“I Cannot Say Okay Mommy”

Oct 21, 2014 by

Bedtime has come and gone.  Songs have been sung.  Pillows have been fluffed.  Blankets have been tucked in.  Kisses have been placed on foreheads.  The dog has received his last head pat.  Off to dreamland we go.

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Only we forgot something.

“Mommy, what will Monday bring?”

Our dear Sage needs to have a sense of “what’s next?”  It is a regular question in our days, and it helps her organize her world.  Tonight during our nighttime routine we forgot to talk about what tomorrow will bring.  Since last Monday was a day off, she’s not sure.

“You’re right, tomorrow is Monday, and tomorrow is a school day.  Okay?”

“Awwww.  I cannot say okay Mommy.  Good night and sweet dreams.”

My wife and I crack up in the bathroom, “does she have any idea how funny she is?”  “Oh my gosh, so darn cute.”  But then we stumble on the gem, “But honestly, she’s right.  Honey, I have to work tomorrow, and I ‘cannot say okay.'”

Riding through the Rough Patches

Oct 14, 2014 by

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We’re going through a couple of rough patches with both kids.  They’re both having a tough time adjusting to their new grade levels.  Our daughter’s behavioral outbursts are escalating.  She’s spent a lot of time with substitutes and we just learned that today her teacher will be switched due to another teacher’s very untimely transfer to a different school.  Autism, ADD and constant change is now equaling nervous moms every morning when we wave to her on the bus.

Our son is experiencing more anxiety than I’m comfortable with about school, and it’s not about his ability to learn.  He’s an award-winning rule follower (when not at home).  He’s a dynamite kid but the pressure he puts on himself to have flawless behavior in school is intense.

Put these two together and this means more phone calls from the school than I ever wanted in their entire elementary education, a care conference promotion to an early PPT and more bedtime pep-talks than I know how to manage creatively.

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.

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