這個星期過的..

此時,隔壁房傳來你斷斷續續的咳嗽聲.媽媽身心很累,不過還不想這樣爬上床就寢.不甘心時間的流失.呵呵~

周日晚上你有點鼻塞,隔天打噴嚏、感冒.

週一媽媽一早起床如常给你備餐,不過還是讓你待在家休息,結果你吃過早餐就鬧要出門去幼兒園.媽媽說了你生病了,不能去幼兒園,你還是堅持哭鬧.媽媽只好搬出你最近愛不釋手的書.其實是食譜.

週二,咳嗽來囉!怕你吵鬧,只是小咳,爸爸還是讓你去幼兒園,不過讓老師留意如果你咳嗽得厲害就打電話給爸爸,讓他帶你回家.早上順利渡過,中午從幼兒園接你回家,你一身疲態.喔~咳嗽變嚴重囉!咳、咳、咳...媽媽在你睡覺前,試著给你用椰油,讓你喝了一小匙,然後用點椰油给你推拿背部舒緩.半夜兩三點你還是犯咳.過來找媽媽,媽媽就陪著你,给你推推背部、喝溫水、喝椰油、最後追加兩顆Virastop.今早有比較好點.

媽媽後來也睡不著,凌晨四點開始準備要出門的事.给你準備三餐打包.然後我們就開始了8個小時SG得旅程.為了讓你多睡些時候,遲些些才出門,不過媽媽起得早,所以沒有很趕.在機場用早餐、九點多飛往SG.十一點到達,然後就轉搭地鐵去診所.午餐就在附近用.一點半得預約,診療用了半小時多,添了很多新藥、輔助品.花了兩個鐘多在診所,之後我們就直奔機場,checked in,四點多快五點時在機場用晚餐.之後就等上飛機.飛機誤點,不過大概七點飛機起飛,八點多到家.我們回來囉!吼~還真的滿累的

有什麼話不可以說?

讓人頹喪的話.媽媽是這麼認為.媽媽覺得這個滿打擊的.不過,原來還有更多的話真的不能說.那麼...沉默嗎?說話這一門課,一輩子都修不完.

今天Teacher Shirley給媽媽上了一堂課.當然媽媽收到了她的提醒.媽媽也在檢討反省.

媽媽一直覺得"稱讚的話" "鼓勵的話"會是給人更努力的能量.不過對於有些人卻是負擔了.噢~也許對於我們的"特別",情感方面會比較敏感.這個媽媽特別清楚.

錯愕!

疑惑!

怎麼說?

媽媽對於那種"可以打擊信心的評語"、"所謂的坦白"、"惡言惡語"、...很過敏.而每個人都是"獨特的".那麼每個人都有自己言語過敏原.這個媽媽倒是明白.那麼彼此相處應該真心相對、互相包容、...還是???

有時候人對情感的隱藏卻又是那麼神秘.媽媽也了解.

說白了,媽媽何嘗不是一直是這個大環境的變色龍.

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.

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!♨(⋆‿⋆)♨

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