Home Recovery Parent Info Adult Info Special Interests Your Contributions E-Mail

As I See It -- A Parent's Perspective

[By a mother in Pennsylvania]

Recently while talking about the stress and whirl-wind activities of life with kids, one of my friends said she coped with her day to day life by thinking of people in the world who have it "worse off than me". She then looked at me and said, "Like you." Now, because I was shocked and totally unprepared for this comment, I stared at her like a deer caught in headlights. I assume that this mother of four under 5, looks at my life as "worse off" than hers because I have a child who has Down syndrome.

Never before have I thought of my life as being "worse off" than anyone else's. Is my life hectic? Yes - I have three children, a husband, a job, a home, and a very sweet little dog. I also have a few hobbies I like to participate in. My children play soccer, baseball and softball, take art lessons and gymnastics, and participate in after-school activities. Do I have extra work to do because I have a child with a disability? Absolutely! Not only do I have to deal with all the normal things kids do, but I also have to know all there is to know about Down syndrome, about Special Education laws, about my son's legal rights, about Estate Planning and setting up trusts, about how to talk with my daughters about their brother, about how to talk with neighbors about Down syndrome, and yes, occasionally how to talk with family members about my son. I also have to deal with the prejudices of others and I have to educate those people - a not so easy task.

But let me set the record straight. We are not "worse off" for having a child with a disability. Our eyes have been opened to people and issues we would never have been exposed to otherwise. As a firm believer in the old adage that things happen for a reason (not to mention, what goes around comes around), let me tell you a few of the ways this child has changed my life. I have become more patient, a trait that has surely affected my relationship with more people than just my son. I have learned tolerance, for those who have different abilities than I, for those who have different opinions than I, for those who look different than I. I have been exposed to a whole new world of people whom I never would have known if not for my son, people who spend their lives advocating for people with disabilities, people who struggle with every movement yet keep on moving, people who get knocked down time after and time yet get up and continue to try. I have met other parents who walk much the same path that I do and have been amazed by their strength and courage. I have opened a door to a whole new career for myself that I would never have noticed if not for my son. I have seen wonderful children learn about disabilities and say, "Okay, but he's still my friend." I have been deeply affected by my own daughters who look at people with disabilities like the rest of the world ought to. I have experienced a love so deep for this beautiful little boy that anyone who dares to cross him should be concerned about me. I am absolutely a better person than I was 10 years ago - without a doubt.

Now, having said all that, would I trade my life to remove that extra chromosome and give my son a chance at a "normal" life? Of course, I would. Most parents in my situation probably would. But don't look at me - or any other parent of a child with a disability, if I may be so bold as to speak for all of us - as "worse off". Our children are gifts to our lives and enrich us in ways no other parent could ever imagine. I don't want to be your mechanism for coping and I also don't want or merit your admiration. I am just a Mom, hopefully a good one, doing what I have to do for my kids. What I want for my family and especially for my son and my reason for writing this essay, is for you to look at him through the eyes of acceptance, not pity. He is a beautiful, charming, sincere young man who has much to offer his friends and family. Instead of looking at people who have disabilities with sorrow or pity - look at them and see what they do bring to you. Look at each person for what they can offer, not for what they can't. Make our community a welcoming place for all people. Learn what you can do. Seek out people who can help you understand - look to non-profit human service agencies for guidance. In my role as Community Relations Coordinator for UCP Central PA, it is my purpose to be there and answer your questions. But you have to ask those questions and you have to be willing to accept the answers. As I see it, my family is not "worse off" than yours; my family is different than yours. And like yours, my family is beautiful.

Home Recovery Parent Info Adult Info Special Interests Your Contributions E-Mail