I stumbled upon autism when my son was diagnosed at three: it’s been so many years now and I still feel this journey is so long.
Unlike many uplifting stories on the internet, our stories are perhaps a little dark. My son is considered on the severe end of autism. He would always need support.
I have been using Facebook as an outlet and thought I would share it with you here. I also tried to write up some articles to provide a more organized view of my ideas.
Latest Facebook Posts
First, read this latest article from my friend and my ultimate refuge.![]()
My thoughts are in the comments.
We spent a few days in San Francisco's Fisherman's Wharf.![]()
We got the day pass and went on the streetcar (F Line) and took the cable car.![]()
Kiddo was scared when we got onto the streetcar but quickly realized it was like a bus. He calmed down rather quickly.![]()
Cable car was a different story. We stayed in the inside portion and it was a bit noisy. Kiddo was terrified.![]()
As people crammed into the cabin, I, sitting across from Husband and Kiddo, heard Husband trying to calm Kiddo and from time to time he would tell the passengers that Kiddo has autism.![]()
It's the first time I realized that I heard Husband explaining to other people.![]()
Between Husband and I, I would take Kiddo out to grocery shopping a bit more often. Husband used to go on business trips, so I sometimes had to take kids out myself. It happened a lot that I had to grab onto Kiddo, or ask Princess to run after him, while explaining to others that we were ok and sorry for any disturbance.![]()
Then I stopped explaining too much. Kiddo stands out in the public because he still acts like a child in an adult body. People just back away when we seem to have any issues. And I would constantly talk to Kiddo about what we are waiting for or what we are going to do, even though he never answers.![]()
But again, I never take him to places that I can't anticipate. If it's a new place, I would either scout it before hands, or we would go as a family.![]()
It's rare that I would see Husband alone with Kiddo. It is rare for me to hear that Husband is advocating for him.![]()
And I love the new experience.
I met up with some old friends during our trip. ![]()
Many years ago, we used to work in the same company and hung out on the weekends. Eventually they moved to California and had a baby boy.![]()
Husband had visited them over the years and told me that their son was not talking. Then I saw some videos they posted and it looked rather suspicious.![]()
On one of Husband's visit to them, I briefly talked to the wife about getting their son assessed. I told her just keep an eye on it. Nothing to worry about. He's still the same precious baby.![]()
Later they indeed got an autism diagnosis. ![]()
I haven't seen them since they moved to California. I was also excited to see their only child whom I've never met.![]()
The husband gave me a very big hug when we arrived at the restaurant. He told me I had no idea how much they appreciated my nosiness/bluntness.![]()
I totally understood what they went through at the moment and how much efforts they have put in over the years from the few words he told me.![]()
We spent a few hours chatting and the boy is now talking. He's able to answer questions when asked, and is the most adorable and compassionate kid I've seen.![]()
He was curious about Kiddo's non-talking, and showed a lot of affection and care for both Kiddo and Princess.![]()
I realized at the moment, this is a couple who obviously put in a lot of efforts and their son as a top priority. The wife had to turn down management positions because they would require her to travel. They have build their life around their son's needs, while manage to have huge smiles and laughs.![]()
Husband hates my nosiness. He probably sometimes wishes I would just keep my mouth shut. But my friends told him that they knew I was a friend. ![]()
This is not the first time I got thanked for my minding-others-business. I understood how much I have regretted not getting Kiddo help earlier. The whole journey with autism isn't just for kids. It is how parents also learn to handle different things in life along the way.![]()
As a mother, I was expected to know how to handle my son when I really didn't. It was shame and guilt and it is sometimes difficult to handle.![]()
I remembered the relief I had when I got his diagnosis: I am not a bad mom. He was just a difficult baby.![]()
Over the years, I learned to take care of myself, and my family. It didn't come easy. I learned to tell people no so I could put my kids first. It took years to finally realize that autism is staying for life, so we'd better learn to live with it.![]()
Our kids are different. Our journeys are also different. I could see their son being able to get a job and be independent somehow, at the same time understanding our struggles and accomplishments are never going to be the same. Because we have very different kids. ![]()
(I also hated it when people keep on asking why Kiddo isn't doing as well as other kids, or why Kiddo doesn't have any talent. In a way, I feel they are expecting we are able to change something we do so Kiddo "could be better". Like, why can't I just love my children as who they are?)
