Sunday, June 15, 2014

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!

p/s: If you happened to be a parent of an ASD Child, I have created a "Singapore Parents Support Group for Mild ASD Children" Facebook Group with the vision of parents supporting each other by sharing information, resources, strategies or even tips on coping with our children.

Most importantly, if you also do not believe in limiting yourself and your autistic child's life, please join us in making a difference. We are looking for more parents to organise field trips for our children, home learning support group, parents sharing expertise and knowledge with our children and eventually, work together to create awareness of high functioning autism like asperger's syndrome or mild autism to the public and help our children merge into and contribute to the society in future.

If you enjoy reading this post, please like me on my Facebook Page as it's where i connect with my readers. I will be very delighted if you can also add me on my newly set up social media accounts - InstagramTwitter and Pinterest.

23 comments:

  1. Thanks for sharing this heartfelt post and for showing such a raw side of you. K is very lucky to have you as his mum. Please don't feel bad about yourself. As mothers we are all guilty of one thing or another. You are only human. I think you are doing such a wonderful job!

    Happy to meet for play dates if you like! Hugs.

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    1. Thank you Adora! It's just something I have to get off my chest. If i don't do it, I will continue to dwell on it.

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  2. Hugs, Ting. I can imagine how hard it is for you to share this on the blog at last, somehow I hope it is a relief for you too that you can finally get it off your chest. Thanks for sharing all your heartfelt thoughts, we all have expectations of our kids at one point or another and it is easier to say letting go than doing it, especially when you say to have zero expectations, that can be the toughest thing. Plus you still have Kyne to look after. It's amazing that Kyle actually saved up his coins just to buy materials to make you a gift, that is so, so sweet of him and I know how you must have felt then. I always beat myself up pretty often after things happened but yet when they do, I can't control my feelings, my mind and my temper too. It happens to even the best mums out there. Jia you and hope to meet up again soon to chat! =)

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    1. Thank you Summer!! True that all mums make such "mistakes" cos we are only human too. I think the happy thing is that I have made many good friends in the SMB committee and everyone is so supportive! Jia you together and really many thanks for our friendship! You are one of my treasured friend! :)

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  3. Thanks for sharing this heartfelt post and I am sure it provided some relive for you. Keep up the good work you are doing now, I am sure you can conquer the situation soon. Remember we are here to provide some support to you too.

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    1. Thank you DInomama! I really appreciate the support I have from you girls! Not just moral support but also gave many great advices and sharing of information! I really thank god for knowing you people!

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  4. Ting, you are a great mama!! I cried reading your post. I would have reacted the same way! I have seen Kyle a few times and may I tell you that he is so well behaved each time I see him. He looks so gentleman and is really gentle mannered. Love his Kidstartnow poster boy childlike look too. Take comfort that he has good days and that's so precious to a mother with special need child. It is often through such situation, that one appreciates her loved ones more than others who often take for granted. Don't worry about your younger son at all. Don't fret the yet to happen things. Just enjoy the moment and enjoy that they are with you. You are a terrific mother :)

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    1. Thank you Christy! Your observation on my boy really made me feel better! Yes, that's also why every other day i will think there is a misdiagnosis somewhere! :)

      I worried about my younger boy cos, if i couldn't tell anything signs about my elder boy until he was turning four, I began to see some warnings in my younger one that he may be more serious. my elder boy started talking before 1 and younger boy is quite slow in his development so, i will just pray.

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  5. Big hugs to you. I'm not sure if consoling words help, because I know that ASD is something that will be with him forever. Remember what you told me that most importantly is that he is happy and enjoy his childhood. So if you are happy I'm sure he will feel your love for him. They forgive and forget very easily, so don't blame yourself.

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  6. Ting, thanks for opening up and sharing your experience. Am sure it will help many others who might be in the same plight, but it also opened up my eyes on how as mothers, we often unknowingly put expectations on our kid. You are doing great and Kyle's love for you is a great testimony of that. No mum is perfect and don't expect yourself to be. Just keep showing your love and the terrific mum that you already are. Jia you Jia you!

