What this Mother's Day Means to Me

I took a very very long time to write this post, a post about my elder son, Kyle. This is the first time I am opening up about his condition on the blog, because my husband had encouraged me to do so. He believes that it will help others in the similar predicament to cope and be connected, as well as gives public an awareness and a glimpse about Autism in Singapore.

In fact, since the confirmation of his diagnosis in Feb this year, I have accumulated many different draft blog posts about Kyle, because all my thoughts were fragmented, my feelings were forcefully kept and put away, simply because every time when I started to cry during writing, I stopped immediately and refused to continue, I refused to give myself the time to feel. I do not like the sour feeling in the heart and that my heart can actually really tightened and cramped. 

My Kyle is Autistic. To be precise, Kyle has Asperger's Syndrome as informed by the psychologist and doctor. Autism is actually a spectrum and everyone of us are on the spectrum actually, whether how mild or serious, or how it affects us. After I read up intensively about ASD, I realised that every one of us is autistic to some point. No one is left out on the spectrum but just whether you are labeled as a disorder or not.

"Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. With the May 2013 publication of the DSM-5 diagnostic manual, all autism disorders were merged into one umbrella diagnosis of ASD. Previously, they were recognized as distinct subtypes, including autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome. ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, math and art." 
- extracted from What is Autism?

If you wish to know more about Asperger's Syndrome, you can read here and here.

When the doctor gave me his assessment report, she had also mentioned and prepared me that Kyle may not be suitable for mainstream primary schools. It's very difficult to understand cos my boy is not like the autism I learnt from the television shows. My boy talks A LOT, many of his sentences are from various cartoons he watched. He learnt and is able to link different sentences from many cartoons together to form a conversation and he talks with the cartoon slang. The very few people whom I shared this news with, all gave me the similar responses - that is I am crazy, the professionals who assessed him got it all wrong, that my boy is perfectly normal, that he looks really fine, that he will get well again and for "goodness sake!" I was told by another PD that Kyle had been seeing, to not to label my boy cos of the social stigma around autism. (Autism is not a condition or illness, it is called a disability!! And autism is not an illness, it is for life and cannot be cured. With early intervention and intensive therapies, we can only hope that the child can adapt and be trained to fit in.)

If I have a choice, definitely I wouldn't want to believe my boy is autistic too. He who made me a mom, he who is the world to me, he is such a handsome cute little boy that talks a lot. Do you think I want to label my own son? But as his mom, to help him, I have to accept whoever he is, and by accepting that he is autistic, then I can allow him to go through the appropriate therapies and applies the correct strategies on him to help him.

Accepting has allowed things to move on - for example, now I know he has sensory issues - that a shaver will not work on him and he cannot wear the protective gown and yet he go into a hysterical meltdown when the cut hairs fall onto him. No one believes me when I said that no hairdresser or barber dares to cut Kyle's hair because Kyle will go hysterical at their shops.. Everyone thinks I am lazy or can't understand why I am not cutting my son's hair. Even my hubby has problem holding Kyle down and when he gave up trying, I attempted to cut Kyle's hair myself. If I don't cut his hair, no one else could and I am his mother. If I don't cut his hair, I am the one that gets blamed by everyone. The first few times I cut his hair last year, I had to pin him down with my own body, we both ended up lying down on the bathroom floor with baby crying outside. Some people may comment that "Huh?! Why he is like that? He is so big now still afraid to cut hair?" Well, I can only say that my son is not the only person in this world that is afraid of getting his hair cut, and *shrugs* you are just lucky that your child does not have this issue!! At least, my son is one that really look very good with long hair.. so why let his hair bother you? And for myself, I applaud that I am turning into quite an experienced self trained hairdresser and I no longer have to pin him down anymore. 

I have to admit,  every other day I get very lost and disillusioned. Kyle can seems so normal, I have the wishful thinking or doubt that maybe it may be indeed a misdiagnosis? I remembered the day I got his report, I was crying all the way as I drove my children home, from Jurong West to Sengkang.  I called a long lost touch ex-colleague that I had when I was really young at 21 years old. I remembered he had an autistic son so I asked him if he can helped me. What I should do. I really needed to know how his son whom is now a teenager, how he is doing. I asked about his younger son and he told me both his sons are autistic and one of them is an Asperger too while another is more serious. I shivered in fear because that's what the Doctor and therapists told me too, that they do see that autism runs in the siblings. I needed to prepare myself for what the future means for my son. Being hopeful and ignorant will not help us, i needed to be very realistic then. I remembered the very one tip that he gave me was "do not have any expectations on the child" then you won't go into depression...

