metamorphosisContributor
32yo daughter with autism, adhd, depressive anxiety, avoidant personality, social phobias and is transgender
In seeking support, I need to paint a picture of my daughter rather than simply stating her diagnoses:
In her good moments, when she lights up, my daughter is simply amazing. She's funny, insightful, observant, highly intelligent, much more skillful than would be apparent, engaging, with heightened sense of smell, tastes, hearing and other perceptions. She's wonderful company. She'd rate very high on Elaine N. Aron's "Highly Sensitive Person" spectrum. Her autobiographical memory is high (with the downside that she also seems to remember many of the less than comfortable things that have happened to her since she was a small child.)
When she's not "lit up", which is by far and away most of the time, she's resistant to many things, spends most of her days lying in bed, barely looks after herself at all, needs frequent reminders to do many of the things in relation to self-care, barely moves for days on end.
Since March this year, she has given up smoking (though still uses nicotine in the form of spray or gum), and under supervision given up a range of medications that were no longer serving her well. These are big and good changes.
She's very socially isolated, gets easily overwhelmed (not surprising with her sensory situation I suspect), and for the last week she's been using an exercise bike for about 10 minutes.
I've been slowly working on helping her form small habits of care and maintenance, including feeding herself healthy food regularly, doing some shopping, basically I seem to be showing her how to be an adult again (if she ever actually became one). She's extraordinarily talented at staying under the radar so it's been hard to identify what has been happening with her.
I'm no longer young, so am thinking ahead. I'm also trying to make sure I'm not enabling her to keep behaving the way she does. I've found ways to speak to her, that involve suggesting and encouraging her, that have a reduced effect of triggering some highly resistant behaviour pattern. It's worked for lots of things including putting out and taking her meds at night and having her morning ones ready.
Everything she does seems to exhaust her, and nearly everything she does takes a long time to get done. For example, her bedding hasn't been washed for several months, and personal hygiene poses challenges. Though these have been slowly getting better.
She gets stuck at various points in her planning and decision-making and then doesn't move forward for sometimes weeks, other times months.
For years I've been trying to pin down where the specific issues lie. Our main sources of conflict, and the area where I'm at the end of my tether, are around aspects of how stuck she gets. One of the major areas occurs around medical interventions. Recently it took her 2 months to get her support worker to make a GP appointment to get prescriptions for the medications she still needs. This was after she'd already run out. Then the prescriptions didn't land with the pharmacy, and it took another 2 weeks or more for that to get sorted. In the end I insisted in drafting some emails so that the situation could move forwards.
Every time she ends up running out of her medication is a time of conflict. It is the most consistent source of deeply debilitating interactions. The lack of some of these meds change her behaviour to become passive-aggressive and defiant (never that far from the surface at the best of times). She's run out of one script today. She was theoretically working herself up to go for the 3 minute walk to the pharmacy all day. When I did press her to go get it filled, an hour before the pharmacy closed, she did start behaving that way. This cycle can go round and round for weeks. If I don't intervene nothing happens (for weeks on end). She's had an important form to submit, which may actually help the situation, for 3 weeks now, and hasn't done so and won't let me help. If I do press her then I'm to blame for her not doing the needed activity because I've pressed her. I keep looking for a way to intervene that lies outside these 2 poles.
Every time I go back to trying to sort out what's getting in the way of doing such apparently relatively uncomplicated self-maintenance tasks (clearly not so for her). This has been going on for years, though has progressed to being one main source, and I'm over it.
Many of my friends have been pressing me, for years, to set her free in the big wide world, which I did once before with poor outcomes, I'm looking for kind, compassionate approaches. And I need to look after myself now.
Suggestions welcome.
@Molly22 - because I think you were tagged in relation to my introductory post by @Shaz51, please ignore if the tag isn't relevant.
