When I discovered that autism was going to ride with us throughout our lives... I could not foresee many things. I knew that many of the aspects of my life was going to change. My lifestyle, my relationships and my whole being.
With so many things, racking up a whirlwind around me. I never realized the toll it would take on my relationships. And amongst the many relationships that too a beating, my marriage took the worst. During my many read-ups, I had read, was that the divorce rates amongst parents of children with special needs are on a high. But I had no idea how, or when it was going to hit us.
Well, it started with a dose of deprived sleep, (for both of us). As Ivan would sometimes stay up all night, we had to take turns, keeping an eye on him. I normally took the first shift, and Peter took the later half. Sometimes, we would knock out, then quickly startle back into reality. Just to check that Ivan was safe.
Imagine, keeping your son under 24 hours surveillance. Only difference is, there is no CCTV. Instead, it's you.
Image, going to bed every night, hoping that your son would not wake up and hurt himself, while you were asleep.
Cruel... true... but that was my plight. Unless we learn to relax a little (which I have learnt now) you will drain out very quickly.
With sleep being a scarce commodity, you will find yourself on edge most of the times. And sadly, should you need to snap, it's your spouse that gets the explosion. I just needed to get the frustrations out of my system. But I had no one to turn too. So I blow out at my spouse, on a regular basis. He would stomp out not wanting to deal with my rages.
Many atimes, we felt our marriage slipping through our fingers. We both wanted a solution. However, since there was no solution, we seeked out solace in escape. We stopped talking about the autism, although we felt it's presence. Hoping that it would get tired of hanging around and leave us alone. Unfortunately, it's still an unwanted guest in our lives. But we have grown stronger over the years. I truly believe, that what cannot kill us can only make us stronger. Throughout, all the struggles, Peter and I have walked apart... but we were both walking towards the same direction. We both found the fight for Ivan. We both needed one another, but we didn't know how to show it.
After a lot of screaming, crying and hyper-ventilating, I look back now and thank the good Lord for being there with us. I choose to believe that He held us strong, when we gave up. I guess, now that I know better, I could share some tips for the new travelers on the road of autism.
point #1 - Grieve separately
We are all different. I like to talk about my feelings/ write them down. Peter on the other hand, likes to keep it to himself, and zone out with his alone time. So you see, it's impossible to comfort each other like this. But if we licked our wounds, separately, we could compose ourselves and walk together again. You see, when you are hurting, you expect your spouse to comfort you. But your spouse is hurting too. So take a breather, give each other some space. Face the ugly, yourself. Sometimes, you can surprise yourself, to know how strong you really are.
point #2 - Get real
So come on now, don't kid yourselves. Set reasonable and realistic goals. When you visit the professionals, don't expect too much from your kid. Remember, your child is fighting with autism. Be kind to him/her. Encourage your child and yourself, by setting reasonable goals, so that success can enter your lives and hopefully, grow with you.
point #3 -share the yoke
Don't carry the burden by yourself. I did that, trying to shoulder all. I failed. In times like these, you need each other. Rely on your spouse. You promised to stand by each other on your wedding day, remember. So do it.
point #4 -rekindle that flame
When you are in such a situation like this, the last thing on your mind would be a little romance. But try to set aside some time, for just the two of you. Go for a date if you can. Remember, what attached you to your spouse in the first place. That may be what you need to remind you, that you have each other.
The guys would be anticipating some long awaited love making, however, the ladies would be waiting to share their feelings. So based on your individuality, figure a compromise. I was not that fortunate to have date nights, after Ivan was diagnosed. No one understood him, or thought that we needed some time away too. So, we made the best of our situation. The boys were sent to bed by 9pm. And once they were asleep, we have a glass of wine out at our balcony. We had our own time, without any interruptions. The conversations, at an atmosphere like this, will truly change the mood and the tone of your voice too. You may find your spouse to be a little more sympathetic and patient. Your spouse and you may even see eye to eye on certain issues. And make some important decisions eventually.
At the end of the day, there is nothing like a little TLC.
Wednesday, April 27, 2011
Tuesday, April 19, 2011
How it all began?
The year was 2002. I am sitting at the therapist office at KKH, CDC. The therapist, introduced me to Autism, one that was going to join us for the rest of our lives. But I didn't really comprehend this, at that time.
I recall, having so many thoughts racing through my mind at that time. I took the sheets of paper given to me, got up from my chair and held my baby's hand. We walked out of the room, with the same expression... blank. I headed to the payment counter and then to the taxi stand. Came home without saying a word. What was this "autism" that followed me back home? I had never heard of this before.
