールが美味しかった。
At the dinner table today, a "normal" beer tasted "exceptionally" better :-)
Category Encinitas Life
Senaは今、２歳半。最近はママの真似、学校の先生のマネをよくする。買い物に行ってはこんな感じ。口調もママそっくりだから、見ててホント面白い。
Sena is now 2 and a half. She often imitates what my wife or school teachers do or say. Grocery shopping is one of them. The way she says things is exactly the same as my wife, which is so funny:-)
でもまだまだ２歳半。動きたい盛りで落ち着きがないかな？ブランコLOVEです(^^)
But she is still 2 and a half, so she is constantly moving. She loves swings by the way.
この間は学校で一緒の年上の子と一緒に室内子供ジムに行って大はしゃぎ！
She went to the indoor kids gym the other day with her older friend at school. Enjoyed it very much.
よくしゃべるし、よく動く。それは、Leoが今できないこと。だからお兄ちゃんもできるようになるように、これからも一緒にいっぱいいっぱい遊ぼうね。
She talks and moves a lot, which is what Leo cannot do now. So let's play more together with him so that he becomes able to do the same as you, Sena. I love you!
Sena is now 2 and a half. She often imitates what my wife or school teachers do or say. Grocery shopping is one of them. The way she says things is exactly the same as my wife, which is so funny:-)
でもまだまだ２歳半。動きたい盛りで落ち着きがないかな？ブランコLOVEです(^^)
But she is still 2 and a half, so she is constantly moving. She loves swings by the way.
この間は学校で一緒の年上の子と一緒に室内子供ジムに行って大はしゃぎ！
She went to the indoor kids gym the other day with her older friend at school. Enjoyed it very much.
よくしゃべるし、よく動く。それは、Leoが今できないこと。だからお兄ちゃんもできるようになるように、これからも一緒にいっぱいいっぱい遊ぼうね。
She talks and moves a lot, which is what Leo cannot do now. So let's play more together with him so that he becomes able to do the same as you, Sena. I love you!
Category リハビリ (Rehab)
待ちに待ったブレースが完成。 ママが型取りから色の選択まで全てやったので、実際に見たのは初めて。もっとゴツくて、ギブスのようなイメージだったけど、かなりスリムなのを見てビックリ。靴下でも履けばまったく分からない感じかな。
We've got the braces we had waited for Leo for a long long time. This is my first time to actually see them since my wife took care of everything including molding and the color choice. I was imagining somehow that they are bulky like cast, but quite surprised how slim they are. We probably don't even notice over socks.
でも正直、初めて見たときは凹みました。一年前は歩けてたのに…今は…
But honestly, I was feeling down when I first looked at them... He was able to walk a year ago, but now ... he cannot...
でも、感傷に浸ってる場合じゃない！Life goes on!だ！息子が常に前向きなのに、お前が後ろを向いててどうする？
そんな風に自分に言い聞かせました…
But I just told myself, "Hey, don't waste your time feeling down! Life goes on! And how on earth could you be feeling down and negative while your son is always positive and moving on!"
早速Leoはそれをつけて学校に。かなり調子がいいと先生にも言われたみたい。最近は、特に左足が突っ張って爪先立ち。左膝が内に入りまっすぐに出来なくなっていた。今日つけてみて、脚はまっすぐ出るし、内股の度合いもかなり軽減。何よりお尻の筋肉が少しついたような気がする。気のせいかもしれないけど、そう思いたい…
Today, Leo spent his day at school with the braces. The teachers noticed he was doing well with them. His left leg is tiptoeing recently and the knee is distorted inside and cannot stretch straight. But today, he can move legs straight and walk less wide-based. His butt muscle seem to be strengthened too, or maybe I am just wanting that to happen, I don't know.
最初は慣れなくて嫌かもしれないけど、これとウォーカーで練習して、使うべき筋肉を鍛えて。パパも一緒にがんばるから、また歩けるようにがんばろうね、Leo！
I know it is tough at first but let's get used to them, practice walking with them on the gait trainer, and train the right muscles to be used for walking! I will assist you as always, so let's go together for someday we can walk together again!
