I stood up for my son today and it felt good.

As a blogger, sometimes I feel like I talk the talk rather than walk the walk. It’s one thing to tell the world from the safety and comfort of my couch about respect for people with disabilities and it’s another thing entirely to tell it to someone’s face. I’ve written before about my difficulty in finding the right words when people use inappropriate language but I’m bigger and uglier now. Today I decided to step up.

I took Wade to the park to feed the ducks, today. I’ve been so proud of him lately. His communication and comprehension has been coming along in leaps and bounds since I’ve been home more and we have started using more sign language. We got out of the car and wandered over to the lake with our bread in hand. I was telling him about the ducks and he his signing “duck” all the way along the path as well as waving to every passer-by. After watching the ducks peck around his feet and listening to the sweet sounds of him trying to say “quack quack!”, we headed over to the play equipment. It’s such a great park because the designers have included many features for kids with disabilities. There are sensory areas and sign posts with the names of objects including the sign language and Braille. The swing area has a bucket swing for babies but it also has a full body chair swing with a harness for kids who need support of their whole body to enjoy it. I particularly like the slides as there is no ladder to climb. The slides go down a steep hill and the kids climb the hill to get to top.

Brimming over with pride I spent ages watching Wade scramble and scrabble up the hill to the top of the slide then get himself up to the top and sit down. He couldn’t quite work out how to shuffle his little bum off the edge so I helped him and then he went down the slide all by himself. He got to the bottom and signed “more” so I turned him around and told him to climb up. Up again he went then wandered off when he got to the top. He walked over to a guy to say hi and look at his shoes then stood next to a bush and experimented with stepping into the shade, then in to the light, then into the shade again. He let the bush brush past his hands to see what it felt like then wandered back to the top of the slide again. I was lost in the moment as I watched him looking out at all the people in the park and wondering what he was thinking about….

….then from behind me I hear “That’s the retarded swing for people like you!!” Continue reading

Finding the right words

One of the unexpected joys of being a parent is that you always have something to talk about when you are stuck for chit-chat topics in social situations. Usually you will find yourself talking to another parent and conversation flows readily about each other’s kids. The rules of small talk between parents who are strangers strictly dictate that you must, without fail, compare notes on when each other’s child started crawling/walking/clapping/toilet training. If your child is not doing those things at the appropriate time then conversation usually turns to tips/techniques/advice/anecdotes about how to get there.

I can only endure so much of this before I feel obliged to mention that Wade has Down Syndrome and will do things more slowly than a typical child. I also feel obliged to mention it before the poor unsuspecting stranger in front of me really puts their foot in their mouth, I mean, I’d want someone to tell me! I feel ridiculous standing there keeping this highly relevant piece of information to myself but I always hesitate bringing it up because on the one hand, Wade is so much more than his diagnosis and I don’t want him to be defined by it. On the other hand, it’s still a huge part of who he is and a huge part of who I have become as a parent.

Continue reading