Topic: Feeling utterly depleted - Our family needs help.

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.

Good evening Amme I am Joshua

That is quite a story and it is unfortunate that you and your family are struggling so.

Know that whatever comes you are not alone in this, there are good people who care and can help if you wish.

I find that sometimes writing down those thoughts in a journel helps clear your mind. For me anyway I feel so much better after I journel.

As for your daughter I would like to suggest you have a read of a book personality plus. To get a better understanding of why she acts in a certain manner. I am no doctor however I can relate to being agressive and wanting things my way. As I found out it is my personality that makes it so.

Getting some clarity on why she behaves certain ways may help you communicate with her on a deeper level in order to have a breakthrough in the relationship.

Never let your struggles get you down! It is through struggles where we become stronger and makes us better for it.

I hope this helps in some way and please feel free to reply to this.

Keep pushing forward

Joshua.

Hi Ammee

My heart goes out to you and your family so very much, especially your son. Being a mum, I can easily imagine your heartbreak for him.

I imagine you've possibly already tried this but I can't help but wonder. Has anyone ever suggested 'leading your daughter to come to her senses' in an outside the square kind of way? What I mean by this is - is it possible your daughter, while being highly sensitive, is misinterpreting what she's sensing? For example, you could say to her 'No, you can't do that'. While she's sensing resistance (a negative feeling), you're sensing direction (a positive feeling) through this form of guidance. They're 2 completely different feelings or sensations in the body.

You mention her high intelligence. Does she have the kind of intelligence where she can sense just about everything, like the mood of the house, the mood of individuals, the overwhelming feelings that can come with certain challenges, being emotionally shut down? Can she sense a lack of direction, can she feel when she's being judged by others (something we can typically get a feel for through experience)? Do her feelings trigger her even if she doesn't know exactly what she's feeling or why she's feeling it?

I'm wondering if people ask your daughter what she's sensing exactly, when she enters into a state of anger. Does she know what she's sensing? Could she be sensing her own resistance when it comes to constructive change? Is this something she can identify with? It's an absolutely horrible feeling at times, that's for sure. Does she seem happier when she's more in touch with her feelings?

There's not a huge amount of talk out there about both the ups and downs in relation to heightened sensitivity and how we feel it in a number of ways, both good and bad. It's like you can't necessarily feel dis-ease (unease) in a certain challenge that can possibly be going on for weeks. When it starts to go on for months, you can begin to really feel the dis-ease (unease/stress). By the time it hits years, it is undeniable, you can feel it on so many levels. It changes you. It changes your mind, your body and, on some level, your sense of soul or connection to life. I don't have to tell you...to feel so deeply, so intensely is not just exhausting, it can be overwhelming and debilitating.

Again, my heart goes out to you.

By the way, wondering if anyone has ever led you to research 'The abilities of a highly sensitive person'. Wondering if such research could help somewhat.

Hi Ammee,

I am so sorry this is happening to your family…..

Its so hard when someone in your family is mentally unwell…… especially one of your beautiful children….. it would be so hard …. But all you can do is try to show her LOVE and support…… I feel for your daughter because she must be going through so much within herself and not sure how to understand it or navigate it……. It must be terrifying for her aswell…….. and for her family to witness this is also heartbreaking…. All we want to do as parents is fix our children but sometimes it’s difficult to know what to do…..

Has your daughter been able to explain to you what she is going through from the inside?

I know it’s hard but we just need to try to understand her…… and just be calm…… with her….. reacting in a negative energy to her won’t help it just puts more flames in the fire…. Try to react in a loving positive way…. It will help you internally and also your daughter….

I understand mental illness I suffered with Obsessive Compulsive Disorder for some time until I receive d professional help for my condition….. I was given the correct treatment and I was able to recover….. I was put on a antidepressant and did meta cognitive therapy for OCD…. I learned to master my OCD…..

While I was going through my Illness I felt so scared and confused inside I was always in a heightened state of anxiety….

My thoughts to my loved ones sounded irrational but to me they felt very real and intense…..

It was hard for my loved ones to see me going through this condition…

Can you see a another phyciatrist for a diagnosis? Please don’t give up there is always HOPE you just need to see the correct health professionals and be put on the correct path……

Can I ask what you do for your own self care? You need to look after you aswell…….

im here to chat to you

Hi Ammee

Wow, that's intense, yourself, your son and your daughter. I could say the same thing - myself (51), my son (16) and my daughter (18). It does leave my husband feeling like he's living with somewhat insane people at times, especially when the 3 of us sense the need for discussing complete and utter nonsense (amusing food for the soul).

