Friends, Family & Carers Forum

[metamorphosis]

Thanks for asking @tyme 
The week has been challenging. I'm becoming more emphatic about my own limits, and stating these, rather than couching my comments in terms of what I think might help her. I think being clearer that some of what's happening is about me and what I can tolerate is helping a bit. 
My limit is that I'm not supporting my daughter to become bed-ridden. If that is what she will pursue, then she needs to start sorting out supported accommodation. 

[metamorphosis]

thanks @tyme 

Comments I've been receiving have been truly helpful. 
And I'm feeling supported. Check-ins like yours are wonderful, they give a moment to pause.

I've been taking a new tack with my daughter more often. Rather than presenting an ever-reducing number of suggestions for new actions that may be of help to her (which she mostly ignored or misapplied, for her own well-intended internal reasons), I've been letting her know when I'm reaching my own limits. I do this, as often as possible, after I have checked my own state-of-mind, to see if I'm in an unhelpful emotional state. It all feels like I'm walking on eggshells, though operating from a more self-regulated state does have better outcomes with her.

It's been slow coming, I'm not young, I'm learning just how important self-regulation is for good communication.
Thanks again

[Gwynn]

Have you tried doing something like inviting her to come on a walk with you before she gets to the point where she shuts down? That kind of rhythmic movement might help keep her from becoming hypoaroused. The fidget ring is probably also good - if she has a pet, stroking the pet might also help keep her from becoming hypoaroused. I find that if I'm around an animal, I have to keep some emotional control in order to prevent the animal from becoming stressed out by my stress, so that might help her.

That's why I ask the question - what does she want out of life? If she has a plan for action, she might have to figure out how to get around her hypoarousal and other issues. It's good that she suggests strategies for you, as it proves she does see some value in strategies, but hasn't found something that really works for her.

[metamorphosis]

Hi @Gwynn 

thanks for the suggestions. And you raise a good point regarding walking. So I will start trying again, and I'll organise for my own self-regulation beforehand.

For reasons outside the scope of this discussion, regular walks in my neighbourhood aren't something I do often. They are a pain point for me. When she has come with me in the past, she has become irritated by the conversation I raise, and has stopped coming. I've invited her to raise topics of her own, but she hasn't done so. For me, walking silently has been a difficult thing to do, though I may need to find a way.
I do invite her for walks in bushland, however they are rare, and she comes with me quite often and enjoys herself. The weather has been a challenge for doing much of this type of walking this year. When I do try to organise a bushland walk it can take 3 - 4 hours for her to get out of the house. If we are to do them more regularly they can't easily be just something spontaneous. Also in this context we walk very slowly looking closely at everything we see (so it may not meet the repetitive movement requirement).
If we have done a walk, she's been taking a day or 2 afterwards to "decompress" and recover.

I'm starting to see the value of pets, we've not kept them as a family. There's also the issue of the cost on a limited budget. We live in a workers cottage which is entirely unsuitable for pets, and I have allergies to pet hair.
We have been keeping snails. This did enthuse her for about 9 months, however she now can't stand the smell of the moss and uneaten, decomposing, veges in the container when it needs cleaning. She's extraordinarily smell sensitive. This worked better for her when she was on a med that changed her sense of smell and taste, but its main purpose as an anti-depressant wasn't working well anymore. 

As I reflect on this, I can see that her hypoarousal (at least the increased amount of time she spends lying down reading) has increased in intensity since she's given up smoking and stopped taking medication (with patchy medical supervision) since Feb/March this year. Stopping the meds has left her appearing to be brighter and more engaged when she is around people, however, these occasions aren't very frequent, and are nearly all dependent on me to arrange.

I have been unable to find out what she wants from life. When I engage her with the work I do, nature-based activities, she shines like a light, is incredibly observant, and can show people all sorts of things that even I have missed! As soon as we return home, she returns to her state of being as previously described. I've tried to engage her more with my work, but booking are patchy. I try to gently encourage her to see if she'd like to build on this work, but she get cross with me for suggesting anything. I am unable to build on it myself without being certain of consistency from her.

I raised the topic of hypoarousal with her earlier today, and suggested discussing it further with her case worker at their meeting today. She shrugged, said they'd already discussed it and closed the subject down, as she does with anything that causes discomfort.

thanks for the suggestions, they're helpful for reflection and to find windows into how I could do things differently, while still meeting my own needs and limits as a "highly sensitive person" as per Elaine N. Aron's framework.

[TuxedoCat]

Hey there @metamorphosis 

I'm so glad you've joined the forums, and thanks to everyone for sharing tips and tricks. It sounds like you've got some useful reflections @metamorphosis.

This sounds like such a complex situation for you. It's so clear to me that you care a lot for your child and want her to be so happy. And I'm so glad you're finding ways to make walking work for both of you, especially as it seems like your daughter gets so much out of the walking ❤️ 

I thought I'd share a bit of my story with you because I see some similarities between myself and your daughter. I'm trans, I'm anxious and depressed and recently got diagnosed with ADHD which has a lot of crossover with autism/ASD. A lot of my sensory needs are linked to my anxiety and depression. For example, I get soooooo anxious when I know I'll be in a situation where I might be overstimulated.  Anyway, I've slowly found ways to regulate sound stimulation by listening to music or using noise cancelling earplugs/headphones. I wonder if this sort of thing might help your daughter? I also know when I'm walking with my partner and I have my headphones on, he listens to music or a podcast so he can entertain himself too. 

One last thing: lots of people with autism of ADHD struggle with BIG concepts like "what I want in life" because we often focus on the present. When I think about myself being happy, I think a lot about my current hyperfocus* which I almost can't stop thinking about. This might not apply to your daughter, but it helped me. 

