【Words from a Mother of a Child with ASD】50 Percent Mum and 50 Percent Son
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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