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Stop and enjoy the scenery

February 3, 2010
By Maria Spencer

When people ask me "How is your daughter doing?" my most recent response has been, "better than me on most days." Because when you really stop and think about how our kids think and feel, we carry so much more of their disability around with us than they do. For most of our kids, they have never known life any other way.

Whether your child's disability is medical, or in the area of their cognitive, communication, physical or adaptive area of development, we all must remember that their limitations are only part of who they are. Their disability does not define them as a person.

In my daughter's world, her muscles don't always appear to agree with what our definition of mobility is, but to her, it is just the way she moves. She doesn't even realize that anything about the way she walks, holds a pencil, or runs is in any way different than other kids. I truly think that in part, she thinks and feels that way because we have never made her feel that she was any different.

Sure, because she is seven years old, she now knows the reason she goes to therapy appointments weekly, and why she has more doctor's appointments than other children. But when she inquires about these things that are part of her daily routines, we don't make a big deal out of them; they are just things she needs to make her body stronger. And our explanations are enough for her. She is very satisfied with her life the way it is she knows no other way.

But as special parents, it's not always that simple for us. We carry the burdens of our child's disability around with us in our minds. As moms and dads, we naturally want the best lives for our kids, and we know that the challenges they have today will, in some way, limit their lives as adults. We must respond to their daily struggles with consistent confidence to ensure they don't feel any different on the inside.

The way I respond to the things that my daughter has to deal with because her muscles are tight, is vital to her ability to accept herself. Even if I am having a bad day of worries and fears in my mind, I have to be consistent in the way I react to anything that she does that may be "non-typical." And in the process of being conscious about the responses I give her, my level of acceptance and peace regarding who she is as a person naturally increases. I feel the longer I have been on this journey, the easier this becomes - it's all part of the process.

It is a freeing, wonderful feeling. Her determined spirit shines above any limitation that I may see in any given moment, and that is what I choose to focus on. The more I make the conscious decision to see all that she can do, the things that she struggles with seem non-existent.

I know we all have more mountains to climb than most parents, but we must focus on the amazing scenery that surrounds those mountains in our child's life. I've realized that the one reason our kids do better than us as a whole is because they are not looking to the next mountain that has to be conquered - they are just enjoying who they are on this journey. They're not worried about a missed turn or a bump in the road, they just see themselves for who they are taking one step at a time, the best way they know how.

Let's agree this month not to expend all of our energy focusing on how steep the mountains are, let's instead enjoy the strength and beauty that shines all around the mountain - all of the things that make our kids unique. Unique not because they have disabilities, but because the extraordinary human beings they are, and the truly special parents they are making us.

Maria (Smaldino) Spencer is the mother of Jonah and Olivia, who hemipelegic cerebral palsy. Maria is the Family Support Specialist for the Mahoning County Help Me Grow program.



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