We've got the braces we had waited for Leo for a long long time. This is my first time to actually see them since my wife took care of everything including molding and the color choice. I was imagining somehow that they are bulky like cast, but quite surprised how slim they are. We probably don't even notice over socks.
でも正直、初めて見たときは凹みました。一年前は歩けてたのに…今は…
But honestly, I was feeling down when I first looked at them... He was able to walk a year ago, but now ... he cannot...
でも、感傷に浸ってる場合じゃない！Life goes on!だ！息子が常に前向きなのに、お前が後ろを向いててどうする？
そんな風に自分に言い聞かせました…
But I just told myself, "Hey, don't waste your time feeling down! Life goes on! And how on earth could you be feeling down and negative while your son is always positive and moving on!"
早速Leoはそれをつけて学校に。かなり調子がいいと先生にも言われたみたい。最近は、特に左足が突っ張って爪先立ち。左膝が内に入りまっすぐに出来なくなっていた。今日つけてみて、脚はまっすぐ出るし、内股の度合いもかなり軽減。何よりお尻の筋肉が少しついたような気がする。気のせいかもしれないけど、そう思いたい…
Today, Leo spent his day at school with the braces. The teachers noticed he was doing well with them. His left leg is tiptoeing recently and the knee is distorted inside and cannot stretch straight. But today, he can move legs straight and walk less wide-based. His butt muscle seem to be strengthened too, or maybe I am just wanting that to happen, I don't know.
最初は慣れなくて嫌かもしれないけど、これとウォーカーで練習して、使うべき筋肉を鍛えて。パパも一緒にがんばるから、また歩けるようにがんばろうね、Leo！
I know it is tough at first but let's get used to them, practice walking with them on the gait trainer, and train the right muscles to be used for walking! I will assist you as always, so let's go together for someday we can walk together again!
Category Encinitas Life
先週から義理の母がお友達2人と来ているということで、今週末はみんなで市内観光。La Jollaから海沿いの101を北上して、Carlsbadのアウトレットでお買い物。LeoとSenaが大好きか乗り物乗っておおはしゃぎ。とにかく好きだな～。何回も乗ってた。最近は2人でのりたいみたい。微笑ましいかぎり！
Since last week, my wife's mother and two of her friends are visiting San Diego, so I was like a tour guide taking them for various touristy places in San Diego. As always, we went to La Jolla, went along the coast line on highway 101, and then shopped at the outlet mall in Carlsbad. Leo and Sena like the rides there, so they enjoyed them too much. They would like to ride together nowdays, which always makes me smile.
次の日はPacific BeachのCatamaranホテルでシャンパンブランチ。天気も良くて最高の観光日和。
Next day, we went to Catamaran Hotel in Pacific Beach for a champagne brunch. Great weather for sightseeing.
子供達はさっさと食べ終わり、結局遊びに付き合う羽目に。ゆっくり外でたべれる日はいつのことやら( T_T)＼(^-^ )…まだまだ先かな…
Kids finished the food quickly as always and wanted to explore the bay. So I could not enjoy the food much. I am hoping I can do that someday...
その後はCabrillo国定公園でサンディエゴの絶景を楽しみ、Hotel del Coronadoを散策というお決まりのコース。
丸二日大人の観光に付き合った二人は、ずっと暇そうでした。来週末はおばあちゃんもまだいるから、いっぱい公園＆ビーチで遊ぼうね！
After that, we enjoyed the great San Diego view at Cabrillo National Park and strolled around Hotel del Coronado as always. Obviously, sightseeing is not for kids, and Leo and Sena were completely bored during the weekend. All right, I will take you to the beachh and park next weekend, so wait another week for it, ok?
Since last week, my wife's mother and two of her friends are visiting San Diego, so I was like a tour guide taking them for various touristy places in San Diego. As always, we went to La Jolla, went along the coast line on highway 101, and then shopped at the outlet mall in Carlsbad. Leo and Sena like the rides there, so they enjoyed them too much. They would like to ride together nowdays, which always makes me smile.
