My son has a craniofacial difference due to Pfeiffer syndrome, a rare genetic condition that causes his eyes to appear unusually large. When other children first notice him, sometimes they react in a negative way. When this happens, the children’s parents are frequently unsure of how to respond. While there are plenty of pamphlets on how my husband and I should handle a situation like this, there’s not a lot of information for the other children’s parents.
In the spirit of observing Craniofacial Acceptance Month this September, I wanted to provide some guidance on how other parents can be an allies to those of us who have children with facial differences. I specifically want to address how you can help should an uncomfortable situation arise when our children meet. My hope is that we can work together to transform a potentially awkward encounter between our children into a friendship.
Related Reading :: Craniofacial Awareness Month | My Son’s Story
The most common thing children do when they see my son for the first time is to stare, sometimes for a seemingly endless amount of time. Some children also make comments and/or ask questions. I truly believe most children do not have cruel intentions, and are curious or surprised by my son’s facial difference. Still, the questions range from innocent and curious to hurtful and cruel.
Then there are the true bullies who laugh, tease and taunt. A few kids have even run away from my son, calling him “a monster.”
If your child meets mine and has an unfavorable reaction, I beg you not to ignore the situation. The easy path is to not get involved and hope the situation will resolve itself without parental support. The majority of the time this won’t be the case. There will always be at least one parent involved: me or my husband. And we would prefer the other child’s parents to work with us to remedy the situation.
My husband and I don’t feel incredibly comfortable correcting the behavior of strangers’ children. It’s uncomfortable. More importantly, in these situations we need to be focusing on our child and the hurt he may be experiencing.
Also, please don’t get angry with your child, hush them and drag them away if they react unfavorably to mine. While it removes the immediate discomfort for you, this approach doesn’t foster acceptance for my child and others like him. If you stick around, we might just be able to work things out and make a new friend for both of our kids.
I know confronting these situations head-on is probably the most emotionally challenging path to take, but it is the one that will make you the best ally to the craniofacial community. If it seems overwhelming, stop and think for a moment of the anxiety many craniofacial parents deal with every time we do something as simple as taking our children to a public space. Many times we leave choking back our own tears while drying our children’s.
If you are committed to becoming an ally to parents like me, here are a few easy ways you can help foster acceptance between our children.
The easiest thing you can do if you catch your child reacting negatively to mine is to simply ask them to say “hi” to my son and ask him his name. This makes him a human – it gives him a name. It also opens up a dialogue between the kids.
If your child has questions about my son’s differences, we are happy to talk about them. Don’t be angry at your child for their curiosity. Most parents of craniofacial kids prefer questions over staring and assumptions. “Tell me about…” is a great way to open up dialogue between our children.
Also, by asking questions, you give us the opportunity to talk about how EVERYONE is different – we have different colored skin, eyes and hair. Some kids wear glasses. Some need special medical equipment. Some are short. Some are tall.
At some point, though, we need to stop pointing out differences and start talking about how we are the same.
CALL ATTENTION TO SIMILARITIES
Drawing attention to the things our children have in common is a great way to get our kids to start talking. As parents, we need to work together to shift the conversation to our children’s similarities. It could be as simple as pointing out that they are wearing the same color shirt. The hope here is that your child sees beyond my son’s facial difference and realizes how much they have in common.
MODEL GOOD BEHAVIORS
If you treat my son like you would any other kid, your child will see that and hopefully do the same. It’s simple.
I have noticed many parents let their kids play in public places with no supervision. That’s an amazing luxury. One that my husband and I will never have. We will always have to be checking in to make sure that our son isn’t being bullied.
If you want to be a true ally to parents of children with facial differences, you need to check in on your kids, too. Never assume your child’s not the one with a shocked or confused reaction to a child with facial differences. Your child may not be a bully, but we may need to work together to get them playing.
The best way to truly be a friend to parents like me is to proactively teach your children about physical differences. Not just craniofacial, but all types of physical differences. Normalize the heck out of differences because it is “normal” to be different. We all are. Don’t wait until we have an uncomfortable encounter at the park to teach tolerance.
Read your children books and watch movies that have characters that are diverse. Make sure some of those books and movies have diverse characters, but diversity isn’t the point of the story. This shows children that differences are always around us and a part of everyday life.
If you do this, maybe when our children meet, yours will see mine and accept him without hesitation. Then we can skip all of the uncomfortable steps and move on to playing.