This October I’m opening up the floor to reader questions as part of my contribution to Down Syndrome Awareness Month. As long as you keep it clean, nothing is off limits – Down syndrome, cerebral palsy, birth stories, parenting, photography. What do you want to know? Find the first four Q&A posts here; three more questions with answers are below.
Often when I see folks with a disability, I tend to study them surreptitiously, but have trouble making eye contact. When I smile at them, it feels forced. How do you want strangers to respond to you and your children? Do you think your preferences are typical, and if not, how do you think the preferences of others differ?
You’d be amazed at how far a smile will take you. 🙂 There is no singular right or wrong way, and in my experience tone and body language make all the difference. I’ve developed a finely tuned radar over the years and won’t be offended if I feel someone is uncomfortable; I try to put them at ease. As long as someone is respectful and polite, I don’t mind questions – in fact, I welcome them. I learned long ago that people’s eyes are drawn to my kids like moths to a flame – best just to go with it.
I think most parents feel generally the way that I do, but not completely. I’ve heard a number of parents express dismay when people ask, “What’s wrong with her?” but that doesn’t bother me if I feel that the person is, as I said, being respectful. Sometimes “What’s wrong with her?” is said in a way that DOES rub me the wrong way, in other words. However, I understand that people aren’t programmed to say, “May I inquire about her diagnosis?” and if they are showing genuine interest, that gives me an opportunity to teach them.
Want to know a secret, though? I sometimes have the same struggle when I see someone with cerebral palsy or Down syndrome. I’m sure that sounds strange, but in my case I don’t want people to think I’m staring rudely when what I’m actually trying to do is figure out a good way to start a conversation with someone I think could be a kindred spirit.
I was wondering about Sarah Kate and school. My 4 year old son has spastic diplegia like Sarah Kate and my husband and I are starting to think about school for him. Currently Matthew is enrolled in an inclusion preschool with an aide that works with him and 4 other students throughout the day.
Sarah Kate has always done great with school, and I think a large part of it was her own doing. She was born with Star Quality and she still has it today. She has never been intimidated by crowds or strangers. She began preschool around 20 months and went two to three days a week until she turned five. It was not an inclusion preschool, but a typical private one (I should note that the same is true of the one Nathan attends now, which is not the same preschool and is not even in the same area of the state), but the school was accommodating and welcoming. Preschool put me at ease – somewhat – for regular school.
We moved two weeks before she started kindergarten so I was (understandably, I hope!) anxious about putting her not only in a new school, but in a school system that didn’t know her and in a class where she would know none of the children. Sarah Kate, however, had no fear. After Meet the Teacher, she proudly declared that I WOULD NOT need to walk her in on the first day of school, though in her excitement she forgot her mandate on the first day.
We have had a few missteps over the past four-plus years, but by and large she’s had a great experience with school. She’s fiercely independent, so although she has many girl friends, her helper each year in class has always been a boy – I think because the boys don’t try to mother her and only do what she asks them to do. The first two years it just kind of happened naturally; more recently I’ve had them note it in her 504 plan prior to placement. Although I’ve suggested a few names each year, the school hasn’t always gone along with my suggestions, though they HAVE always made sure that a boy with a similar temperament to the ones I suggested was in her class.
One thing about Sarah Kate that’s been a bit hard for me to adjust to is that she’s “famous” around town. I don’t think anyone would call me shy, but I am a natural introvert so being in the spotlight isn’t something I enjoy. Sarah Kate is always in the spotlight, though – everywhere we go there are kids and adults who know her by name. I’m not certain if it’s because of her personality or because she stands out because of being “different” (probably both). In fact, a couple of years ago my parents were in town and ran to Wal-Mart. They were talking about her in the checkout line and someone in line behind them overheard and asked if they were Sarah Kate Sligh’s grandparents. Once they confirmed that they were, she went on at length about Sarah Kate.
Like I said, Star Quality.
And finally, reader Brian wants to hear from Sarah Kate herself:
I was wondering what Sarah Kate thinks of her cerebal palsy. I have CP too and I am 22 years old. I am in my senior year of college earning my degree in accounting. When I was Sarah Kate’s age I hated having cerebal palsy. I could not play football with the other kids my age. But I then started playing the guitar and I love that. I was probably 17 when I started really embracing that CP is just one small part of me. Also I was wondering what kind of relationship Sarah Kate and Nathan have. My older brother has Down Syndrome. We are close. He is 27 and works for a hardware store. When we were younger I thought we had a pretty typical brother relationship compared to my friends.
SARAH KATE on CP: I think of CP as a special, unique characteristic that I have that not many people have. It doesn’t bother me, and it doesn’t bother my friends and everybody just likes me for who I am. Sometimes I even forget that I wear braces because of my cerebral palsy because I don’t feel bothered or uncomfortable. It doesn’t affect my feelings about myself or anything like that. I still try to do whatever I can even with my cerebral palsy and I try to work hard so I can do stuff that I probably would never do with the CP.
SARAH KATE on Nathan: Well, first of all, I think of Nathan as a little tiny me that needs help just like I do sometimes. I take good care of him and I play with him because it always makes me happy and I play with him to make him feel special. I try to teach him stuff like signing and how to say words sometimes. I just want him to learn and feel like he’s a normal kid.
And a side note from Mom: We tried Sarah Kate in guitar lessons awhile back, and although she liked it okay, she likes softball better. 🙂
Next Up: Delays, Heart Surgery, and How to Start a Blog
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