次の日はPacific BeachのCatamaranホテルでシャンパンブランチ。天気も良くて最高の観光日和。
Next day, we went to Catamaran Hotel in Pacific Beach for a champagne brunch. Great weather for sightseeing.
子供達はさっさと食べ終わり、結局遊びに付き合う羽目に。ゆっくり外でたべれる日はいつのことやら( T_T)＼(^-^ )…まだまだ先かな…
Kids finished the food quickly as always and wanted to explore the bay. So I could not enjoy the food much. I am hoping I can do that someday...
その後はCabrillo国定公園でサンディエゴの絶景を楽しみ、Hotel del Coronadoを散策というお決まりのコース。
丸二日大人の観光に付き合った二人は、ずっと暇そうでした。来週末はおばあちゃんもまだいるから、いっぱい公園＆ビーチで遊ぼうね！
After that, we enjoyed the great San Diego view at Cabrillo National Park and strolled around Hotel del Coronado as always. Obviously, sightseeing is not for kids, and Leo and Sena were completely bored during the weekend. All right, I will take you to the beachh and park next weekend, so wait another week for it, ok?
Category 学校 (School)
今週の月曜日、私は仕事で参加できなかったが、ママとLeoは学校の社会見学で消防署に行ってきた。車が大好きなLeoは消防車に乗って喜んでたみたい。ヘルメットがお似合いだよ（＾＾）
Last Monday, Leo and my wife went on a school field trip to the fire station nearby (I couldn't join because of work...). He loves cars in general, so he looks happy on the fire truck seat. The helmet looks cool on you, Leo!
消防車に初めて乗ったねー。ちょっと緊張気味？
Little nervous on the fire truck the first time?
この人みたいにたくましくなろうね！
Be a strong man like him, ok!
Last Monday, Leo and my wife went on a school field trip to the fire station nearby (I couldn't join because of work...). He loves cars in general, so he looks happy on the fire truck seat. The helmet looks cool on you, Leo!
消防車に初めて乗ったねー。ちょっと緊張気味？
Little nervous on the fire truck the first time?
この人みたいにたくましくなろうね！
Be a strong man like him, ok!
Category リハビリ (Rehab)
昨日は応用行動分析(Applied Behavior Analysis, 略してABA)の計4回のトレーニングセッションの初日。朝から、Senaをプリスクールに送って、夫婦そろって参加。その間Leoは隣の部屋で専門の方に遊んでもらってた。
It was the first Group Parent Training (GPT) session yesterday on Applied Behavior Analysis (ABA). It is 4 sessions in total, 1 session (2 hours) per week. Both of us participated after dropping off Sena at preschool. While having the session, Leo was playing with the care-giver in the room next door.
ABAは主に自閉症の子供の行動管理を目的したもので、そうじゃない息子にはまったく当てはまらないのだが、地域センターの人に薦められて参加。4回のセッション後に、自宅に専門家が来てくれて、着替えや食事、トイレトレーニングなど、自立に向けた行動ができるように教えてくれるらしい。
ABA is primarily for managing behavioral problems in children with autism, so it is not for Leo in fact since he is not autistic. But the intake worker at San Diego Regional Center (SDRC) recommended to take it. After 4 GTP sessions, actual ABA workers come home and teach various things including how to change cloths, eat food, or potty training for Leo to do them by himself independently.
今後、私たち親がLeoの自立に向けた様々な訓練をする際に、彼も当然「いやだーー！」という機会も増えてくるだろう。そういう時のために、どうやってモーチベーションを保たせるか。泣き喚いた際にどうやって効率的に対処し、また次につなげていくか、などなど、親のほうも、「ふむふむ」と勉強になった。Leoは性格上穏やかで、あんまりかんしゃくとか起こさないから、どちらかというと、これはSena向き？とも思ったり(^^)。
Sooner or later, we will have more cases where we, as parents of disabled, need to make him practice many tough things. We. of course, anticipate he will be going "no---!, I don't wanna do that!", so through ABA, we learn how to keep his motivation positive, how to efficiently make him work on it, and more importantly, how to keep him going, going and going. Today, we learned a lot and it was very educational. Leo is very mellow and always happy, so we felt it may be more useful for Sena, who is in the middle of terrible 2:-)
障害児の親が息抜きできるように、自宅に介護に来てくれるサービスも来週には始まるかな？
地域センターには今後もますますお世話になりそうです。
Next week, we will start another service called respite. A respite worker comes home and takes care of him for a short while so that parents can get a little bit of rest. Thanks SDRC!
