The Purpose of this Blog
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
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.
Friday, March 27, 2009
Wonderful welcome home
When we arrived home today, there was a very delightful surprise here to greet us. A sweet bouquet of flowers.
It might look simple to you, but to me it's absolutely perfect. I knew immediately that there was thought behind it, and I'm all about that kind of thing. I called M right away and told him we were home and that I loved the flowers. And he confirmed that I was right in thinking that he'd planned this little bouquet very carefully.
There's the rose for me.
Many of you will know why that tulip is so special. For those that don't, read this. We like Holland, and especially it's beautiful flowers.
Thursday, March 26, 2009
Words, words, and more words
She's come a long way, also, in completing her words clearly. Nose is now nose, not just "no." Sheep has the SH and a clear P on the end. Bottle is plainly two syllables with the appropriate sounds in both. We're to the stage that when she will allow those outside our house to hear her, they can actually understand her. That's pretty fun, I must say.
Her teacher at school has said that she's just talking up a storm at school the last few weeks. She was all shy the first few, so I'm pleased that she's getting comfortable enough to chat with them. Some uses are more inconsistent than others, but all of these on the list have been shown properly more than a few times. Here's what she's got so far... unfortunately, we've not been successful getting much good video yet, as she's not so cooperative at performing, but she uses them as she needs them.
- Cat: Especially when she sees them on TV or a movie. And she yells this one!
- Drum: She requests her water drums when she gets in the bath, and she has an ice cream tub that she uses for a drum as well.
- Bubbles: This has recently been a request from the PT, as Braska found them in her bag and wanted some bubble action. She also identifies them when asked.
- Nose, Ear, Hair: She prefers to identify these on bodies not her own.
- Picture: This is what she calls the camera. She says it when she grabs the camera if it's been left within reach and when she looks up to see it pointed at her.
- Movie: This is said, generally with animation, as soon as she gets in her carseat in my car. There's a DVD screen that she uses on longer trips. She seems to think they are all long enough.
- Bottle: Every time Kinlee gets a bottle (when we're away from home for a feeding), Braska has to get in on the action, come grab the end of the bottle and identify what she has found. She has a tendency to want to take it out of Kinlee's mouth, but we're working on that part. One step at a time!
- Car: One of her puzzles has a car piece, so it gets identified when she plays with it. She will answer, "What is this?" for that piece too. And sometimes when she's looking outside at the front door she'll say car when one goes by. Oh, and of course, when we go to the garage to leave, she lets me know where we're supposed to go.
- Puppy: She doesn't seem to like the word "dog" so it's always "puppy" instead.
- Sweet: This is her word for a hug lately. She'll lean in and cuddle for a second and say "Ohhhhh, sweet." I think we must have said this and not realized it. She also does this to Kinlee in the morning when she comes to say hi.
- Nice: When she pets Kinlee's head, she says, "Niiiiiiice." We have told her repeatedly to "be nice" so I guess that's where she got it.
- Bless you: When someone sneezes, including herself, she greets with this. So funny to hear.
- Wash: This is used whenever she's done with eating, or if I wipe her hands when getting into/out of the shopping cart or something.
- Bouncy: She loves this one, and it's all for Daddy. They have a knee-bouncing good time in the evening, and she hardly lets him sit down after work before she starts insisting, over and over and over... "Bouncy!!!"
- Poop: This one shocked me, but when I get her out of bed in the morning, if she has messed her diaper, *most* of the time she will tell me "Poop." It's not 100%, but it's been pretty consistent.
- Bib, Tray: When it goes on before eating, and when it comes off...she labels them each both times.
- Door: Any door, she goes to it, knocks, and says, "Door."
- TV: This is what she says sometimes when she gets in the car, instead of "movie," and she hands me the remote in the morning after breakfast and says, "TV!" (sometimes TB) as she knows it is time for Sesame Street.
- Makeup: This is what we call her Aquaphor that we use on her face (also arms and legs, but then it's "lotion" which, I know...it's confusing). Anytime she sees the container come out, she yells "makeup!" and occasionally it sounds like "nakeup" for some reason.
- Bath: If we forget to close the bathroom door, she stands at the side of the tub, knocks on it, and says, "Bath" over and over until someone removes her or complies with her request.
- Diaper: Everytime we change her, we ask, and she answers. And if she gets into the diaper bag and empties it, she labels each one as well.
- Brush: A comb or brush gets called a brush. And she will take it and attempt to comb/brush whatever hair is near. She usually tries to do her own RIGHT after I've done pigtails or something nice and neat.
