An Interview with a Mum of a Child with ASD
It is often said that children with ASD (Autism Spectrum Disorders) are like stars in the sky – being alone in their own world. For parents who take care of those children with ASD are undoubtedly a group that bears the pain of reality, but also a group of extremely strong and tough individuals, who spares no efforts on lighting the journey to the real world for their children.
Today we are happy to share with you a story of a strong mother, a journey of her and her young son with ASD.
Ms. Jia and her son, Haohao, are from Beijing, China, and they have been in our overseas consultation programs for nearly 2 years. Haohao joined Autism Partnership (AP) when he was at the age of 4 and after nearly 2 years of training with AP, Haohao is now 6 years old and will be attending a mainstream school this coming school year!
It is undeniably a blessing joy and pride for Ms. Jia as she shared with us the great progress made of her son in AP.
Haohao was diagnosed with ASD at 2 years old. His language skills were very weak. He was not interested in anything and had weak attachment to us (his parents). The only things that excited Haohao were numbers, words and abstract matters. He had many rigid behaviors and emotional problems. His social and play skills were poor. He had no interest in communicating nor interacting with people, nor interest in playing games. He didn’t have much skills since he had no ability to learn through observation. In addition, Haohao had serious eating problems and other challenging behaviors.
What Ms. Jia mentioned above is not something unfamiliar for many parents of children with ASD. In fact, these are typical problems that many children with ASD exhibit. After having learnt that Haohao was diagnosed with ASD, Ms. Jia has consulted many other parents of children with ASD for advices. Meanwhile, she didn’t stop herself from learning more about ASD, through books, journals and documents, hoping to find a “solution” for his son.
When I first learnt that Haohao was diagnosed, I felt that my world has collapsed. But I knew grieving would not solve the situation, so I immediately quit my job and started seeking supports from hospital and institutions, and looking for the right treatment options for my son.
My family was very supportive. However, it was hard for our grandparents to accept and they refused to believe this at the very beginning. But I thought that it was pointless to argue whether Haohao was autistic or not. When the diagnosed was confirmed, the top priority was to find the right training for him as soon as possible.
Ms. Jia devoted herself in searching for the best treatment methods and centers for Haohao. She has tried many different trainings, while some were not suitable, some were not effective. Regarding to the decision making on institutions and therapies, Haohao’s mother shared her points of view.
The qualifications and standards of institutions and teachers are the most critical considerations, and teaching should be done systematically and professionally. I think that the training should be high-quality and intensive, and done systematically step by step to help improve and strengthen the skills of the children.
By chance from an ASD conference in Beijing, Ms. Jia learnt about AP and the intensive ABA method used in AP. She knew this was the training that Haohao needed. She didn’t want to send Haohao to overseas, so Ms. Jia decided to join the overseas consultation program, where AP helped Ms Jia to screen and hire local teachers in Beijing and provide monthly training, supervision and consultation for Haohao.
AP consultant provided teacher training and parent training regularly. Before the training, it was challenging to communicate with Haohao. It was always an one-way communication; I asked him questions, he responded to my questions. He seldom took the initiative to express or share thoughts.
It was until I learned about a method called “Communication Temptation” from AP consultant, a method that encouraged Haohao to communicate and express spontaneously! And realized that interests could be expanded through games, Haohao gradually became more flexible towards different things and situations. The consultant also tackled Haohao’s eating problem, a problem that I have been struggled with Haohao the most.
The huge progress made during this 2 years period was truly remarkable. It gave us hope for the future.
When talking about the progress Haohao made during the past two years of training, Haohao’s mother showed excitement and delight.
Before the training, Haohao was very robotic, inflexible, and with no problem solving skills. This was a weak area of Haohao, and AP consultant has designed many targeted programs to train up his problem solving skills, and ability to think outside the box.
One tremendous progress that I was most pleased to see, was his eating; he now can eat nicely and independently. He now can also get along with peers very well. The majority of his behavior problems have already been catered and well improved. Now, I can say no one thinks of him as a child with ASD.
Every day you will see progress bit by bit. In the training, you can see the professionalism and the clinical judgement that AP consultant applied in every moment. The programs were adjusted every month based on Haohao’s performance and changes were made to ensure Haohao was learning in the most effective and spontaneous way.
Every progress a child with ASD made is not easy! Ms. Jia shared that as a parent of a child with ASD, care and companionship are crucial. In her journey, she has undertaken great challenges as well – from an ordinary mother who cannot accept ASD, to accompany her son to find the right treatment and path, and motivate her son to learn and strive like other children. The journey is full of bittersweet and she hopes her experiences can well motivate and bring inspiration to other parents of children with ASD.
It will never be easy for any parent to discover that their child is with ASD. I’ve truly experienced that too and was in total distress, having useless arguments with families.
But in fact, the most effective way to help your child is to communicate and take prompt sensible action. Grief and despair do not help the situation. Grief and despair will only waste your chance to seize the right time and right intervention for your child.
For children with ASD, time is more important than life. My advice to parents is: do not struggle over whether the child is diagnosed or not, but to find the right training to help the child as early as possible.
Words from the Consultant:
Teri Mok（Senior Case Supervisor）
As a consultant, it is always motivating to see children making progress. When the children are learning, their parents are learning at the same time, and they always strive and eager to learn more for their child. This is what I found remarkable about our parents, that they never stop learning for their child.
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AP顧問定期提供老師訓練和家長訓練。以前，我和孩子溝通方式有很大問題。爲了讓孩子多説話，都是問答式，示範式，所以他很少主動表達。學習誘發溝通技巧後 (Communication Temptation)，才知道原來有方法可以讓孩子主動溝通和表達。而興趣也可以透過遊戲來擴展提高興趣，慢慢讓豪豪（化名）對不同的事物及安排更靈活，不再刻板。而顧問更幫我解決了豪豪（化名）最頭痛的吃飯問題…… 用時間見證成長的力量，讓原本絕望的我和孩子一起看到希望的曙光！
作為一位督導 ，見證學生的進步是一件很鼓舞的事! 在學生學習的過程中，看見家長不斷在旁學習、 永不放棄地為孩子得到更好的生活作準備的心情， 也是十分感人的。 在過去一年多的時間，豪豪（化名）的成長得來不易。 從我第一次看見豪豪（化名）時，他的學習態度、 行為管理 、表達及語言、 遊戲技能、社交技巧、自理能力和小組學習技能跟同齡的孩子相比有一定的距離。
為了幫助豪豪（化名）提升各方面的技能， 我們為他定立 一系列個人化及有系統 的課程，目的是讓豪豪（化名）循序漸進地鞏固提升各項技能的同時，亦努力為進入主流學校做足準備。語言方面，為了提升豪豪（化名）說話清晰的能力， 我們先從學習物件模仿入手， 進而學習仿說，逐步加入聲調聯繫和延展訓練， 接著引入音量調節的概念，最後實現讓豪豪（化名）在自然環境下能輕鬆自然地發出正確的音調。訓練過程中，配合輔助訓練以達致最終泛化的目的。
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