Letter to parents

Dear Parents and Carers of adult children with disabilities,

I am not an expert, I am a mother. A single mother, a working mother, and the mother of all jobs – raising a child with a disability.

I am also a support coordinator for people with disabilities. I am passionate about our children’s future and ensuring that they are presented with every opportunity in life. I am just as passionate about supporting parents and families like ours as we make one of the hardest decisions of our lives – our son / daughter moving out of home.

My daughter Jemma is 24 years old. Jemma has Autism, an intellectual disability, complex behaviours and ‘drive your mother up the wall’ syndrome.

I am writing this letter because I don’t want parents and carers to continue to feel guilty about ‘putting their child in a home’ or feel like they are ‘giving away’ their child. This way of thinking is associated with old fashioned institution type models of housing and it’s a thing of the past.

Today, people with disabilities have the long awaited right to choose where they want to live and who they want to live with – just like anyone else their age. Individualised NDIS funding is there to support our children to live an ordinary life – just like anyone else.

So how does that change the way we feel about our kids moving out of home?

Part of me wants to wrap Jemma up in cotton wool and keep her safe at home for as long as possible, but the reality is, it’s her life – and her right of passage as a young adult to experience independence and live in a home of her own. 

Another reality is, we will not be around forever. My biggest fear is that I fall off the face of the earth tomorrow and Jemma gets put in an unsuitable group home that increases her anxiety and makes her really unhappy. That’s why it is so important to me that I plan ahead. I want to see her settled in her own home with a friend that she gets along well with. I want to watch her grow up and increase her independence to the best of her ability.

Jemma doesn’t have the capacity to achieve this naturally herself, so just like every other aspect of her life – it’s up to me as a parent to give her that opportunity. 

I was talking to my Mum about this recently and I said to her, ‘Mum, if you had of said to me when I was 24 years old – I’m going to find you a house to live in with your friends…’ – I highly doubt I would have said, ‘No thanks Mum, I’d rather live at home with you and Dad forever!’

But what about support? What about the fact that no one can take care of her like I can?

I say ‘fact’ because I mean it – no one cares for our children like we do – that’s just natural. The reality is though, once our kids leave home they learn to do so much more. As a mum, I still do things for Jemma that I know damn well she can do herself – it’s just what Mums do. Think 30-year-old adult child that still lives at home and Mum still does their washing. 

Working in the disability sector, I have the privilege of working with supported accommodation house team leaders. I call these guys the ‘mum layer’ of support. They are not substitute parents (we will always be the parent) but they do all of the organising that our kids don’t have the capacity to do. Then there are the support workers. These guys are amazing – they have the patience of a saint and are there to support our kids to increase their independence and to help them with anything they don’t have the capacity to do. 

One more thing that I want to acknowledge. I am only human and my patience often wears thin. I get frustrated over Jemma’s constant hitting of the walls and the repetitive ‘Chinese drip treatment’ non stop carry on in the mornings. At times, I have more patience than I ever thought possible, and then there are the times I lose my temper at the drop of a hat. I think about Jemma supported in her own home and realise that this will be eliminated. I know I drove my mum up the wall as a teenager and we had our share of yelling matches but once I left home, we became the best of friends.

So where does that leave us? 

That leaves us exactly where nature intended. The parent of an adult child who has flown the nest. Don’t get me wrong, it’s not going to be easy. It’s hard for any parent to let go when their child becomes independent and moves out in to the big wide world. It is especially hard when your child has a disability and you have supported them in every aspect of their life. It can feel like you are letting go of a child rather than an adult. 

Again, I am no expert and I don’t have all the answers. What I do know is this. I will do everything in my power to ensure that she has every opportunity in life, no matter how hard that is for me.

So if you only learn one thing from this letter, let that be that you are NOT ‘giving away or giving up’ on your child. 

You are giving them a future.

Yours Sincerely,

Sherryn Long