I want to get something off my chest, and it’s been eating away at my heart for the past five years. As a parent of a child with disabilities, I have heard a lot of insensitive comments. For the most part, I try not to dwell on the things that bother me. However, there is one statement that makes my heart pain, my stomach drop, and I feel a slight rage when I hear the words. When I first meet people, there is always that awkward moment because I realize I am going to have to tell them about my son. My son is complicated with multiple life-threatening diseases and autism. I know people are going to feel sorry for him. Additionally, I know they will only see him for his disabilities. I hate that people feel sorry for my son.
His story is never as easy as saying that I have a child that is almost five, loves dinosaurs, and loves to watch Dino Dan. When people meet him, there is no way to hide his feeding tube and medical equipment. There is always this tugging at my heart regarding what to share with them about my son.
Every time, I meet someone new, I remind myself I can educate others about my child. However, I know that by sharing that the stranger or friend is going to say the dreaded three words.
After we finish talking, a gasp will fall out of their mouth and tears fill their eyes.
Next, the dreaded words come, “I AM SO SORRY.”
As I hear the words, I try to look away. I look down or fidget with my hands. I’ve never found an appropriate response to these words.
A sense of dread, sadness, and hopelessness fills my heart. The person’s reaction means they no longer see my son for his personality. They only look at his limitations and disabilities. Then people classify me as a “Special Needs Mom.” They stop viewing our lives like anyone else. We become pitied individuals that have no identity outside of his diseases.
Next, the questions come about everything single detail of his life. I realize that not everyone has experience interacting with a child with disabilities. Internally I understand they mean no harm. However, I hate that they want every last detail about his life. I don’t think they even realize how intrusive the questions feel.
Listen, I’m ok with people that ask questions about our journey. However, I’m not ok that my son’s life is a learning experience for everyone else. Sometimes I want him to be a kid. I want people to see him for his loving heart.
Additionally, I’m not ok with people feeling sorry for us.
I have never, ever felt sorry for my son. There are days I am frustrated that he struggles with his health. No child should be in the amount of pain he faces daily. I want him to have the best life. To do that, I can’t focus on the negative.
In the past five years, my son has taught me more about love than anyone has in my entire life. Yes, he has had a lot of struggles. However, I am pretty sure all kids have adversity they face. Despite what some parents want us to believe, no child is perfect.
When we start focusing on the limitations of others, we stop seeing their possibilities. Children and adults with disabilities turn into charity cases for society. I don’t want my son to be a charity case.
As his mother, I refuse to look at charts that outline his delays. I know he will learn at his own pace. My husband and I focus our energy on giving him the best life possible. We have worked to accommodate his physical disabilities with equipment that enables inclusion. He has an entire team of doctors focused on making sure my son can navigate the world with ease.
Please don’t feel sorry for any child because they have a disability. Disabilities are an opportunity to kick adversity in the butt. My son is stronger than anyone realizes. He has a fantastic perspective and empathy for all the people in his world.
Can you imagine people telling you how sad they were for you every day?
I can. The sadness and pity destroy our happiness.
My son is no different than any other child. He wants to learn, grow, and explore the world. Like any other child, he wants to hear he’s smart, kind, and loved.
Instead of pitying children with disabilities, we need to support and love them. Start telling them how valuable they are in the world. Remind these kiddos that they are smart, loving, and capable of accomplishing anything. Their self-esteem should not be contingent on what their bodies can and cannot do. Their self-worth should be rooted in the person they are within.
Also, don’t look at a families’ experience of raising a child with a disability as a hardship.
Yes, there are challenges in raising a child with disabilities. However, there are challenges in raising any kid period. I am not burned as his mother because he is differently abled. I am enormously lucky to have a kid that is loving, smart, and full of sass.
Start seeing a child for what they are…A Child.
Don’t be SORRY.
Be happy the child has a loving parent willing to help them.
Feel grateful that kids with disabilities can live a life of inclusion.
Stop seeing the disability.
Focus on their ability.
Please don’t feel sorry for my son.
I’m not sorry, and he isn’t either.