The Purpose of this Blog

The goal of this blog is to provide education and bring about higher awareness about Down syndrome. It is to share that life with Down syndrome (DS) is not scary, horrible, or to be feared.

My experience comes from raising my daughter, Nebraska Larae (Braska), born November 2006 with Down syndrome.
The posts on this blog are related in some way to life with DS or disability, and they are reposted here from my other family blogs. There are links to those blogs in the margin on the right side of this blog if you would like to visit them directly.

Thank you for coming by.

Saturday, March 28, 2009

Hindsight: Hints of DS, Part 1

When Braska was born, we were shocked about the news that she had Down syndrome. There had been an abnormal blood test in the second trimester, but combined with the other information from ultrasounds and such, it was decided that the risk was not that much different than my normal risk for age 32. We did not have an amnio because the results would not have changed our course, regardless of what they told us, and I am terrified of needles and would never opt for an elective procedure that uses a big one and invades the baby's personal space. No way. We dismissed the whole thing, for the most part, although I do remember praying after that point that she would not have it. I felt silly for doing so because I was sure she didn't. This is just one more example in my life of how God is way smarter than me. He knew we needed her, just as she is. It took me a while to see that, admittedly, but I got there.

I never planned to have kids, for as long as I can remember. The idea of experiencing birth from this side was one that only brought me to make a scrunched up face and say, "No, thank you." I did not have this big desire to have children, not even a small one. Just didn't. I'm the oldest of six kids, and the youngest is 22 years younger than I am (yes, same parents), so I think I just had my fill. There were times I remember thinking that one reason I didn't want to have any children is because I "knew" I could not handle being given a child with special needs, and I just felt like my chances were high. There's no science for that. I had no reason to think that. But it was there, more than once, that conversation with myself in my head somewhere.

When I graduated from college in 1995, I went to Singapore for the summer. It was a great trip. It's a wonderful place that I desperately hope to return to. I had high hopes of coming back, finding a job, and getting on with my adult life. Upon return, I parked myself in good old Dent County, where the parents lived, simply because I didn't have anywhere else to go at the time. I first worked for a dentist, as a chair-side assistant, and I found quickly that the clinical part of healthcare is not for me. Six weeks later, I thanked my friend, the dentist, for the opportunity, but respectfully resigned. The school in town was the next obvious choice...substitute teaching. It sounded like a good deal, some days you work, some you don't, free time here and there, so what's not to like? Little did I know that nonchalant choice to get on the sub list would be found so pivotal in later days.

At first, I had random placements in every school in town, filling in for Kindergarten through 12th grade at different times. I had elementary art for a few days, which was quite exhausting. There was the junior high, where I spent alot of time, and it seemed to be pretty enjoyable. I also did alot of subbing in the high school, where my brother had graduated the year before as a basketball star. My last name then was one that could be altered by childish minds to an unfavorable point, so though most of them knew my last name, I went by "Miss Kay." To this day, I see kids--well, they're adults with their own kids now--in town that I had in class and they call me Miss Kay. It did not take long for me to find very regular placements, probably because I was always available.

I began to have a reputation for dealing well with the "difficult classes," which often could describe most any of the junior high and high school. Goes with the teenage years, I think. It didn't bother me. I tend to be quite strict, but I'm reasonable, and I would start almost every class with the same offer. If they cooperated and did what was asked, there would be time at the end of the period for them to chill out and talk or whatever. Very few teachers left plans that truly filled the time period, although as I was there longer, if the teacher knew I was the sub, they started to leave me "real" stuff instead of just movies. It was nice to be respected by the teachers and trusted to actually teach, I must say. There was always time to kill before the bell, and I think the kids appreciated that I kept my end of the deal, so they behaved.

Being known for handling the challenging situations brings, well, challenges, of course. I began to get placements in long-term leaves. Maternity leaves, medical leaves, etc. I had 6 weeks in 7th grade at one of the rural schools on two different occasions. There was a block of 3 weeks in 2nd grade, then another of 4 weeks in 8th grade. Since my education is in music, I often was put in the high school music/band slot, and there's no challenge like that. But there came a time when they called me to the office in the junior high to ask me a tough question. "Would you be willing to fill in for Mrs. P?" I didn't know what to say, and I felt very unsure that I could do it. Mrs. P was the special education teacher.

