by Emily Downie
I have a stepson. Actually he is not technically my stepson yet as we are not married, however, I think of him as my own. He is 7 and will soon be turning 8. He also has Down syndrome. This means he was born with an extra chromosome. This special and unique trait gives him all sorts of gifts and wonderful qualities.
I have known Manny for a little over 4 years but feel as if I’ve known him forever. We are a blended family. This arrangement is not without its challenges of integrating children, ex-spouses, grandparents and extended family. We are getting the hang of it and so far it is working for us- the future is looking bright.
When his dad and I got engaged, he asked me if I was prepared for what would lie ahead for me and the challenges of a special needs child. Was I prepared? Was I ready to take the plunge? Not only would I be sharing my life with another person but also extending my arms to two other children. Having had one marriage that didn’t work out, I was somewhat cautious and full of trepidation about going into a marriage with this extra challenge.
What I have learned from Manny is more than some people can learn in a lifetime. Most of all he puts life in perspective for me. I have learned (or am learning to) not sweat the small stuff, to laugh and to be silly. Perhaps the greatest lesson of all though is to have patience and to never underestimate his ability or his wisdom.
Manny will be going into Grade three next fall and finds school challenging. With all of its expectations and rules he often struggles to make sense of it all. The teachers work with his parents and so he progresses and learns how to manage his frustrations. His two loving parents and the community we live in all work together to support him. In all of the stores he frequents and activities he goes to, everyone knows him and loves him. He is a child who exudes enthusiasm and always has a zest for life.
Manny is a straight shooter. I always know where I stand with him. If he is upset, he lets you know. As his dad puts it “he is no politician” and however he feels is always very obvious to us all. The flipside is the joy he brings and that unabashedly loving side to him. His innocence will always stay. There will be no jaded, cynical side to him as he gets older. He will always believe in Santa, the Easter bunny and the Tooth Fairy.
The innate ability to spot a person or sense someone who may not be kind to him is always present. Society has progressed but not everyone is comfortable with or caring to a special needs child. Manny has learned over the years, sadly, to avoid people like that and seems to be able to keep to those who will love him.
He is not a sedentary type of child. He is a terrific swimmer and can stay in the water for hours. This often allows his dad to sit for a few minutes. Manny doesn’t sit much himself and can keep us all going most hours of the day. We all have to keep our eyes on him as he has been referred to as ‘a flight risk!’ When you least expect it or turn your back for a second…whoosh and he’s gone. One day last year we were at home and couldn’t find him anywhere. We called his name and no sign. Moments later we found him tucked behind the living room curtains…his feet were the telltale sign. There he was with a tub of ice cream in his hands, furiously scooping it into his mouth before his imminent discovery.
Manny is a child who loves routine and we all work together to provide that for him. At the dinner table, we all take turns talking about the best part of our day. Manny directs us all to raise our hands when we speak and gets very excited when we give answers that he likes. He is the teacher at our dinner table- if he doesn’t like the answer, well, we know about that too! Following dinner, it is theatre time and all of us (I have a son and Manny has an older sister) sit down to watch the show. Manny writes, produces and directs the show- usually involving his stuffed animals doing various dancing routines. He is very engaging and his creativity and imagination knows no bounds. After the show is over we all clap and applaud our budding superstar. Manny usually bows and then hugs us all. He loves affection, loves to snuggle and his hugs will melt your heart.
Our family is like most other families in many respects and shares the same philosophies, rituals and traditions. To the viewer on the outside it may seem stressful at times but I wouldn’t trade it for the world. What our family has that others don’t is a person who can dissipate a heated moment into laughter, who can teach us not to judge people before you get to know them, to have compassion and kindness for someone who is not like them and who may struggle to make themselves heard. We have a child who can help society to become a better place and to stop and appreciate the gifts and qualities this unique child has to offer.
I hope as Manny grows older that he continues to receive love, kindness and acceptance by this world. I have learned so much from him and for that I will be forever grateful. For he has taught me that when I see a child with special needs I look at that child to see what he or she can teach me. To smile and have a look into his or her world and all of their remarkable gifts they can bring to us. Today as I walk through a mall or go to a park and see a child with these unique traits, I count my blessings that I took that leap and got to know and love Manny.
