What Ryan and a few others have taught me.
If one were to judge Ryan based solely on outward appearances or prevailing stereotypes about Down syndrome they might believe he is stubborn, loves music, is constantly happy, is feeble minded, and is unable to achieve independence in activities of daily living. I am sure I could easily add to this list of stereotypes and you could too. If you have a child with Down syndrome you have had an experience where well meaning people, complete strangers, often feel compelled to use one of them when they refer to your child. The most popular comment seems to be a rendition of "You are so blessed. Downs children are so sweet and happy." Most of the time I refrain from saying anything more that affirming their comment and smiling. If I am feeling talkative I might simply add something like "Oh, he's a hand full like any other kid. Don't let him fool you." I refrain because I am afraid that if I get started I won't stop and I'll trap some poor soul and they'll have to listen to me give them a lecture about developmental disabilities and how each person is an individual and has characteristics unique to them.
See, before Ryan, before children and before I had given marriage a second thought; I worked weekends at Chivers Group Home in Union City, TN This was even before I had taken Human Growth and Development and learned the definition of Down Syndrome and a textbook of other information about mental retardation, genetic disorders and typical development. In the early 90s Chivers had eight women residents, all of them had developmental disabilities and I believe two of the ladies had Down syndrome-- Kathleen and Laurie. I enjoyed working there and if the truth be told that's where I learned my first lesson in "you can't judge a book by its cover." I took an immediate liking to Kathleen. She was a feisty woman in her 40s. She had limited speech, but what she could say she meant. If she didn't agree with you she'd tell you to "Kiss my ass." She'd hate you one second and then try to charm you the next.
I must have worked at the group home for two years or more and during that time I got to know the ladies fairly well. I also met several men that lived in other group homes in the area. The cover of each of their books would have told a sad story. Most of them were functioning on the level of a two to three year old and had very little family support. I don't remember Kathleen ever going home for a holiday. Some of the ladies had even been placed in the group home because of abusive situations at home. Home to them was Chivers and it or some place like it would continue to be their home forever. I have no doubt that many of the ladies I worked with back then are still there.
I know this to be true and not just a memory I have created to make me feel good about myself, but I was able to see Kathleen, Laurie and all the other ladies as individuals. I believe this happened because I went into the job without any pre-conceived notions and with very little knowledge about their disabilities. I didn't identify each woman first with a diagnosis. I never said, "Oh, there's Kathleen and she has Down syndrome and that means she's stubborn and happy all the time." She was just Kathleen; this mean, little woman that would cuss at you in Wal-mart if you didn't buy her Modern Bride magazine. I was able to put everything else aside and see her uniqueness.
It wasn't that easy when I had Ryan, because by that time I had knowledge, aka-book learnin', and ironically work experience at Chivers. I was an adult and I was looking at it from a different perspective. I was now looking at it from a parent's perspective. When they told me Ryan's diagnosis I immediately had flashbacks to Chivers and it scared me to death. All that's fine when it's your part-time, college job, but it's not fine when you think about it for your son. I'd also taken a class about mental retardation in graduate school. All I could remember were all the scary pictures taken when institutionalization was the norm and every negative fact and figure. Intellectually I knew there was a brighter side to Down syndrome, but initially all I could see was the doom and gloom.
It didn't take long for Ryan to remind me of a lesson that I had learned years earlier at Chivers. You know, the one I mentioned earlier: "You can't judge a book by its cover." Ryan has solidified this knowledge in me and I won't soon forget it. Almost everyday he does something that amazes me. Like today, I took off that ugly, Velcro shoe they told me to wear after surgery. I was hobbling around the kitchen and Ryan walked up to me with the ugly shoe and said, "Mommy. Shoe." and as he was trying to put it on my foot he said, "Here." I believe he was trying to say. "You need to wear this and I am not going to take no for an answer."