Which is the very thing i failed badly on. This Mother's Day, the first one since I knew of Kyle's condition, I still put hopes and expectations on Kyle and I have inevitably hurt him and myself...

On Mother's Day itself, we brought Kyle to the special makeup class at KidStartNow for the 2nd lesson of the Mother's Day Special.  At the end of the lesson, the children were supposed to put up a mini performance to surprise their mothers. Filled with excitement, i was actually looking forward to it and had prepared Kyle what they will be doing! I told him i looked forward to seeing him sing! When we reached KidStartNow, Kyle was very excited. He took off his shoes and ran to the classroom.  However, upon reaching the door of the classroom, his face changed and he ran back to me. For the first time since he began the weekly classes in January, he insisted that I follow him into the classroom. I felt he was nervous about having another parent inside the class, a mom accompanying her son who is a new student attending KidStartNow. The boy was crying and his mom was consoling him. The presence of another parent and the cryings had affected Kyle. A while later, another parent came in with a new student too. The makeup class has a total of 8 students as compared to his usual 4 classmates. Kyle was super sticky and he was practically koala hugging me, face buried in my chest, totally not listening to the teacher. I had at that moment felt very stressed and refused to accept that he was affected by such a small change. I wanted to feel that he was depending too much on me, so after a while, I told the teacher I am going out of the classroom and i struggled free from him. 

From the TV outside that is connected to the classroom via Skype, all the parents watched with me how Kyle went hysterical. He was crying and he wanted to come out to look for me. A while later, he started growling and hitting things. He had watched "The Hulk" and somehow he learnt to behave like the hulk whenever he is afraid or angry. He struggled with the teacher to open the door. He kept shouting "我要妈妈!"

Actually, I felt really bad inside. I would have cried but I didn't. It's mother's day and I made my own son suffered all because of me. He loved me so much in his own way, why did I bloody cared about if he can sings in front of an audience or if he is too dependant on me!! I was very angry with myself! He was crying and inside me, I was tearing too. It's usual for children to cry to ask for their mothers. But for Kyle, he really needed me then and i actually abandoned him!

This had been solely my fault, I had usually worked very closely with the team at KidStartNow, on preparing Kyle for any changes and the team there are had been very understanding and patience with assisting me. But just like all mothers, I got overly excited over this Mother's day. I had wishfully hope for a miracle to see my darling son perform in front of an audience. I was looking forward to see if he had overcome and be able to achieve this milestone. I made the mistake of having expectations on him and forgotten to prepare him for any possible changes. I had happily forgotten about his sensitive needs. 

Kyle was disruptive and the parents started asking me what happened and i mumbled something, then I ran out of the centre to find Hubby. He told me that either I go into the classroom to accompany Kyle, else we bring him home immediately. And so, i went back into the classroom to accompany Kyle. The way he bursted out in tears upon seeing me, made me hated myself as his mother, i felt very very bad. I am really not a very good mother to him that day for his meltdown could have been avoided totally by me. 

I hugged him really tight and I rocked him and said "I am so sorry, Mommy is here now. I am so so so sorry.. " Then we enjoyed Mother's Day attending the lesson together. After a while, with my presence, he was able to participate in the classroom activities normally again. Never mind I did the Mother's Day gift together with him. Never mind when during the mini performance in front of all parents, he ran away to me instead of singing in front with his classmates.

The Mother's Day Gift that I completed together with Kyle. The stickers were redeemed using the "coins" he had earned in class

For he tells me daily "I love you very much" or "I love you too" and lately, after attending the Mother's Day Special at KidStartNow, he started saying in his very cheena tone "妈妈! 我爱你!". 

He also had been singing to me many times this song that he learnt from the KidStartNow class:

妈妈妈妈快坐下
妈妈妈妈快坐下
请喝一杯茶
让我亲亲您吧
让我亲亲您吧
我的好妈妈
我的好妈妈

A few days after the class, the team at KidStartNow emailed me the photos taken on the day as well as shared with me that the students earned "coins" for participation and good behavior in class, they can use the coins to exchange for stickers for themselves. He highlighted that Kyle had been saving up his coins and refrained from exchanging stickers for himself, so that he can accumulate them to "buy" materials to make the Mother's Day gift instead. 

This, my heart broke. I am sorry Kyle, your love for me is so simple and so real. I am sorry to complicate and confuse you. I am sorry, I am very very sorry to have screamed at you so many many many times. I know you don't mean it and I know you don't understand sometimes. It's actually myself that I wanted to scream at. I am sorry to put expectations on you and I will learn to be a better mom for you, i am trying.

我真的,真的很爱你!


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