School’s out…forever

classroomWe’ve taken the scary decision to home school Nora. In fairness, this decision is easier for us than it is for most parents. She hasn’t been at school for over a year so it’s not a huge change.

She is getting an education of sorts (provided by the Local Authority). As soon as we inform the school we’re taking Nora off the register, we’ll lose that support. But it’s not like we’re moving from having her in school for seven hours every day.

Even still, deciding to home educate is a huge step. I’ve always been in favour of mainstream schooling. Until now, I’ve never understood why some parents would choose to take their children out of school, believing they can do a better job than qualified teachers.

School-topI am still friends with the people I went to school with and those friendships are as important to me today as they were over thirty years ago. I’ve watched Nora’s brother form similar friendships, and I’m sure many of those will last throughout his life just as mine have done. It’s what I’d hoped for Nora too.

But you know what? I’ve realised the school system simply doesn’t suit all children. And that’s not always because of friendship issues.

Many people assume (wrongly) that Nora’s mental health problems were the result of bullying. She has never been bullied. She was hugely popular in primary school and seemed to have a lot of friends during her short time in secondary school. So much so that, a year later, she has managed to maintain those friendships despite her absence from the classroom and playground.

So, if it’s not bullying, what is it?

For Nora (and, I suspect, many other children) the focus in too many secondary schools on discipline and academic output doesn’t work. In Nora’s case, I’d go further and say it’s hugely detrimental.

My daughter is creative. She writes poetry, she creates wonderful art, she loves acting. She is intellectually curious – her favourite subjects are Philosophy, Psychology and Politics. It’s no longer possible to study any of these subjects at GCSE level.

Nora is dyslexic. This makes it difficult for her to focus and concentrate (and, therefore, learn) in a class of 30 children. Her dyslexia becomes noticeably worse when she’s anxious. Being in a classroom, struggling to understand what’s going on (or trying to study a subject she has zero interest in), makes her anxious. The more anxious she becomes, the more she struggles to read and write. And so on….

I had always hoped Nora would go back to school at some point. It’s taken me a while to get my head around the whole idea of homeschooling. But now I’ve started to think about it properly, I’m excited. I’m terrified too, of course. I have no idea how I’ll manage home schooling around work.

But we’ll work it out. Like me, my husband never envisaged we’d end up being ‘home school parents’. But he can also see that home schooling Nora is the right thing to do.

We got through the last year when our beautiful daughter became so ill we thought we’d lose her. If we can do that, we can do anything. I know we’ll work it out, somehow. And I know, beyond any doubt, we’ve made the right decision for Nora.

After everything she’s been through, that’s the only thing that matters.

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Talking therapy

blurred-background-calling-cellphone-1426939In a recent post, I wrote about how Nora’s illness has become my single topic of conversation. The truth is, talking – and writing – about everything that’s happened has helped me enormously.

I started this blog because I wanted to share my experiences with other parents. I believe it’s important to speak openly about mental health. Having a child with a mental illness isn’t some dirty little secret to be ashamed of. I am immensely proud of my daughter and her strength in the face of this terrible illness.

But you know what? Parenting a child with a mental illness is hard work. Too often, it can feel lonely and overwhelming. I am tired of trying to ‘explain’ Nora’s illness to people who insist there must be a ‘reason’ for what’s happened to her.

However, for every conversation I’ve had with someone who simply doesn’t get it, I’ve had half a dozen with people who do. Many – but not all – of these are parents of children with mental health problems. Parents, like me, who have felt lonely and misunderstood as they’ve struggled to come to terms with what’s happened to them.

I’m often asked what advice I’d give to a parent whose child is struggling with depression. There are lots of things that help, and I’ve written about some of these in an earlier post. The thing I haven’t written about is how helpful it is to simply talk about what you’re going through.

It seems obvious to say that talking helps. But so many parents struggle for too long in silence. Confusion, fear of being judged, worries about betraying their child are all reasons why some parents don’t feel comfortable talking about their child’s illness.

In that sense, I’ve been lucky. My family and friends (too many to mention but please know that each one of you has made the last year bearable) have been there and listened while I have talked, and talked, and talked… and then talked some more.

I’ve also found a remarkable online community of people, and I’m often overwhelmed by the support I’ve had from people who barely know me. Again, there are too many people to list them all, but I must give a special shout out to Ida Väisänen (funny, brave and all round lovely), Ashley Leia Peterson and Carol Ann. For anyone wanting a better understanding of mental illness, these women write great blogs.

Finally, if you are parent and you feel there’s no one you can talk to, I would strongly recommend the new parent to parent service offered by mental health charity, Young Minds. This service didn’t exist when we were going through the worst of it with Nora, but I wish I’d had something like this. It’s a chance for parents who are struggling to have a chat with someone who has ‘been there’ and really understands what it’s like to care for a child with a mental illness.

