Thursday, 20 November 2014

分享帖: What NOT to Say to Special Need Parents

分享

原文:What NOT to Say to Special Need Parents

Recently a thread started on Support for Special Needs about what we wish people didn’t say to us. Given that we’re all different I’m sure not everyone will agree with each mention on this list but many of the items that people wrote in about resonated with other community members. A lot of the items resonated with me.
While we all agree we have the one or few that really bug us, most of us agree that most people who say these things aren’t mean spirited people. They simply don’t understand what they are saying is hurtful, annoying or bothersome. Maybe if we share this post with people in  each of our lives, we’ll educate people on what we’d find helpful NOT to say to us…
– God only gives us what we can handle; He must think you two are special parents
– Using the word “Austistics” to describe people on the spectrum.
– Remember, you have to take care of yourself, so you can take care of them.
– He’ll speak when he’s ready to.
– When looking at my son using a reverse walker, “Wow, we need to get one of those for my (typical) 10 mo old so he/she can walk better!”
– They’ll EAT when they’re ready. They’re not going to starve to death.
– You are so much stronger than me… I don’t know how you do it
– Pointing out that my non-walker shouldn’t be in a stroller, not knowing he can’t walk.
– That my child is just playing us.
– They just need discipline.
– You two are amazing for adopting two special-needs children. They are SO LUCKY.”
– Family and friends that downplay a diagnosis.
– For a child that has tics, saying, “Do you think she is doing it for attention?”
– Anything that implies that sensory issues are not real or that we’re playing into their “fear.”
– When people say they are sorry or offer condolences for a child with disabilities.
– Any comment that starts with “If you would just…”
– What’s wrong with her?
– Don’t worry she’ll catch up.
– She’ll grow out of it.
– Is your other son/daughter “normal”? or “Are your other kids ok? (As if to imply the child with the disability is not?)
– You are so much stronger than me and/or I don’t know how you do it.
I thought I would end this with a paragraph about the well-intentioned people and go into something about the people who talk without thinking, obviously, we think to ourselves. But I decided to open up a thread on what we’d like to hear from people. So here is the YES! SAY THIS! Instead list…
– I’ll be over on Saturday to help do laundry/wash dishes/scrub floors!
– I don’t know what to say to you, but I love you.
– How are you doing? (and actually listen to the answer)
– Quote from Elaine Hall: “How Can I Help?”
– Just wanted you to know I was thinking about you.
– I just made an extra dinner when I was cooking for us, can I drop it by now?
–  I know you had an appointment yesterday, how did it go?
– Want to drop your kids off with us for an hour or so?  (Because people are afraid to take care of my kids, when this happens, it feels like acceptance and support.)
– I’m on my way to the store, want me to grab you some milk or bread?
– Need any help at bedtime with the kids?
– I’m coming over to watch the kids right now for an hour so you can take a nap.
– We’re on our way to take care of the yard work.
– Sounds like you’re doing a great job.
– Here’s some things that worked for us. (preferably from people who “get it.”)
These are just a sampling of what some Support for Special Needs community members preferred…obviously, we’re all different and some on either list may or may not resonate with a particular parent of kids with special needs. Again, for me, I never got mad about kids asking questions or parents helping their child ask a respectful question. I always minded rude adults who encouraged rudeness in their kids. I never minded any of the items on the NOT list from people who cared about me because I knew their intentions were good. As the years go on I am better about saying why something bothers to the person so they understand.
One thing seems to be across the board though; special needs parents would like people to think before they speak, especially in front of their children. We’d like people to see our kids as people, with feelings. I’d like people to know that when they see what they perceive as a negative is not necessarily a negative. A woman once said to me, “She’s just walking? How old is she?” On a strong parenting day, as I like to call them, I excitedly said, “Yes! She’s young! I think it’s absolutely fabulous she’s walking!” Not sure when my daughter would take her first steps we were thrilled she was walking independently by age three.

Wednesday, 12 November 2014

午餐日 Lunch Box Day

上周五幼兒園老師讓接你回家的爸爸帶回來飯盒,讓媽媽裝下你今天部份的午餐.老師說要讓小朋友在模擬情境中,體驗自己買午餐盒.

嗯~這個概念真的很讚!不過,看到老師開的菜單,真的有點考倒媽媽. (´−`) ンー

Boiled egg (half) 白煮蛋半顆.你對蛋過敏,不能吃蛋.怎麼辦?爸爸媽媽想盡辦法,爸爸說用糙米粉做蛋的造形.怎麼做?爸爸你做嗎?後來,想到不然買個密瓜然後挖那個蛋的形狀,或者用奶油果,Avocado.媽媽讓爸爸去買奶油果.外婆買了個哈密瓜.昨天媽媽搞混了把半顆哈密瓜切小塊给你帶去幼兒園用.剩下的收冰箱.還好,奶油果備用,剛剛好成熟了.今早媽媽切半,再煮軟南瓜當蛋黃.嘿嘿~有像嗎?。(*^▽^*)ゞ



Fried chicken. 炸雞嗎?唉~怎麼弄?麵粉過敏啊!算啦!用蒸雞肉也可以吧.