While I find mainstream medicine (both mental and physical) to be absolutely fascinating and of great service in so many ways, it's a 3rd element that often serves me best in some ways. It's an element that's more so about the nature of people. While dictating we're designed to be highly sensitive, a lot of it is about recognising sensitivities and mastering them or balancing them, as opposed to suppressing them. Much easier said that done. I'm still learning :)

With your daughter being highly sensitive and with you having mentioned she desperately wants friendship but burns every bridge by lying to friends, deceiving them, stealing from them, making demands from them, I can't help but ponder the idea that she's perhaps sensitive to wonder and imagination. Wondering what she'd need to say to someone to keep them as a friend may involve her imagining lying to them, which leads her to do it. Wondering about how much of a difference their possession would make to her may involve her imagining what it's like to have that possession for herself. She sees herself with it, gets excited and therefore feels there's no choice but to take it. Maybe she wonders about what demands she needs to make of friends, to maintain a status quo. She imagines those demands and then makes them. Wonder and imagination are truly brilliant aspects of our self but they can also be highly destructive at times, such as in this case. Is your daughter someone who is naturally wonderful (full of wonder) with a brilliant imagination? If so, could you positively trigger her, leading her to wonder and imagine differently while mastering herself?

Wondering whether your daughter has certain 'body language' so quite that she can barely hear it/sense it. it's like you could be thinking of doing something wrong but get a feeling/message, like a 'ping' that helps you confirm it's the wrong thing to do, leading you to not do it. Some would call this feeling 'guilt'. Is that 'ping' there for her but she dismisses it? Would you say she needs to 'tune in' or 'turn up the volume more' on certain feelings that ground most of us out of doing what's wrong?

Hi Ammee,

Does it help to know that my daughter is exactly the same? All that you said - intelligent, autistic, rude/mean, loyal, controlling, kind, funny, burning off friends...? Please know I empathise completely and have some understanding of the toll it's taking on yourself and your family. Good on you for reaching out for support, again, as I have, here. I found some of the advice very perceptive and helpful and hope you did too. Self care seems obvious but should always be top of the list. The sensitivities idea raised in one response struck a chord with me. We have learned that our daughter doesn't understand her father's humour - he's a lovely, jovial, glass half full kind of guy (or he was...). Our daughter responds so negatively to him, accusing him of mocking her when he's not. She also doesn't understand me - if you need help with something, I'm your person! I will sort any issue with you right to the end. My daughter sees that as attacking her, pressuring her. So, reluctantly at first, my husband and I have adjusted our personalities for her, or at least our natural behaviours in her presence, to meet the needs of her sensitivities. Along with therapy, medication etc, this has helped to stabilise the home front. At first I was annoyed that I couldn't just be myself in my own home, but apparently, this creates a less stressful, more predictable environment for her. And the person who responded about your daughter imagining what it would be like to do or have this and that, rings true for my daughter too. I've learnt my daughter's perception is her reality and what is really going on doesn't matter so much when I'm trying to deal with her, to encourage her and even love her. Lots of thinking outside the box from an unimaginable perspective by me.

Being kind to your partner and son is also important and tricky. My hubby and I regularly check in - the one that is feeling strongest takes the lead while the other recuperates or shelters for a bit. It's OK not to be OK all the time. Being a coordinated team keeps you stronger for longer. Not sure if it's relevant for you, but we have also been looking at family history of MI, swept under the carpet in generations past. In doing so we have found some of her older cousins have been experiencing difficulties that haven't been mentioned before we asked. This gave us a different context.

Please know you are not alone, there is always hope and seek support every time you need it.

Amme

can feel your pain and frustration. When I was 16 I was the problem in my family and I put pressure on everyone. At the time I was in denial, lying, cheating, being horrible to my poor totally exhausted parents.
eventually I took medication and with having knowledge of what worked for me My life and my family’s stabilised.

Joshua

Welcome to the forum and thanks for using your first post to help others.

Thanks Therising,

Interesting theory and I agree, she is very imaginative. I think you are right with some of these things, but I don’t think she is capable of imagining people in a different light to what she already does - we have tried so many times to talk her through these things, to get the possitive side going, only to have it all crash down again. She is so complex and the difficulty is she doesn’t share much with us. Thank you for your insight.

