Before Aliza was born the Neonatologist, who was also a Geneticist, meet with us and wanted to talk about our decision to continue with my pregnancy. She talked to us about the genetic differences in individuals with Down syndrome and then also about the characteristics of people with Down syndrome. She told us of many of the medical complications that are more common in people with Down syndrome and we talked about the cognitive and educational challenges for people with Down syndrome. This doctor told us that on this journey there would be many people who would say some "very stupid things" and we would just have to learn to let them roll off our backs because most people (joe public) were not sensitive to the needs of people with Down syndrome.
As I sat there listening to the doctor I was 22 weeks pregnant with my first child. We were still in shock at the diagnosis and completely unaware of what our future would hold. The doctor however seemed to be able to predict the future for our unborn child. According to the doctor this child would be mentally retarded and would also depend on her parents for her care for the rest of her life. She would likely be able to attend school for kids with special needs, but would need assistance with all aspects of her education. This was going to be a very challenging journey for us as a couple. Eventually, she may learn how to count change, and we may be able to train her where to go to get a bus for her job (because she would never be able to drive) but she would never be able to problem solve. So if her bus did not come, she would not know what to do and would not be able to figure out how to get home or to another bus.
In disbelief at this conversation, both Tom and I looked at each other, convinced that this would not be the outcome for our child. We stood up, and Tom stuck out his hand and said to the omniscient doctor, "Congratulations on being the first person in our lives to say something "very stupid" about our daughter." We left the office and never saw the doctor again. It was at this point that we committed to each other that we were going to be advocates for our child and not allow her to be dismissed. She was a person with the potential to do anything, she was not even born yet! I think as she grows older there is a part of me that is thankful for this doctor. I believe her impression of people with Down syndrome as individuals without the ability to problem solve or to be independent purposeful adults has helped us to encourage these characteristics in Aliza. She is a very strong willed individual who shown us that she can problem solve at the age of 6 and hopefully this ability will grow stronger as she grows older.
At the age of 4 months old we went to the hospital to have blood work completed for Aliza. She was sitting on my lap in the big chair. When the lab tech came to draw Aliza's blood she looked at her, then at me and said, "Where'd you get her from?" in a somewhat southern accent. I was very confused and looked at Tom, then looked back at the tech and said, "What do you mean?" She then said, "Like where did you adopt her from, China, Russia, where is she from?" I know my eyes were as big as they could be and my jaw needed to be picked up off the ground, but I said to this very experienced lab tech, "I birthed her!" The technician realized her mistake immediately, and it was one of those open mouth, insert foot moments. She just said, "Oh." She knew that she could not justify her mistake and it was better left alone. The remaining appointment was in silence, but it was better that way because Tom and I could hardly contain ourselves. We laughed for days about the incident and "Where'd you get her from" has become one of those things just between us that always puts a smile on our face.
When Aliza was very young we found it difficult to go into public places because she seemed to get so much attention from others. We wondered if all children get this much attention, or was it just our child. Was it because she had Down syndrome, or did she have a way of drawing people in? We don't know, but I do know that our other two children never received the attention that Aliza received as an infant.
For example when Aliza was little I could not go to the grocery store or Target without at least one complete stranger coming up to her and giving her a kiss or hug and calling her an "Angel", commenting on how loving and pleasant people with Down syndrome are and how blessed we are to have her. For some reason children with Down syndrome are perceived as "Angels" and thought to be always happy. Whatever other peoples beliefs about "Angels" may be, I can say for sure that Aliza is not always my vision of an "Angel". I would like to invite these people in to my home to see how the "Angel" screams when having her hair brushed, or when she was younger would scratch or bite her siblings because she did not have the words to communicate with them. Aliza was a wonderful baby and toddler and is a great 6 year old girl. But "Angel" she is not (at least not all the time).
She is and always has been a determined little girl who has had tantrums and fits, dislikes brushing her teeth, enjoys picking on her brother and being pesky. There are people that her intuition tells her not to trust and she does not feel comfortable giving hugs and kisses to strangers. (Can you believe that some complete strangers will actually ask her for a hug or kiss!) She is not different than any other 6 year old girl. We work to teach her boundaries and hope that others respect that she has boundaries just like anyone else.So the next time you see a person with Down syndrome, please respect their space and their right to misbehave and simply be a child (or adult) as you would any other person. And by the way, we are blessed to have Aliza in our lives, not because she has Down syndrome, but because she is our daughter.
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