My son, Zhang, is now 8 years old and though he is diagnosed with Autism Spectrum Disorders (ASD), to me he is just like other normal children, unique and special. To many others, Zhang appears to be a good looking little gentleman. However, compared to other children, the time and effort I spent to take care of Zhang is multiplied by thousands.
Zhang’s behaviors are extremely problematic; he is a picky eater; he doesn’t sleep; he is unwilling to learn nor use language to express himself; he doesn’t have interest in anything; he always throws tantrum, when he gets mad he can scream for 2 hours non-stop and even starts pulling others’ hair and eyeglasses.
Since Zhang has so many challenging behaviors, when we are in the public, we are often being called “psychopath” and “lunatic”. The hardship and challenges raising a child with ASD, I believe only parents of children with ASD can truly understand.
Recalling the time when I got confirmed that Zhang was diagnosed with ASD, I was like many other parents; I was shocked, in disbelieve and felt like my whole world has crumbled down. Whenever I put my thought on my child, I would cry and cry, didn’t know what to do.
I still remember it took one whole year to teach Zhang the 26 letters of the alphabet. I was trying to teach him math, he wouldn’t learn a single thing even bribing him with his favorite food. The most frustrating incident was, after having toilet trained him, he already has learnt how to use the toilet, but he would wet himself because the toilet wasn’t the same or he was in bad temper.
After a period of struggling and doubting, I have started to pick myself up. I knew I needed to step out of this troubling mind set, and find support, knowledge and training for my child. The process was full of anxiety and exhaustion, but I kept readjusting myself and aiming to find the most effective training for Zhang.
Like many other parents, I’ve spent endless hours in finding ways to help my son; searching ASD info online; seeking advices from ASD parents, joining ASD parents support groups; discussing strategies with family. All these was to find the most effective and suitable treatment and training center for Zhang.
Then at an ASD conference in Guangzhou, my first time learnt about Autism Partnership (AP) and their intensive ABA treatment, and it has truly inspired me. In the conference, the AP speaker, Dr. Mitchell, showed a training session of a group of students in AP USA. In the video, through observing other children, the child has guessed correctly what the teacher wanted from the group, and has completed the task successfully through following other children.
While Mr. Toby Mountjoy (AP Director) talked about the desensitization program, then I realized there are methods to tackle the challenging problems of children with ASD. And lastly, the principal of Aoi Pui School, she introduced a case, where the student initially lying on the floor playing with fingers in the classroom, showing no interest, to now could study with other children and pay attention in a classroom. I was truly touched and inspired watching these real cases sharing.
Having considered it was not possible to find an experienced and skilled local teacher in Guangzhou, and myself unable to conduct quality intervention, I have made up my mind in joining AP’s Jumpstart program. That 5 days of ABA training has made some amazing changes and progress on Zhang. The consultant has also taught me some training skills and programs that I could do with Zhang when I returned home. I hired a local teacher in Guangzhou and had home ABA training with Zhang for 1 month, but it was not effective and Zhang has shown major regression. Not to waste any time, I quit my job decisively, brought Zhang to Hong Kong, and started the whole day ABA training in AP.
I am very grateful of the clinical team working with Zhang. They are very experienced and detail-minded, understand every child’s ability and designing programs that are effective for individual children. Zhang’s clinical staff are very supportive, and have always been motivating me and Zhang through the years of training. They taught me many skills to help deal with Zhang’s problems and reduce my stress of parenting Zhang.
Zhang came to AP at 3 years old, after a few years of intervention, he has made progress in many areas.
Though these improvements might not mean much to many others, but to every mother of a child with ASD, these are all amazing steps to be cheered for:
- – Before, when taking public transportation, Zhang used to cry and make lots of fuses, throwing tantrum. It got worse if the compartment got crowded, he started to kick and push people around him. After the training, the situation is a lot better now. His tolerance has become much better, and can accept short to medium distanced rides.
- – Before, when we were at Disneyland, Zhang would cry and throw tantrum wanting to leave. Now he will ask me to bring him to Disneyland, can request to go on rides and can wait in queue. He can even go to a movie with me.
- – Before, at shopping malls, he was not willing to do shopping with me, and kept taking the escalator repetitively. Now he can go shopping with me without problem.
- – Before, he would attempt to get snacks from the high cupboard without asking, but now he will request, and will express that is not what he wants!
- – I taught Zhang “look at the moon.”, and when he goes to Ocean Park, he will point at the first and say “Look at the fish.”
- – He will now put his clothes on nicely. During the weekend outing, he will pack his backpack, and will carry his wallet going in and out of the MTR gates.
- – Zhang will play toys by himself and will pack the toys back. To others, this might not be anything amazing, but it took many years for Zhang to learn this skill!
- – He now knows how to use Wechat to call his family members.
- – During the COVID-19, it is a blessing that he sleeps early and wakes up early, not making a mess in the house.