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    1. thank you cherie! i learnt to be grateful of what i have. already, i am very very grateful to be able to hug my both boys everyday. i hope to tell some parents that their child are very very great and they should relax abit and enjoy lifes with their precious child too. :)

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  7. Big hugz, Ting! Your very honest sharing made me cry. I have a nephew who is autistic, pretty serious, so I can totally understand your struggle. If this makes you feel better - my brother has 3 sons, only the middle child is autistic while the other two are totally not affected. So please don't worry too much. What happened on the Mother's Day could happen to any child any mum, so please try to let it go and stop blaming yourself. I think it's important to accept the fact that he has Asperger's so your know how to help him. On the other hand, what your PD said about not to label a kid also makes sense. You are always the greatest mum to my sons! Jia you!!

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  8. Hugz Ting - It definitely doesn't sound like an easy journey for you and Kyle. The acceptance is a big hurdle already I'm sure.
    Kyle is really so sweet to know how to express his love towards you; you are doing an amazing job bringing both boys up!
    I first read about Aspenger through a novel by Nicholas Sparks (Dear John). It is an amazing story between a father and son (and some love story of a couple in between too). If you have time, can try borrowing it from the library for a causal read.

    Jia u! :)

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  9. Oh my, Ting, you reacted accordingly when he needed you, so you were already doing what he wanted you to do- to be there for him! And it's perfectly normal to want to see your child present smthg he worked hard for, you said even he was feeling excited right? We are learning together with him as well~

    I've got a friend whose child has mild autism, another 2 nephews, one with high degree autism (his brother is mild). There's early intervention schools for them which helps them and teaches parents how to prevent stressful situations. You can check them out, see which one is nearer to you. www(.)ncss(.)org(.)sg/career/EIPIC(.)asp

    And as much as there are people who don't understand the situation, there are more and more people educated about it as well. Like the other mommies said, it's not so much about the label, but understanding how we can help them to be their best. The high degree autistic nephew I told you about? At a tender age of 9, he completed an entire flash animation on his own, nobody taught him. He's brilliant in his own way~ So do hang on to hope! You're already doing a good job!

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  10. *Hugs* Ting, I admire your courage and strength. You are a great mum. Onwards Mummy! Jia you Jia you!

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  11. Hugz Ting! I am so touched by your sharing. I remember during the Parent's World exhibition, Kyle shared his sweets with my children, he is such a sweet and kind boy!

    You are a great mum to your boys! Jia you!

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  12. Ting, my heart goes out to you. Motherhood may be filled with heartaches inevitably, but Kyle has proven you are doing great as his mother and he knows it! Keep hope and faith in your heart.

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  13. Big big hugs, Ting. May you be strong as you love and care for him. I remember someone once said this as she reflected on raising her child who has asperger's - I have to first remember he is my child first and foremost, and that I can enjoy him simply for who he is. I hope this blesses your heart.

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  14. "Why fit in when you were born to stand out" - Dr Seuss

    I've always likened kids with special needs as kids who are special. They aren't disabled, they aren't different, they are just special. Special in their own way of communication, behavior, and expression. And it's a form of art to be special. And you must be a very special mother to be given such a special boy. :) I think you are doing wonderful, Ting and so is Kyle!

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  15. Hi. I was looking through your blog and read this touching post.
    Just thought to drop a note and say 'jia you.'
    You will make a difference to your son. Continue to keep a positive view though difficult not to have any expectation.

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  16. Hi Ting, you are brave to write about this. Based on what I have read about Kyle so far (all your previous posts), I am curious to know whether the psychologist did an IQ test. Many psychologists only test for learning disabilities.

    Some of the characteristics you have mentioned, such as sensory issues and interaction issues could be found in gifted children too. He is able to show a lot of concern and love for you, which amazes me. He could also be twice exceptional.
    http://www.sengifted.org/archives/articles/counseling-multiple-exceptionality-and-psychological-issues

    I think you are doing a great job so far, kambate.

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    1. Hi Sarah,

      thank you for leaving me a comment. I struggled very long to publish the post actually. And i am still struggling daily too. every other day, i will tell hubby that i think Kyle is does not have a problem. But he really does have learning issues. till now, he still cant recognise the numbers beyong 9. Nope, no IQ test done yet.

      You are right, i kinda start feeling angry why we are always focusing on his weak areas and not his strengths. when it comes to own children, it's always a struggle for me. i don't know if I am doing the right things. Hubby said to send Kyle to Pathlight.. but i still have the what if.. what if... what is it's misdiagnosis?

      hubby said no point to redo the test when he is still young though.. i will continue to wait for a sign..

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