I guess the word used in the 90s to describe children that were challenged was called "retarded". Did my boy have this? It sounded really bad... I was confused, worried, upset... so many emotions, that I could not name all of them.
I didn't have much to say, I didn't call anyone. I headed straight to the laptop. I Googled "autism", and started reading. Vaguely, I understood, what I read. I knew for sure that something was seriously wrong with my baby. I shared the information with my hubby when he came home. It wasn't shocking, he just went silent. He always does that when he was troubled. It went on for days. I was waiting for him, to comfort me. I don't really know what was going through his mind though. A week went by and the silence persisted. Eventually, I confronted him. I was lost. He was lost. Ivan was lost in all this.
We knew that we had so much to deal with individually, that we simply could not discuss the matter just then. We discussed the matters that were cruicial for decision making at that time. We then left to our own corners to lick our wounds. It was to complicated to express in simple words.
I recall, having so many thoughts racing through my mind at that time. I took the sheets of paper given to me, got up from my chair and held my baby's hand. We walked out of the room, with the same expression... blank. I headed to the payment counter and then to the taxi stand. Came home without saying a word. What was this "autism" that followed me back home? I had never heard of this before.
I guess the word used in the 90s to describe children that were challenged was called "retarded". Did my boy have this? It sounded really bad... I was confused, worried, upset... so many emotions, that I could not name all of them.
I didn't have much to say, I didn't call anyone. I headed straight to the laptop. I Googled "autism", and started reading. Vaguely, I understood, what I read. I knew for sure that something was seriously wrong with my baby. I shared the information with my hubby when he came home. It wasn't shocking, he just went silent. He always does that when he was troubled. It went on for days. I was waiting for him, to comfort me. I don't really know what was going through his mind though. A week went by and the silence persisted. Eventually, I confronted him. I was lost. He was lost. Ivan was lost in all this.
We knew that we had so much to deal with individually, that we simply could not discuss the matter just then. We discussed the matters that were cruicial for decision making at that time. We then left to our own corners to lick our wounds. It was to complicated to express in simple words.
Monday, April 18, 2011
Denial
The Stage of Denial
As humans, many a times, we try to hide ourselves in this place called Denial. For some of us, the situations seem too much, that blocking it out seems only fair. I can fairly say that the same goes for parents of children with special needs. There are a couple of stages that we all go through, but they may not be in the same order. Denial of course, is one that everyone would have visited at one point or another. "My child has a problem? Autism? Asperger's Syndrome? Really? ... Seriously, I don't think so."
Have you hear these words in your mind? Well don't be ashamed, we all have entertained this once before. We all deal with trials differently, I waited a year to breakdown, while my hubby spent a year in a place called Denial. When he was on board, I broke down. One of us had to be functioning with sanity. I will share more on this experience soon.
As humans, many a times, we try to hide ourselves in this place called Denial. For some of us, the situations seem too much, that blocking it out seems only fair. I can fairly say that the same goes for parents of children with special needs. There are a couple of stages that we all go through, but they may not be in the same order. Denial of course, is one that everyone would have visited at one point or another. "My child has a problem? Autism? Asperger's Syndrome? Really? ... Seriously, I don't think so."
Have you hear these words in your mind? Well don't be ashamed, we all have entertained this once before. We all deal with trials differently, I waited a year to breakdown, while my hubby spent a year in a place called Denial. When he was on board, I broke down. One of us had to be functioning with sanity. I will share more on this experience soon.
Where I am today...
I sit at the dining table having my breakfast. As I enjoy my sausage and eggs. I think back to the times, when it was so trying having Jr Autism dine with us.
Actually all meals were the same. Ivan's food had to be cut up into bite size portions. I had to remove the stuff that he would not eat. I had to make sure that all was up to his liking. Then and only then, could I get to my plate. And by then, my food was cold and I was annoyed and hungry no more.
I recall one day, that I snapped during lunch. We went out to dine, and I placed the orders for Ivan and I. Dad and Immanuel chose their own. When the food came, I did what I always did. Since Immanuel ordered chicken, I had to help him cut it up too.
As I was settling all this, I snapped at my hubby who was enjoying his meal. I was so annoyed, why did I have to always do it. He could do it too, giving me a chance to enjoy my dinner too.
He responded to me with a very cool responds, "If you do this all the time, when are they going to learn to do it themselves." I was so angry.... but he had a point. I wanted all to go well, that I ended up fixing everything. I needed to step back for the boys to grow, and explore.
