Tuesday, October 3, 2017

31 for 21: Spectrum

It is 31 for 21 season.  31 posts for the 21st chromosome.  Another Awareness.

As annoyed as I am with the concept of Awareness (you've all seen me say stuff on this), I like to at least make an attempt at the blog posts for Down Syndrome Awareness, because people like to learn during the "fun season".  Walks and festivals and celebration make learning easier and more fun.

When I started this blog, I was sad that there weren't more blogs on older kids.  As my own child grows older, I understand why there are less.

It's hard to discourage people.

It is hard to say, nope, no massive progression.  Again.  My kid, while making huge progress for HER, is still functionally non-verbal, because she is still struggling with word sounds and word progression.  She still speaks like she is a walking emoji and text acronym, mixed with debilitating stutters, and you have to really work to make sure you know her conversation subject matter, so any of it can make sense.

We won't even discuss tying shoes or self care.

It is hard to know that the damage Down syndrome does is a sliding scale with a spectrum of impact, and that sometimes, no matter the intervention and therapy, it's your child at the lower end of the spectrum.  It is hard to tell people with younger kids, that not only is it true in theory, but you have a super cute proof living in your house.  I'm not one to offer false promises, but I also don't want to be a Debbie Downer...constantly reminding them that sometimes intervention doesn't "fix" everything.  That you don't even want it to, you just want your child to not be trapped in their own silence.  While at the same time watching while others send their children off to real colleges, and real jobs...and not wanting them to give up hope.

It is hard to tell people who don't understand, who have kids that function within the spectrum of normal, that nope, your kid still isn't growing up.  That while they cry that their babies are growing up, yours isn't, and that is a thousand times sadder.

I have no real news, but I am going to try to offer her favorite subject matters.  So if you know us, you can understand her passionate subjects.  And if you don't know us, you can take a page out of this blog, as it were, and ask the parents of kids that you know that are trapped in their own worlds, where the doors are, so you can find a way in.  Because despite the static activity at our house, we still have the childhood magic of still believing all the fairy tales, of limitless imagination, and of not allowing reality to take any fun out of your day.

We believe that tiny creatures that live in plastic houses, have actual feelings and adventures.
We believe in Santa and fairies and Disney endings.
We believe in costumes that power imaginations.
We believe that crowns make supper more delicious.
We believe trampolines and swimming pools are still viable exercise programs, but don't call it exercise.
We believe sharks and crocodiles and sea monsters live in local lakes and do our bidding.
We believe that colored gloves transfer super powers.
We believe in anything we want.
Reality is completely negotiable.

And really, I prefer supporting the boundless creative, especially in the face of looming disability.  Because it is more fun, and doesn't change the narrative.  If you don't look into the face of a 2 year old and kill the magic, and just enjoy the ride, why can I not do the same with Elise?  So I do.