Dare to be Moved

Sep 16, 2014 by

My daughter mastering the art of the selfie.

My daughter mastering the art of the selfie.

When one member of a family is identified as having “special needs” the entire unit becomes a “Family with Special Needs.”  There is little about how we function that isn’t somehow structured in a deliberate way to encourage the best possible outcomes, interactions and moments for all of us.  We have an outdoor playhouse inside so there’s somewhere to climb during all four seasons, ditto the swing upstairs.  Around items we don’t want a power struggle the kids each have their own same item, such as their treasured kindles.  Yet, to push the goal of sharing and turn-taking, there are several items of which there are one, such as the sled.  Don’t let me kid you, there’s plenty of disorganization, too much paper, more than one junk drawer and ample broken toys we haven’t sifted through.  You pegged it, normal mayhem.  The truth simply is, special needs made our normal mayhem more conscious.  One of the gifts in that, truthfully, is that I don’t miss much anymore.  I’m awake.

Dance class? It’s a matter of integrity.

Sep 11, 2014 by

I played clarinet for 15 years.  I could carry a decent tune on it but ehh I definitely wasn’t applying for Julliard.

I took a piano class in college.  My professor told me “you play piano like a clarinet player.” Pretty sure that wasn’t intended to be a compliment. I thanked her nonetheless.

I was a flag twirler in high school one year.  The next year, they held try-outs even for existing members JUST SO THEY COULD KICK ME OUT.  And they did.  (In hindsight, it would’ve been brilliant had they just told me I twirled a flag like a clarinet player.)

As far as dancing goes, I am about as graceful as… well, the dorky ex-flag twirling clarinetest you sat next to in high school.

My husband played the cowbell in our college band.  Let’s just say I didn’t marry him for his rhythm.

 

Sometimes it’s hard to talk about.

Sep 3, 2014 by

Right after my girl was born and subsequently diagnosed with Down syndrome, just about the only people we could speak to about it were our parents. Because I couldn’t talk about it without completely losing my shiz. My maternal hormones were on parade and the words just couldn’t leave my mouth without the flood gates also breaking open from my eyes.

So I did what I do.

I wrote it down.

I sent an email to about 40 of our closest friends, laying down the facts and a hopeful outlook for our future.  I asked that nobody call. I gave permission for them to spread the word as appropriate but asked that whomever they tell respect our privacy, too. The last thing I wanted was for the rest of the world to see the hot mess I had become.

My Sage

Jul 29, 2014 by

With a diagnosis of Autism we wondered what we might do to help “treat” you or lessen the “symptoms.”  You showed us with your love of life and your buoyancy through tough moments that you didn’t need changing. We read stories from parents, from adults and teens with Autism, from professionals, and we wondered if we could lessen your pain, since it seems to permeate so many stories we heard.  Your smile and your laughter assured us that you are not their stories, but your own; full of delight, wonder and joy. I wanted to coax you out of your shell as if you were a turtle, and you showed me that you are a lion – r-o-a-r, a ballerina, and a superhero, but a turtle you have never been. 2014-07-20 13.23.29 I wanted to introduce you to life, instead you brought me to mine. On a slow hike through the woods you find the letters “F” and the “Y” in the sticks and leaves you bring me to hold.

Remember to Breathe

Jul 15, 2014 by

School letting out for the summer is magical for a spell.  For a week or so, we don’t care about their 20 minutes of reading.  We survived, they survived.  For a bit, we don’t have to wake at the crack-of-dawn, we can wait until the crack-of-dawn-thirty.  No lunches (until camp and summer school begins), no more homework.  For a quick spell, we all feel accomplished.  “Another year… gone!” (Albus Dumbledore in the Sorcerer’s Stone).

sage big kid bus

This year-end brought particular relief and enthusiasm as our little girl successfully completed kindergarten, in a mainstream classroom, with extra support.  After we watched what Noah went through in Kindergarten we were a bit nervous terrified.  Yet, she made it.

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