Leo、Sena。パパも一生懸命がんばるからね。これからもがんばっていこうね。
Leo, Sena. I will work hard, so let's keep going, OK?
It was the first Group Parent Training (GPT) session yesterday on Applied Behavior Analysis (ABA). It is 4 sessions in total, 1 session (2 hours) per week. Both of us participated after dropping off Sena at preschool. While having the session, Leo was playing with the care-giver in the room next door.
ABAは主に自閉症の子供の行動管理を目的したもので、そうじゃない息子にはまったく当てはまらないのだが、地域センターの人に薦められて参加。4回のセッション後に、自宅に専門家が来てくれて、着替えや食事、トイレトレーニングなど、自立に向けた行動ができるように教えてくれるらしい。
ABA is primarily for managing behavioral problems in children with autism, so it is not for Leo in fact since he is not autistic. But the intake worker at San Diego Regional Center (SDRC) recommended to take it. After 4 GTP sessions, actual ABA workers come home and teach various things including how to change cloths, eat food, or potty training for Leo to do them by himself independently.
今後、私たち親がLeoの自立に向けた様々な訓練をする際に、彼も当然「いやだーー！」という機会も増えてくるだろう。そういう時のために、どうやってモーチベーションを保たせるか。泣き喚いた際にどうやって効率的に対処し、また次につなげていくか、などなど、親のほうも、「ふむふむ」と勉強になった。Leoは性格上穏やかで、あんまりかんしゃくとか起こさないから、どちらかというと、これはSena向き？とも思ったり(^^)。
Sooner or later, we will have more cases where we, as parents of disabled, need to make him practice many tough things. We. of course, anticipate he will be going "no---!, I don't wanna do that!", so through ABA, we learn how to keep his motivation positive, how to efficiently make him work on it, and more importantly, how to keep him going, going and going. Today, we learned a lot and it was very educational. Leo is very mellow and always happy, so we felt it may be more useful for Sena, who is in the middle of terrible 2:-)
障害児の親が息抜きできるように、自宅に介護に来てくれるサービスも来週には始まるかな？
地域センターには今後もますますお世話になりそうです。
Next week, we will start another service called respite. A respite worker comes home and takes care of him for a short while so that parents can get a little bit of rest. Thanks SDRC!
Leo、Sena。パパも一生懸命がんばるからね。これからもがんばっていこうね。
Leo, Sena. I will work hard, so let's keep going, OK?
Category CFDとは (About CFD)
余りに全体的にLeoの身体がゆるくて、筋肉もフニャフニャな感じだったので、Leucovorinを15mgから10mgに戻したら、今朝は全体的に筋肉に力が入っていて、嬉しいのか、歩き回っていた(もちろん私の支えで)。座っている姿勢もキープできている。5mg、10mg、15mgと増やしてきたが、10mgがベストのようだ。
We changed the Leucovorin dose from 15mg to 10mg. He is so different now. I noticed his body's got more strength and the muscle tone improved! He seems so happy that from the very morning, he was enjoying walking (with my support, of course), His sitting posture looks better too. So looks like 10mg works the best over 5mg or 15mg.
支え付きでもまっすぐ立つ姿勢を数十秒保てる。こんな事が涙が出るくらい嬉しい。
Today, he can keep standing up for 10-20 seconds with my support.
A small improvement like that, which may sound trivial, really makes us happy, happy, happy.
