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.

Thursday, May 13, 2010

Having twins! [Down syndrome post]

Did you do a double take at the title?  Did you jump right into the post to get the “big news”?  It’s funny what a couple words and an exclamation point can do to some people.

We’re not having twins. Or babies of any kind.  Just to be clear.

I get asked a lot about how the girls are doing in terms of development and size, relative to each other.  Only a few times have I been asked when we are out if they are twins.  I think the difference in hair length is the big giveaway for most, at least that’s been the “tip-off” for a couple people who mentioned it.  But we do get a lot of comments about how similarly sized they are.

There have been many times in the last few months when I’ve thought that this must be a little peek into what it’s like to have twins.  At least for this little period we’re in right now.  Developmentally, they are so close in age in many ways.  Not all.  Braska still has Kinlee beat with speech and language, that’s for sure.  But Kinlee is picking up words and signs faster than I can keep up.  But with gross motor, Kinlee has passed Braska by.  Kinlee can climb more efficiently, walk steadier and more quickly, she is far more balanced and solid on her feet, and she has a great deal more stamina than Braska.  With fine motor, it’s the same story.  Kinlee can manage small things, open lids, sign some things more correctly, and she can push any button she wants with great accuracy.  These are things that Braska struggles with.  Though Braska knows far more signs, she doesn’t necessarily do all the intricate finger work correctly because her little cute, stubby fingers don’t cooperate with her.

Clearly, they are very different little girls.  But for this short period, one that will probably be fading away by mid-summer, they are interested in much the same things, entertained by some of the same things, and they function very similarly in the home setting. Soon Kinlee will be enjoying her role as the leader, which she is practicing currently when she gets the chance, and Braska will be following and learning from her.  And that’s ok.  That’s not bad, in my opinion. It’s just what is.

I’m not selling Braska short, and I’m not saying Kinlee won’t learn from her later on.  I think Kinlee will always learn from Braska, and there are definitely areas where Braska will maintain her “lead” for quite some time.  But the reality of developmental delays is that at some point, the younger child will surpass the older child in some physical and cognitive realms.  We’re ok with that, because we believe Braska is exactly who she is supposed to be.  She doesn’t just “happen to have” Down syndrome, and she definitely doesn’t “suffer” from it.  She was created just as she is, and though there are some times I wish I could help her in ways that I cannot, I wouldn’t change anything about her most core qualities and design.

Comparisons can be dangerous, I know. But I am comfortable that we are enjoying this time that they are so nearly matched and we’ll celebrate them both as they grow and progress through the next stages.  We cheer Braska when she takes a bite with proper mouth and tongue position and when she closes her mouth around her straw, even if she doesn’t drink, because this is huge!  And we cheer Kinlee when she eats her whole meal by herself—veggies, meat, pasta, fruit, and all, washed down with a big cup of milk.  Different celebrations, but the same excitement for each.  We’re impressed with them both for all they do, and just because they look so similar in size right now doesn’t mean that we don’t recognize their individual needs.

It’s fun that they can share clothes. It’s fun that they both love to wear bows in their hair.  It’s fun that they both like to hold hands and walk to the car after church.  They will change, we will change, and all the elements around us will evolve as we go through life.  But for now,  it’s kind of fun having this little tiny glimpse of what it might be like to have twins.

1 comment:

Nikki~Down syndrome Storyteller said...

Love your blog! Braska definately does NOT suffer as anyone can see! Thanks for spreading the good word about Down syndrome.
http://down-syndrome-facts-and-fiction.com

http://astoryofdownsyndrome.blogspot.com