You're a really wonderful, persistent parent. This is really complex and you're not alone in figuring it out. Your daughter is lucky to have you ❤️ 

Sitting with you,
TuxedoCat

*If you haven't heard of this before, hyperfocus is where people get fixated on a new topic or activity. It can consume ADHD people for days, weeks or months at a time. A lot of us find pure happiness in this top

[Gwynn]

The point I was trying to make was that helping your daughter recognise when she's on the brink of being overwhelmed and helping her find something to bring her back from the brink of hypoarousal before she's overwhelmed could be really helpful for your relationship.


Something that my OT did with me a lot was getting me to rate my mood out of 10 - if it was unacceptably low for her liking, we would immediately do something that she promised me would lift my mood, and then we would re-rate my mood. Something that I've heard of is the trick of changing our body language, for example 'half-smiling' - when we don't feel like genuinely smiling, even stopping frowning and doing a small Mona Lisa smile can help us feel better after a while. Similarly, consciously improving our posture can help with confidence.


Something important to keep in mind is that you're her mum - therefore it can be really hard for her to hear even loving advice from you as while it's well-intentioned, it can feel like really harsh criticism (because advice from our mums is usually close to the bone and we don't want to hear it, and we tend to go la-la-la-la *fingers in ears*). She's likely to be sensitive about it because she perceives you as being stressed out about her NDIS application.


She's also likely to be sad about the NDIS application process, as it requires you to imagine what your life could have been like if you weren't what you've always been, and it requires you to think about your worst days all the time and write it all down for a stranger to read and decide if you're worthy or not.


I'm sorry that walking is a pain point for you and that it's not that simple.


With pets, in addition to the unconditional love a pet can give, it's also about the fuzzy heavy warmth, and it's considered ok to pet them, more than anything else. Maybe a weighted blanket might be helpful for your daughter?


If she's spending more time in a hypoaroused state and recovering from it since quitting smoking and her meds, that's really normal - she's raw-dogging reality without a couple of her usual emotional crutches. What kind of formal supports has she had around quitting? Have you ever heard of the term "personal medicine"? ( https://fromshame-tohealing.com/2015/10/26/personal-medicine-a-concept-formulated-by-pat-deegan/ )


If it's difficult for her to think about 'what she wants out of life', maybe breaking down that question might be useful for her to think about what goals she wants to put in her NDIS plan? (Or does she already have 7 short, medium and long term goals in her application?)

[metamorphosis]

Thank you for sharing your story @TuxedoCat. I deeply appreciate it.  
I am familiar with many of the things you suggest. Also aware of the overlaps (comorbidity) between Autism and ADHD. I've been working hard to figure out what's going on, and learning much more about myself in the process as well. 

I am personally also a "highly sensitive person" (a framework I prefer to using the prescription and proscription that is often associated with Autism, though much less so than my daughter. The sensitivities covered in that framework have many overlaps with the characteristics of Autism). Although not diagnosed as such, and it wouldn't be useful now at my time of life, I'm clearly on the spectrum, and also have been diagnosed as having ADHD.  I've experienced my share of anxiety and depression, less so of late since I've found really helpful self-regulation practices for myself. I'm hoping that I am able to empathize with though not enable her with these areas. The practices are becoming ever more important because I'm also dealing with a 95yo mother (mostly at a distance) whose vascular dementia is advancing rapidly. 

My daughter's sensitivities cover every sense that I can think of, sight and observational, smell, hearing, touch, also probably movement, possibly there's something also happening with her proprioception (though I don't know how to gauge that), on top of which she also has a rather full-on autobiographical memory. Since, as a species, we are cued to remember bad experiences more emphatically than good ones, sadly, from what I can gather, people who have good autobiographical memories, have a worse time of it than others. I suspect she relives many of these memories at times when they are triggered, which from the Polyvagal framework, would be considered to be trauma, and being re-traumatized. 

Both my daughter and I do understand hyperfocus. Luckily I've been able to turn mine into many productive pieces of work over the years, and can find it useful. Hers is centred on reading almost all of her waking hours, and the outcome is an extraordinarily broad knowledge base, partly because she remembers practically everything she sees, hears, reads, etc for a long time. 
I've been applying a range of Barbara Sher's approaches to understanding how to use ADHD characteristics productively and in an engaging way. Although not stated as being about ADHD, her work is for people she describes as Scanners. It amounts to something very similar. 

Funds are not plentiful atm, so here's hoping that she does become eligible for NDIS support, and various things like weighted blankets are on the suggested lists to be acquired. 

The various self-regulation strategies you suggest have helped her in the past, though I can't see that she's using them at present, and often shrugs if I suggest them for particular circumstances.

It actually seems that she does feel better when she can see that I am triggered and can suggest that I use my strategies to calm down 🙂 

Aside from the hypoarousal, or perhaps because of it, it seems to me that the biggest issue is how isolated my daughter has become due to some of the things you suggest, eg. overstimulation and the fear of it, fear of rejection, amongst others.

Sadly, I've yet to find a way to usefully apply all the insight I've gathered, other than how it changes how I interact with my daughter, which has been useful. I can now see that I'm hoping for a big shift and soon.  I can also see I need to let go of this hope. 

I've reached a point where my resources are running out, feeling exhausted, and I need to make sure I have the pieces in place for my own maturing years. I still have a mortgage to feed. I'm only 2 years shy of becoming 70 (ouch!), and my energy levels are dropping (and also being drained beyond what's healthy for me). 

Thanks heaps again, it has offered more openings in windows of possibilities. 

[metamorphosis]

Thanks for your thoughtful response. Unfortunately, I have calls on my time over the next few days, so won't be able to process it as thoroughly as it deserves for a little while.