Before I was married, had children, or any responsibility in life, I worked a part time job at a group home for Developmentally disabled kids. We had three autistic kids, two with mental retardation as well, and one with downs syndrome. I actually met my children’s mother working at this group home, she worked there full time. We both used to talk about how autistic children were always the most amazing of the DD kids. It was so amazing to watch them interact with the world. I was already big into autism awareness long before Holden was born. I guess it was one of life’s ironies that we both worked with DD kids, and in fact Holden’s mom still does this kind of care giving work. There were times when I arrogantly felt like I knew what the whole autism experience was like. I believed that I “understood” more then other people about the world of autism. I can now tell you that I didn’t have a clue!
When I worked in the group home, we took the kids out on outings. We have all come across these outings at the mall, the theatre, parks, etc. As a care giver on an outing, you got used to the looks people gave the kids, especially the more severely disabled kids that stemmed constantly. You got used to the family members who would visit, and have no idea how to deal with their own child, sibling, or grandchild. Watching them look to us for help when something triggered a melt down. A look of pain in their eyes, that they didn’t have the tools to associate with their own flesh and blood. I arrogantly thought I understood the pain they felt, while I mistook the embarrassment in there eyes, to be the embarrassment of not being able to deal with their own loved one, not embarrassment on their loved ones part. I never even thought about what our clients did while they were at school, or the fact that they needed someone to advocate for them. I never knew that there were such things as IEP’s, triennials, services, assessments, private therapies, and that regional centers did more then just inspect us way too infrequently.
The reality of it, is that I didn’t know anything! When you are on an outing with a group of DD kids for work, what you have to get over, is your own inhibitions about having so much attention drawn in your direction. My thoughts in that role were of myself. I felt that everyone was looking at us, and talking about us. I felt that I was part of us, and that meant they were talking about me. Over time, as a care giver you grow numb to the looks, the stares, the comments you over hear. As a parent you never become numb to it! The pain in watching your child be so completely miss understood. I live paycheck to paycheck. I try to shop while the boys are in school, but when the paycheck comes, and the refrigerator is empty, I have to shop, even with the kids. On one of these occasion when I was first dealing with being a single parent, Holden decided he had to have something, right as we walked into the store. It was expensive, and I couldn’t afford it just to make him happy, so I told him no. He began to melt down, right there in the store. We were out of food, and I had no choice but to spend the next twenty minutes shopping with Holden having a full on melt down. Poor Zane was uncomfortable with everyone watching us, and It was no fun for myself either. The worst part was at check out, he was still screaming and crying, but now knowing we were leaving the store soon, he was really going off. I was trying to self check, with Zane helping me as best he could, while holding a kicking and screaming Holden. I think the worst looks were the people smiling, as if to say, I know how you feel, I have kids too. Guess what, you don’t. I know now that I could never understand what someone else goes through on any level, for any child, with or without disabilities. I know that, because I know nobody can know what I felt that day. As soon as Holden got in the car, he was fine. Zane and I were completely emotionally drained, I was shaking all over, and was thinking there was no way I could keep doing this. I felt, without a doubt, that I had just gotten as close to an emotional break down as I had ever been. I can’t even begin to explain the feeling of being alone I felt that day.
Things are much different now. I have learned so much, and we very seldom have those melt downs. I am naturally someone who does not like attention drawn to myself, nor does Zane (negative attention anyway) , but we are both learning to deal with the attention that is drawn to us. I have learned to ignore those who stare at the way I hold Holden’s wrist when we are out and about, because they have never had to run in the street after their son, while cars are heading right for him. I don’t care how much I inconvenience people with my safety nets, because it is my child, not theirs, who’s life could literally depend on those safety nets I put up. I won’t even go into the political aspects of the school district, at least not in this post. The one thing that still pains me the most, is all the friends and family, that so willingly comment on how they don’t know how I do it, but never even try to get to know Holden. If you don’t understand the disability, you can never know Holden, because you have to be able to see around, past, over, under, and every which way around the disability, to catch glimpses of Holden, and piece those glimpses together over time. That’s what autism awareness, this blog, and all those advocating for autism is about, finding the children intertwined with this disability. Unfortunately for Holden, and a hell of a lot of other kids and adults, all most people will ever see is the disability. Like their slogan says “Autism SPEAKS, It’s time to listen.”