這就是今天媽媽给你準備的午餐盒.\(^▽^)/



希望你好好用喔!♨(⋆‿⋆)♨

Friday, 7 November 2014

掛診耳鼻喉


昨天下午幼兒園放學後,爸爸媽媽就帶你去耳鼻喉診所掛診.醫生跟爸爸媽媽講解有關耳垢堆積,還有你常因為過敏性鼻炎造成常鼻塞鼻涕累積問題,然後咳嗽的種種問題,...

天啊!還真的多問題! ヘ(_ _ヘ)

重點,清耳垢.醫生在你的耳朵滴了藥水,然後就開始吸耳垢.當然爸爸媽媽加上護士,我們三人把你壓在床上(對不起啦,寶貝!)讓醫生清理工作.少不了你的哭,你應該很不舒服.還好只是一下下就好.

醫生開了抗組織胺藥 (wikipedia).,antihistamine & decongestants,還有滴耳的藥水.這樣就花了兩百多.這個醫生說,以往過敏性兒科醫生和皮膚兒科醫生的antihistamine幾乎沒怎麼見效,讓我們用這個.還有decongestants清掉鼻涕和痰.

應該用藥嗎?還是不用藥? ( ・◇・)?

用藥可以減輕你的過敏反應,最近你身體的疹子大爆發,媽媽跟爸爸還在頭痛!用藥,治標不治本,不過減輕你的不舒服.不用藥是希望你自身的抗體可以加強.

吼~真傷腦筋! (・∧‐)ゞ

Antihistamines, Decongestants, and Cold Remedies source: American Academy of Otolaryngology

最後爸爸媽媽決定讓你用antihistamine.可以緩解之前生病,過敏引起的類似感冒症狀,也同時可以稍微不讓你的疹子繼續爆發,讓你超不舒服.病源還是要繼續找!


Reference:

耳科衛教專欄 - 台北榮民總醫院

Friday, 31 October 2014

離家大約360公里的下午

外面下著雨,媽媽跟你待在民宿.爸爸下午三點有個面試.剛才從醫院回來民宿的路上你在車上睡了些時候,那麼今天的午睡不睡了嗎?



昨天從幼兒園接你後,爸爸就開車直奔大約400公里的路來到這裡.用了大約5個小時從北部開車南下到中部.途中在高速的休息站小歇兩次.然後到了首都走錯路,走了冤枉路.還好不是很糟那種,有塞車.5小時的車程,爸爸辛苦了!

你很乖喔!沒有鬧!途中小睡半小時.媽媽給你帶上你喜歡的書,還有CD.給你買水蓮霧吃.不過你身上的疹,很癢是吧!唉~媽媽也不知該怎麼辦?回去要找Auntie Priscilla請教,好像有藥膏可以止癢消腫.還好幼兒園的老師和安娣知道爸爸媽媽要帶你出遠門,給你洗澡也給你的水壺裝滿水.真的很感動,感恩!🙏

這趟旅程,媽媽覺得我們很幸運,一路上遇到不錯的人.從啟程幼兒園老師跟安娣的照顧,民宿打工的姊姊很好的招待,還有這間媽媽很滿意的民宿.雖然在最高層.我們要上三樓.預定的房間因為我們遲到民宿讓給別人,後來換了較大的房間給我們.我們都睡得好好的.

今早媽媽還是習慣5點多就起床,給你備餐.爸爸媽媽隨便啃了麵包.我們提早出門找醫院,途中稍微走錯路,不過還好預約的10分鐘我們到達醫院,見過醫生做過簡單的檢查,你的右耳有ear wax,需要清理.應該不會有什麼問題.可以開始HBOT.負責HBOT的Chriis姐姐,讓我們進去hard chamber10分鐘體驗.還好!簡單資詢,我們就回民宿了.

如果沒有意外,那麼12月我們就會開始HBOT,40 sessions.希望在康復的路程我們可以找到新的出路.即使要離家幾百公里之外,我們也盡力而奔.

2014.10.31 19:53 民宿外的觀景 


Monday, 20 October 2014

你又生病了

吼~怎麼你又病了?這個月就病了兩次.

昨天傍晚有聽你咳兩聲.媽媽爸爸就有點小擔心.昨晚就给你用Virastop.今早你還是給病毒攻陷,barking cough...媽媽讓爸爸跟幼兒園請病假.唉~媽媽今早如常5點半起身给你備餐.不過,你的胃口沒減.早餐午餐都吃得很好.中午還跟媽媽要了兩份水果.