Both Zhang and I are constantly learning in every moment. He is learning to cope and adapt to the community, while I am learning to be with him, going through ups and downs together and solving problems with a positive mindset. Though I have accepted Zhang is with ASD, but I still have this hope in me, that one day, with our efforts, he is capable of doing things that other normal children can. I am at the same time keep readjusting my expectation on Zhang. I hope he can acquire a decent self-help skills, and can live and interactive with people in the community.
To the parents of children with ASD, below are some of my experiences and feelings that I hope can be helpful to you all.
First, learn to accept your child and accept yourself. I have learnt this from another parent, at first, I didn’t know what it meant. As a mum, it is just normal to hope for our child to be healthy, smart and can achieve great things. However, when you found your child to be different than other children, will you abandon him? That is not possible, he is my child. So do I give up on myself? This is impossible too. I cannot restrain myself within his boundary, within his limitation. Zhang needs a long period to improve his skills gradually, and I will need my own personal space. I love Zhang, but I also need to love myself.
Secondly, it is not easy for parents to be in the role of a therapist. Let the professional handles the intervention and training, and you do your role as a parent. Very often because of the love and hope you have on your child, it is very difficult to stay calm and control your emotion. When problems occurs between your child and yourself, you will find yourself unable to manage the situation well. On the other hand, the experienced therapists can resolve problems of the child during the training efficiently, and I am grateful AP has been providing continuous training and support for Zhang.
Again, I truly hope that public can understand more about ASD, so there will be more acceptance and support when challenging behaviors occur from the children in the community. As a parent, we must be brave, so we can live to enjoy the world around us. I used to wish I had a perfect son, but I am not a perfect mum myself neither.
50 Percent Mum and 50 Percent Son, we both are not perfect, but let’s support and learn from each other.
Words from AP
Zhang’s mum indeed is a brave and strong mother. Very much inspired and touched of her determination, strength and sacrifice in raising Zhang. And we are very thankful of her sharing us her experiences and advices, we hope this will also help and inspire many more parents in needs.
Though the power of stories, we aim for greater ASD understanding and inclusiveness in our communities. The more you understand about ASD, the more possibilities you see.
