When Blair started school last January I became the mum of the child with special needs. The one in the playground with the little girl in the stroller who didn’t get out and play and who didn’t speak. No one ever asked me anything about Lyla but the other mums and dads in the playground always made a special effort to say hello to Lyla and to chat with us both.
Half way through the year I decided it was time to talk to Blair’s classmates about Lyla and to explain why she doesn’t run around the playground at pick up time like their younger siblings and why she doesn’t answer when they say hello. So one Friday morning, Lyla and I were special guests in Blair’s class. The whole class sat on the mat at the front of the class while Lyla and I talked to them about cerebral palsy and what it means. We explained that Lyla’s arms and legs don’t always do what her brain wants them too because her brain doesn’t work as well as their brains do but that she is just like them and loves doing all the things their little sisters and brothers like doing. We had her big PODD communication book and we showed them how it works. we let them try her specially designed scissors, paint brushes and markers and they asked lots of questions, like what would happen if I helped Lyla stand up and then let her go! In the end we chose not to demonstrate the answer to that one.
There is nothing wrong with asking questions, kids tend to be the best at this because they generally have no filter and there is rarely any malice behind anything they ask. We lose this openness when we are adults. We feel awkward, we don’t want to upset someone or we don’t know what to say and we worry about embarrassing ourselves or the other person.
Recently I was asked by a friend how to ask a new acquaintance about their daughter who is in a wheelchair. She didn’t want to ask out of nosiness or sheer curiosity, she wanted to get to know this person and her family better and she wanted to explain to her children thoughtfully and respectfully why the little girl is in a wheelchair. She wanted to demonstrate acceptance and respect to her children and to start a proper friendship with this person. In my experience having ‘the conversation’ with someone about Lyla and cerebral palsy, is the only way to start a meaningful friendship with someone new. Until then it is the massive elephant in the room.
I can’t speak for all parents obviously and I am the first to admit that not all parents of kids with special needs like to be asked about their child’s challenges and just like all parents I have crappy days when the last thing I want is anyone to look at Lyla and I sideways let alone ask us anything. Usually it’s ok to ask questions, so long as you use your common sense to think about how you ask and what your motive is for asking. Find a connection, explain that your friend’s daughter has cerebral palsy and you were wondering if their child has cerebral palsy too. I come from a place where I don’t think very many people ask questions to be a dick or to cause offence. Their tone or the language they use to ask might not come across very well but rarely do they mean to be hurtful. In my case I wish more people asked so I could get that bloody elephant out of the room!
Our little friend Lexi, (you might remember her from The Story of the Gold Sneakers), recently started childcare for the first time and her clever mummy wrote a little letter for the childcare workers to put in each of the children’s bags to take home and introduce Lexi. The letter explained that Lexi has cerebral palsy and that she wants to play all the games that they play, she’ll just have to do things a bit differently and she is really excited to get to know them all. Boom, elephant gone*. (Gosh that sounds terrible!) The doors are now wide open for parents to ask questions and to get to know Lexi and her family properly without letting Lexi’s disability get in the way.
Acceptance doesn’t mean ignoring a disability or pretending it doesn’t exist for fear of causing offence. For me, acceptance is seeing the person as well as understanding the disability. Lyla’s disability is a part of her, always has been and always will be. It certain doesn’t define who she is and it doesn’t make her any less of a 3 year old girl but it is impossible to ignore if you really want to know Lyla and our family. Accepting Lyla for who she is means that you have to accept the disability as well. And you can’t accept something if you are afraid to ask about it or if you are uninterested in it.
So ask away, all questions are welcome, come one, come all!
Love Cara x
*No elephants were harmed in the writing of this story