Our Version of Normal

I'm seriously thinking about having business cards made for myself with Chief Executive Advocator (CEA) printed under my name to hand out at school meetings and as part of my signature on emails since that seems to be my main job these days.   The past few months have been a flurry of IEP (Individualized Education Plan) and/or transition meetings for 6 of my kids.  Transitions for the upcoming school year include Lily and Dasha going from elementary to middle school, the twins graduating from high school and heading to college (still advocating though!) and Leo starting Kindergarten. I'd be lying if I didn't say it was fairly stressful keeping it all straight right now.  It's hard enough keeping track of one kid, but right now we have 5 kids with IEP's and a lot of changes coming up this fall for which I've been trying to make sure everything is tweaked perfectly (I wish) and everyone has all of their needed supports in place.  In other words, I'...

As my 5 year old son and I walked out of gymnastics last night where he takes a private 1/2 hr class, it was cold, damp and a bit windy in the looming dusk.  Freezing, I excitedly said "Let's run to the car Leo!" and took off gripping his hand tightly.  Beside me, I heard this stilted little voice say, "Let's run.....fast." "Fast."  I glanced down in surprise to see a slight smile gracing Leo's lips as his messy mop of wavy hair is blown back to reveal his pretty features on his sweet face.  (Almost too pretty for a boy, we often joke.)  And so we ran fast to the car, holding hands, laughing all the way.   I'll cherish that moment because while it's a simple story to share, the significance of hearing Leo respond to me showing he comprehended what I asked and then followed through with the suggestion is certainly wonderful. That he added the word " fast"  (twice!) is HUGE in the communication department! It's mome...

Every single day I hear references of someone being on the spectrum.  Obviously being on the spectrum refers to being on the autism spectrum, but for a while now I've come to believe it might behoove the Down syndrome world to have a reclassification of Down syndrome into a Down syndrome spectrum.   Per Wikipedia:  A spectrum is a condition that is not limited to a specific set of values but can vary infinitely within a continuum. There are so many variants of how Down syndrome manifests itself in a person.  Cognitive and physical abilities can be affected in differing degrees based on many factors.  One significant factor is the many associated health conditions that individuals with Down syndrome have an increased risk of being born with or developing at some point in their lives.  Some will have significant health concerns requiring surgery and/or other treatments, while others may only have minor issues common to Down syndrome needing...