Dealing with difference
Families come in all shapes and sizes; here’s how to be sensitive
AS PARENTS, we all want our children to be happy and healthy: ten fingers, ten toes and a big smile. The truth is, every family faces different challenges, some more obvious and unexpected, for others more personal or seemingly mundane. But every family has a story to tell, and everyone deals with challenges differently. Here are some insights into what parents wish everyone else knew about being a family that is considered “different”, or who are facing unexpected challenges. HE IS NOT BEING NAUGHTY, HE HAS ASPERGER’S “Ben just doesn’t understand certain social cues, those cues that we all pick up without even realising it. He has Asperger’s syndrome,” says mom Wendy Bowley. “What may come across as naughty or inappropriate behaviour, or a lack of emotion, is just him not understanding the situation properly, and this leaves him overwhelmed and anxious. He is not being naughty, he is just scared and confused. And he knows it – he tries so incredibly hard and he gets so upset when he gets it ‘wrong’. My heart goes out to him because he works twice as hard as other children with his endless therapies and interventions, but he never complains and always tries his best. I don’t think people think about what it might be like to be a parent of a child who sees the world differently – I know that I didn’t before we had Ben – but what we, and Ben, need is compassion and kindness, not judgement or thoughtlessness.” THINK BEFORE YOU ASK QUESTIONS “It is the intrusiveness with which people ask questions about Liam, the way in which they speak over him, don’t talk to him, the way in which strangers come up to us in the middle of a lunch or shopping centre and say, ‘What is wrong with him?’, or ‘Why does he look like that?’ that I find very, very difficult and makes me very angry,” explains Alice Lions. Her son Liam has a rare auto-immune condition called alopecia, in which his hair follicles are attacked by his immune system, leaving him with a patchy, almost bald look. “As a psychologist, I understand that people ask questions to try and make sense of and understand it, but usually those questions are at Liam’s expense.”
“Children with alopecia are otherwise very ordinary, healthy children and grow and develop just like everybody else, so on the one hand I wish people knew that, and did not treat him with kid gloves,” explains Alice.
“But I also wish people knew that children with alopecia are particularly vulnerable to depression, and that Liam carries a heavy load for a child his age and sometimes a quietness is very helpful. The gaping certainly isn’t.” DON’T SKIRT AROUND THE ISSUE “It is about being open and honest with everyone, your children too, and all the people involved in their lives, so that everyone feels empowered to manage it,” says Tracy Prowse, mum to Cat, who was diagnosed with verbal dyspraxia and underlying developmental coordination disorder (DCD) when she was 18 months old. Dyspraxia is a problem with the planning and processing of movement, and affects anything to do with output such as talking, writing, physical coordination and motor skills. “So although it’s not at all intelligence-based, to many Cat will come across as ‘stupid’ because her expression and movement is slower, harder, uncoordinated, jerky and awkward,” says Tracy. “She actually has above average IQ, she just has to work much harder to get her message out.” Tracy adds: “I also wish parents acknowledged the impact of having a sibling with challenges has on the rest of the children in the family. It can be really tough always coping in your sibling’s shadow. I want people to know that Cat has been my teacher, and made me a
better person. I am softer, more flexible and forgiving because she is my child.”
THERE IS NO SUCH THING AS NORMAL “I took it for granted that my children, and other people’s children, were just healthy. I don’t take that for granted any more,” says Jess Gretchel, a mom of three, whose youngest, Timo, wears a hearing aid. “You assume everyone else is okay, ‘normal’, and from the outside it does look like that, but the truth is everyone has some or other issue that they are dealing with – we just don’t always see them. So, since finding out that Timo has a hearing impairment, I am much more aware and sympathetic to any challenges people and families are facing, because the truth is everyone is facing something in their lives.”
BE SENSITIVE TO THE DIFFERENCE IN EVERYONE Claire Horn and Rob Mckay adopted their third child, Shaun, when he was 8 months old. “While I appreciate people’s honesty, some of the questions people ask really throw me; that and the fact that they will ask really personal and candid questions when Shaun is standing right there, like he is not listening,” says Claire.
“They’ll ask questions like: ‘Do you know his mother or father?’ Um, yes… very well, actually: I am his mother, but no, I don’t know his biological mother. ‘Do I know anything about him?’ Yes, I know everything there is to know about him. In terms of his genetic profile, the genetic mix in my birth children is so different and unexpected that not ‘knowing’ anything about Shaun’s genetic profile doesn’t bother me at all. ‘Have the other children accepted him?’ Absolutely, in the same way that any child is put out by the arrival of a sibling, and then learns to accept them and life carries on. ‘Do you love him like you love your other children?’ Of course I don’t love him like I love my others, but not because he is not my biological child, but because he is a different person. I love each child individually.”
Although through their professions as a physiotherapist and a teacher, Claire and Rob have always been sensitive to the challenges families face, Claire says she is now more sensitive to people’s stories and the way they tell them: “I will always offer my own story before asking about someone else’s.”
“I also want people to know that once you adopt a child, you realise that it is just a child, a child who wants to be loved,” says Claire. “All those questions and fears fall away, nothing else matters. So, if you think, for even a split second, that you could adopt a child, then go with that. In fact, I think everyone should adopt a child.” WHO IS DISADVANTAGED? NOT MY CHILDREN… Migo Manz, whose two children with his life partner Gerhard were born via surrogacy, says, “We are just two people who love each other and created a family – just like any other couple who love each other and decided to spend their lives together. We deal with the same issues as all other families: raising kids with as much love, attention and focus on values as possible.”
“Being a parent is just amazing (hard too), no matter how you became one, and a child is just a child, no matter how they were born. We don’t really care about ‘biologically related’; this is pure vanity for me,” says Migo.
“If I care for a child from the second it sees the light of this earth, then it is my child. I do wish people knew that so much psychological research shows that children born into or raised in family situations that are ‘different’, or those that have faced difficulty, are more resilient, are better able to cope with life, and are more successful, fulfilled adults – they are not the disadvantaged ones.”
No matter what challenge or issue a family is facing, or you think a family must be facing, the theme is the same: be sensitive; there is no “normal”; and as author Brad Meltzer says, “Everyone you meet is fighting a battle you know nothing about. Be kind. Always.” YB