Young Minds is a great charity, that does a huge amount to support young people with mental health problems. Alongside the parent to parent service, they also run a parents’ helpline which is available to offer advice to parents and carers worried about a child or young person under 25.

The most important thing to remember is this: whoever you are, whatever problems your child is having – you are not alone. Talk to a friend or family member that you trust, join one of the online communities on Facebook or Twitter, read mental health blogs, or call Young Minds. Help and support is there. I promise.

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How boring can I get?

handI haven’t written anything for a while. This is partly because I’m exhausted. The effort required to take care of my sick child is starting to take its toll. Yes, she’s a lot better than she was. But we still have a long way to go and that can feel overwhelming sometimes.

The other reason for my silence is this: for a long time, I’d simply run out of things to say. In fact, I realised earlier this year that I had become a ‘one subject’ woman.

In every conversation, and everything I write, I am constantly trying to make sense of what’s happened to Nora. Her illness is all I talk about. I see it in people’s eyes – that flicker of dread when I start speaking. I don’t blame them for this; I have become a singularly boring person.

I don’t think I’ve always been boring. I’m pretty sure, not so long ago, I could hold my own in most social situations. I make friends easily; I’ve always had lots to say and plenty of opinions on plenty of things. Now… there’s one subject on my list of things to talk about: my daughter’s illness.

I suspect that one of the reasons I keep going over the same old ground, is because there’s so much still unsaid. The things I don’t talk about because they’re too personal, or too difficult, or because I simply want to move forward. I also know these things cannot be unique to me and my situation.

I’m in regular contact with parents of children with mental health problems. All of us share the same worries and concerns for our children. All of us get so used to dealing with horrible situations, they rapidly become our new normal.

So, in an attempt to draw a line under the last year and move forward with my life, here are some of the things that become routine for parents of children with clinical depression:

  • Waking up in the middle of the night to find your child trying to stab themselves or hurt themselves in some other way
  • Never being able to go to sleep until you know your child is asleep
  • Setting your alarm for various times during the night so you can get up and check your child is still alive
  • Watching your child’s terrifying descent into a dark and desperate place, and knowing you are helpless in the face of this illness
  • Knowing your child wants to die  – really, properly wants their life to end because the anguish caused by their illness is too much to bear
  • Realising that no matter how completely shit this is for you, it’s worse for them
  • Learning to physically restrain your child because you know if you can’t do this, they will try to kill themselves

In my family’s case, the other thing that has become part of our ‘new normal’ has been the immense, overwhelming support from our neighbours and friends. We’ve had a crap time recently, but we are getting through it. We know how very lucky we are.

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A diary of depression

girl on beachThis time last year, Nora’s illness was only beginning. We had no idea how bad things would become. We never could have imagined that our eleven-year-old daughter would reach a point where she was so ill she wanted to die.

For some time, I’ve wanted to write about how Nora’s illness progressed, but I’ve never been able to get the words down. It’s always been too painful.

But…I want other parents – who are going through something similar – to know that they’re not alone.

So, I’ve finally written something. I hope it helps.

Month one

Nora’s anxiety has become unmanageable. The only way I can get her into school if we go for long walks beforehand. This means getting up early and walking for up to two hours before school.

I know that Nora’s already in a dark place, and she needs help. Through our GP, we’ve got a referral for a private consultation with a psychiatrist. Apparently, Nora isn’t ill enough for a CAMHS referral.

Month two

The psychiatrist thinks Nora may be suffering from depression, although this condition is – apparently – extremely rare with children as young as Nora (she is eleven).

Because of Nora’s age, the psychiatrist rules out anti-depressants, and recommends a ten-week course of CBT counselling. My husband and I are relieved. It seems inconceivable to medicate our eleven-year-old daughter with anti-depressants.

Month three

The CBT sessions aren’t helping. Nora continues to deteriorate and I suspect the counsellor doesn’t really know how best to treat her.

Nora’s school have suggested that trying – and failing – to keep Nora in school is counter-productive. The counsellor disagrees and thinks we should keep sending her in.

We take the school’s advice, because it feels like the right thing to do. Nora stops going to school.

By now, Nora is self-harming and suicidal. More than once, we’ve ended up in hospital, where we spend nights on ‘suicide watch’. Nora undergoes several psychiatric evaluations. These confirm what we now know: Nora is suffering a severe depressive episode.

Nora’s psychiatrist prescribes anti-depressants. We are relieved. It’s clear Nora needs more than weekly counselling sessions to get her better.

girlMonth four

Nora has stopped speaking. Completely. The only time I hear her voice is during her terrible meltdowns, when the weight of what she is enduring simply becomes too much.  These happen several times a day.

Following one particularly bad episode, we end up back in hospital. We are given a private room, because Nora’s meltdowns are so upsetting to the other children on the ward.

For the third time, Nora is assessed by CAMHS, who tell us they can’t treat Nora while she’s being seen privately.