For a few days, I went when she was there, to acquaint myself with the students and the process. Mrs. P was a friend, she attended the same church, and I liked her very much. We got along well, and I thought she did a great job with the kids. My worries about the class diminished quickly, and my first day of having the class without her went well. There were several times that I subbed for her, and I really did enjoy those days alot. Soon after, the high school principal called me and asked if I'd consider taking some days in the high school special education class. I told him that would be fine, but I'd like to sit in as I did in the junior high to get a feel for how it went before the teacher was not there. Of course, he agreed.

It was amazing to me, in both the high school and the junior high, how attached the students were to their teachers. They could NOT tell me enough how great Mrs. P and Mrs. B were. They just loved having a new face in the room, and they all wanted to show me their work and what they could do. The teachers were far more than someone there to educate them, they were family to these kids, and in some cases, I found they were the best family they had. As I spent time learning how the high school class was organized and run, I learned to appreciate these students for the effort they put forth, FAR more than their "typical" counterparts ever exhibited. These kids tried and tried and tried, and when they succeeded in any small thing, there was a celebration, and I loved that. The high school class knew that Mrs. B was going to leave, she was sick, they said. The last day she was there, they cried and spent alot of time giving hugs and making cards for her to take and writing her notes for her to read while she was gone. That was on Friday, and on Monday I took over.

What these kids didn't know was that Mrs. B had cancer, and that would be the last time they'd see her. I was their teacher for the entire semester, and in the last couple weeks, as I remember, we got the news that she was quite ill, then that she had passed away. I will never in my life forget that day, when the students were told. The pain on their faces, the wide range of reactions that varied from one student to the next, the tears and more tears and more tears. Many of them didn't stay the whole day, parents came to get them, or at least to spend time with them for a little while. Mrs. B was an integral part of their lives, and she was gone. Some did not quite comprehend, it was clear. But many did, and for them, some of whom had been with her for 4 or even 5 years, the pain was too much. I've not had much in my life that has been more emotionally draining than those days following her death, but those kids were worth it.

There were many diagnoses in the class, some were very vague, and some were specific. There were varying levels of functional ability, as a few students would work on math and english, but others still worked on more basic things like which coin was worth which amount and such. I think there were 6 or 7 students on most days, as there were almost always absences for one reason or another. More than one of the students had a less-than-desirable home life, and that often brought more challenges to the classroom. But I feel like I helped maintain a safe place for them, one that they looked forward to every day, and for that one semester, I could give them reasons to smile and laugh during the day at school. Mrs. B had done the same, even so much more, and I tried hard to continue her wonderful example.

There was one student, BP, that had Down syndrome. He was one of my favorites, I admit. His smile was eager and his charm was undeniable. He was a pal of many in the high school, never was lacking for a story of who was with who and what she said about him and where the big game was going to be this weekend. It was sometimes hard to understand his speech, but he always got his point across. As I sit here now, I can still remember how he would say, "Miss Kay!?!" with feigned shock when I would ask him every Monday if he had a date the previous weekend. His sister had been in school with my brother, and I knew who she was. She later sang in a group that I had put together. He liked to tell me what J was up to, what crazy thing her boyfriend had done, and how much he liked what his mom had made for dinner on Sunday.

This week, while I've been at my parents' house, I've had occasion to run into a few former students from the junior high and high school, as well as some fellow teachers from back in those days. I'm not always very good at seeing people who I knew "back then" for reasons that will have to wait for another day, but I do usually enjoy seeing the kids that remember me and come up to say, "Hi Miss Kay!" One of the students that was in class with BP attends the same church as my parents, and I see her each time I'm here. She often writes letters and sends cards in the mail for Braska and now for Kinlee too. She always wants to be sure to have new pictures of the girls on her cell phone, and I try to remember to bring new wallet prints for her as well. When I saw her Wednesday evening this week, I gave her new prints, and she was quite excited. She sat behind us in church, and Braska warmed up to her and told her "Hi" while waving about 50 times.

I've not seen BP for many, many years. But my parents did see him recently, and he remembered me. He saw pictures of Braska and Kinlee and made sure to show his mom. That makes me happy. I don't know how much he remembers about what happened each day in school, but he has a positive response to hearing my name, and I feel like that's an accomplishment after dealing with such tough times through that semester.

I would be hard pressed to specify things that I learned through these students that I use on a daily basis, but I feel sure it was one of many ways that God was preparing me, years ahead of time, for accepting and adjusting to the news that would shock me. I know I learned that they are wonderful human beings, as worthy of life and value as anyone, and that they feel and love and hurt just like any other person. Those kids will never know or comprehend how their path affected mine, but I'm appreciative nontheless.

Thank God that He knows better than I do, that he chose to place me there at that time, and that I can continue the journey with my "extra" precious princess.

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