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.

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.)

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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.
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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)

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How would YOU answer the question??

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