Monday, February 4, 2013

the lack of voices

When I started this blog, I wanted to share what was going on in my life for my typical friends and to share what helped, worked, what it was really like for my friends with littler kids...  I was really struggling to find blogs or books that focused on the middle of life...of older kids and young adults...and even parents of adults with disabilities...their doors feel shut...  And so, even if I didn't manage a clockwork posting schedule, I wanted to light the way a bit...for several different perspectives...and to be honest.

And here is where my honesty is going to get sticky, and I know this will raise criticism, and "Nuh-uh's"...
And because I love you, here's a warning: 
If you are having a rough day, DO NOT READ THIS POST.  I mean it.  It's a dark one today...

Recently, the big "why?" question got asked...Why are there not many blogs about older kids and young adults??  One of my more favorite blogs answered and while I really liked the answer, and it was very seriously poetry to my soul...I am not sure that I agree.  Read it right HERE...and allow your soul to smile...

Now hear a message that I got from a nameless friend: 

Anyway, my [child] is 4 years old and I still cannot be around older ones with Ds. I’m not sure of the exact age but I know I’m not comfortable around teenagers and adults. I am ashamed to admit it but when I see an older person with Ds, my mind screams, “I don’t want my [child] to be like that!” and I just about can’t breathe. It takes everything in me not to cry or run from the room. I am fine with my [child] and other little ones with Ds and I trust that I’ll always be fine with [my child]. With others, I’m not so sure. As my [child] reaches each stage, do you think it’s safe to assume I’ll be more comfortable with those of the same age? Am I a horrible person for thinking this way? Do I need to do anything to “fix” this or just pray that it goes away?

That's part of the reason right there.  Sometimes you just aren't ready to face that stage.  And so you stick your fingers in your ears.  And it's not's quite normal, if you are honest with yourself.  If you are comfortable, then you were probably around someone with a physical disability before you landed with a belly flop in the middle of your own life.  I can honestly say the acceptance comes in stages.  And perspective.

To my friend, yes, I can assure you, the acceptance will come.  The friends of your child will not cause your airway to tighten...  As you go through your life, and walk with your child's hand in yours, the scary of each life stage will lessen in terror and you will not recoil and the future will become more comfortable...  I cannot promise that your throat will not knot with tears...  I cannot promise that each stage will be easier to deal with...  I cannot promise that your heart will not feel pressed under the burden of different...that is each parent's story...  But it will come with an awareness of each stage's joys and it will be easier to interact with people in those stages...

When Elise was little, I found an article of a couple with Down Syndrome that got married...and my heart cheered and I found a brighter light in my darkness...and I poured over their wedding pictures and smiled...

Now, I can look at the same article, and I literally weep, looking at the faces of their parents, knowing that unlike most weddings, the caretaking is not over.  This is not really a beginning, it is a sacrifice and an addition to their worries and responsibilities....and the sweet and happy couple trot off on their honeymoon, with their parents in adjoining cabins to continue their 24/7 care of their children.  They chose to add to their worries to give their children a stab at happiness.  They chose to make their lives more complex to encourage their children and save them from give them a place of normal in lives that aren't.

I watched David and Monica, and read between the lines...  I saw their successes!  I gloried in them.  I laughed over their perspective on their own disability!  I was thankful that their story got out!  My heart filled as I heard them call each other pet names and supported each other...and made their beds and cooked and took their medicines...  I did!  It encouraged me that Elise's independence will grow and come...and that she, too will find love.  But I also saw the lines of anxiousness on their parents' faces.  Their tears of fear for what will happen to their children if they die and leave them alone in the world, pierce me with no hope of healing, because I too hear the echo of that future.

I LOVE and crave the words from parents with older children and adults with Down Syndrome, but they often hurt, cut, and make me cry...because even their victories are not what I had hoped for 5 years ago...certainly not what I had hoped for 10 years ago.  To be honest, they are not the life I wanted for my child.  They are not full of boundless possibilities.  They have capped out their opportunities to a certain extent.  (Just as neuro-typical people do!)  Sure they can still choose between certain jobs...they are finding acceptance for marriage...they have more social opportunities...but they aren't deciding between the soaring options we still think we have at age 20.  It's not what any of us hope for when we smile at our babies' tilt-y eyes and button nose.

I rage against some parents for the acceptance of certain eventualities...don't they KNOW that their child could do more, go farther, accomplish more????  And sometimes that is true.  But sometimes, it's not.

Sometimes it is true that literacy will not be attained.  Sometimes clear speech will never be a success.  Sometimes we will have to settle for translating our children in public, we will have to look into speech support devices.  Sometimes, sign language, despite being able to speak, will offer the only crack at public communication.  Sometimes, a self-contained classroom will offer the best success.  Sometimes it is true that a full inclusion class will not be be best fit for a child's learning.  Sometimes, there will be no possibility of independence achieved.  Sometimes the child, who is now an adult doesn't want to be the social martyr for our little ones.  Sometimes they are tired.  Sometimes they don't want to go to battle any more for marginal accomplishments.  Sometimes living is enough of a battle.  Sometimes the scars hurt too much.  Sometimes peace is all they really want.  Sometimes it's asking too much. 

And sometimes, that truth is simply too hard to hear.

And so, I think that there is a certain loss of bloggers/writers that share their stories at these stages, because they don't want to snuff the hope.  They don't want to discourage the next generation of case this is the generation that turns the future around....because crusades are tiring...and you shouldn't start the crusade tired and discouraged...or you'll never get to the battle lines...
But, there is always hope.  Shuffling steps just as surely get you to the top of the mountain as confident and quick strides, and no matter how you get there,  the view will be beautiful.  Even if the canyon, shadows, and exhaustion made it hard to get there...  For that matter, the back of the mountain may not have been what you are aiming for, but it is just as exhilarating a success. And sometimes, it's not as high up as you thought you'd get, but as the climb went on, you didn't think you'd get even partway...  But you will.  Hold tight to your matter how big or little it is...keep it under a vise grip and never let will make everything worth it.  I promise.  Because your trek, no matter how brutal, made a difference for your child.
Sometimes there is a lack of voices because they have nothing to say.  Sometimes there is a lack of voices, because you have to see it yourself.

Sometimes your triumph will look like this to the world.

Sometimes like this.
But it's not any less a triumph.

Habakkuk 3: 19  "The Sovereign LORD is my strength! He makes me as surefooted as a deer, able to tread upon the heights. "


  1. i loved reading this. i am the mother of two young children diagnosed with autism. i am also 43 years old. when my children are 18 i will be 58, when they are 30, i will be 70. while i believe there is a possibility they will flourish and become independent, there is a part of me that is terrified that they won't. it is so hard for me sometimes to live in the present and celebrate the victories that are happening every day, without worrying that it isn't happening fast enough. love to you and your family.

  2. For me, it was a conscious decision not to compare The Boy's successes or failures to anyone else. I stopped looking at where 'typical' children were in their development. I decided that he wasn't typical and could only be judged against himself. I could only help him meet his potential and the energy I spent being sad was wasted.

    He may not go to collage or drive or marry, but he will be happy and loved and will be given every opportunity to be the best version of himself in a life that is satisfying to him and knowing that I find some peace.

  3. My sister has a daughter with Ds (her daughter is 29). I love reading here and I know what I'm learning will help me be a better sister and aunt.

    Thank you so much for sharing.