Thanks for your help everyone. Your posts in combination have been very helpful for my mindset and some things have come in place for me and my husband because of that understanding. Unfortunately though, our daughter is getting worse by the day. Home life has become so chaotic and dangerous (she is very aggressive now, breaking things, self harming). I don’t know what is happening to her, and neither do her medical professionals - I wish I could get inside her head. She doesn’t talk to us. I feel like I have lost my beautiful girl and wonder if I will ever get her back.

Last week I broke down again. My daughter had once again tried to take her life. I rushed her to hospital (surely they would see her this time right? She actually had injuries, though superficial - her mental health was the emergency) - So we wait for three hours. The first nurse we see tells her it will be ok, they will take care of her and she can have a good lie down when she sees the mental health nurses. She spent the next hour lying in my lap, utterly depressed. The two mental health nurses came and got us and were HORRIBLE- My daughter got up on the bed to lie down (after all that is what the previous nurse said) and they immediately told her off in an angry tone - they treated her like a naughty child through the whole discussion! My daughter started getting very angry with them about what the other nurse had said and then started crying into my chest. Meanwhile the nurses totally ignore her, as if she weren’t there. They say to me that they have spoken to the psychiatrist in charge and he believed my daughter’s case wasn’t severe enough. NOT SEVERE ENOUGH? !! I mean what does she have to do to be severe enough? Do I actually have to let her finish her attempt so someone will actually see her!! It’s crazy. I told them this wasn’t fair, that she needed help and had done the right thing in listening to me and telling me she needs help - then we come in and get none, after 3 hours! The two nurses marched us out with the words “you have to go home and be a good mother now” Excuse me? Then I tried to go upstairs to make a complaint and they had a security guard march us out. It was so distressing! This incident led to me breaking down - I lost myself after that, had a total relapse. It lead to my own self harm and suicidal ideation. I got myself out of our house. I cannot be there with the way things are. Don’t worry I am getting help for myself.

• A recent post in which a few parents shared their struggles supporting teenagers with complex mental health challenges: Depressed daughter *Trigger warning - self harm*
• A post from a health professional: They won’t get help: supporting your teenager through a mental health crisis

Hi Ammee

I wish I was there for you right now and there in the hospital at that time. What the heck is wrong with those people?! How challenging is it, dealing with people around you who are completely insane (such as the hospital staff)? How challenging is it dealing with insane people who insist they're not the crazy ones? If they were to insist 'We're not crazy', I would insist 'Oh yes you are, you just can't see it. Let me point it out'. While you tried to raise their consciousness to see the insanity of that situation, they flat out refused to question themselves.

One of the things people really need to learn is don't challenge a lioness when she's protecting or serving her cub. It'll just send her wild :) Wondering if that's the first time you've ever seriously met with the lioness in you. She's pretty powerful. I actually work with a lot of sensitive women who easily sense that part of them coming out. We all relate to it as a part of our self no one wants to mess with. Personally, I've allowed her to naturally come out in me more and more over the years. You can pick her, as she sets you in her sights once she establishes you as a threat (aka 'The death stare'). I'm so glad your daughter got to see this part of you, the part of you that's willing to fight to the death for her or close to it :)

Do you ever have those moments where you can feel your thoughts or feel what you imagine. It's like you might come to imagine/recall the day your daughter was born or the day you got married and suddenly you feel this incredible sense of love and joy. So peaceful. Perhaps you have moments where you may imagine/recall what was the saddest day in your life and you suddenly feel sadness within you. Maybe you've imagined the day where someone offers some epiphany that changes the mental health of your daughter and you feel excitement or overwhelming relief. If you can't imagine this, you won't feel the excitement or relief. If things are feeling worse for your daughter, I can't help but wonder what she's imagining. Perhaps, things not getting any better. Maybe, even things getting worse. Maybe this is what she's feeling. To be able to feel your thoughts can be so challenging.

There are some brilliant guided sensory based meditations that lead people to imagine and feel what they imagine. Some are even designed to guide you into your subconscious so you can access some revelations and feel those inspiring revelations when you come back out of the meditation.

Hi Ammee

Checking in to see how you are. I hope where you're staying someone is taking extra special care of you, a friend or family member. I can imagine how incredibly worn down you're feeling right now and even then I'm sure it wouldn't come close to how truly exhausted you are.