It was a small wake up call for me. I realize that my need to fix things, was making me miserable and resent my hubby for not helping me.
The next day at home. I gave Ivan an omelet to start with, as he loves eggs. I gave him a fork and a knife, and watched. He struggled, mumbled and asked for me to help him. I demonstrated to him, how to cut the omelet. And stood there beside him. After a few tries, he mastered it. When I beheld that sight, I could hear "Hallelujah" in my head. I was so please, that I could tick off something else on the list, he could feed himself independently. -yay
As I was settling all this, I snapped at my hubby who was enjoying his meal. I was so annoyed, why did I have to always do it. He could do it too, giving me a chance to enjoy my dinner too.
He responded to me with a very cool responds, "If you do this all the time, when are they going to learn to do it themselves." I was so angry.... but he had a point. I wanted all to go well, that I ended up fixing everything. I needed to step back for the boys to grow, and explore.
It was a small wake up call for me. I realize that my need to fix things, was making me miserable and resent my hubby for not helping me.
The next day at home. I gave Ivan an omelet to start with, as he loves eggs. I gave him a fork and a knife, and watched. He struggled, mumbled and asked for me to help him. I demonstrated to him, how to cut the omelet. And stood there beside him. After a few tries, he mastered it. When I beheld that sight, I could hear "Hallelujah" in my head. I was so please, that I could tick off something else on the list, he could feed himself independently. -yay
Friday, April 15, 2011
about me
I would like to introduce myself as a passionate person. Whatever I indulge in, I am passionate about. Along with passionate, I am also a perfectionist. And thankfully, now I have learnt to loosen up a little bit.
Like every little girl, I had dreams and ambitions. I wanted to teach, even from a very young age. I grew up and became a preschool teacher. I got married to my sweetheart, I met in my college days. We lived the normal, middle class, Singaporean life. The following year, we were promoted from a couple to parents. Our first born, was a bouncing baby boy. Pretty bright fellow he is. He started talking even before he could walk. And I was so proud of him, as he spoke very well (without Singlish, until much much later).
My hubby and I planned to have kids early, so that we could retire early and travel. I thought that a two year interval would be ideal. I wanted the kids to be close, as they would grow up with similar interests. (I say this because my sis and I are eight years apart, and we hardly had anything in common. The age gap was too wide.) So all went well as we planned. My second son arrived just around the time my elder son turned two. I was happy, life was going as planned. Both my hubby and I worked hard, like every other Singaporean family. Thinking that we would work very hard in our twenties and thirties and the slow down in our fourties as the boys grew. An ideal dream every middle class, Singaporean family carries. Ivan was born, and he was an adorable little angel.
I was pursuing higher education and working all at the same time. My boys were left in the care of a domestic helper, while my hubby and I were out at work. All was going fine.... until one day... my whole world overturned. It sneaked up on us slowly and eventually, blasted on our faces. Autism that it.
In this blog I will share my journey, and I will be as honest as I can be. Life changed for us the day we heard the word "autism", and has never been the same.
Like every little girl, I had dreams and ambitions. I wanted to teach, even from a very young age. I grew up and became a preschool teacher. I got married to my sweetheart, I met in my college days. We lived the normal, middle class, Singaporean life. The following year, we were promoted from a couple to parents. Our first born, was a bouncing baby boy. Pretty bright fellow he is. He started talking even before he could walk. And I was so proud of him, as he spoke very well (without Singlish, until much much later).
My hubby and I planned to have kids early, so that we could retire early and travel. I thought that a two year interval would be ideal. I wanted the kids to be close, as they would grow up with similar interests. (I say this because my sis and I are eight years apart, and we hardly had anything in common. The age gap was too wide.) So all went well as we planned. My second son arrived just around the time my elder son turned two. I was happy, life was going as planned. Both my hubby and I worked hard, like every other Singaporean family. Thinking that we would work very hard in our twenties and thirties and the slow down in our fourties as the boys grew. An ideal dream every middle class, Singaporean family carries. Ivan was born, and he was an adorable little angel.
I was pursuing higher education and working all at the same time. My boys were left in the care of a domestic helper, while my hubby and I were out at work. All was going fine.... until one day... my whole world overturned. It sneaked up on us slowly and eventually, blasted on our faces. Autism that it.
In this blog I will share my journey, and I will be as honest as I can be. Life changed for us the day we heard the word "autism", and has never been the same.
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