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.
Showing posts with label diagnosis. Show all posts
Showing posts with label diagnosis. Show all posts

Thursday, July 29, 2010

I’ve come a long way, baby

I posted this on the iVillage DS board yesterday, and though it uses pictures I’ve posted recently here and on Braska’s blog, I thought I’d repost it here. Because sometimes I forget just how blessed I am…

Lately, my attitude-filled toddler is not wanting to cooperate with the dozens of pictures that I take every day.  So I get a lot of unusable pictures.  BUT her dad captured one on Sunday that made me stop and really realize how far we've come...

Just over 44 months ago, Braska was born, we were shocked, I went into meltdown, and all rational thought left my brain, apparently.  Even though I'd had experience with a variety of teens and adults with disabilities, including DS, I had a picture in my head of what my little girl would be like, and it wasn't pretty. It was grim, and boring, and unfun, and sad.

But wow...if I'd only been able to get a glimpse of THIS on that cold day in November...

I thought all my dreams of cute bows and girly clothes were lost. She wouldn't be pretty, she would just "look funny," I figured.  I figured she would be a sweet baby, but I never expected such a FUN little girl! 

I can't believe I thought she'd never giggle and play!  I can't believe I thought she would be a little bump in the corner who wouldn't interact with people.  If only I could have seen her with her little sister as they wrestle on the floor!

I thought we would never be able to chat about silly things, that she wouldn’t be able to talk clearly, that people would want to shy away from her. 

But this morning she has run around the house with her sister, giggling and saying, “So funny! KiKi silly!” over and over. She came up to me while I was typing this to say, “Hi Mommy!” as clear as anyone could say it, and then followed the hug I gave her with “I love you” as she turned to go back to play.  She’s a magnet in stores and public places and people just seem drawn to come over and chat with her.  She is always happy to oblige.

I feared she wouldn’t learn. But we just finished doing her morning practice for her letters, numbers, shapes, and colors.   She got every single letter in the alphabet right in the random flashcards. Twice through.  And she’s 3. And she has Down syndrome. But who cares?!?  She matched her colors and shapes like she was asked to do. She can name her shapes, and she is getting better with her colors.

She has amazed us over and over, but really all the change and growth has been in ME, for sure.  We went from fear over the diagnosis to actually hoping that our second one would have DS when we found out I was pregnant.  Crazy, I know!  (We kept KiKi even though she was all typical and everything. :o)  Ha!)

Not every moment is a party, but they are all so much better than I allowed myself to imagine!

Tuesday, July 6, 2010

Comparing comparisons [Down syndrome, siblings]

Today I received an email from a blog friend (who I didn’t recognize immediately…sorry!) asking a question that prompted what I have been meaning to post about for a while.  So I asked permission to share the email and response, removing identifiers, for a couple reasons.

1. I don’t like to rewrite things when I don’t need to.  Who has the time?
2. I know there are SEVERAL of you other blog buddies out there who can relate to this situation, and I’d really love to share your input with her as well.

So read along, and please share your thoughts…if you want to do a post of your own, or you already have one that’s relevant, leave a link in the comments. Thanks.  Online support is VITAL, I think. I’d be lost without all the things I’ve learned from the other “DS moms.” (I know…not PC.)

______________________________________________

Her email:
I have a 2 1/2 year old who has down syndrome, and an 11 month old who is 'typical'.

My question for you is: how do you not compare them? At 11 months, V is doing more things than R did at 18 months. 

It scares me how fast V is learning and reaching milestones.  I am ashamed that I even compare them at all.  It's so hard to watch R at her therapies, struggling to climb stairs, or say a word, or stack a block, yet V can do those things and we haven't even showed her!

I'm sorry. I don't mean to vent. I just thought you might have some advice for a mom with an older child with special needs and a younger child who will soon surpass the older.

Thank you.
_______________________________

My response:
Hi,

I’ve been debating a post about this, formulating it in my head very recently.  Funny that you happened to write today.  I don’t know that I have any great advice, but I’ll share how it looks for me.

