My Child Who Looks Different Will Stare at Other Children Who Look Different

My kid stares and whispers at other children who look different…

Yes, my child who looks different will stare and whisper to me about a child who also looks different. This to me is proof that we as parents hold the power and responsibility to teach our children value and acceptance for others. When my child points out or stares at someone different, I have choices on how to respond. One choice is to swoop in and remove my child from the situation. If I do this, I’ve succeeded in doing two things.

1. I’ve taught my child to fear and avoid different.

2. I’ve confirmed to the child he is looking at, that they are different and to be avoided.

Instead, I have learned to share and model love. I take my child’s hand and walk up to the other child and their parent and introduce myself. This way I am inviting my child to get to know the inside of someone, instead of just seeing the outside. My response is to continually educate my child about how we all have external differences and what we are on the inside is what matters.

Joel has Goldenhar syndrome. Years ago I taught within my home a child who had third-degree burns over 90 percent of her body. She was not supposed to live, but she did. Gigi was a fighter, and against all odds, she not only lived, she began the horrendously long road to recovery. Gigi was with me through her junior high years because school was tough socially and she faced many surgeries that required long hospital stays. I was always amazed at the responses of adults and children. Gigi was stared at because she looked different. In public, we were followed and pointed out. Before Gigi came to my home, I sat down with my children and told them what had happened to her. They nodded, and the conversation was brief. The first day, Gigi plopped into a chair in my dining room, and my children surrounded her. They asked to touch her skin and then asked about the accident. Gigi talked to them about it, and then it was never mentioned again. In that moment, Gigi had become a “normal” junior high kid, and that was that. They saw past the scars and differences and accepted Gigi because on the inside she was the same. You see, when children see things that look different, they are naturally inquisitive and perhaps a little fearful. This is because they don’t understand. As adults it is our job to help them not be fearful of things that are different like wheelchairs, or missing limbs, or cleft palates, or speech impediments, or hearing aids… the list goes on. As a parent of a child who looks different, I have to handle the staring because that’s part of allowing my child the opportunity to be fully included into society. I also can use the opportunities to teach my child how to handle staring. We will smile and wave, and most often people will smile back. I invite children to meet Joel. This is my opportunity to educate.

Gigi was amazing with the foster children in my home and also my two adopted children. She understood the children who came through my home had special needs, and she adored them. I will never forget the day Gigi quietly asked me if I would ever adopt a child who “looked like her.” She asked me this with hesitation and fear. She did not ask me this because she needed a family. She wanted to know her value and worth outside her family. I know deep inside she was afraid I would answer “no.” I hugged her tight with a knot in my throat and said I would be honored to adopt a child who had the strength, wisdom and courage she had. Because you see, I had been with Gigi for over a year and watched her bear the most painful surgeries and procedures you could imagine. I had held her small body as she shook with pain, and yet, she always had good things to say about others. Because of this pain and the long road, she had a depth of character you do not see in children her age. I no longer saw Gigi as a burn victim; she had become a burn survivor.

Unbeknownst to Gigi, this innocent question started a small flame within my heart. I spoke with my husband and we both decided we would adopt one more child…(never say one more child). We called our agency and told them we wanted to adopt another child. Within the day, they called us.

Our first exposure to our future son was not his name but his diagnosis. Goldenhar syndrome. And like every parent told a diagnosis, I studied it, dissected it and Googled the crap out of it. We were absolutely floored we were presented with a child with facial abnormalities. And without hesitation, Joel became our son, and our precious Gigi had prepared our family on how to parent a child who looks different.

We live in a world that esteems beauty and power. How do we teach character and love if our culture displays and idolizes perfection? I will never forget the family camp I attended with Joel the first summer he lived with us. I went to get a better understanding of how to help him with his hearing impairment as he grew. I met the most amazing kids who were hearing impaired. I attended meetings on cochlear implants, deaf culture and IEP help. The whole weekend I gravitated towards the high school and college-aged hearing impaired campers, and I was encouraged.

The last day the parents sat in a round table discussion as all the students were at fun camp activities. I listened as the parents cried and seemed crushed by their children’s disability. I could barely understand their pain because all weekend I had been so impressed by their children. I spend hours with high school students because of my job back home, and none of them were as incredibly thoughtful and caring as their children. And it finally dawned on me: they were most likely esteeming the outside. They were mourning the perfection. I understand now that character and true inner beauty comes at a cost. We cannot have growth without pain. We cannot see inner beauty with perfection. No, true character comes at a great cost. Our children might need to have hardships to appreciate what truly matters. I should not and cannot protect my children from pain. You know what happens when a society chooses perfection? What is the alternative to accepting differences and impairments? My son Israel lived the alternative and the alternative almost killed him.

The alternative was a 4-year-old with spina bifida who sat in an orphanage crib for 23 hours a day. A child who, because of a physical deformity, was cast aside. A child who was not allowed outside because “people don’t want to see that” and was hidden away in a little room for over four years. An innocent child who would probably have died before he turned 6 unless he was adopted. Israel is the perfect example of what happens when a society chooses to buy the lie of power, beauty and perfection. He was placed at birth in an orphanage because a culture decided he was not valuable. When we devalue the things that matter, we not only lose out, we destroy those things. When we applaud athletic prowess and beauty over character and integrity, we are losing. When we choose to accept the world’s standards, we lose.

As a parent to children with special needs, there is almost a desperate quality to my children being valued. I want people to look past the outside and see the absolute beauty on the inside. If you would just take a moment and introduce yourself, I’m sure you would agree. Beauty is as beauty does… true beauty is moral behavior, not external appearance. And if you look closely, you will see my kids are not so different than yours.

“Staring” is a topic that comes up so much in our community. Tell us about one unforgettable “staring” experience you or someone you love had that’s related to disability, disease or illness. Check out our Submit a Story page for more about our submission guidelines.

Goldenhar Syndrome

My Child Who Looks Different Will Stare at Other Children Who Look Different