Friday, July 27, 2012

In Our Shoes - What do you accept?

This may be a melancholy post for some.  But I am genuinely asking this question of those with older/adult children...

"At what point do you make peace with the idea that it's not 'going to be okay'...and that despite the highest of expectations and the most extraordinary educational opportunities, your child will not wow the world. At what point do you accept that your child will change you, and that's it?"

Elise will be 10 in a few short months.  As I mentioned HERE and HERE I expected and expected and expected....and I do not see the open field of opportunities that I had seen for my daughter when she was 2.  I just don't.

I was told after she finished treatment for her leukemia that there would probably be some mental retardation as a consequence of the chemo.  But when your child already has mental retardation thanks to a disability, there is no way of knowing what effect it had on her.

Plus, the range of IQ is huge in people with Down Syndrome.  There are high functioning people with it, and there are low functioning people with it.  And it all does not come down to their parents expectations and the opportunities given them...not all of it.

This question comes up because of several things...many, if not most, of the people I know with kids with Downs have little ones...they are under 5.  And they are still writing, arguing, and fighting the school system for opportunities that are limitless.  They are still following the Einstein Syndrome model and are still fighting the world at large for the same view of their baby.  And don't get me wrong, that is a good thing!  But there will come a day for all of us parents with kids with special needs (really, ALL parents, right??)  where you will have to take stock and meet your child where they are.

Also, I am seeing Elise shut out in our own home because she cannot play or communicate.  The little girls are playing house, dolls, concerts, dances, plays, and animals...and Elise can't.  She is becoming aware of this, I think.  She used to try harder.  Now she only attempts to join them 50% of the time....if that.  I encourage her and them to play things they can all play, but even mama cannot fix this one all the time.

The inability to communicate especially hit me this summer and Elise is now getting private speech therapy that is specifically targeting the social communication with peers.  I am pursuing a speech device, I have left whole hosts of messages with the specialist down at the hospital...and as each week passes, I question if they have any intention of calling me back.  It will be a big surprise when I show up on their doorstep if I don't hear back...don't think that won't happen, okay??

The depth of the lack of communication hit me pretty heavily last week.  Elise went to her beloved hippotherapy.  And had a kitten.  She took off her shoes, threw them at the therapists, let all the horses out of their stalls, and cried in the dirt.  At first I was in a state of utter disbelief...then when she volunteered to go home and take a nap, I realized that there was something else going on.  To make sure that it wasn't a well-organized attempt at escape from work (which I would never put past her!), we made her go back in for another 30 minutes and work on physical exercises.  She had to "be" the wheelbarrow to work her arms, and then she asked to do the climbing wall...something, she's wanted to do since they installed the wall...and she worked hard, in her crocs.  Which brought to mind a total nervous breakdown she had when she was 2 and it turned out her shoes were too small...Which caused me to be suspicious of her shoes.  So, on the way home, I took her by a couple of shoe stores.  Not surprisingly, she had outgrown her shoes.  She went to therapy in a size 13 and we bought a size 2 (for those of you who aren't properly impressed, that's 2 full sizes).  And lest you respond, "Well, brands vary..."  it was the same brand (there are only so many that fit her).

It brought me low.  My child cannot even tell me that her feet hurt.  That her shoes don't fit.

THIS article was shared with me this week.  And to be honest, it was a bit of a kick in the teeth.  Until I read it again.  The mother is discussing her preschool son.  I used to love reading articles like that one, and ones like THESE...  They inspired me.  Nowadays, they just remind me how very far from that Elise is...and as the years pass, I wonder if that will ever be her future.

Now, please hear me.  I am not giving up on my daughter.  I am not.  Everything may finally *click* and fall into place.  As everyone constantly assures me it will.  And I still want from her, her best.  But I also need to start being realistic.  She may not be "high functioning".  She may not be able to "change her stars".  She may not ever have the friendships and relationships I had hoped for her.  She may find solace in movies and petting her cat.  She may not be able to ever follow the rules in a game enough to play a typical sport.  She may never be able to attend a party without me playing interference.  She may never be able to stay home alone.  She may never hold a job that inspires the parents of children with disabilities with hope for their future.

And I need to be okay with that.  More than that, I need to glory in it.  This is a child that we have almost lost 3 times.  This is a child that we have fought for medically over and over and over just to have with us.  I have no personal space anymore.  She lives in it.  I have to beg to go to the restroom alone.  It is exhausting.  But she loves hard and rejoices brightly.  She has changed me in so many ways.  She has refurbished my life and my perspectives.  She does a happy dance over the littlest things.  And I do too, now.  And that needs to be enough.


  1. I am so impressed and appreciative with your honesty. I don't have the answer to your question but thank you for writing this.

  2. After the NDSC conf, I resolved to delurk on more blogs. And what better post than this one? My girl's only 4 (tomorrow) but I'm starting to see it. Or rather, not hear it- she's still non verbal. And the widening gaps are evident at the pool, at the park, & next year it'll be jammed in our face when we start talking about Kindergarten. You're right. I try to revel in HER, but sometimes.... it's hard. Thanks, k.

  3. Wonderful, wonderful post. I see so many people that have over-the-top expectations but very little ACCEPTANCE. Very good points. The kind of reality a mother of a 2 year old, like me, needs to be aware of. Thank you. I am your newest blog follower.

  4. first of all, big hugs. second of all, more of them. those are big thoughts

  5. Tiffany, you are an amazing, inspriring mama! I wish I could HUG you because your post made me cry :( Prayers for you and your sweet Elise!

  6. hugs. and thanks for sharing. Like Meriah said, big thoughts and no easy answers.

  7. And that's okay. You can do it. Keep pursuing & show up on the doorstep but it's okay to take breaks and find what goals you want to pursue today. Reading may help: Reading gives structure & context to wanting to talk, motivation. Seems crazy but it works. Signing does NOT work for everyone but try a handful or say three signs that would help her & you.

  8. Find what your daughters goals are, inspire group activity but also individual ones with pets are excellent too. You will find balance, make time to pursue that goal for yourself! All ten year olds get out of balance at times & remember puberty & I bet moodiness is generally not delayed. Think back to your own shifting mind those years--communication might be easier with the right tools at her age & maturity PLUS her moms excellent intuition & guidance. Accept & embrace her where she is like you do but it might be your dreams not her own path

  9. You are changing worlds with her help through your calling & blogging with purpose. She will blossom in your light. One boy has a profound change by moving to a house with a few stairs he has to walk past regularly. The plateaus are sometimes life-stopping and I seem to hit a wall then WOW

  10. For me...I had to define "normal". He will never do the things 'typical' children do in the same way they do them. I had to learn to appreciate him for exactly who he is and not cry for what he isn't. That's not to say I don't still have moments. I just decided that Alex is who he is and he will wow me and the world in is own way.