Feeling utterly depleted - Our family needs help.

[Ammee]

Our household is falling apart after almost five years of a hard long battle with our daughter’s mental health. It’s always one step forward, two or three steps back. Sometimes the one step forward lasts quite some time, and you are lulled into the falsehood of thinking, finally, this period of our lives is over we can now move on. Then it all goes to hell again. We have spent hundreds on health care professionals to little avail. Read every textbook, watched videos, sought advice from other parents, been to family therapy, individual therapy, psychiatry, occupational therapy, hospital, day centres, and still we are in this awful dark place. Every one of us is mentally unwell , all of us are in therapy with two or more specialists. We have all been driven to the edge, because of the neurological mental health condition my daughter has – who knows what that is, many have had their various theories. Pathological Demand Avoidance seems the best fit, but still doesn’t quite fit. She is an extrovert but autistic. Incredibly intelligent. Often as mature as a 16-year-old – but also as immature as a two-year-old the next with huge aggression, nasty words, and screaming. Desperately wants friendship – but burns every bridge in them by lying to them, deceiving them, stealing from them, making demands from them. Desperate to be someone she is not, and seemingly not able to find who she really is. Helpful, polite, friendly, charming to each new person she meets. Nasty, mean, resentful, demanding and aggressive toward anyone who SHE thinks has done her wrong. Often deeply loving, empathic and kind, but also often cruel, rude and unfair. Wants to control everything in her world. Is confused about her feelings, to the point of self harming and suicidal thoughts.

Our marriage is on the rocks.
My husband has anger management problems.
My son is falling over the edge now, the most gentle and forgiving soul out there - he now doesn’t want to live here anymore and is so afraid of what is happening to us. – He is 15.
After 12 and a half long years being her primary carer, I am now in a heap – sick with depression, anxiety, fibromyalgia and chronic fatigue syndrome – I have been driven to the edge and have already fallen off the cliff once, I am dangerously close to falling off it again.
My daughter doesn’t understand who she is, where she is going, how she can help herself, or how she can help her family. She loves us all dearly but is very mentally unwell.
We need help.

[Ammee]

Thank you for your kind words Therising. I love research. In fact I have done two masters thesis’ myself and would love to do more, but that is very difficult at the moment.

I have read all about the food and gut flora stuff including gut bacteria and how that impacts on autism. My daughter almost died of pneumonia when they was 1 week old. They had to have antibiotics, there was no other way. I often wonder if it affected them. However - it’s impossible to know for sure. We have tried various diets but none of them work because my child can never keep to them and sneaks food they are not allowed to have - so it’s impossible to know what works.

Thanks for the advice and the compassion. I am trying to look after myself. One step, one hour and one day at a time.

[therising]

Hi Ammee

I imagine, if such intense and constant research paid, you'd undoubtedly be able to retire much earlier than most people. Every post you write makes the frustration, exhaustion and burn out so much clearer. You're truly an incredible mum, literally stunning. By the way, the wonderer in me can't help but wonder what you studied at uni 🙂

I imagine, even if it's just for a moment, you've wondered about some type of reform place, in a way, for your daughter. Kind of like one of those retreats for young people, where the folk there take responsibility for helping someone reform themself through incredibly regimented strict discipline over a number of weeks, with a psychologist thrown into the mix. For someone else to take care of all the hard work, the constant discipline, the initial regular emotional outbursts etc would be tempting, even if it was just for the break. I think the mum in me would be saying 'No, I can't do that', for a number of reasons. I'd be imagining my child feeling abandoned by me or feel deeply hurt by such a choice. I'd also be imagining they'd never forgive me for it or it would mess them up more than it would help them. I also imagine the people who productively, lovingly and carefully run such programs would say to parents 'Most parents who come here imagine pretty much the same thing'. Still don't know if I could do it. I admire parents who can (work through all that questioning).

