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Becoming bulletproof

November 1, 2016
Maria Smaldo Spencer , MOV Parent

I often describe entering "a new normal" that surfaces when you are raising a child with a disability. It's a phase of life that only special parents can relate to. Typical families don't ever get to experience this-in the beginning, it's frustrating and you wish your family wasn't chosen for this path, and it's easy to get jealous of those who don't have to create this new normal. Then, when you're on this special parenting journey for awhile, you realize that being in this new normal has given you the ability to overcome anything.

The new sitcom, Speechless, is about a family that lives in this new normal. It is about a family whose oldest son is a person with cerebral palsy; he uses a wheelchair for mobility and a communication board to speak. He has two younger siblings and they live with their parents.

A conversation between the younger brother and the dad in a recent episode defines how this new normal is a privilege-the younger brother is complaining to the dad about their lives not being normal- The dad replies, "Why do you care about what other people think? Other people's opinions are nothing. What's not nothing is when a doctor tells you there's something wrong with your kid. All the things he's never gonna do-and it's a nice, long list. But look at your brother-he's great-he's smart, he's funny. So now when something happens, it's like-what else you got? Bring it on. Normal seems good, but guess what? We're not normal. We're better.we're bulletproof."

My prayer this month is that no matter what disability has redefined your normal, you will be proud of the fact that it has made you bulletproof.

We're all bulletproof. We've acquired a thick exterior that is always ready for anything because we know what it means to be in survival mode for long periods of time. Our special survival mode involves researching everything that may be a possible light of hope in our child's life-and being "on call" for anything at anytime. At first, it is uncomfortable and scary-it is a foreign feeling. But after awhile we get used to it-it becomes our way of life, our new normal. From the moment a professional first told us our child was differently-abled, we began to change from the inside out. We have learned how to endure so many things that typical parents never have to learn-like tolerating people's stares in public, or having a bag packed for a hospital trip that may happen at any moment, or going years without a full nights' sleep. Since we have climbed so many mountains, we are the definition of what it means to keep on keeping on. Our children have taught us what really matters in this life. Their needs come before anything, and because of that, we are able to see the beauty at the top of each one of those mountains. We can see all the little things in life that people take for granted-like the balance it takes to walk across a room, or the beauty in the ability to hear spoken words.

Along all of our unique journeys, we have gained an invincible armor that has prepared us for each next challenge our child has to face. Because I truly believe we were chosen by God to parent our special children, this armor isn't made for just any parent. It's exclusive design can only fit those of us that have been through special battles. Hold your head up high and be proud of the fact that thanks to your child, you are dressed and ready for anything that may come your way.

Maria Smaldino Spencer is a special mom, special needs consultant and a center supervisor administrator at CDI Head Start of Mahoning County in Youngstown. Contact her at helpandhopeconsulting@gmail.com

 
 

 

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