Guest Post: What it really means living with depression AND raising a child with special needs

ImageIt’s Mental Health Awareness Week. The theme of this year’s Mental Health Awareness Week is anxiety, one of the leading causes of mental ill-health in the world. 

We have invited Terri O’Neale (Indie author and full-time mum to a special princess) to talk to us about her experience of dealing with miscarriage, depression and raising a child with special needs.  Over to Terri:

September 15, 2009. Almost five years, has it really been almost five years? That is the date that I miscarried. It is also when I experienced a major depressive episode. That’s what they call it now, but I prefer the old fashioned term…mental breakdown. I like those words because they are so descriptive. Your mind, like a car, has broken down and like that car it can be fixed. Sometimes not easily, certainly not easily. This is not some quick tune up. This is rebuilding your engine. But the thing is that it can be done. You can recover from mental health problems. That is something that too many people do not truly understand. But I did and many others have too.

What was it like, mental health problems? At first it was just feeling a bit sad and hopeless, like nothing would ever go my way. The miscarriage was just the final straw you see. In a little over two years, I had lost three jobs through no fault of my own. I had moved five thousand miles, leaving my own country, to be with the man I loved…and our marriage was failing. My two year old daughter had just been diagnosed with epilepsy and I was getting no sleep because I checked on her so often during the night. But losing the baby pushed me over the edge. I went from sad to despair. I went from hopeless to what I call the ‘valley of the shadow of death.’

I did not want to get out of bed. But I did…for my daughter’s sake. Then the moment she was at nursery I collapsed into tears. I remember walking my daughter to nursery one morning. I felt as if I wore a scarlet letter, as if everyone knew that I was ‘crazy.’ I lived with the irrational fear that I would lose my daughter too. That she would have a seizure and die or that someone would tell social services and they would take her from me. Mind you, I never abused or neglected her. She was always fed, clothed and taken to nursery no matter how I felt.

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On Thames River boat cruise March 2014

Another issue at this point was anxiety or panic attacks. If I got more than a couple of blocks from our flat, I would get panicky. I remember having an appointment with a career counsellor one day. It was only a couple of miles from our home. I talked myself into going and managed to get there without any problem. But the woman had been called into a meeting. She had not called me or even told the security officer. So I sat there for half an hour waiting for someone that never came. I left there in tears, thinking…no matter how hard I try to get help, nothing will ever get better. I could not even get on the bus home because crowds scared me. So I walked home with tears streaming down my face the whole way.

The turning point for me came when I enrolled in a chef’s course at a centre for people with mental health problems. That first day, I barely spoke. My first day in the kitchen I was so frightened that by the end of my four hour shift I had neck pain…for three days. But I went back. I finished that course and stayed on, cooking for others with mental health problems. I even got a couple of part time jobs doing it too. I had always loved cooking mind you, but it was doing something I loved for others that finally broke that vicious cycle of hopelessness.

Of course, there were other changes too. I left my husband. My daughter’s epilepsy got worse until we finally took her out of school to home educate her. We even discovered that she has autism as well as the seizures. I had to quit those jobs I loved to care for her full-time. My life now as a single home-educating parent of a special needs child is every bit as stressful as it was back then. The difference is me. I am so much more aware of my mental health.

That is the key for all of us. When we are hungry, we know to eat. And most of us try to find something relatively healthy too. When we are tired, we look for the opportunity to rest or sleep. When we are sick, we grab some tablets. But when it comes to this illusive but very real thing called mental health, we are not aware sometimes until it is too late how we are actually feeling. I have learned to listen to my body and mind…to take my mental health temperature if you will.

Oh like everyone, I have my bad days. Sometimes my bad weeks. But I am mindful of slipping back into that ‘valley of the shadow of death.’ I take better care of myself now. I talk to friends. When I am feeling down I make the effort to get out more. I especially make the effort to do what saved me…help others. That is why when a friend asked me to write something about mental health I could not wait.

So, if like me, you find yourself teetering on the edge, barely hanging on to your mental health, reach out. Talk to friends. Go to your GP. Get help and get it early. Oh and never forget to hold onto the bright moments. I can remember even on the darkest days looking at my princess and feeling joy. Joy and light when everything around me was dark. Hold onto those moments to fuel your way back.

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Disney on Ice April 2014
[managing such a long ride on the tube would have once been impossible without a panic attack]

And if you know someone who has mental health issues (we all do), the best thing you can do is be there for them. Non-judgmentally. When you are depressed it is hard to keep your friendships, because you lack the energy to do anything. But getting out and talking to people who care is absolutely the best thing you can do. So if your friend finds herself in that ‘valley of the shadow of death’ invite her out to lunch. If she won’t go, then take lunch to her this time. Spend a couple of hours just listening.

Other practical things you can do are: make a meal and take it over, babysit her children for a couple of hours (if you are super friend then a gift certificate for the hair salon to go with it) or clean her house. But while all of those things are brilliant what she needs most is just to be heard. To have a friend that listens, but never judges her. All that helpful advice about what she should do…that can wait for when she is better able to do it. For now, all she needs is your support. And that, my friends, is both the easiest and the hardest thing that we can do in this world.

The thing is often we do just the opposite. We say and do thoughtless things that make people’s lives darker, make them more isolated and despondent. I was reminded of that last month when a mother of three disabled children took their lives in desperation. The princess and I had had a brilliant day. We had gone to the library and park without one of her meltdowns (temper tantrums times one-hundred). But when we got home, I had a disturbing exchange with a neighbour. I had taken the garbage out to the bin and held the door open for this elderly lady. I asked if she needed help with her bags. For this, I got the following response: “Oh you are the lady downstairs. I feel so sorry for you. That child…”

Now I know that my child’s meltdowns are so loud that neighbours hear them. I even have one of those irrational fears (yes, even mentally healthy people get them) that someone will call social services. But those words turned a wonderful day to a bad one in an instant. Then I heard from one of my on-line support groups about this…and I understood. I could never take that path but I could see how someone might.

So if you cannot reach out to someone you know facing a mental health issue, someone under the intense pressures of caring for a special needs child/partner/parent, someone who has experienced a deep and abiding loss, then please at the very least…do not judge them. That is the very least that any of us can do…

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Facts and Figures around Mental Health in UK

Mental Health Foundation are committed to reducing the suffering caused by mental ill health and to help everyone lead mentally healthier lives. Here is their Help and Information page.

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2 thoughts on “Guest Post: What it really means living with depression AND raising a child with special needs

  1. mumsnetsuffolkandnorfolk says:

    Yes yes to practical help and the recognition that asking a person with MH problems, especially Depression, what they would like help WITH is often beyond them. What appears to us to be a simple cognitive process is too much for an overwhelmed brain.

    So just do it (as Nike says). Bring over a meal, hoover the carpet, run a lovely bath for them, get their shopping, pick up the kids or their meds.

    Depression isn’t feeling extremely sad all the time. It is more an absence of feeling, a terrible bleak nothingness. And this is far more terrifying for the sufferer than mere sadness alone.

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