My son Oscar was born with lots of challenges. He has Goldenhar syndrome, meaning he lives with both visible and non-visible differences. He was born with a cleft lip, cleft hand, a small ear, scoliosis and a hole in his heart.
His “little ear” and “special hand”, as he proudly calls them, are just part of what makes him unique – what we call his superpowers! He also wears a bone-anchored hearing aid to help him hear.
Like most seven-year-olds, Oscar is full of energy. He loves going to the park, playing on his iPad and is a big fan of Sonic and Dog Man. I’m so proud of him, especially considering how tough things were at the start. He was very poorly when he was born, but as he’s grown, he’s taught us so much about resilience and strength. He takes everything in his stride and just gets on with life. Hospitals, appointments and surgeries are part of our everyday life, and he takes it all in his stride. In fact, he’s so familiar with the hospital staff that everyone knows who he is!
Oscar does occasionally encounter unkind comments from other children about his differences, but his friends stick up for him and have his back
As a mum, I was incredibly anxious when Oscar started school, and the impact Goldenhar syndrome might have on his experiences. I thought he might be picked on for looking different. Thankfully, the school has been very supportive and inclusive from the start.
Before he started reception, the school did a home visit and made real efforts to understand Oscar’s needs. Staff have also completed deaf awareness training, and equipment has been provided to help him access learning. Oscar also has Special Educational Needs (SEN), so has needed 1-1 support over the past few years to meet challenges. But with the right help, he’s made huge strides.
At classroom level, it was great to see teachers educating the other children about differences and being kind – in a way that didn’t single Oscar out, but instead gave him the opportunity to share his story in a way he was comfortable with.
Perhaps thanks in part to the support and awareness work his teachers have done, Oscar hasn’t had many issues making friends. He’s lucky to be surrounded by a wonderful group of classmates, who look out for him and support him. Most have embraced Oscar’s differences with curiosity and care. A classmate even lent him a pencil to use as an improvised finger so he could count to ten, which was such a sweet and thoughtful gesture.
“Oscar was born with visible and non-visible differences – but what shines through most is his resilience and joy.”
Oscar does occasionally encounter unkind comments from other children about his differences, but his friends stick up for him and have his back. We’ve taught Oscar to respond to curiosity with confidence, usually by simply saying, “This is how I was born.” Most children accept this without question and move on. Sometimes, though, the curiosity can feel overwhelming – especially when it’s persistent, even if it’s not meant to be unkind. But overall, any incidents have been minor and handled really well by those around him.
We talk positively about differences at home, always highlighting that everyone is unique in their own way. We also make sure that Oscar always has the right support physically and emotionally to help him. Whether that’s his hearing aid, clothing that’s easier to manage like easy zips, or just regular reminders that his differences are part of what make him incredible.
Books have been really helpful in normalising visible differences to him. We’ve found some fantastic stories about limb and facial differences that he can really relate to. One particularly special moment was when Oscar met a man with a prosthetic ear who noticed his “little ear” and made him feel truly seen in a positive way. That kind of recognition meant the world to him. Overall, lots of positive reinforcement is helping him build confidence in who he is.
Oscar sometimes wishes he could be “normal,” but we talk about all the brilliant things he can do because of his differences.
To other parents who are nervous about their children starting school: try not to worry! I know this is easier said than done. Today’s children are growing up in a much more diverse and accepting world, and that helps. Introduce your child to others who look like them. There are brilliant role models on social media and in books.
Children can be naturally inquisitive, but that doesn’t always mean they’re being unkind. We’ve found that simple, matter-of-fact responses go a long way. When Oscar says “that’s how I was born,” most children accept this and move on.
It’s also so important to build a strong relationship with your child’s school. Be open and honest about your child’s needs, and work together from the beginning. That partnership can make a real difference.
And finally, talk openly and positively about your child’s difference. It’s part of who they are. Oscar sometimes wishes he could be “normal,” but we talk about all the brilliant things he can do because of his differences. Like stretching his special hand really wide, taking off his hearing aid when things get too loud, or even squirting water through his cleft gap (which he finds hilarious). Those are the things that make him him, and we make sure he knows how amazing that is.