We changed the Leucovorin dose from 15mg to 10mg. He is so different now. I noticed his body's got more strength and the muscle tone improved! He seems so happy that from the very morning, he was enjoying walking (with my support, of course), His sitting posture looks better too. So looks like 10mg works the best over 5mg or 15mg.
支え付きでもまっすぐ立つ姿勢を数十秒保てる。こんな事が涙が出るくらい嬉しい。
Today, he can keep standing up for 10-20 seconds with my support.
A small improvement like that, which may sound trivial, really makes us happy, happy, happy.
Category CFDとは (About CFD)
最近のLeoはまた少しずつだけど悪くなってるような気がする。4ヶ月前にLeucovorin一日5mgから始めたときは、たまに自分で立ち上がるほど調子がよくなった時もあったのに…今はハイハイもままならない。2ヶ月前に10mgに、1ヶ月前に15mgに薬の量を増やしてからのような気が…試しに10mgか5mgに戻してみようかな。
I feel like Leo is having harder time controlling his body nowadays. We started Leucovorn medication 5mg/day and back then, he was even standing up by himself for a short period. But now he cannot even crawl well. We increased the drug to 10mg 2 months ago, and also to 15mg a month ago. Seems like he got worse after we increased the amount. So maybe we want to put it back to 10mg or 5mg?
動かない身体に悲しそうな顔をするLeoをこれ以上見れない。何か出来ることがないか？他に何かないのか？そう言っている間にも、症状はどんどん進行している。それを目の前にして何もしてやれない。悔しい、ただただ情けない…
He often makes sad face. He is frustrated with his body too. I have hard time looking at him like that. Is there anything else I can do to help him? While asking questions like that, his symptoms are getting worse rapidly. I realize not much I can do... Frustration makes me feel miserable...
まずはこの風邪を治さないと…
Well, I need to recover from this cold first to move on...
I feel like Leo is having harder time controlling his body nowadays. We started Leucovorn medication 5mg/day and back then, he was even standing up by himself for a short period. But now he cannot even crawl well. We increased the drug to 10mg 2 months ago, and also to 15mg a month ago. Seems like he got worse after we increased the amount. So maybe we want to put it back to 10mg or 5mg?
動かない身体に悲しそうな顔をするLeoをこれ以上見れない。何か出来ることがないか？他に何かないのか？そう言っている間にも、症状はどんどん進行している。それを目の前にして何もしてやれない。悔しい、ただただ情けない…
He often makes sad face. He is frustrated with his body too. I have hard time looking at him like that. Is there anything else I can do to help him? While asking questions like that, his symptoms are getting worse rapidly. I realize not much I can do... Frustration makes me feel miserable...
まずはこの風邪を治さないと…
Well, I need to recover from this cold first to move on...
Category つぶやき (Tweets)
今だに風邪でダウン中…今日は何もしてられなくてゴメンね～、Sena…早く元気になるからね。
I am still in bed due to this severe cold. I know it is Girl's Day in Japan, but I am not able to do anything for you, Sena. I promise I will get better soon, so wait for a bit, OK, Sena?
I am still in bed due to this severe cold. I know it is Girl's Day in Japan, but I am not able to do anything for you, Sena. I promise I will get better soon, so wait for a bit, OK, Sena?
Category つぶやき (Tweets)
今日のLeoの身体はぐにゃぐにゃ。おなかに全く力が入らないし、腕、脚の筋肉もフニャフニャ。ウォーカーで練習してもフラフラ。自分で今日は調子が悪いのが分かってるのか、また涙目で無言でしくしく泣いていた。強く抱きしめるしかできなかった。視界が潤んでいた…
Today, Leo's entire body is very loose. The muscle tone of trunk, arms and legs are very bad and does not have any strength overall. Practice with walker went not well either. He understands his body is out of control by himself today, so he often looked down with his eyes full of tears. I just couldn't help but hug him... I had a blurred syesight, too...
