My son stays home most of the time. He rarely goes to the store or to restaurants. He no longer attends a brick and mortar public school. This is done by design to protect our son’s health and because of his desire to stay away from public places. However, sometimes he must go with me to the store when no one else can stay home with him. He needs to go to doctors’ appointments. On rare occasions, he asks to go somewhere, as he did on a recent vacation that included a tour of a stadium and sports hall of fame. When we are in public, we are met with disapproving looks if he has a meltdown or begins to cry; when it all begins to be too much for him. I am aware of every stare when someone doesn’t like that my family parks in the handicap parking spot. We have even endured countless rude remarks about our son, his strange behaviors or his need to ride in the back seat of our double sit-and-stand stroller.
Kari Horton is a 35-year-old mother with four children. Her 10-year-old son has Autism, Sensory Processing Disorder, Mitochondrial Dysfunction and other medical issues. In Horton’s community blog, For the Love of a Boy
, she’ll share her family’s stories in hopes of connecting with and encouraging other special needs families.
The problem is most people can’t see that something is different about my son. So, they assume he is “typical” child and expect him to act that way. Most never stop to think there could be issues behind his actions. Even after speaking with him, it is evident that some strangers still do not realize something isn’t quite right. Parents of special needs and disabled children use a different set of eyes than the rest of the world when looking at other children. It isn’t hard for me to pick out the other child in the store who has Austim and/or Sensory Processing Disorder (SPD). I am highly aware of the child using sign language or wearing a hearing aid. But for most people, they see a somewhat average looking child and never consider what he or his parents may be going through.
An out of stock item at a store can cause an instant meltdown. My son expects order and consistency. When these demands aren’t meant, it isn’t something he can brush off. It is a huge deal to him; he feels as if his whole world has been shifted on its axis. That seems dramatic, I know, but it is that dramatic to him. So, he cries or yells, as we would if something horrible had happened to us. There is no simple or short way to explain what is happening to him to the lady down the aisle shaking her head with a scowl on her face. She just sees a 10-year-old child throwing a toddler fit. She doesn’t see that emotionally, he is still a toddler. I would also like to think that she doesn’t realize how much hurt she causes me.
We have a handicap parking hang tag for our car. My son’s neurologist suggested we get one after he painstakingly described to the doctor how far away we had to park in the parking garage and the walk across the hospital to get to the appointment.
Since my son has low muscle tone and intolerance to heat and cold; the doctor told us that he would benefit from parking in a handicap spot. He isn’t able to walk far without feeling very fatigued, and a hot or cold day completely wipes him out. He shivers after drinking a cold drink with dinner and doesn’t sweat on the hottest day outside. So, we have a hang tag now, and we use it (even when people look at us funny). They see a healthy family getting out of the car and not a disabled boy that has trouble walking across the lot. He doesn’t have a wheelchair or even braces, so they can’t imagine his need.
We also endure faces being made at us when he sits in the stroller at a zoo or museum. He does his best to walk like the other big kids, but sometimes he just can’t. So he will sit in the stroller and rest while the others go to brush the goats or look at an exhibit. I try to shield him from the passing remarks and looks, but sometimes I think he notices the judgment around him, even if he doesn’t fully understand it.
We sit apart from the other families at the doctors’ offices and labs. We try to keep him from touching the toys and books. We bring him a drink so he won’t use the water fountain. We try to keep his contact with other sick people, and therefore germs, at a minimum. We do this because every time he visits one of the children’s hospitals, he develops strep throat no matter how careful we are. His weakened immune system is a net for every sneeze and cough. So, we have heard people say we should just let him play when they think we are being too strict, as well as whispers that we are stuck up and keeping him away from the other children. If we let him play, as we have done in certain places, we are met with comments that he is too old to play with certain toys. As the saying goes, we just can’t win.
My son does not have any profound physical birth defects, he does not use a wheelchair, and he can speak and hear. So, to the general public, he does not seem disabled or sick. He has what is referred to as an “invisible disability” – one that most people don’t, can’t or won’t see.
If you look closely, you will see physical markers of his disability. His head’s circumference is larger than most adults’, he has a very thin body and his rib cage sticks out because his muscles are too weak to hold it in place. You may notice his eyes water when the sun or a light is too bright for him. You may be unfortunate enough to see him vomit if another child opens a can of play dough (he just can’t tolerate the smell). If you are perceptive, you will even hear how he speaks with a large vocabulary well past his years and that he is repeating the morning’s sports news to you (likely word for word). If you ask, you may be amazed at his ability to tell you what team won every Super Bowl, including the score and date. Upon closer inspection, you will see a few scars that mark the surgeries he has had or the numerous injuries he never seemed to feel. The one on his eyebrow is from when he ran full speed into the corner of a chair without a single tear. The one on his leg was a rather deep cut, but all he noticed was that he tore his jeans. These are all clues that he is special in some way. Yet, they are rarely enough to gain him any compassion or understanding. Do not misunderstand that last sentence – I wish my son received compassion and understanding, but I never want anyone to feel sorry for him.
So, we are doing what we can to make sure other children like our son are treated kindly. We think that starts at home with our own children. One lesson my husband and I strive to teach our children on a daily basis is not to judge others, because there is no way to know what they are facing in life. We share stories from the news and our lives that teach them empathy. When they complain over something small, we try to remind them of the worries others around the world have. When my son isn’t treated fairly, we try to understand the other person may be facing a struggle too, and maybe that has blinded him or her from seeing our troubles. If I handed out cards that listed every aliment my son has, would people treat us differently? I would like to hope they would. More than that, I hope there is a day when handing out a card isn’t necessary to receive kindness from a stranger, no matter how my son is acting.
I believe that day can happen sooner rather than later if we all try a little harder to be less judgmental and more understanding. When you see a parent struggling with an upset child, ask if you can help or simply say, “I understand” or, “It’s okay.” Those words have so much power in them. A smile or a hand on a shoulder could mean the world to a person at that moment. Letting a child tell you sports trivia while standing in line may earn you the title of “the nicest person I ever met in a store” by a special kid. I know this to be true, and I have a few stories of amazing kindness I will share with you at another time. I think the bottom line is that whether a person is visibly disabled, invisibly disabled or maybe just having a bad day, everyone deserves a little gentleness and acceptance.