If you’ve been in the special needs arena for any length of time, there are certain words that quickly become part of your lexicon. They are words that professionals, well-wishers, friends, and family use often. And we do too. Because we need them.
Advocate
I first heard this word in the NICU as I was filling out the forms for early intervention. My son was born ten weeks early, would go home with a tracheotomy, and later be diagnosed with cerebral palsy. A care worker said to me, “Honey, I know there’s a steep learning curve and I’m here to help. But in the long run, you’re going to be the best advocate for your child.” I’d never heard this word in relation to a person. I’d heard it in my role as teacher, as in “we are advocating for this policy to be adopted.” But to BE an advocate was new for me. It is no longer new. I advocate every day. Mine is not a small megaphone. When you have a nonverbal child, you cannot afford to be quiet.
Independence
This is another word to which I cling. Every decision I make is towards growing my son’s independence. What assistive technology do we use? Where do we move to get the best education for him? Do we sell our house with two stories and not very handicap-friendly or do we remodel? When and how do we try to potty train? Do I fix soup for dinner or stick with something he can feed himself? All of these are moves toward his own freedom. We want him to have a life independent from ours and we will do whatever we can to make that happen.
Empathy
I wish empathy were genetically inherent. I wish it need not be taught. But it is not inherent, and so I try to teach the kids in my son’s class to talk to him and not around him. I let his siblings race through the house in his wheelchair and then I don’t help when they get stuck behind the kitchen table because I want them to feel how hard it is for him to get around sometimes. I want the world to see my son and feel, even for a moment, what it might be like to want to say so many things, but the words are trapped. And then I want them to make friends with him and learn how he communicates because there is so very much there if you give yourself the time to look.
Advocate, independence, and empathy are vital to our children’s lives. It’s why these words continue to float to the top of our collective consciousness among all the other millions of words. But I would like to add one more.
Joy
To advocate for empathy and independence is an active thing. We fight for our kids and we are fierce defenders of their future. But sometimes we don’t need to fight. Sometimes I catch myself lying on the floor with my son, watching cartoons and mindlessly stretching his legs after a long day and he will reach over and grab my hand and say “mama”—one of the few words he can speak and there it is…JOY. I cannot cultivate these moments on my own because they are beyond my control. These moments of joy are gifts, as are our children. Every parent I know who has a child with special needs carries around a collection of these moments. We store them up and they are what keep us moving forward. It is the joy that makes us better fighters and teachers and friends.
I’m going to start using “joy” more often as I speak about my son. I want that word to be in my top five when I think of him. Because he is joy. He is an unexpected flash of light in an otherwise dark room. He is the song that comes on the radio right when I need it. He is the breeze that cuts through the heat. He is joy.
Jamie Sumner is a special needs mom, author and blogger.
Discover her new book, Unbound: Finding Freedom from Unrealistic Expectations of Motherhood.
Read her blog, The Mom Gene.
Follow her on Facebook.