If one were to judge Ryan based solely on outward appearances or prevailing stereotypes about Down syndrome they might believe he is stubborn, loves music, is constantly happy, is feeble minded, and is unable to achieve independence in activities of daily living. I am sure I could easily add to this list of stereotypes and you could too. If you have a child with Down syndrome you have had an experience where well meaning people, complete strangers, often feel compelled to use one of them when they refer to your child. The most popular comment seems to be a rendition of "You are so blessed. Downs children are so sweet and happy." Most of the time I refrain from saying anything more that affirming their comment and smiling. If I am feeling talkative I might simply add something like "Oh, he's a hand full like any other kid. Don't let him fool you." I refrain because I am afraid that if I get started I won't stop and I'll trap some poor soul and they'll have to listen to me give them a lecture about developmental disabilities and how each person is an individual and has characteristics unique to them.
See, before Ryan, before children and before I had given marriage a second thought; I worked weekends at Chivers Group Home in Union City, TN This was even before I had taken Human Growth and Development and learned the definition of Down Syndrome and a textbook of other information about mental retardation, genetic disorders and typical development. In the early 90s Chivers had eight women residents, all of them had developmental disabilities and I believe two of the ladies had Down syndrome-- Kathleen and Laurie. I enjoyed working there and if the truth be told that's where I learned my first lesson in "you can't judge a book by its cover." I took an immediate liking to Kathleen. She was a feisty woman in her 40s. She had limited speech, but what she could say she meant. If she didn't agree with you she'd tell you to "Kiss my ass." She'd hate you one second and then try to charm you the next.
I must have worked at the group home for two years or more and during that time I got to know the ladies fairly well. I also met several men that lived in other group homes in the area. The cover of each of their books would have told a sad story. Most of them were functioning on the level of a two to three year old and had very little family support. I don't remember Kathleen ever going home for a holiday. Some of the ladies had even been placed in the group home because of abusive situations at home. Home to them was Chivers and it or some place like it would continue to be their home forever. I have no doubt that many of the ladies I worked with back then are still there.
I know this to be true and not just a memory I have created to make me feel good about myself, but I was able to see Kathleen, Laurie and all the other ladies as individuals. I believe this happened because I went into the job without any pre-conceived notions and with very little knowledge about their disabilities. I didn't identify each woman first with a diagnosis. I never said, "Oh, there's Kathleen and she has Down syndrome and that means she's stubborn and happy all the time." She was just Kathleen; this mean, little woman that would cuss at you in Wal-mart if you didn't buy her Modern Bride magazine. I was able to put everything else aside and see her uniqueness.
It wasn't that easy when I had Ryan, because by that time I had knowledge, aka-book learnin', and ironically work experience at Chivers. I was an adult and I was looking at it from a different perspective. I was now looking at it from a parent's perspective. When they told me Ryan's diagnosis I immediately had flashbacks to Chivers and it scared me to death. All that's fine when it's your part-time, college job, but it's not fine when you think about it for your son. I'd also taken a class about mental retardation in graduate school. All I could remember were all the scary pictures taken when institutionalization was the norm and every negative fact and figure. Intellectually I knew there was a brighter side to Down syndrome, but initially all I could see was the doom and gloom.
It didn't take long for Ryan to remind me of a lesson that I had learned years earlier at Chivers. You know, the one I mentioned earlier: "You can't judge a book by its cover." Ryan has solidified this knowledge in me and I won't soon forget it. Almost everyday he does something that amazes me. Like today, I took off that ugly, Velcro shoe they told me to wear after surgery. I was hobbling around the kitchen and Ryan walked up to me with the ugly shoe and said, "Mommy. Shoe." and as he was trying to put it on my foot he said, "Here." I believe he was trying to say. "You need to wear this and I am not going to take no for an answer."
I just feel like he is so engaged in what is going on with the entire family and there's no way to "pull one over on him." He sees the big picture.It took me days to respond to being tagged by Anne, and I haven't forgotten that I also have to share what I wish for Ryan....
I wish Ryan to be happy. I try to incorporate this simple statement into all of the big decision we have to make for him. Choice A or Choice B. Will Ryan be happy with one over the other? Either? Neither? Yeah, it's that simple. I want Ryan to be happy.
I am tagging Colleen over at Wine Please
One, I love the name Colleen two, I love wine and three, I enjoyed reading her post about breastfeeding.
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