Hoping you're continuing to take good care of all the many aspects of self: 'The emotional eater,' who loves the occasional fill of 'joy', 'The hard worker', who deserves a long overdue break, 'The wonderer', who deserves time to wonder about the things that bring them a sense of happiness, 'The child' who gets to play and laugh a little and so many other aspects of self. I think sometimes we can come to forget who we are, based on our circumstances.

[Ammee]

Wallowing in self pity tonight - I wonder if that is ok to do?

I feel in limbo, and keep asking myself - when can I get a break? I mean, when will something happen that I can finally say, yes, we got this, it’s going well - cause that ain’t happening in a hurry.

* My teaching contract is about to come to an end, and no sign of it being extended.

* I am still living out of home because each time I go home I get so terribly triggered by the behaviour of my child that I can’t seem to be in their presence for long. I am afraid to move back.

* I am not ready to move back but may have no choice in three weeks - several rental applications later and no one wants to accept me to rent a place.

* NDIS review came back, only improvement was in CB budget, with nothing in the Core - which is what we need for a carer so I can safely live at home - that has been reviewed three times now, the limit, there is no way I we going to get anymore now.

* My relationship with my parents has taken a major hit.

* So, no permanent home, no sign of a secure job, no help from public health for our child and no end in sight, no family support outside of my husband and me, no money for a disability care worker or respite. AND my husband is starting to feel the pinch now, snappy and obviously in need of a break. I feel so stuck between a rock and a hard place, having experienced so much stress for so long…

Feeling lost and down. I started DBT last week at our local day centre, so there is one good thing I guess. But to hear some of the traumatic stories coming out of there - mine seems so trivial. No mother should feel so afraid of her child, it’s insane.

[therising]

Hi Ammee

You're absolutely 100% allowed to feel sorry for yourself. To feel sorrow for your self or that sense of self who has worked exhaustively to remain the eternal optimist, that sense of self who believed it wasn't meant to be this hard, that sense of self who never was going to resent their child in some way. I imagine the list goes on in regard to other aspects and the deep sorrow you feel. Nothing wrong with feeling and expressing such a deep level of grief.

While such hard work and disappointment has naturally worn you down over time, you need to also be kind to yourself when it comes to the overwhelming chemistry you're most likely facing. I can recall the impact of post natal depression with both my kids and how hard I was on myself regarding the fact I could barely tolerate my kids at times (with simply no love there) while even resenting them on occasion, before eventually coming out of 15 or so years of depression when my 2nd was about 8 weeks old. 'What kind of mum am I, to be thinking so horribly about my kids?' was one of my mantras. To not be 'feeling the love' can be about not feeling healthy oxytocin levels. To not be 'feeling the highs' can be about not feeling the highs that come with dopamine or serotonin. So, it's like you're feeling the challenge on 2 levels, what naturally brings you down and what chemically brings you down. Throw in some regular intensely challenging internal dialogue and you can add what mentally brings you down to the list. Mind, body and soul - a magic trifecta when things are going great and a depressing trifecta that feels like hell on earth when they're not in some ideal state.

The upcoming therapy sounds hopeful. I hope it gradually makes a significant difference to you in regard to mind, body and soul. I hope it changes your sense of reality/sense of connection to life while alleviating the sorrow you've come to feel so deeply. Mind altering therapy only works if you can feel it working on a variety of levels. Do you have the financial freedom to not look for another teaching contract in favor of working full time on yourself? I hope so. I hope you have the time and freedom you so fully deserve. Losing your parents' support must be devastating. Finding ways to raise yourself without their support/guidance is something else I hope you gain from the therapy. Maybe you'll be able to teach members of your family the skills you develop and practice from the therapy.

How's your son going by the way?

[Ammee]

My son is my one constant in my life. He is going very well thank you.

My health is so bad and I am sick of it. Even living out of home I get crazy annomolies - On Sunday morning I woke with two swollen knees, I mean really swollen, like footballs - and once again baffled the doctors when I went to hospital because I couldn't walk!!

I am so tired of it all.