My girl turned five last month. FIVE. It feels like just yesterday I sat on the couch (crying. constantly.) with my tiny newborn in my lap – the one who had been plastered with a diagnosis right from the get-go. We didn’t have much of an idea what Down syndrome meant other than what the back of my “What to Expect” book told us, which was something along the lines of growing up to live in a group home and doing menial tasks in a factory. I remember sitting up in bed with the book in my lap, bawling that first night home after reading that. I also remember throwing that book right in the trash.
Because screw that book and screw everyone and everything that would ever tell me my girl wouldn’t grow up to do anything she wanted to.
I’ve spent the past five years living with that mindset as day by day, my girl has made it our reality.
So to have to walk into her kindergarten IEP (individualized education plan) meeting and sit around the table with a bunch of school people, explaining all the things my girl CAN’T do… well.
It goes against every fiber of my being. But I do it ’cause I have to.
- understand more than very basic directions
- write her name legibly
- be trusted to stay in line with her classmates
- eat without literally choking herself from taking gigantor bites
- be trusted not to flee from the playground… or come back in when she needs to
- tell me what she did today (well she can but the story’s the same every day and I’m pretty sure she’s not Bill Murray)
- Use the bathroom independently
- Dress herself independently
She needs speech therapy, occupational therapy, physical therapy, and what feels like a completely individualized education.
I worry. A LOT. that she will sit in class completely bored because she doesn’t understand what she’s supposed to be doing. Worse – that she won’t be at all bored because she doesn’t understand but that she will be a huge distraction because she’ll be off doing her own thing instead. And that she won’t get very much out of her education.
So we fight.
Fighting is what I’ve been doing, day-in and day-out since 2010. Because while all the parents of the normal kids are getting ready for the first day of kindergarten by purchasing backpacks and new outfits, I’m talking to anyone and everyone about how best to fight for my kid. And then constantly following up on things like how transportation will work, who will have their eye on her every second so she doesn’t wander off… Then there’s the dreaded how long before her classmates realize she’s different. And the super dreaded how long before SHE realizes she’s different.
Can’t dwell on all that for too long, though, because I’ll go insane. So I force myself to return to my regularly scheduled mindset (do people really say “mindset” outside of the corporate world?) of focusing on what she can do. I spend time with her, teaching her how to draw the letters of her name. Encouraging her to tell me how her day was. Showing her new moves on our swing set to help build her core (which is a lot stronger than mine, letmetellyou.)
And cross my fingers that it all works out.