>I was blessed to have the opportunity last night to speak to a group of about 60 teachers. I began by reading my poem, “I Dreamed”, then went on to discuss some of my experiences, passions and loves about raising a son with special needs. This is the text of my talk:
I dreamed he’d be born beautiful and healthy.
I dreamed he’d tell me that he loves me.
He tells me every day.
I dreamed he’d be bright and funny.
He is—his humor is wonderful.
I dreamed he’d ride a bike, catch a ball, and wrestle with his big brother.
He does and his brother loves it.
I dreamed he’d have big birthday parties with lots of friends and cake and presents.
He’s had six.
I dreamed he’d one day get on a bus and go to kindergarten.
He did it yesterday – my heart full of love and my eyes full of tears.
I dreamed he’d make us proud.
He has…..and he’s inspired us.
My child has Down Syndrome
I never dreamed that.
©Amy (Opalk) Cavaness 1994
I just wanted to share something I learned almost 24 years ago when my son with Down Syndrome was born. I didn’t know before his birth that he had this condition, and no one told me the night he was born. I didn’t notice…and that’s ok…and I wasn’t told til my pediatrician came the next morning, 12 hours after his birth.
I don’t remember who said this to me, but they said “It’s OK to grieve the loss of what you thought you had.” This was SOOO important for me to understand—to honor my feelings at that time—-I’d spent 9 months imagining a different child, and a different life for myself, and spent 12 hours bonding with a different child than what I thought I had. So although all my love, and caring, and dreams were for something I’d just imagined, they we a real part of myself. It’s what I thought I knew.
Sometimes we are struck with a similar type of shocking news—our dreams for our lives, businesses or our art—-just haven’t been born the way we thought they would be. AND, most IMPORTANTLY, we have been given a new gift…a gift of new potentials, new opportunities to learn and grow in ways we never imagined for ourselves.
I had no idea I needed this child and the jolt he brought to my sense of “normalcy.” I was smart. I had little patience for people who were slow. I had stuff to do and didn’t want someone slowing me down.
My first son was precocious. Started talking at 9 months old. He could name his gifts at his first birthday. (He’s a writer now!) At that time, if I’d even bothered to think about having a mentally slow person in school with my son, I’d have thought “Oh, I don’t want someone holding him back, slowing down the class”. I never gave a thought to the GIFT that a kid like Dean could be.
What is really important in our lives? The facts we’re tested on in school? Or values and compassion we learn to accept and practice? On our death beds, will we look back and think “Oh, I wish I’d have learned more facts in Social Studies” or might we look back on our lives and be grateful for the opportunities we had to make a little difference in someone’s life. Or might we regret, as I very likely might have regretted, NOT having the depth of compassion for others that we could have. I don’t want to regret limiting myself to be exposed to only one type of person. And how dull a life would that be, anyway?
In fact, I love diversity. I come from a privaledged and educated background. I’m married to a man who grew to adulthood without indoor plumbing. I look at his background as just a different culture.
I have hosted 3 foreign exchange students, for a year each, to learn about other cultures. I hosted the 1st girl initially as an act of compassion. I saw a sign at the pool that this girl would be landing in the US in a few days and had not been “chosen” by a host family yet. Could someone offer temporary housing til she was placed? I thought how terrible I would feel to be going to a strange land at the age of 16, knowing no one wanted me. I opened our home to her, then 2 more exchange students afterwards.
Dean was born into a family, into a neighborhood, into a community. He belongs to us. Why would a school stick him in a little room at the end of the hall? What message is that for the other kids? That he is not good enough? That he doesn’t BELONG with them? How is that right?
Here I think this is old news, but change happens slowly and I guess there are still a lot of people who need the concept of INCLUSION in their worlds.
Inclusion of children with special needs involves “curriculum adaptation”. You may be familiar with it. It requires some extra funding in schools to pay for aids to the teachers. But it seems like something that could be incorporated in schools even without extra funding.
Teaching our children isn’t completely dependent on money. There are opportunities everyday in our lives to show compassion, to teach equality and fairness, to give someone with special needs the opportunity to be A PART of their community and their schools.
We don’t have a special room for Dean at home. We don’t leave him out of events, even if we aren’t sure he’ll understand everything about what we’re doing. I am so glad his brothers had the opportunity to be very close to someone that’s a little different than themselves. I think they will be better men because of it. I don’t think they’ll want to just ignore the “little guy”, or judge someone as “not worthy”. And I believe the acts of kindness we show, small or big, will be repaid by the universe some day.
Some kids accel at academics, others at sports. Some kids don’t accel at all. And some have something to teach US. Dean was born with a true sense of God and prayer. He is the first one to put his arm around someone and say gentle words of comfort if they are sad. He does not judge people. He feels others joy and celebrates with them, whatever their victory. Like all of us, he gets annoyed with things and people, but his heart truly has no place for hatred.
I believe everyone in a community deserves to know each other, in all their diversity. Putting kids with special needs in a separate place is a silent message to everyone, students, faculty and staff, that they are not worthy. They are not enough. They have nothing to offer, but will be a distraction or hindrance to us.
We do not have to view people that way.
In the book “Quantum Creativity” Pamela Meyer talks about letting the boundaries free you. Dean’s birth could have been viewed as a big clamp on my life. I have chosen to see it as a chance to grow into a much better person than I would have been otherwise. I see his limitations in a way as making more room in his heart for the things in life that really matter.
And, by the way, the first words out of my mouth when my pediatrician told me Dean had Down Syndrome were, “Will he love me?” I remember the most important thing to me, that I was trying to ask, was if he would KNOW my love and reflect it back to me. Isn’t this what we all want in our lives? That others will know our love and our values, and reflect them in sharing our world with us?
As teachers you have an opportunity every day to be creative in your approaches to teaching and in the examples you set. I hope you will remember my story, and us.
I hope where you see limitations in people, in shools, in funding, that you wil open yourselves to creating possibilties for growth and understanding.