As you might know, my girls are 27 months apart, Braska will be 4 in November and Kinlee is a few days away from 17 months.  The simple answer is that I DO compare them, sometimes just because they’re my kids and I think every parent marvels at how different and how similar their kids are, no matter what their chromosome count is.  Sometimes I enjoy looking at how Kinlee at 17 months is the same size Braska was at almost 3 years old.  It’s fun to me, not to Braska’s insult, but just because I enjoy their differences.  I love to take pictures of Kinlee in things that Braska wore, though now, they are wearing many of the same things!

That said… there are times when it’s not as “cute” to compare, and I’ve found that recently I’ve been faced with the hardest issue.  It surprised me, but I’ve had to deal with it a little more than I expected.  You see, Kinlee and Braska basically started walking at the same time…Kinlee was 13 months, Braska was 40 months.  Braska has progressed well, is getting stronger, and has gained better balance, but she is still very wobbly and very much a “new walker.”  Kinlee sped right past her, handling steps more skillfully, climbing more, balancing better, almost running at this point.  Braska is significantly delayed in her gross motor—it is one of her toughest areas, as she has severely low tone.  We know this, we knew this would happen, and it was ok.  I’m not too bothered by the walking issue.  BUT in the past couple months, Kinlee has taken off in her speech and language.  This is Braska’s STRENGTH!  Braska’s done extremely well with speech and enunciation, especially in the realm of kids with DS, and we’ve been very proud of her.  We work with her, but it is clearly a natural strength of hers.  With Kinlee fast approaching Braska in the speech “race,” I realized the other day that soon, ALL of Kinlee’s skills will be beyond Braska’s.  And that was hard for me.  I could deal with Kinlee passing her up in the weak areas, but once she overtakes her in the area of strength…what else is there?  She already uses “yes” and “no” more appropriately than Braska, who only this past week has started using “no” when she has a preference that would make it the right choice.  She can make her requests, follow directions, and understand a more complicated situation much more easily than Braska can.  It’s all a little hard for me to accept, but yet I am excited Kinlee is doing so well.  How to live in both of those worlds?!?

I never expected this to be a concern for me.  We don’t really struggle much with what Braska “can’t” do. I’m fine with her pace of learning, I expect her to do her best, but I don’t care too much about where she falls on a chart or in comparison to other 3-year-olds.  And yet, I’m hit by this situation of Kinlee preparing to fly right by her in the milestone sprint she’s on.  What to do about it?  I don’t know.  I must refocus back on the fact that Braska is a phenomenal kid, just like she is. She is by far the sweeter, more compliant, consistently happier, easier to deal with, and more loving child.  And I love that about her.  Kinlee is pretty great in her own right, but she’s a challenge in many of these areas, which I think is probably to be expected, and yet we don’t really KNOW what to expect. 

I do SO get what you mean about how the younger can just GET things, like without being taught specifically for hours and hours before producing a result.  It’s been amazing to watch Kinlee surprise us over and over.  Last night I took her to the store with me, and she looked over at the side while I was choosing a loaf of bread and said “Buns!”  And she was right.  They were hamburger buns.  Something we NEVER have in the house.  I think we’ve used them once at her grandparents a couple weeks ago… how in the heck did she know that?!?  And animal sounds… we basically were reviewing with Braska, as we often do, just playing the “what does it say” game, and Kinlee knew them all right on after the first time through!    I can’t get over how one day she doesn’t know (fill in the blank) and the next day she knows it completely!  Braska has serious feeding issues, is on a g-tube, and isn’t anywhere near feeding herself, because she doesn’t really want food in the first place.  Kinlee was given a spoon, shown how to use it once, and she has a decent grasp of it.  Not that it’s perfect, but she gets it.  Amazing!  We often refer to Kinlee as the “superhero” of the family.  But then Braska is the one who has endured open-heart surgery and thrived with beauty and grace throughout the whole struggle!

Would I want to change Braska to make her “keep up” better?   Nope, not at all.  I’d love it if she were to be able to learn more easily or grasp concepts more fully, but I don’t know what other things we might lose in that adjustment that I’m not willing to let go of.  I have come to believe, once again, that she is precisely who she was designed to be, and I can only adore her for being so purely that.  There is no pretense to her, she doesn’t try to be what she’s not.  She’s 3, she’s a girly girl,  and that’s all that’s there.  And I like it that way. 