When I worked in the group home, we took the kids out on outings. We have all come across these outings at the mall, the theatre, parks, etc. As a care giver on an outing, you got used to the looks people gave the kids, especially the more severely disabled kids that stemmed constantly. You got used to the family members who would visit, and have no idea how to deal with their own child, sibling, or grandchild. Watching them look to us for help when something triggered a melt down. A look of pain in their eyes, that they didn’t have the tools to associate with their own flesh and blood. I arrogantly thought I understood the pain they felt, while I mistook the embarrassment in there eyes, to be the embarrassment of not being able to deal with their own loved one, not embarrassment on their loved ones part. I never even thought about what our clients did while they were at school, or the fact that they needed someone to advocate for them. I never knew that there were such things as IEP’s, triennials, services, assessments, private therapies, and that regional centers did more then just inspect us way too infrequently.
The reality of it, is that I didn’t know anything! When you are on an outing with a group of DD kids for work, what you have to get over, is your own inhibitions about having so much attention drawn in your direction. My thoughts in that role were of myself. I felt that everyone was looking at us, and talking about us. I felt that I was part of us, and that meant they were talking about me. Over time, as a care giver you grow numb to the looks, the stares, the comments you over hear. As a parent you never become numb to it! The pain in watching your child be so completely miss understood. I live paycheck to paycheck. I try to shop while the boys are in school, but when the paycheck comes, and the refrigerator is empty, I have to shop, even with the kids. On one of these occasion when I was first dealing with being a single parent, Holden decided he had to have something, right as we walked into the store. It was expensive, and I couldn’t afford it just to make him happy, so I told him no. He began to melt down, right there in the store. We were out of food, and I had no choice but to spend the next twenty minutes shopping with Holden having a full on melt down. Poor Zane was uncomfortable with everyone watching us, and It was no fun for myself either. The worst part was at check out, he was still screaming and crying, but now knowing we were leaving the store soon, he was really going off. I was trying to self check, with Zane helping me as best he could, while holding a kicking and screaming Holden. I think the worst looks were the people smiling, as if to say, I know how you feel, I have kids too. Guess what, you don’t. I know now that I could never understand what someone else goes through on any level, for any child, with or without disabilities. I know that, because I know nobody can know what I felt that day. As soon as Holden got in the car, he was fine. Zane and I were completely emotionally drained, I was shaking all over, and was thinking there was no way I could keep doing this. I felt, without a doubt, that I had just gotten as close to an emotional break down as I had ever been. I can’t even begin to explain the feeling of being alone I felt that day.
Things are much different now. I have learned so much, and we very seldom have those melt downs. I am naturally someone who does not like attention drawn to myself, nor does Zane (negative attention anyway) , but we are both learning to deal with the attention that is drawn to us. I have learned to ignore those who stare at the way I hold Holden’s wrist when we are out and about, because they have never had to run in the street after their son, while cars are heading right for him. I don’t care how much I inconvenience people with my safety nets, because it is my child, not theirs, who’s life could literally depend on those safety nets I put up. I won’t even go into the political aspects of the school district, at least not in this post. The one thing that still pains me the most, is all the friends and family, that so willingly comment on how they don’t know how I do it, but never even try to get to know Holden. If you don’t understand the disability, you can never know Holden, because you have to be able to see around, past, over, under, and every which way around the disability, to catch glimpses of Holden, and piece those glimpses together over time. That’s what autism awareness, this blog, and all those advocating for autism is about, finding the children intertwined with this disability. Unfortunately for Holden, and a hell of a lot of other kids and adults, all most people will ever see is the disability. Like their slogan says “Autism SPEAKS, It’s time to listen.”
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