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.
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.
This sounds like an incredibly difficult experience, we’re so sorry to hear about this. You did the right thing getting her to a hospital, and this is not how you should have been treated. We can hear the love and concern that you have for your daughter, and we are sorry to hear what you've been going through. It may sound like cold comfort right now, but we hope you can see how inspiring it is that you’re supporting and protecting your daughter, through a time when it can be difficult to find the help she needs.
This is an incredibly difficult time, so we’re reaching out to you privately. We’re so sorry it’s lead you to a place of self-harm and suicidal ideation. Please know that we are here for the moments you need help, on 1300 22 4636, or via webchat here.
It sounds like you are checking in with someone about this, whether that’s existing mental health support, a GP or another health professional. There is always somewhere to turn for you, your daughter and all other affected members of your family. You could check in with Parentline, who have a number for each state listed here, and if possible, encourage her to contact Kids Helpline whenever she needs, on 1800 55 1800 or via webchat here. You could also reach out to our friends at Carers Australia , as they may be able to support you with this extremely difficult experience of caring for and advocating for your daughter’s health, on 1800 242 636. They offer short-term counselling, emotional and psychological support services for carers and their families.
While you’re waiting for some replies on this thread, you might be interested in some of the other posts around the forums:
- 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
We really hope the kind words and understanding of the lovely community members here is comforting to you. Please feel free to keep us updated whenever you feel comfortable to do so.
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.
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 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.
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 🙂