We have to make a choice. The psychiatrist’s secretary calls me and tells me Nora will get much better treatment under CAMHS. I take her advice and we end the private treatment.

Month five

We are now under the care of CAMHS. We now have a team of people looking after us. There are people I can phone at any time of the day and night. Mental health professionals visit us at home several times a week. We have a new psychiatrist and a brilliant counsellor.

Time and again, these professionals tell me they have never encountered a child with symptoms as severe as Nora’s. This is frightening, but also oddly reassuring because I know she is – indeed – very, very ill.

This month is Nora’s birthday. Her friends come to visit with presents. She can’t speak to them, but they all give her hugs and I’m glad they’ve come. They cry, because they haven’t seen her since she fell ill.

She is pale, gaunt and silent. She has lost so much weight, her friends look like giants beside her.

Month six

Nora’s CAMHS team tell me they are ‘flummoxed’ and simply don’t know how to treat her. If they cannot come up with a plan soon, the next step will be to admit her to a psychiatric unit. This is a specialised unit for teenagers with severe mental health problems. Typically, children in this unit are aged from fourteen to eighteen. Nora is twelve.

We are told Nora will have to be fed through a tube if we cannot get her to eat.

Month seven

We have a care plan! It’s pretty basic but it feels like a huge step forward. It involves Nora doing things like getting out of bed by herself, eating regularly, getting dressed and getting fresh air each day.

Nora doesn’t think she will be able to do any of these things. She locks herself in the bathroom and tries to cut her wrists. Luckily, with the help of a neighbour, I’m able to knock the door down before she cuts herself too badly.

Although this is awful, it’s also a turning point. Gradually, we see tiny signs of improvement. And then something wonderful happens. Nora starts speaking again. Whispers at first, just a few words every now and then.

But every single word is precious. Over the course of her illness, I’d forgotten what her voice sounded like; I would watch videos I’d recorded before she fell ill, simply so I could hear her speaking.

Today (one year since the beginning of Nora’s illness)

Nora is speaking, eating, exercising and engaging with life. She sees her friends. She goes to the gym and goes for long runs most days. She writes poetry, and takes acting classes. She is rehearsing for the lead role in a play.

We don’t know what the future will hold but, then again, none of us know that.

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Causes of mental illness?

depressed girlIt’s almost a year since Nora’s illness started to manifest itself. Since then, many people – some who’ve never met my daughter – have offered their opinions on what might have ‘caused’ her catastrophic mental breakdown.

I’ve blogged before about people’s need to find reasons for mental illness. The problem is, mental health is a complicated business and trying to identify the causes of mental health problems is a tricky business.

Having lived through her illness with Nora, I’d like to think I’m better placed than most to understand why she became so terrible ill. I know we may never fully understand what triggered her illness, but we understand a hell of a lot more than we did a year ago.

I believe Nora’s illness was caused by a combination of:

  • Escalating anxiety, triggered by several factors including undiagnosed dyslexia and high emotional intelligence which makes her overly sensitive to other people’s feelings
  • Hormones
  • The challenges all young people face finding quiet moments in a world that never switches off
  • A genetic predisposition to mental illness

All too often, I’ve seen people wriggle uncomfortably when I mention this last one – a genetic predisposition. People don’t like to think of mental illness as something that can’t be ‘controlled’, but the truth is, mental illness – like all other illnesses – can strike anyone, at any time.

Yes, we can adopt ways of living that can build resilience and reduce our vulnerability to mental health problems, but the best efforts in the world won’t always make us immune.

In Nora’s case, she was a confident, happy, popular girl before she fell ill. She wasn’t being bullied, she wasn’t being socially excluded and – I’d like to think – she was part of a loving family.

But like I said, it’s complicated. Last week in the supermarket, a woman I barely knew told me my daughter’s illness was caused by a combination of Wifi signals in the air and the additives in processed food. I disagreed with her at the time, but what do I know? Maybe she’s onto something…

wifiSo, in the spirit of openness and sharing, here are some of the ‘reasons’ well-meaning people have put forward over the last year to ‘explain’ my daughter’s illness:

  • Wifi signals
  • Cyber bulling
  • Other forms of bullying
  • Lack of exercise (Nora has always been fit and active but, again, what do I know?)
  • Food allergies/intolerances
  • Social media
  • Undiagnosed autism

social mediaBefore I finish, a note on social media. All of us – adults and children – struggle to find peace in today’s world. The constant access to everything – emails, social media, internet – is exhausting.

As a society, we simply aren’t doing enough to help our children navigate this new world they’re growing up in. We need to find ways to help children switch off and have down time. However, to make a sweeping statement that ‘social media causes mental illness’ is over simplifying a far more complicated situation.

In our house – as a direct result of Nora’s illness – we have started switching off our Wifi for two hours every night, and no one is allowed any screen time, either, during these two hours. Scary, huh?

I don’t know if this will help my kids find moments of silence in today’s busy world, but I hope it might do.

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