At 27, Dimity's son Stu moved into his own home.
asserted
son → move → 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.
asserted
who → require → years
The transition has been an opportunity for independence that Stu craved, and a shift in responsibilities for mum Dimity.
asserted
Stu → crave → Dimity
But like for many carers, there is an invisible caring load that remains.
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that → be → carers
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.
asserted
It → recruit → load
Even with other people in your family," 67-year-old Dimity says.
"To trust another person to take on that responsibility.
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Dimity → say → responsibility
"
But Dimity is learning to share Stu's care with others.
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Dimity → learn → others
I always say it was as if I had three children and then I got 10, because of the energy that he had.
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he → say → that
There can be a tendency to think all autistic people are the same.
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people → think → ?
He has his own temperament and personality.
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He → have → temperament
He loves cooking, crafting and creating things.
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He → love → things
He micromanages; he observes.
asserted
he → micromanage → ?
He has learned to knit simply by watching me knit.
asserted
me → learn → ?
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.
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he → struggle → overload
Planning for the future
When Stu lived with us, it became apparent that, like all young men, he wanted more independence.
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he → plan → independence
He wanted to "divorce" his mother, as most sons eventually do.
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sons → want → mother
It's the goal of every parent for children to reach independence; it was no different from my other sons.
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it → reach → sons
He became resentful of my interference in his life.
asserted
He → become → 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.
asserted
he → start → life
Of course, in the background I still manage it, but it's not in his face.
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it → manage → face
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In the couple of months prior to him actually moving, it was frenetic because I had a million ducks in a row.
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I → sign → row
I kept worrying that the degree to which this was working depended on me.
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this → keep → me
What would happen if his support workers weren't there?
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workers → happen → ?
All sorts of worries started encroaching.
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sorts → encroach → worries
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.
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I → have → life
I needed to work out how he was going to be supported when I'm not here.
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I → need → ?
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.
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they → articulate → what
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.
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them → plan → responsibilities
I'm developing a working document that explains in detail everything I do as Stu's mother and advocate and manager.
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I → develop → mother
When he lived at home, I was definitely like the boss.
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I → live → boss
Now I look to his care team to guide me, too.
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I → look → me
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.
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we → teach → Stu
I look after grandchildren for three half-days a week, on top of what I do with Stu.
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I → look → Stu
As his mother, my job is to look after him.
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job → look → him
No-one else is ever going to love him like I do.
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I → go → him
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.
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that → devote → children
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.
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people → try → responsibility
The running joke is "If I end up under a bus, would you be willing to take on this role?"
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you → run → role
While I cover it all now, there will come a time when multiple people need to cover it.
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people → 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.
asserted
I → improve → home
…and 8 more, not listed.
The Aporia