I don’t know if this helps any, but I can only encourage you that there are a lot of us out here who are in the same boat.  I have a few blogger friends who have a kiddo with DS as the oldest and then another one within the next couple years.  It’s amazing how similar our stories are, and yet how we each handle it with our own style.  If you wouldn’t mind, I’d love to post your question (names removed, so you wouldn’t be identified at all, if you like) so that some of the other moms in this position could offer their insight as well.  Would that be ok with you?

The day that Kinlee uses her first full sentence in a more concise and language-appropriate way than her sister, I’m going to have trouble with it, even while I celebrate her accomplishment.  I hate to see Braska be truly “behind” her little sister, but I know that Kinlee is going to be a great leader for her to follow after.  Braska will benefit greatly from Kinlee’s being “ahead” of her!

Many blessings… love them like crazy, and celebrate them, no matter how quickly or slowly they got to the sweet spot. :o)

_____________________________

How would YOU answer the question??

Wednesday, November 4, 2009

Loaded question—Prenatal testing

A student working on a project on Down syndrome in college posed a question yesterday on one of the forums I frequent.

What would you suggest for someone else who is going to have a baby? Would you suggest that they get the amniocentesis or any blood work directed towards finding any potential problems or was it just easier not to know?

And this was my response…  I know this is a controversial topic, but I wanted to share my perspective.

This is quite a loaded question, in most circles, but I'll answer as honestly as I can.  I didn't know prenatally and I'm very glad that I didn't.  For me, that is because my marriage was in a very fragile place, and if we'd have known this, I'm sure it would have been over before she even arrived.  I would not abort a baby for any reason, so when I was offered an amnio, there was no reason to do it and take any risk related to it. 

Even though we struggled with the first couple weeks of adjusting to all the news, I wouldn't trade that for the months of worry, unknown, fretting, etc, that I know would have come if we'd have known prenatally.  The time we had to adjust was helped in that we had a baby to hold and SEE and cuddle as we adjusted. She was "just a baby," not an unknown disability with problems and delays ahead of her.  That made ALL the difference, I firmly believe. 

I'm aware that not everyone handles this the same way, but I know without a doubt that we were blessed in not knowing, and every day since and because of her arrival, as well.

In an "ideal" situation, I'd love to see much less prenatal testing, because I do believe that the majority, by far, react to the information they are given based on that initial fear and emotion, and in doing so give up a child that they would love and treasure if they only had the chance to meet him.  If pregnant women could learn about DS, have the opportunity to read stories like those in Gifts and Gifts 2, as part of their education during pregnancy, then the "preparation" that so many desire would be there, and those who did not have a child with DS would be that much more aware of those they will encounter later on.  Increased awareness across the board, and inevitably more precious babies allowed to be born...seems win-win to me. :o)

I know we don't live in "ideal."   I also want to stipulate that I know that not EVERYONE who gets a prenatal diagnosis aborts, but the current stats, as recently as this week, still state that over 90% of those who DO know prenatally DO abort their babies.  But the truth is that in all our desire to know and be prepared we still can't know what our child will be like, we can't know their strengths, what they have to offer the world, and how they will bless the lives around them, even through struggles.  If the parents do not know prenatally, information can be found, adjustments can be made, all kinds of options are available, even if they feel unable to raise the baby.  BUT if they do know, and in doing so if they decide that the fear and unknown is too much and they decide to abort their baby, that decision can NOT be adjusted to, changed, or reversed. 

So to me, the benefit of knowing is not worth the very high cost of knowing.

Thursday, April 30, 2009

Sequenom test delayed

I just received this from my friend Missy, and I think it's worth sharing!

Many of you know that Sequenom had been developing a new test that they claimed could diagnose a first-trimester unborn baby with Down syndrome with up to 95% accuracy. It was a blood test, so it surely would be used often by women, and the likelihood that abortion rates for babies with DS would increase was a very real concern. The news came out today that the test release is delayed due to “the discovery by company officials of employee mishandling of R&D test data and results.”

I don't know what that means exactly, but I know that I'm pleased. Prenatal testing is a hot issue, and I'm not trying to debate that at this point. Just sharing the latest info on something that many of us have been watching.

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.