- Shoes/socks: These are favorites of hers. She taps on them and labels them as we put them on her or if they are left on the floor. And if we put them both in front of her and ask her to give us one or the other, she will get it right. I love that!
- Hat: This one almost always is both a sign and spoken at the same time. And it usually comes up when Daddy shows up with one on.
- Pat pat: This one is for Kinlee. She will lay her hand on K's belly and then lift just her fingers and pat, telling us what she's doing. I think it's quite interesting that she doesn't lift her whole hand.
- Glasses: She occasionally will just touch her glasses and label them. Or when she's around Grandma or others with glasses, she'll label them and grab, but she's better about not taking them off of the person. She also says "glasses on" when we put hers on in the morning.
- Mommy: She has taken to patting me on the arm and saying it, just the last few days. She doesn't use it to request my presence yet, like from her crib or anything.
A few other fun things that we do every day are her ABCs, when I say each and she repeats them all. She's now able to give the following letter on about 6 of them. We also work on numbers 1-10 (10 is her fave), and she will do 2 and 3 when given 1 to start with. And she now has a few animals that she knows sounds for: Cow, Sheep, Cat, Bear, and Horse. She can say the word and then answer, "What's a ____ say?" with the right sound. Bear is our favorite, because she says "raaooor" with a very bored and un-scary tone....a very mild bear, for sure.
We are very pleased that she's doing so well. As most of you know, every kid is different, including kids with DS. Every kids has strengths and areas that they struggle with more. Braska's strength is her speech/communication, whereas gross motor (walking, standing) is her area of great struggle. No matter how that changes or evolves, we'll still celebrate all the accomplishments and continue to work on areas that need more help.
I hope to have video to share of some of this soon!
Wednesday, March 25, 2009
Braska: Playing at Jack's
I even let Kinlee come this time. She was pretty good and didn't get in my way too much.
Jack knows how to walk all by himself, and it is hard to keep up with him, but I try! His mommy gave me some of those cool strings of beads, and I just LOVE them!
Here's Jack smiling with Mommy. They're both pretty silly, I think!
Saturday, March 21, 2009
Braska: World DS Day and a party
We went to a party today at the new DS office. They moved so they invited everyone to come see it.
Jack and his mommy were there too, so we hung out for a while. Daddy says these pictures look like we're watching tennis. I've never seen tennis, but I thought you might get it.
And we snuck in a little smooch too!
We made pictures of our hands that they are gonna put on the walls at the new office.
Missing the point
I'm in a bit of rush...ya know, new baby, toddler, and all...so this will be relatively short.
I'm not all that sensitive about this kind of thing--questionable jokes, using the wrong words, or words in the "wrong" order--related to the disability community. I'm in the minority in many circles that I travel in due to this. I understand the outrage at the "r-word" and I know the PC way to say things, but I admit I don't really react with the fervor that many do. That's just the honest truth. So this is not me flipping out about his comment about the Special Olympics. It's more about what it may indicate. And one thing I do agree with many of my friends and acquaintances in the world of developmental disabilities... it's not just a joke. And if it hurts someone, it's worth not saying. Check out Sarah's letter and see how she feels about it. She understands more than any of us can, and she has a great perspective.
To the anonymous poster(s): Yes, we all say things we shouldn't. I have loads of things I've said and joked about that aren't very nice. I'm not at all afraid of karma. I'm a Christian and I'm a Republican (barely) and I'm FAR from perfect. If you know anyone who is either of those, or Democrat, or agnostic, or whatever, and is perfect, please let's name them and celebrate them. That is not my point. And it has nothing to do with judging or forgiveness or anything so drastic... As I said in a comment on my friend Michelle's blog today, "It's amazing to me mostly because things said in jokes with our guards down usually indicate our inner thoughts. That's the part that concerns me. Only time will tell, in this situation." My issue is that it indicates more than the surface. Mr. President is know for his communication, "openness," and has more dyed-in-the-wool followers than I've ever seen. Yet when he is kicking back and chatting about something as insignificant as bowling, this is where it goes. No, it's not the end of the world. But I fear it may be a peek at something inside, possibly subconscious. I hope I'm wrong.
To Heidi: Hey girl! You're right. Anonymous comments are allowed on the blog because many don't have logins to Blogger or the other options. And I don't mind an occasional unsigned comment, but if a person feels strongly enough to carry on a conversation and make generalizations, it does seem right to be willing to identify yourself. I think I've proven in the past that we can agree to disagree and still maintain bloggy civility.