Kiddo sometimes would make loud sounds in the public. ![]()
His sister hates it.![]()
Especially when Kiddo acts up a little in the public, Princess would be so embarrassed that she also gave out some big annoying sighs.![]()
It's not easy to be a sibling. We got Kiddo's diagnosis a few weeks before Princess was born.![]()
In other words, she has never not known autism. She was often pushed aside while we were handling Kiddo's meltdowns. I still remember the first day she became embarrassed by her brother's behaviours in the public.![]()
Things changed, slowly, after that. ![]()
For the past few years, we are dealing with her mental health issues. Being a teenager isn't easy, especially when you didn't exactly have a normal childhood.![]()
What is a normal childhood? I would imagine not to be rushed home from the playground because her brother was acting up. Or being able to spend more time with her friends after school or attending all the after school activities, instead of staying home because of her brother’s schedule.![]()
When Kiddo was more stable, I started to go on small trips with Princess. We had an annual mother-daughter trip for a few years. It is a trip mostly about her.![]()
The first trip we took was a bus tour to New York. And that's when I first realized that I needed to see her as an individual, different from me or whatever I imaged of her.![]()
I have to say I also have certain expectations for her, and she doesn't always meet them. She's made mistakes that I am absolutely horrified about but I told myself not to embarrass her further. ![]()
Now she's in her mid-teens, I would talk to her more about my struggles and how I really don't know about parenting. I rely on her to make the best decisions for herself. I would tell her when I cannot handle anything but we will figure it out later.![]()
I think she knows that I am trying even though I am not always there for her. I've always told her that I do not want her to help her brother on a tedious level, but perhaps help to manage his accommodations and finances.![]()
I told her she's never allowed to use her brother as an excuse of not doing something. She wants to travel, go. She wants to go for a job in a different country, go, but make sure there's an internet or phone connections.![]()
Kiddo and Princess are both my kids. They deserve the best. While we are all growing up together, we have to make some sacrifices but we should always be able to do what we want to achieve eventually.![]()
I would always add an "yet" after "I can't", because we might not be able to right now, but we will.
I had an interesting conversation with my mother. ![]()
At some point, I told her that I've always seen her taking care of everyone else in the family but herself. I didn't know to take care of myself, and I often felt guilty when I needed breaks.![]()
Then Princess was born. Seeing how she's affected by her brother's autism, I realized she needs to know she's the most important person to herself. In the future, she also needs to recognize how to put herself first. ![]()
I also found that when Husband and I am tired, we are terrible parents. We don't have much patience and we see everything with anger.![]()
Because Kiddo doesn't talk, I found it more useful to show him instead of to tell him. I then also learned that it is the same for Princess: she picks up things we say but don't do quite early, and would call me a hypocrite.![]()
Over time, I learned to walk away and to urge Husband to find a way to take a break. I learned that Husband needs his regular gym schedule whereas I need solo weekends so I can stop planning what's for dinner.![]()
My mother, being a very traditional mom, smiled. She didn't approve my solo trips away from kids in the past, but I think she understood it now.
這次有機會跟阿媽聊了一下.![]()
跟她說起我從小只有看到她忙著照顧全家, 卻沒照顧自己. 所以當我需要休息的時候, 常常很內疚.![]()
妹妹出生後, 看到了哥哥的自閉症對她的影響, 我才想到她必須要學會自己是自己人生中最重要的人, 要好好照顧自己.![]()
我也發現當老公跟我都疲累的時候, 我們是很糟糕的父母親, 不但沒耐心, 而且什麼都會讓我們生氣.![]()
因為哥哥的無口語, 很多事情必須做給他看, 而妹妹更是從小就辨認出我們偶爾的言行不一.![]()
漸漸地, 我開始學會休息, 也要老公自己想辦法放鬆, 後來發現他只需要每天去練 jujitsu, 而我需要一個人的小旅行,不然我會一直在想著柴米油鹽的瑣事.![]()
很傳統的阿媽, 以往一直覺得我是個很不負責任的媽媽, 總是拋夫棄子地自己出去玩, 這次應該了解女兒的任性不是沒道理的.