今、Leoはグルテンを含む小麦が入ったもの、牛乳が入ったものをたべさせてない。せっかく薬で葉酸を補っても、その活動を阻害するという論文が最近よく発表されていて、取りあえず試している。確かに、以前のように身体がぐにゃぐにゃなことがなくなったような気がするが、今日は久しぶりにその状態。関連は分からないが、二日前に学校でクッキーを食べたようだ。過去の経験から、大体二日後にこうなる。先生たちも忘れてたのか、もう少し徹底して欲しいものだ。相変らずの適当さに結構うんざり。
Leo is now on gluten free diet, free from food with basically wheat. Also he is free from cow milk. We have been trying this since there are recently several medical articles indicating that they block the folate receptors accepting the folic acid he is taking now. It seems like he is better controlling his body with this diet a little bit, but not yet quite sure if it is 100% effective compared with the baseline. But today is definitely one of the worst. I heard from my wife that he had a cookie 2 days ago at school. In the past, we know his body gets very loose usually 2 days after he took gluten or milk. So I guess the teachers may have forgot about the diet(?). I don't know, but am hoping that does not happen again.
でもがんばろうね、Leo!
There are many things like that here, but let's moving on, Leo, OK?
Today, Leo's entire body is very loose. The muscle tone of trunk, arms and legs are very bad and does not have any strength overall. Practice with walker went not well either. He understands his body is out of control by himself today, so he often looked down with his eyes full of tears. I just couldn't help but hug him... I had a blurred syesight, too...
今、Leoはグルテンを含む小麦が入ったもの、牛乳が入ったものをたべさせてない。せっかく薬で葉酸を補っても、その活動を阻害するという論文が最近よく発表されていて、取りあえず試している。確かに、以前のように身体がぐにゃぐにゃなことがなくなったような気がするが、今日は久しぶりにその状態。関連は分からないが、二日前に学校でクッキーを食べたようだ。過去の経験から、大体二日後にこうなる。先生たちも忘れてたのか、もう少し徹底して欲しいものだ。相変らずの適当さに結構うんざり。
Leo is now on gluten free diet, free from food with basically wheat. Also he is free from cow milk. We have been trying this since there are recently several medical articles indicating that they block the folate receptors accepting the folic acid he is taking now. It seems like he is better controlling his body with this diet a little bit, but not yet quite sure if it is 100% effective compared with the baseline. But today is definitely one of the worst. I heard from my wife that he had a cookie 2 days ago at school. In the past, we know his body gets very loose usually 2 days after he took gluten or milk. So I guess the teachers may have forgot about the diet(?). I don't know, but am hoping that does not happen again.
でもがんばろうね、Leo!
There are many things like that here, but let's moving on, Leo, OK?
Category 学校 (School)
今日学校の先生から最近Leoのために納入した補助イスの写真が送られてきた。不安定な上半身を固定するタイプで、Leoもいろんなアクティビティにもっと積極的に参加してるみたい。一年前は歩けてたのに、今はこんなイスが必要になってしまった事実を、この写真を見てまざまざと知らされ、結構凹む…
Today, I got some images from school showing the new chair that they got for Leo. It is the type that ties the upper body, giving more stability to him overall. They said he is participating more in various activities. But honestly, I felt devastated when I looked at the pictures... He could walk last year. Now he is tied to this chair to be safe... It just looked surreal, but it is the reality I need to face.
家でも欲しいが、た、高い…早く障害児福祉のMedi-calから認可をもらわないと。足首も内向してきて、矯正具を待ってるけど未だに出来てない。
We want this chair at home too, but it is very expensive. I need to speed up the application process for Medi-cal for disabled. His ankles are torched inside a bit and we have ordered ankle braces for that, but not yet ready. It's been more than a month.
何をするにも時間がかかるアメリカ。もう13年以上も済んでるけど、いまだに慣れないかな。事務手続きはホントこっちは最悪です。
Everything takes way long time here in the U.S. compared with Japan. Although I have been living here for more than 13 years now, I never have succeeded getting used to that. Any paperwork procedure takes forever here. Just bad...
Leo. もうすぐ出来るから、早く慣れるようにがんばろうね！
Leo. Your braces are almost ready, so let's get used to wearing them and practice walking together, ok?
