Dear Sook Yee sent me an poster and asked me if I was interested in an event. It's about Children with Disabilities.I thought about how much progress there is since Marisa's days . Seems like we are heading in the right direction. More parents are speaking out and voicing their challenges and it's wonderful that's it's being heard. I pray that our kids who are disable won't feel so left out and that they will be included in what we call 'life'.
How was it I hardly heard of such events or support then.? I questioned myself and realised was it because I was cooped up in my shell with Marisa in our own world OR I never fought hard enough for the cause OR is it because her 'no hope' illness and lack of visits to the doctors is the cause for our lack of knowledge. All I know is that having a child with a disability was a challenge mentally, physically and financially. I wished there was more support but unfortunately at that time I didn't feel we had much.
Seeing your child disabled is very disheartening, The inability to be control of oneself just sucks up their confidence to be a whole person as they are considered less.
Marisa didn't have much movement from the beginning of the illness.The disability was how we monitored her regression. It started with her large motor movements. It wasn't too bad when she was she still a toddler and was on the stroller. It was kind of acceptable as she wasn't obviously disabled. As she grew older and we had to move her to a disabled child stroller that's when the stares and glares and whispers started. It bothered me at first, very much so but I had to teach myself to ignore those stares. I couldn't get myself upset over things that didn't matter. I even had a incident when a lady came up to me and was questioning me about why Marisa wasn't walking and how I shouldn't allow her to be lazy and even told Marisa that she should get up and walk. I was mad . I assumed she was ignorant and just lacked education and empathy. I softly whispered to her that told her that Marisa has an illness and she can't walk. I don't think she heard me as she continued to lecture me and Marisa. I quickly excused myself , walked off and was quietly fuming. That was Marisa' first experience and I had to explain to her about how the lady didn't know she had an illness and it not her fault. At that point , Marisa already felt less than everyone else and I had the task of making sure that she didn't FEEL that way.
Nothing about her condition was easy. Putting her into school, getting her school and wanting her to live life in normalcy felt like impossible because it wasn't easy, It was a long battle and as she grew older , it became harder. As she deterioroarated she became more recluse and kept to herself . Her family and cousins were her only friends. Going to school was harder, going out was harder and there were just so many limitations. We couldn't take her to mamaks or stalls without difficulty. We adapted and only brought her to disable friendly places which was malls. Even then I remember arguing with the guard who didn't allow us to park at the disable parking spot because he insisted that the driver had to be disable in order to park . I argued that we had the disabled parking sticker , and that if the person was diabled how can they drive? he didn't budge and I had to park far from the entrance in a narrow parking spot where it was difficult to help get Marisa out of the car. These little incidences had an impact on Marisa because she refused to go to the mall after that and she had to see her mum turn into a screeching witch. Poor girl.
Being disable is not choice.I spent years watching Marisa living with it and tried to make it as comfortable as possible for her. We must a conscious effort to make it easier for them. Just because they are disabled, doesn't make them less. Give them more. Love them more. All is required is lots of compassion, kindness , a smile and a hug. Marisa preferred to hide. She was an introvert who was happier to live in her own world. I on the other hand wished more for her. I wished she had more disabled friends as herself, I wished she was more emotionally independent. I wished she had the best of life one could possibly have. That's my wish. I always feel that I've not done enough for her. It's a mum thing. She was not me and I had to respect and that a step back and allow to choose and be the person she chooses to be. I'm happy that there's more awareness now. The acknowledgement of our special kids who needs much much more.
Sook Yee, hats off to you for fighting for all the special kids and especially Branden.He is what he is because you are what you are. Always know that both of you are absolutely amazing.
How was it I hardly heard of such events or support then.? I questioned myself and realised was it because I was cooped up in my shell with Marisa in our own world OR I never fought hard enough for the cause OR is it because her 'no hope' illness and lack of visits to the doctors is the cause for our lack of knowledge. All I know is that having a child with a disability was a challenge mentally, physically and financially. I wished there was more support but unfortunately at that time I didn't feel we had much.
Seeing your child disabled is very disheartening, The inability to be control of oneself just sucks up their confidence to be a whole person as they are considered less.
Marisa didn't have much movement from the beginning of the illness.The disability was how we monitored her regression. It started with her large motor movements. It wasn't too bad when she was she still a toddler and was on the stroller. It was kind of acceptable as she wasn't obviously disabled. As she grew older and we had to move her to a disabled child stroller that's when the stares and glares and whispers started. It bothered me at first, very much so but I had to teach myself to ignore those stares. I couldn't get myself upset over things that didn't matter. I even had a incident when a lady came up to me and was questioning me about why Marisa wasn't walking and how I shouldn't allow her to be lazy and even told Marisa that she should get up and walk. I was mad . I assumed she was ignorant and just lacked education and empathy. I softly whispered to her that told her that Marisa has an illness and she can't walk. I don't think she heard me as she continued to lecture me and Marisa. I quickly excused myself , walked off and was quietly fuming. That was Marisa' first experience and I had to explain to her about how the lady didn't know she had an illness and it not her fault. At that point , Marisa already felt less than everyone else and I had the task of making sure that she didn't FEEL that way.
Nothing about her condition was easy. Putting her into school, getting her school and wanting her to live life in normalcy felt like impossible because it wasn't easy, It was a long battle and as she grew older , it became harder. As she deterioroarated she became more recluse and kept to herself . Her family and cousins were her only friends. Going to school was harder, going out was harder and there were just so many limitations. We couldn't take her to mamaks or stalls without difficulty. We adapted and only brought her to disable friendly places which was malls. Even then I remember arguing with the guard who didn't allow us to park at the disable parking spot because he insisted that the driver had to be disable in order to park . I argued that we had the disabled parking sticker , and that if the person was diabled how can they drive? he didn't budge and I had to park far from the entrance in a narrow parking spot where it was difficult to help get Marisa out of the car. These little incidences had an impact on Marisa because she refused to go to the mall after that and she had to see her mum turn into a screeching witch. Poor girl.
Being disable is not choice.I spent years watching Marisa living with it and tried to make it as comfortable as possible for her. We must a conscious effort to make it easier for them. Just because they are disabled, doesn't make them less. Give them more. Love them more. All is required is lots of compassion, kindness , a smile and a hug. Marisa preferred to hide. She was an introvert who was happier to live in her own world. I on the other hand wished more for her. I wished she had more disabled friends as herself, I wished she was more emotionally independent. I wished she had the best of life one could possibly have. That's my wish. I always feel that I've not done enough for her. It's a mum thing. She was not me and I had to respect and that a step back and allow to choose and be the person she chooses to be. I'm happy that there's more awareness now. The acknowledgement of our special kids who needs much much more.
Sook Yee, hats off to you for fighting for all the special kids and especially Branden.He is what he is because you are what you are. Always know that both of you are absolutely amazing.