傍晚感覺你體溫偏高.耳溫攝氏37,8度.嗯~要注意了.咳嗽,你的喉嚨應該不舒服吧!然後有點鼻塞.前兩天你的背部紅紅一大片的紅疹都退了,今天就病了.真的不可以讓你的疹子爆發,不然你的抵抗力一定受損,然後就容易病倒!我們一直都很努力地提升你的免疫力抵抗力,怎麼還是這樣?到底還能怎樣???

今晚,媽媽想說你有點發燒,還是不给你吃有負擔的晚餐.媽媽特製攪拌蔬菜湯:cilantro, parsley, carrot, tomato加肉湯稍微煮了一下下.肉肉就留給爸爸吃了.味道有點像中藥味.第1口,哈哈~很不好喝吧!不過最後還好你都喝完了.



今晚爸爸說他OT照顧你.不過媽媽還是掛心.寶貝生病了,媽媽也不好過.想著明天應該給你弄怎樣的三餐.希望明天你沒事就好!加油!


Thursday, 16 October 2014

失敗的作品

下個星期三,屠妖節 Deepavali, Diwali.

耆那教印度教錫克教慶祝「以光明驅走黑暗,以善良戰勝邪惡」的節日。后来,印度光明节也被看作“内心之光”的庆典.(取自:wikipedia)

幼兒園下個星期會以這個節慶為主題,讓小朋友做裝飾.還有品嚐老師準備的節日糕點----Murukku.媽媽也想讓你品嘗,不過你的"special diet control",媽媽只能自己動手弄.上網搜索也看了幾天得食譜,然後讓爸爸幫媽媽找食材.找齊了brown rice flour, cumin seeds.家裡有millet,沒有millet flour,又沒有適合的攪拌機弄成粉.用煮的嗎?想說反正要加水,那麼把浸泡的millet像煮飯一樣煮熟.不能用牛油,就用椰油.然後把所有材料混合,加點鹽再攪拌.結果....

粉糰好粘.搓不成要的形狀,勉強加油再搓搓,然後隨便弄個樣.再放烤箱烘.


呃~那個樣子實在是有點像X.

味道也....還好.不是脆口那種,怎麼有點像糕???

還好你不嫌棄,還很開心地吃了.哈哈!

待會媽媽還是再去找找另外可以替代的材料吧!







Wednesday, 1 October 2014

病假

今年8月你上幼兒園至今兩個月.請了3天病假.

剛上幼兒園時你因為小感冒,爸爸媽媽讓你留在家休息.前晚(星期日晚上)你突然發燒,昨天早上也沒有完全退燒,只能把你留在家好好休息.今天你還是待在家.

其實昨天午後你休息充足也退燒了,你整個下午也沒有睡午覺(早上睡太多了嗎),不過你的活動量不多,大部份的時間都在床上賴著.你應該還感到累吧.昨晚你吃過晚餐很早就上床睡覺了.媽媽想說,病了就讓你多休息.結果...八點多你上床睡覺,今早四點你就起身叫醒媽媽.媽媽讓你睡覺你不睡,拗了很久,五點半媽媽非常不願意的起床備餐.想說你這麼精神,病應該好了,那麼就準備你的食物,今天讓你上幼兒園吧.結果...六點多你返回溫暖的床繼續睡覺.媽媽只能忙廚房活.

爸爸說今天讓你在家好好休息吧!

凌晨被你弄醒的媽媽,無奈地做家務.媽媽已經好幾天沒有好好睡覺了.上周一到周五每天早上5點半起床给你跟爸爸備餐.周休二日,忘了關掉鬧鐘,還是5點半被叫醒.然後周日晚上遇上你發燒,媽媽就"備戰"狀態過了一夜,有睡上幾個鐘嗎?媽媽也不清楚.

還好這次你發燒不太嚴重.耳溫最高攝氏38.4度.你稍微退燒了,媽媽想說可以稍微休息,半夜3點多你又發燒.一整個晚上,媽媽就是给你冷水擦拭,量耳溫.你稍為醒來就给你灌水然後讓你尿尿.剛好週末外公外婆在我們家過夜,讓外公外婆擔心了.隔天你還是迷迷糊糊,這樣過了一個早上,你也沒有跟媽媽討吃.病得不輕~不過午後,你總算戰勝病毒,退燒了可以吃點午餐,點心,晚餐.

照顧生病的你,真得很累!不過這次你很棒喔!抵抗力有加強,沒有燒後併發症.(摸木.Touch wood).

倦意來襲,媽媽是時候補眠了.

媽媽也想拿病假啊