Today, I got some images from school showing the new chair that they got for Leo. It is the type that ties the upper body, giving more stability to him overall. They said he is participating more in various activities. But honestly, I felt devastated when I looked at the pictures... He could walk last year. Now he is tied to this chair to be safe... It just looked surreal, but it is the reality I need to face.
家でも欲しいが、た、高い…早く障害児福祉のMedi-calから認可をもらわないと。足首も内向してきて、矯正具を待ってるけど未だに出来てない。
We want this chair at home too, but it is very expensive. I need to speed up the application process for Medi-cal for disabled. His ankles are torched inside a bit and we have ordered ankle braces for that, but not yet ready. It's been more than a month.
何をするにも時間がかかるアメリカ。もう13年以上も済んでるけど、いまだに慣れないかな。事務手続きはホントこっちは最悪です。
Everything takes way long time here in the U.S. compared with Japan. Although I have been living here for more than 13 years now, I never have succeeded getting used to that. Any paperwork procedure takes forever here. Just bad...
Leo. もうすぐ出来るから、早く慣れるようにがんばろうね！
Leo. Your braces are almost ready, so let's get used to wearing them and practice walking together, ok?
Category つぶやき (Tweets)
Leoの1歳10ヶ月下の妹Senaは今2歳半。とにかくおてんばで、ひょうきんもの。とにかくしゃべるしゃべる。普通に話してたのが1歳半くらい。いつもLeoのことで気分が落ち込んでたりすると、気をつかって笑わせてくれる。
Leo has a younger sister. Her name is Sena. She is two and a half years old now. Only 1 year and 10 months younger than Leo. Sena is very energetic, funny, and never stops talking. She just started talking like an adult when she was one and a half years old. She is like the shinning sun in my family, making everyone laugh even when we are feeling down about Leo.
もちろん自己主張も激しい。なるべく公平に扱っているつもりだけど、Leoの介護にどうしても手がかるから、「Senaもーー！」と言ってふてくされて、最終的にはLeoに意地悪してケンカになり、お互いに泣いて終わりの繰り返し。そんなSenaも最近はお姉ちゃんぽく、Leoの面倒をみてくれる。仲がいいのかわるいのか。
Of course, she is 2 years old. Yes, she in in the middle of terrible two! She is always like "look at me, me, me!". We are trying to give even affection to both of them, but she does not feel that way, of course. So she always ends up doing some mean stuff to Leo and having a fight each other. That happens quite often. But well, she is now two and a half. So she started acting more matured and sometimes takes care of Leo. So not sure they are getting along or not (probably yes).
Sena. 一緒にLeo兄ちゃんのことささえてあげようね。これからもずっと…ね。
Sena. It's a long and winding road. Let's support your bother together, ok?
Leo has a younger sister. Her name is Sena. She is two and a half years old now. Only 1 year and 10 months younger than Leo. Sena is very energetic, funny, and never stops talking. She just started talking like an adult when she was one and a half years old. She is like the shinning sun in my family, making everyone laugh even when we are feeling down about Leo.
もちろん自己主張も激しい。なるべく公平に扱っているつもりだけど、Leoの介護にどうしても手がかるから、「Senaもーー！」と言ってふてくされて、最終的にはLeoに意地悪してケンカになり、お互いに泣いて終わりの繰り返し。そんなSenaも最近はお姉ちゃんぽく、Leoの面倒をみてくれる。仲がいいのかわるいのか。
Of course, she is 2 years old. Yes, she in in the middle of terrible two! She is always like "look at me, me, me!". We are trying to give even affection to both of them, but she does not feel that way, of course. So she always ends up doing some mean stuff to Leo and having a fight each other. That happens quite often. But well, she is now two and a half. So she started acting more matured and sometimes takes care of Leo. So not sure they are getting along or not (probably yes).
Sena. 一緒にLeo兄ちゃんのことささえてあげようね。これからもずっと…ね。
Sena. It's a long and winding road. Let's support your bother together, ok?