To Jason: Dude, you rock. I'm always glad you've got our backs, especially since you guys are unconditionally adoring fans of our Braska girl. That means alot, my friend. And your second comment... right on. You GET it. Thanks!!
To the rest of you, commenters here and via email: Thanks for getting it. Thanks for knowing me well enough to know that I'm not lynching the guy, just making an observation and hoping for better things with the knowledge gained from today.
Friday, March 20, 2009
Braska: Bubbles and balls
Yesterday, my PT came to see me. I worked really hard at making my legs stronger. She made me bend over from standing up and pick things up on the floor. It was so hard! And then I climbed all the way up the stairs from Daddy's room downstairs!! Everyone was really excited! Since I did so good, I got to play bubbles. They are my favorite!
(Mommy note: Anyone want to guess what my favorite part of this pic is? Think fine motor... Isn't it funny that our Mommy brains work this way!!)
Danger, no speech writer!
Summary (In case you couldn't hear it)
BO: "I bowled a 129"
JL: "That's very good."
BO:" It's like Special Olympics or something."
Wow.
Wednesday, March 18, 2009
Exciting night!
Pardon the interruption into your regular evening, but we have something to share!!
Daddy gets the credit for this one. He had her in the bed for cuddles and snuggles, and in a matter of 15 minutes, she's got it down pat!!! She's going around now saying, "Name! Braska! (Ba-ka)"
I'm always hesitant to "brag" on her too much, for fear of offending or something to those who struggle... as that's a real thing in the world of delays...but I am so proud of this girl! More speech news soon, but I just had to throw this up and cheer for my girl!
Tuesday, March 17, 2009
Braska: Long sunday dinner
I wore a new outfit from my friend Miss Trish.
After church, we went to a place to eat. But we just sat on some seats by the door for a looooooong time with no food. It was almost all of us from Daddy's family, and all of us grandkids were there. We were pretty good even though we waited a long time. Finally we got to sit at a table. My uncles and Daddy helped me color my paper.
I ate some of Mommy's food because she had some mashed taters and gravy. It was good, so I ate a bunch of little bites. Everyone said, "Yay Braska!" That's my favorite part.
Sunday, March 15, 2009
Feed them and they will grow
When the girls were weighed on Friday, Kinlee was 9 lb 3 oz. Less than 5 weeks old, born at 7 lb 6 oz. What?!? How does that happen? Maybe that's normal to some people, but not for us. I weighed her THREE times just to be sure it was right. I can't believe she's gaining that fast. Braska was at least 2 months, closer to 3 when she got there. She was 11 lbs at her surgery at 3 months after us stuffing her with tube feeds. Then she was back to 10 lbs at 4 months, 15 lbs at 12 months.Which brings us to the next bit of info....
Braska was 22 lb 1 oz!!!!! That's crazy! This from the girl who gained only 4 lbs between her first and second birthdays. 3 months ago she was just shy of 20 lbs, now she's over 22?
I suppose it's about the intake...go figure. Kinlee is eating like a champ, though I didn't think nearly enough to gain that much. And Braska has still been eating her few tablespoons of food a couple times a day, in addition, of course, to her regular tube feeds of Pediasure. But her few tablespoons add up to some decent calories, sometimes 30% more calories in a day, so it's making a difference!
Crazy. Just amazing. But we'll take it.
Wednesday, March 11, 2009
Braska: My first nightgown
My PT showed me, when she came to visit the day before this, how to stand up at the door and see outside to the street.
Since the wind was blowing in nice, I stood there for a long time. (Mommy note: I just think this picture is too sweet...not sure why, but I love it.)
When Mommy wasn't looking, I decided to try to see what the screen felt like on my tongue. I think she caught me, though. She said I shouldn't do it because it was dirty, but I thought it was pretty fun anyway. I like weird stuff on my tongue--as long as it's not food, ya know!
Tuesday, March 10, 2009
Braska: Shopping with Sophie
Monday, March 9, 2009
Braska: Pre-Preschool Month 3
Jack and I were the last ones there today because our mommies went to get coffee while we were at school and then talked to Miss Jocelyn in the hall. She helps both Jack and me learn to talk and sign and stuff like that.
Wednesday, March 4, 2009
Braska: School stories and standing
This time Mommy took me and Kinlee in right away instead of like last week.
When I got home, I told Mommy all about the stuff we did. I was so excited! There were songs and toys and snacks, and I even made Mommy a picture!
Later when Daddy came home, I tried to practice my standing.
After a while, I just started being silly about it.
I'll get it soon, don't worry!!!