Republished with written permission from Katie Paulson
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 multiple disabilities and medical issues, I have heard a lot of comments made to me that are from well-intentioned friends, family, and strangers. For the most part, I try not to dwell on the things that bother me, but there is one statement that makes my heart pain, my stomach drop, and I feel 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, a feeding tube, and he’s autistic. 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. I know that if the person I am speaking to ever meets my son it will be clear to them something about him is different. While some of his disabilities are invisible other aspects of him are very visibly different. There is always this tugging at my heart regarding what to share with them about my son. On the one hand, I’m proud of him, and I love everything about him. On the contrary, I know he has a feeding tube that is visible, we use a wheelchair when we are out, and he has behaviors that perplex the passing stranger. Every time, I meet someone new, I always try to remind myself it’s a way for me to advocate, share and educate others about my child. I just know that after I tell them about my son the dreaded three words are going to come out of their mouth.
A gasp will fall out of their mouth, and their eyes will drop and fill with sadness. Next, it comes “I AM SO SORRY.” As I hear the words, I try just to look away, look down or fidget with my hands. I’ve never found an appropriate response for these words the entire time I’ve been his mom. A sense of dread, sadness, and hopelessness fills my heart because I know that their reaction means that I’m no longer just a mom. I am now, in their eyes, a special needs mom to a child that is disabled. Our pleasantries no longer focus on my interests, world topics, or everyday conversation. A sea of questions begins to spill out of their mouths about every single thing you can imagine. I realize that not everyone has experience interacting or being around children with disabilities, and I know the questions are to help them better understand our situation. However, sometimes I just can’t get past the ire that is inside my heart when I realize that now my child is being pitied by a complete stranger. I realize that these feelings aren’t entirely rational, but these feelings are an aspect of parenting children with special needs many of us feel.
Listen, I’m ok with people that want to pray for us, ask questions about our journey, but 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 has to go through so much difficulty in his development. Other days I may feel emotional about the diseases that are ravaging his body, but I never actually feel sorry for him or pity him. In the past five years, this child has taught me more about human resilience and love than anyone has in my entire life. I watched him sit on life support clinging to life, and I watched him beat the odds and survive a critical illness. As he grew, we were told all about the limitations he would experience by all the professionals. Doctors said he would likely have significant learning disabilities, developmental delays, and they weren’t confident he would ever talk. In the early days, professionals classified him as cognitively delayed, and therapists weren’t sure he understood anything said to him. None of those things were ever easy for me to hear, but none of that ever stopped me from pushing him to learn and succeed.
See, just because my son has labels of medically fragile, autistic, and hypotonia, it doesn’t define his heart. His heart is tenacious, loving, curious, and determined to learn despite all the obstacles his physical body puts in the way. Yes, there are things he cannot do, and there are aspects of his life that are more challenging, but we have found ways to help him thrive. He had trouble eating due to low tone and global dyspraxia - so we had a feeding tube placed. Walking was challenging due to low tone in his feet and core - so we got him orthotics and a wheelchair for long distances. He has trouble with using his hands to manipulate objects and write - so we teach him how to use an IPad instead of focusing on penmanship. Instead of looking at what he cannot do, we focus on how we can improve his quality of life. We find ways to accommodate and adapt the world around us so he can feel included. Even though he was supposed never to talk, after almost four years of intense therapy he spoke. He began walking at almost 19 months, and despite his gross motor delays and dyspraxia, we teach him to jump, run, kick and throw. Sure, it’s not perfect, and to the average person, he will look different than an average child his age. But he is kicking some serious butt at this thing called life, and he doesn’t need anyone to feel sorry for him.
Please don’t feel sorry for any child based on what their bodies can and cannot do. Children with disabilities have a desire to learn and grow, and they have a will to find a way. They need encouragement, love, and support to reach the goals they want to achieve. We need to support these children to reach their fullest potential and to help them not be defined by what society has labeled them. Their self-esteem should not be contingent about what their bodies can and cannot do, but their self-esteem should be rooted in the person they are within. Simply put don’t look at families experience of raising a child with a disability as a hardship. Yes, it is hard to raise children with disabilities, and yes, our lives look different because of how we accommodate their needs. But they are still a unique human, with a heart, a mind, and a spirit that have great things to offer the world. Don’t be SORRY, but be happy the child has a loving parent willing to help them, care for them, and find ways for them to have a life of inclusion. My son and other kids like him are counting on all of you to be kind to them, not focus on their deficits, but celebrate their achievements. Please don’t feel sorry for my son. I’m not sorry, and he isn’t either.