For those of you that haven’t read my blog posts before, my daughter, Erin has autism. She is happy, whimsical, magical and a big bright light that shines in every room. But she doesn’t talk, she doesn’t interact or play with the other children, in fact you will normally find her alone in the corner doing her own thing.
As a mother, you can’t help but feel a sadness that she doesn’t yet have “friends” in the typical sense. Nor does she seem to enjoy the simple things that others take for granted – a bed time story, games, arts and crafts! We often can’t go to the usual classes, parties, fairs or shows that most children love. There is a sadness that she’s missing out on the fun that her peers can enjoy, and if I’m honest with you (and myself!) a sadness that we don’t get to experience those things with her as parents.
I don’t yet know whether she doesn’t participate because she doesn’t want to, or if it is that right now she doesn’t know how to. So, it is my job to keep helping her to be part of these experiences, and encourage her, if and when she shows an interest.
I know that the sadness I feel is my own. Despite me feeling she misses out, she’s happy, and who am I to dictate or choose the things that should bring her happiness? It’s my job, as her mother, to fill her life with the things that light her up, help her to feel safe, accepted and loved. And that is more important than anything else!
I’m also aware that although she may not talk like the other children, or interact with her peers, they still love her. They see her as an equal, no less. They are not yet tarnished by society’s views of “normal”, or by other’s expectations or perceived notions of perfection. They meet her with unconditional love, openness and acceptance.
I am grateful to have a close relationship with the mums from my antenatal group. These people have known my daughter since she was born and love her for who she is. Yet I’ve still always wondered what their children really thought of Erin. Did they choose to have us over for play dates because of a sense of duty or did they like seeing her even if she didn’t join in with their games?
I remember one of the mothers telling me one day that her son had watched Sesame Street, and had seen the episode with Julie – the show’s first character with Autism Spectrum Disorder. She said that as soon as he saw it he said “…she’s like Erin!”. When she told me this I sobbed in the middle of kinder gym. This boy didn’t know what autism was, he doesn’t ask why Erin doesn’t speak to him, or play with him. He just accepts her. He sees similarities not differences. This boy had the openness and ability to see Erin yet have no desire to change her. It just melted my heart.
Another of the girls in our antenatal group shouts loudly to anyone that will listen, that Erin is her best friend. Even though Erin blanks her, has never spoken to her, or ever even played with her. But Erin is her friend and she is one of the few children that Erin has ever hugged (another day that made me cry). When Erin said her first word in front of her, this girl celebrated with her, and encouraged her to keep going, keep trying, and say something else. She knew how amazing that moment was for Erin and was her biggest cheerleader.
Countless parents come up to me in the playground telling me that their children name toys after Erin. She clearly holds a special place in their hearts – and I have no doubt they will take care of her as they all grown up together. They applaud her wins and her progress, even though they’ve done these things for years.
I just wonder when does this openness dissipate? At what stage do these differences become less acceptable? The reason I ask this, is that I am already starting to see the switch. Erin doesn’t integrate yet in nursery, she plays alone, in the cloakroom, which the other children aren’t allowed in. She’s still learning how to join the others and play, but there is already a segregation of sorts, as she tries to fit in to the rigid structures of our education system. In allowing Erin the space to be herself, a divide is unintentionally created. More recently I’ve heard the words from children at nursery “Erin is bad”. I know they don’t mean this – I know they don’t really understand. But I also know that the precedent is being set…at the age of 3…. that her attempts to “fit in” are being perceived as “bad”. Not because she is – she really isn’t – she spreads love wherever she goes. But she also needs the time and space to do her own thing but the current “system” doesn’t allow her that. So what do we do?
With the structures and norms that exist, openness becomes more challenging. We expect certain behaviours, reactions, life choices from kids and adults as we get older. What if at 3, kids were able to play more freely to allow those with additional needs the opportunity to catch up, to fit in. Does it really start now? I can’t help but wonder what would happen if we became more aware of these expectations and tried to break them down a little.
Try it yourself, be aware of your thoughts/assumptions of everyone you meet and try and catch them. If we were all much more like children in that respect, I think we would have a much more inclusive and embracing society.