I wish you were in a mindset which allowed you to clearly see what an absolutely incredible person you are. While your efforts have been exhausting, they've also been stunning and something to be unbelievably proud of.

I know it's easier said than done but try not to be too hard on yourself as you meet with the peak of your tolerance, spilling over into intolerance. Everyone has a tolerance cut off point. Sometimes we only come to know it when we meet with it. You now know yours. You now know it is incredibly high, higher than most.

You've been managing what has been a mentally and physically exhausting number or years. The nature of your challenge dictates it is depressing in ways. From my own experience over the years, I've found managing not returning to depression to be so much harder when I've been worn down by a challenge. It is in a worn down state where we can most easily feel the depressing nature of the challenge we face. It becomes so much clearer. The fact that you've come so far before meeting with complete intolerance speaks volumes when it comes to your strength, determination, commitment, devotion and more. You've been pushed so hard over the years to constantly find the best in yourself. You didn't settle for filling the role of 'She who is basically patient, she who is basically loving, she who is basically tolerant, she who thinks basically when it comes to problem solving' and so on. Many parents settle for basic effort. We hear of such parents every day. Your efforts have redefined you as extraordinary, amazing, incredible, powerful and more.

I would define you as a woman who does not simply love. I would define you as a woman who actively loves, to the point where it hurts, to the point where it is completely exhausting. The world is short of those who love as much as you do. You are truly beautiful. This is who you are. You deserve a break, a time of reflection, when it comes to loving others so intensely. If there is one who needs your love and devotion, more than anyone else right now, it is you. Take great loving care of she who has worked so hard. Be kind to her, for she is truly beautiful :)

Thank you pvroom,

I have done lots of reading on PDA and joined support groups. Our psychologist believes our child to be PDA, so yes, know all about low demand environments. Thank you.

Thank you Therising,

The lioness in me has come out many times - so many I don’t have much energy left. Advocacy is something I have had to do for both my gifted with special needs children all their lives, from the time my son almost died in the emergency room when he was 6 weeks old while they told me that I was just a first time mother and babies cry (then they saw the lump - it was a strangulated hernia!) to the most recent experience - It has been ongoing for what seems forever. I am so drained.

Thanks for your suggestions. I do a lot of medication and teach my child them as well.

The worst of the mental health stuff came out for my youngest child (one mentioned throughout this thread) when they had their first period - then everything snowballed from there to all the stuff I write about here. Yesterday they were finally confident enough to say they are questioning their gender —

Long way to go yet, but I think that’s a breakthrough.

Pity I am so unwell and can’t be there for them during this difficult time - I try to be there as much as I can via phone and visits.

Thanks for everything.

Hi Ammee

I'm so glad you're continuing to take time out for yourself, with support. It's something you so obviously desperately need and deserve.

That does sound like a breakthrough, your daughter openly questioning aspects of her identity. Perhaps this was something she felt she couldn't live with, while keeping it to herself. I hope she's now feeling more freedom to express herself and not have to live with such internal self doubt and stress. As you say, there's still a long way to go. At least you now have some idea of which path she's on (in her mind), one of self questioning in order to gain a greater sense of identity, hopefully leading her to discover who she naturally is.

With you having originally mentioned the many avenues you've tried, in gaining a sense of support and understanding, I can't help but wonder whether anyone mentioned gut/brain axis issues in autism, more specifically in anxiety and depression. 'Mood and Food' is a fascinating field of research these days. It first triggered my interest when when one of the heads of research in this area, from Deakin Uni, came out to my children's school some years ago. It's amazing how the chemistry in the gut feeds the brain in various ways. I was surprised to learn that the majority of serotonin (the chemistry that's partly responsible for happiness) is actually produced in the gut. To also learn how anxiety can be modified/managed (in some cases) through the gut microbiome was truly surprising. Current research being done regarding the benefits of gaining a healthier gut microbiome with the help of pre and probiotics in people on the autism spectrum is something that's also gaining interest, inviting further research.

Personally, research fields fascinate me. It's like you've got all these detectives out there wondering why nothing seems to be working in certain fields of medicine as well as wondering about what could be linked to certain issues and what might actually work under certain circumstances. Without such wonderful (wonder filled) people in the world, we'd be stuck with outdated 'solutions' that just don't work for a lot of people.

Take good care of yourself as you re-energise :)

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.

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.

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.

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?

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.