Monday, January 30, 2012

In Between

Today I read a story that brought tears to my eyes.

If you're interested you can find it here:  nice story

While I feel heartened by this story, I also feel a bit uneasy.  Part of me is overjoyed to read about the children's kindness by giving this boy such joy and I hope that my daughter may some day have this kind of acceptance if she needs it.  But then I think about another side of it:  that she may not need that kind of special treatment.  There are those who feel that their children with Ds are limited only by others' expectations.  Those who would feel offended by this kind of treatment.  They tell stories of their children being the smartest kids in their class, express frustration that society expects their children to have delays, and are bound and determined to do everything in their power to help them realize their full potential.

I feel that I am determined to help Cora realize her full potential.  But I also am wary.  I worry that if I refuse to allow her to experience any delays, then I will be disappointed and let down if she does not do things "on schedule."  And I don't want my expectations to compromise my acceptance of her.

We work with her to give her opportunities to succeed:  We give her supplements.  My husband builds her tools: a crawling track, a bench, a desk, a weighted bin to pull up on.  We both put her through "therapy-play" on a daily basis.  She breastfeeds and eats almost exclusively home-made, high-quality whole foods.  We work with her on a baby reading program, sign, read and sing to her.  We expose her to our community and to age-appropriate activities for typically-developing children, as well as events for people with Ds.  We take her to the naturopath, the chiropractor, another who does craniosacral, along with a myriad of other "required" medical specialists.  We expect her to wow us with her life, and we are encouraged and impressed regularly by her accomplishments.

Yet she's still developmentally delayed in gross motor, fine motor and speech.  She shows comprehension in many ways.  She understands phrases we use commonly, she is able to do the motions to her favorite songs (though she chooses not to most of the time), she is able to feed herself (though she chooses not to most of the time), she is able to mimic some of our sounds (though she chooses not to most of the time), and she responds appropriately in many situations.  But there are many things that typically-developing children her age are doing that she does not do and just doesn't seem ready to do.  Whether she can yet or not I don't know.  Most of the time it isn't clear if she understands what I say.  She doesn't say words yet (although she consistently says "hi da" to both me and her dad, which he is convinced is a greeting she gives to us both).  Is it wrong that I am skeptical?  I so want to believe that she is capable of greeting us verbally with intent.  I feel horrible that I doubt it.  But what if it's just a sound she likes to make?  How do I know?  How do I expect the most of her and at the same time avoid disappointment?

I say these things aware that she has delays, and accepting them as part of where she is now.  I expect her to catch up.  I expect her to be reading before she enters school.  I plan for her to be included in a regular classroom with peers her own age.  But I am also learning that I am okay with it if that is not to be.  I can expect that of her and want that for her.  But I also am learning to be okay with accepting her for where she is at the given moment.   I have to be okay with the fact that things may be more difficult and may come slower for her.  I can expect her to graduate high school with her class and go to college at the same time that I can accept it if her own goals are different, or if her full potential doesn't look exactly the way I always hoped it would.

Because really, her value doesn't exist in what she is able to do.  It exists in her.  Just her.  I see it in her smile and I feel it in her squealing giggle, barely able to be contained in her voice and in her face as I bounce her across the room.  I see how other people respond to her contagious babbles and coos.  I see them lean in and feel her pure joy for those moments, the way I am blessed to feel on a daily basis.

I expect her to have a grand life.  The value of that life will not be simply the compilation of her accomplishments.

I can expect her to achieve.  I can expect her to soar.  I can set no limitations and support her to reach her highest potential.  And I can accept it if that potential looks completely different from the definitions I had set in my pre-Cora life.  That may sound like a contradiction.  But I am learning that it is not.  I know that in our society we tend to pit the things we view as opposite against one another, convinced that they cannot co-exist; that it isn't possible.  Perhaps I'm re-learning to appreciate a more Tao-ist view and learning to find contentment somewhere within my seeming contradictions.  I could think that maybe I'm becoming more relaxed; even though I don't think I'm really "there" yet.  (Those who know the anxious, organized, plan-ahead me are probably smiling right now.)  I guess I'm still learning where my own place in this in-between world really is.  I guess I'm finding it all the time.


  1. I know I could not say it nearly as well as you, but I so understand what you are saying and feel that same "fence sitting" at times with Miss K. We do pretty much the same with her that you do with Cora ... and there are things she does so well and things where she is delayed. (And there must be something on that triplicated 21st chromosome that hardwires them to not do for us the things we know they can do! LOL) It's that balance between expecting the world for them/of them, and loving them for exactly who they are and who they will be.

    If it is any consolation, I have the same struggles with my boys; I even find myself at times telling them that we love them no matter what ... we have high expectations for them and let them know that we know they can do whatever they set their mind to, and yet we remind them that no matter what they do, we love who they are.

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  3. You have put my exact thoughts into words much better than I could have. I need to look into more with Hailey. I feel like I should do more. I have high expectations for all our little ones but yes, understand that it might not happen the way I had dreamed. Howeever, the same could happen with typical children. I love, love, love the pic of Cora!!

  4. Oh Leah, this post so perfectly describes the battle I feel within myself concerning Russell. How do you find the balance of expecting the most, while at the same time being aware that there may be limitations. Accepting our children for exactly who they are, while trying to help them reach full potential in all areas. It is a very fine balance. All we can do is learn as we go...It is comforting to know that we all share some of these thoughts and feelings. This post was so well written.

  5. The best advice I can offer is to keep doing what you do - refuse to accept limits, and offer her the *tools* she needs. But as time goes on, you will discover more and more (even though you have already discovered this, no doubt) that she will do things *her* way, in *her* time. One day...nothing. The next day..."Holy cow, she did it - I didn't know she could do that!" Our kids like to surprise us in so many ways. But they teach us to *enjoy* life, and to take each day as it comes.

  6. this is something I was thinking about today...watching Maddie having things done for her and carried by older children...and wanting her to do it all herself...I dont want Maddie to be treated different to make the team just because...I want her to make a basket that she earned...I want her to be treated as everyone else and not scene as the kid with "just" Ds...we do everything to give her an upper hand in life and nothing can take away that things just come at her pace...that we cheer a little louder for her and somewhat small things makes us cry when we know how hard she has worked...great post! smiles

  7. Beautifully written post. . . you have put into words what I have so often failed to. That picture of Miss Cora is priceless!

  8. thanks for taking the time to write and express something many of us obviously have on our minds.
    i have spent so many hours on this. but i have to say that i also have been enjoying recently (nearly 2 years into this journey) a sense of peace that has gradually developed about the long game.
    Short game, Near term? Pre-school or not or where? More speech therapy? Why aren't we on that reading program!?! GRrrrrrr

    But long term? It freaks me out a lot less than it used to. I can't attribute it to anything but time passing and wisdom ever so gradually and painstakingly accruing (not that I'm wise). Keep expecting. Hugs.

  9. Great post, babe! Lots of good points and very refreshing perspectives. I love you ;--)

  10. Like you, we try to do a lot with Ben. We take him to private therapy. He takes supplements. He take him to a chiropractor that specializes in neurological issues. And yes, he still is delayed. I've found peace regarding Ben and his peers without Down syndrome. He will never be like them and I'm okay with that. I still struggle with comparing Ben to all his wonderful friends with Down syndrome. I then have to take a step back and remember Colin's development. He walked at 10 months and then didn't talk until he was 2 and a half. His milestones were all over the place. I think Ben will be like Colin. He'll do things when he is good and ready.


Thank you for sharing your thoughts with me!