Sharing care for my son is hard. But I'm learning

At 27, Dimity's son Stu moved into his own home.

Stu, who is autistic and requires substantial levels of support, has been living in the purpose-built house with 24/7 care for almost two years.

The transition has been an opportunity for independence that Stu craved, and a shift in responsibilities for mum Dimity.

But like for many carers, there is an invisible caring load that remains.

Dimity still recruits and trains support workers, meets regularly with a team leader, oversees Stu's support program, advocates for him and acts as his nominee.

"It's the hardest thing to do, to share that load. Even with other people in your family," 67-year-old Dimity says.

"To trust another person to take on that responsibility."

But Dimity is learning to share Stu's care with others.

These are her words.

A determined young man

Stuart is my fourth child. I always say it was as if I had three children and then I got 10, because of the energy that he had.

He's an individual. There can be a tendency to think all autistic people are the same. And that is not true.

He has his own temperament and personality.

He is a very determined person. He is very perfectionistic, very focused. He loves cooking, crafting and creating things.

He micromanages; he observes. He has learned to knit simply by watching me knit.

On top of that, he struggles with issues of his autism: being non-verbal, illiterate, issues with emotional regulation, a need for predictable routines and rituals, problems with sensory overload, minimal social awareness, and intellectual disability.

Planning for the future

When Stu lived with us, it became apparent that, like all young men, he wanted more independence. He wanted to "divorce" his mother, as most sons eventually do.

It's the goal of every parent for children to reach independence; it was no different from my other sons.

He became resentful of my interference in his life.

We started to consider the process of creating a life for him where he had more control, more of a sense of agency over his own life.

Of course, in the background I still manage it, but it's not in his face.

In the couple of months prior to him actually moving, it was frenetic because I had a million ducks in a row.

I kept worrying that the degree to which this was working depended on me.

What would happen if his support workers weren't there? All sorts of worries started encroaching.

I actually had a medical event related to the stress, and from that time forward I started planning for a future of becoming somewhat redundant in his life.

I needed to work out how he was going to be supported when I'm not here. In a positive way.

Articulating my invisible load

Now I negotiate a lot with the disability support agency we work with, working to expand their responsibilities and what they are willing to share. Also forward planning for Stuart’s future, including other people in his circle of support, like siblings and extended family, for them to share caring responsibilities.

I'm developing a working document that explains in detail everything I do as Stu's mother and advocate and manager.

When he lived at home, I was definitely like the boss.

Now I look to his care team to guide me, too. It's not just me teaching, guiding and managing; I'm part of the team, and we're learning together the best ways to support Stu.

I look after grandchildren for three half-days a week, on top of what I do with Stu.

It's busy.

As his mother, my job is to look after him. No-one else is ever going to love him like I do.

And while being a carer is a lot of work and most of my life has been devoted to caring for my children and now my grandchildren, that's OK. That's my job.

What I'm trying to work on by working with a circle of support, creating the working document, is the space for people in that circle to then volunteer to take on that responsibility.

The running joke is "If I end up under a bus, would you be willing to take on this role?"

While I cover it all now, there will come a time when multiple people need to cover it.

Our relationship has improved

I remember one night talking to my husband and deeply realising and feeling the loss of Stuart from my home. And really having a big cry about it.

That was hard.

However, my relationship with Stuart has improved vastly since he moved into his own home.

When home life is challenging, often overwhelming, it's easy over a period to start to diminish the degree you feel or engage in affection for someone.

To have relieved both of us of that has been such a gift.

Now when he visits, he sits next to me and holds my hand. He puts his head on my shoulder. He touches my cheek. He cuddles me.

I've always been devoted to him.