Thursday, June 18, 2009

Sometimes, it's confusing.

At times, having a child like Lauren - one with Down syndrome - is confusing. There is so much information 'out there' and I usually don't feel alone on this journey, but still, there is so much to consider, sort through and try to understand.

As with so many other things, there is such a wide range of developmental ability when it comes to a child with Down syndrome (or any child, for that matter). But, i'm asked on a regular basis questions to the effect of "how smart is she going to be"?

No one actually asks that but that is what they want to know - as if I know. I don't know how smart Lauren is going to be any more than I know how tall she is going to be, what her favorite song is going to be 6 months from now or whether she'll prefer flip-flops over closed-toe shoes.

I do kind of wish i knew though...I find myself torn between this feeling of believing that the more we work with her, the more therapy she receives, the more we challenge her, the more capable she will become and another train of thought that tells me that she is going to become who she is meant to be just by being with us.

I read about other kids with Ds who seem to be doing so well and I am both ecstatic and jealous. There are many people with Ds out there doing exciting and remarkable things and I could not be happier about that. Sometimes, Lauren is that child doing so well and other times she isn't. I know that she is not going to be the brightest child with Ds that there ever was, and I also know that she is not going to fail. I wish I could just be all right with whatever is to be..perhaps the fact that it is such an unknown is what confuses me.

What do I want for Lauren? I want her to know that she is accepted by her family and friends and that she does not have a bunch of limitations placed on her by others. I also want her to know that she is okay just the way she is: she doesn't have to have the biggest vocabularly or the fastest backstroke....she just has to be the best that she can be.

Tonight at Wendy's we met a father raising a teen with Ds and he told me "don't let others decide how well she will do". That's good advice...I hope I can follow it!

9 comments:

The Lehnick Family said...

I feel ya! I understand how you are feeling...it can sometimes be plain FRUSTRATING! Everything, the appointments,the therapies, the never ending questions from others...but then comes the BLESSINGS from it all! I have to just remind myself how lucky we are to be chosen to be the parents of these precious little angel babies!
I wish we knew all the answers...but I don't know all the answers with my other two kids as well...I know some of the circumstances are different...but try not to worry or wonder...I know way easier than said! Lauren is so lucky to have you as her mommy and just be thankful for what she is doing today! I had to stop worrying so much about the future...although AGAIN easier said than done.
Thanks for posting this though...we all feel this at times and we all need to vent...I have done this more than a few times...

datri said...

No one can see the future. And some kids will be the way they are no matter how hard we work with them. Kayla would be considered "low functioning". She's five and nonverbal, non-communicative, not toilet trained. She's had the maximum amount of therapies available since she was 2 months old. She also has autism which has affected her WAY more than the Down syndrome. But you know what -- she's happy. Very happy and very loved and that's all that matters. I have an 8 year old educationally gifted child who is constantly miserable, anxious and depressed. So being "smart" isn't everything.

Anonymous said...

I found your blog through "A Hapa Girl and her Hapa Family's" blog and feel the same as you do. My two-month old son has DS, but the DS has taken a backseat to the cardiac issues he faces. He has He had heart surgery to place a shunt on his heart when he was 7 days old and will have open-heart surgery when the doctors say he is old/big enough for it.

My husband and I still have no clue what lies in store for us having a child with DS, but we love our little man and just want the best for him. I REFUSE to allow my son to fall through some governmental or bureacratic crack. I will love him and push him more than anybody else he will face because I do love him that much to make sure he doesn't fail.

God Bless you and your family,

Charlotte
nimbs2k@hotmail.com

T21 Traveling Afghan said...

I hear ya! I get "she's so high functioning" sometimes and I think, um, she can't talk, she isn't potty trained and at times it seems as if she will NEVER grasp some concepts....and THAT'S what you consider high functioning??? Why can't she just be Emma? Why can't she just do what she will do when she will do it with all the help we can give her? Why is there a value or interest placed on how "functioning" she is? She's five, for cripe's sake. Let her be a kid.

Tiger Willikers said...

Those questions are from people who don't know enough Downs kids. Without saying that the difficulties can be overlooked, I have to say that knowing a kid with Downs is like a revelation in human relations.

I think I see some of the best qualities that humans have to offer more clearly in Downs people than in "ordinary" people.

Karen said...

just read this Signe. All's I can say is "AMEN" sister. lol. I try not to worry about Caleb's development, but raising him is different from my daughter, in that, I either always feel I must be doing "something productive"-working, therapies, what-else-can-I-do...or else feeling guilty that I'm not. I look at the older kids with Ds and wonder. I wonder if more or less or different therapies would've made things better-or not.
My comfort is, at the end of the day, Caleb is ours. He will always be ours. Whether the world accepts him, whether he can work or drive or follow a certain train of thought. He will ALWAYS know that we love him and he belongs.
God Bless you and Lauren!

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