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[:zh]我的兒子彰彰今年8歲多，他是一個被確診患有自閉症的兒童，但在我眼裡他和任何其他正常的孩子一樣獨一無二。
彰彰看上去是個斯文俊俏的小男孩。相比養育普通的小朋友，我要加倍花心思照顧彰彰的⽣活。彰彰的行為特別「熊孩子」：他挑食、不睡覺、不願意⽤正確的語⾔表達、不肯學習、對周遭事物不感興趣、經常躺在地上大哭大叫，發起脾氣的時候可以尖叫兩個小時不停、伸⼿抓別人頭髮和眼鏡… …由於彰彰種種滋擾性行為問題，我們也經歷過在外被人罵「癡線！」、「有病！」。養育自閉症兒童的辛苦，相信只有同路人的星兒爸媽們才能真切體會！
回想當初得知彰彰確診患有自閉症的時候，相信我和大多數家長都一樣：兩眼一黑，不敢相信，感覺天塌下來了。⽽且每每想到孩子的將來都不禁淚流滿面，不知如何是好，這種憂傷會持續很久。
我記得教彰彰學英文字母，教了整整⼀年多他才會；用最喜歡的零食教數數字，彰彰寧願不吃也不願意嘗試學習；甚至更崩潰的是，經過如廁訓練之後，他已經掌握的如廁技巧，卻會因為廁所有變化或者他的心情不好而尿褲⼦… …
經歷過一段時間的掙扎糾結後，我開始振作起來，也明白要儘快跳出自己的舒適圈，積極學習。雖然經常覺得累和焦慮，但還是要不斷調整心態。為了讓彰彰得到最好及最有效的治療，我和大部分家長一樣做出了很多努力：上網查資料，挨個加「老家長」的微信去請教，約上幾個談得來的家食組成互助小組，互相分享資訊；然後⼀家人商量辦法，以最快的速度開始孩子的康復訓練並為他選擇最合適的治療方法和機構。
在一次去廣州的自閉症講座上，我第一次瞭解到Autism Partnership (AP) 以及AP的高效密集式ABA治療法。那一次講座上讓我印象最深的是：我⾒到 Dr. Mitchell介紹美國AP的小朋友的訓練情況，有個片段是⼀個小朋友通過對小組成員的觀察，猜到了老師對小組成員的要求，並通過模仿小組成員而完成任務；而Toby Mountjoy (AP董事)先生介紹了孩子的脫敏療法，我才知道很多日常孩子哭鬧不合作的情況，其實是有⽅法解決的；還有就是愛培小學的文校長介紹的⼀個小朋友的案例，由他原本無欲無求躺在地板玩手指，到可以在課堂上和其他人學習… …⾒到這些真實案例，我觸動很深。
考慮到在當地無法找到優質合適的老師，而我自己也難以應付繁重且專業的干預任務。我決定先嘗試報讀AP短期的「躍進課程」。那五天的ABA治療在我的孩子身上發生了很多喜人的改變和進步！當時的顧問已經在課堂上教我訓練技巧，並幫我做了⼀個回家訓練孩子的計劃。我在廣州的家裡很認真地自己為孩子訓練了⼀個月眼見彰彰退步得很明顯，所以我覺得不能再耽誤孩子寶貴的時間。於是，我毅然決然辭去工作，帶彰彰來到香港，開始接受AP的全日ABA課程。
AP的治療團隊很用心，對每⼀個孩子都有個性化治療方案，不會因為⼀個⽅法教會⼀個孩子，但教不會另外⼀個孩子而氣餒。我很感激AP的治療師從來沒有對彰彰有半句否定，⼀直都是積極鼓勵我和彰彰。而也教我很多在家與彰彰相處的技巧，減輕我照顧彰彰的壓⼒。
彰彰3歲來到AP，經過幾年干預，他在各方面都得到了進步！而這每一個看似不起眼的改變，在一個自閉症孩子的媽媽眼中，都是值得歡呼雀躍的飛躍進步：
- • 以前搭⾞的時候，彰彰會⼿腳亂動，⼤聲哭鬧，遇上⼈多擠逼的情況他還會悄悄⽤⼿去推別人或⽤腳踢，企圖趕⾛他⼈，還他空間。但是經過訓練後，他的忍耐力很了很多，可以接受搭乘中、短途交通工具。
- • 以前彰彰⼀去迪⼠尼樂園就哭著要⾛，後來他學會要求我帶他去迪⼠尼樂園、學會要求玩機動遊戲、可以排隊等，甚至有時可以和我⼀起看電影。
- • 以前去商場他會要求來回搭電梯，不願意陪我購物，後來他也可以乖乖跟著我購物。
- • 以前他只會自己想辦法去拿放在⾼處的零食，現在他會提要求，⽽且會表達不是這個（零食）。
- • 我教彰彰「Look at the moon」，他去海洋公園時指著魚和我說「Look at the fish」！
- • 他每天自己穿衣服、週末逛街的時候自己收拾背包、自己拿錢包⼊閘出閘（地鐵）。
- • 他自己玩玩具並收拾玩具。這在別⼈眼中可能不是什麼了不起的技能，但彰彰卻是花了幾年時間才掌握了這個能力。
- • 學會⽤微信打電話給其他家人。
- • 疫情期間他早睡早起，「不拆家」（不到處搗亂）也是⼀個驚喜。
其實我和彰彰都在每天治療和成長的點滴中學習。他學習融⼊社區，我學習與他共處，並和他一起面對困難，積極解決。雖說我接受彰彰是自閉症孩子的事實，但是我依然希望通過自己的更努力付出，讓他追上同齡⼈的能力。同時，我也在不斷調整對彰彰的期望，希望他可以有一定的自理能力，並能夠在社區裡與更多人、事、物和平共處。
對於所有養育自閉症兒童的同路家長們，以下是我的一些心路歷程和感觸，希望也能夠幫助到你們：
首先，學會接納孩⼦，同時接納自己。這也是⼀個「老家長」分享給我的。開始的時候我也並不完全理解。作為母親，當然希望自己的孩子聰明伶俐，健康成長。但當你發現孩子與其他同齡小朋友有些不同的時候，我要放棄他嗎？不可能的，他是我的血脈之親。那要我放棄自己嗎？那也是不可能的，我不能因為孩子而把自己徹底圈在他的圈子裡。他需要很長時間去慢慢改善，我也需要有自己的空間。我愛彰彰，但也要愛自己！
其次，有時候家長很難勝任老師的⻆⾊，有些訓練交給專業治療師，分工明確才會事半功倍。出於對孩子的關愛和期許，你很難永遠冷靜地控制自己的情緒，在和孩子角力的過程中，往往會讓雙方僵持不下，相反，經驗豐富的治療師就可以在訓練的過程中遊刃有餘。我很慶幸有AP提供為彰彰提供穩定而持續的治療訓練。
最後，真心希望更多⼈瞭解自閉症，在受到無心的滋擾的時候多⼀份理解和包容。作為家長的我們⼀定要堅強，才能在社會越來越好的時候，好好享受⽣活。曾經我也希望我有個完美的兒⼦，但是我也不是完美的媽媽。
五十分媽媽和五十分孩子，各自都不合格，但請互相關照，與生活握手言和！讓我們一起勇敢堅強地面對眼前的生活和未來的路！
寫在文末的話
「女子本弱，為母則剛！」彰彰媽媽無疑是一位剛強且偉大的母親。感謝她在養育彰彰的過程中所做的所有犧牲和付出，亦感謝她接受我們的邀請，分享她的心路歷程和孩子的治療點滴，希望以此鼓勵並幫助到更多星兒的家長們。
透過彰彰媽媽的分享，我們亦希望傳遞給大眾一個重要訊息：大家應理解並包容自閉症人士，讓他們能更好地融入這個社會，貢獻出您的一份力量！
請分享，讓更多人了解自閉症及學習更多應用行為分析（ ABA）的治療技巧。
Facebook: APautism
微信號: AutismPartnership_HK
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