T: Why doesn’t Harry talk
M: He does talk with his talker
T: No, why doesn’t he talk like us with his voice
Okay. Deep breath. Here we go…
I’d been wondering when we might start getting more complex questions from Tallulah about her brother. Up until now, it doesn’t feel like there’s been much need to delve too deep. There have been a few comments from her, but all fairly fleeting. Harry and his way of moving, talking and being in the world is simply part of our family’s tapestry.
Since the day she was born, Tallulah has been surrounded by children with all kinds of different abilities. She’s come to therapy to expos, to kindy and school and I’ve always hoped that this big, inclusive world that we’re trying to raise her in will instill a sense of openness and kindness to all.
As wonderful as this varied and inclusive environment that we’re striving for is, I’m also aware that having a brother with a disability is going to have its challenges…
I can’t control the stares and comments from strangers.
I can’t control the words and actions of any future mean girls or boys.
I can’t control any feelings of grief, unfairness, responsibility or fear that she may experience as she grows.
But oh, how I wish I could.
All I can do, is educate and empower myself to support her and Audrey in their growth as individuals and as sisters to each other and to Harry.
So off I went to a Siblings Australia workshop run by Kate Strohm. And clearly, by the question at the start of this post, in the nick of time!
Sitting with a group of parents listening to Kate share her own experience of growing up with a sister with a disability and her knowledge from decades of experience as a counsellor and founder of Siblings Australia was not only incredibly informative, but also very important.
We invest so much time, energy and money into ensuring that our children with disabilities are supported, but what about their brothers and sisters? These wonderful children who often end up, as adults, in professions helping people and also as the primary supporter of their brother or sister after their parents are gone. But these kids can so easily be overlooked, not from negligence, but from the sheer magnitude of time that it takes every day to support their brother or sister.
I have been very lucky to receive incredible advice from therapists, doctors, nurses and other parents about how best to support Harry to reach his full potential physically, emotionally and intellectually. But advice on how to support his sisters’ emotional well-being ? Well, um… none.
And that’s why those 2 hours were so important for my learning and confidence as mum to Tallulah and Audrey. Let’s be honest, we’re all pretty much winging it through this parent malarkey at the best of times, but now I have a ream of notes on my phone filled with ideas for the emotional well-being of Tallulah and Audrey. Look, I’m hardly going to get this right all of the time or possibly even most of the time, but I’m armed with knowledge and that’s a pretty good start.
So back to Tallulah’s question about Harry’s voice. I was ready, I was drawing on the knowledge contained within that gold mine of notes on my phone…
M: No, he doesn’t talk with his voice like we do, his muscles work differently to ours…
…and as I was about to pull out some parent-who’s-been-to-a-workshop-and-is-feeling-like-an-expert gold, I get this from her…
T: Look mum, this bunny is a bag!!! (giggles and wanders off)
Well okay then.
So we may still be at the funny bunny bag stage, but this mum is ready to whip out some Jung-esque* brilliance when the time comes!
*Not quite, but I’ll do my best to remember and support her and her sister with the wonderful array of strategies I learned. Knowledge is power.