The elephant in the room

I have spent nearly seven years trying to get my head around the fact that we don't talk about the elephant in the room...

Depression!

Why is it so hard for us to openly talk about depression? It is estimated that one in six adults in the UK suffer with a mental illness, the most common of which being anxiety and depression. And we don't like to talk about it because... What, it's shameful / embarrassing / taboo? Why? If one in six adults may have a mental illness that means on average you could meet upwards of one and a half thousand people with a mental illness in our lifetime. So why are we so shy when talking about it?

As a parent carer of a disabled child or a child with additional needs we are more susceptible to being medicated for anxiety or depression. But medication isn't the only way to deal with this.

After twenty months of "what a shame you never got to experience a normal labour / first few months" blabber and my standard response of "but I know no different, this is our normal" I finally got it. It hit me like a tidal wave in the first three days, then I shrugged it off and thought it was just the baby blues that all mums get for the first few days after child birth. My second daughter had arrived and I did what I had always done, plodded on. It wasn't until maybe three months after she arrived that I spotted the difference, I was more animated and interactive with this baby than the first one. Why? What had changed? And what did it matter?

Well it didn't matter, not really, but that is hindsight and the knowledge of what was really happening talking. At the time it was huge, the biggest and scariest thing since my eldest had made her defiant way into the world. At the time I had realised that not only had I missed out on those precious moments with my eldest that I was now enjoying with my youngest, but she had missed out on them too. I had failed her by not keeping her safe in pregnancy, as my body had rejected her in the end, but I had failed in giving her the start in life she deserved. After all the trauma of a pre term birth, six weeks in hospital, numerous specialist appointments since, and life saving brain surgery, I had not made those moments in between as special as they should have been. Why? Because I was in a daze, I couldn't handle the"stuff" that was being thrown at us so frequently. But what was different now? Why did I treat my youngest so differently?

Because there was no expectation on me...

As a parent of a disabled child people expect your life to become dedicated to that person, they expect your world to spin on its axis and change direction forever. But it has already done that on the day you get told that all of your hopes and dreams for your Childs future may be nothing but that, hopes and dreams, unrealistic in this new world of disability. You are already consumed by fear, regret, guilt, and a whole bunch of other negative emotions. You need something that you hold onto to keep you at least partially sane, for me that was doing things I would normally expect to do, like shopping or going out with friends. I remember one time, while my little one was in hospital still, my cousin was going wedding dress shopping and I was eager to join her and my aunts. When I asked if I could go too I was looked at like some sort of joke had been shared that I had missed, I was astonished to be told that "no you have a baby in the hospital to look after, you don't have time to do these things."

I felt such shame in wanting to be a part of the special occasion that I relented and said "of course you're right..." I now realise what I should of said was that I had just come from the hospital after being thrown out at 6am as I had sat there all night and fallen asleep in the chair after having been there since 8am the previous day. Maybe I deserved a break, maybe I needed one to ensure that I was still me somewhere inside and not a tired shell.

So I felt guilty. I had realised that my first baby had been neglected of the all consuming need to bathe her in love because I had been too worried about my own identity in amongst the chaos of her earlier start to life.

So now the love that I smothered both of my girls in was eating away at me because surely it was too little too late... Surely I had already failed.

Do you see how it can begin and then spiral out of control?

But that's just ridiculous isn't it? Why would I feel guilty about wanting to do something for me, about trying to focus on all the different needs I had to address everyday for my first born. Well because that's what its expected of me.

As a parent of disabled child we try to conform as much as we can by way of making up for the fact that this one area of our life is not "normal". So we get easily upset when these simple things don't do as we expect. Like, for example, the lasagne turns out too crispy and you just freak out, throwing it in the bin. Completely overreacting. And when you tell people they all look at each other and mid knowingly, sharing some unspoken understanding that you have obviously lost it, you are failing as a parent, you can't cope with your disabled child.

Well no, what a load of rubbish!

I can't cope with the pressure society puts on me to cope! I can't cope with sitting in the dark alone!

I am lucky that my partner was, and still is, really supportive of me.   He sat with me when I cried telling me to let it out, he took me out when I needed cheering up, he put the children to bed when I needed to spend time being me not mummy, and he loved me more for sharing all of this with him.

So lets talk about it, it's not shameful it's normal! Every parent goes through it, we just have extra stuff that makes us put off dealing with depression, anxiety, and all the other stresses that we secretly hold inside. Make people aware of the fact that today is a bad day, but tomorrow might not be. It is our right and our duty to our own health to be honest about this.

So I mentioned that parents of disabled children (well carers in general to be accurate) are more likely to be medicated for depression than most people. Why is this? Because we have a responsibly to the health, safety, and wellbeing of another person that we all recognise as being really important to maintain, even when we are not doing so great ourselves. And because we lead such chaotic and busy lives, medication is the easier way to manage depression and anxiety. But there are loads of other ways too.

I found the burden of explaining that mum is on medication for depression at my daughters clinical appointments when completing family history was just as bad for me as being depressed and taking no action. So I took different action, I changed my medication from pills to exercise. I started going to fitness classes and joined a gym, where I caught a bug for living healthy. So I trained as a fitness instructor and swapped taking tablets for teaching classes. And it works. Whenever I am having a bad day, I learn new routines or throw myself into that nights classes.

Now don't all go joining the gym on my say so. Each person has their own piece of themselves that offers them a positive nuerochemical response (releases the happy hormone serotonin)

Mine is dancing, so fitness works really well for me. Other people I know enjoy crochet, card making, furniture restoration, running, gardening, and one of my friends finds solice in education so has thrown herself into training to be a teacher in SEN. And there are all the other alternatives too like therapy, meditation and mindfulness, and so much more.

What I am saying is that the elephant in the room doesn't have to block the doors and windows, it doesn't have to be so big that you can't handle it. Talk about it with those you love and trust, share your fears and concerns. I will bet you that they feel the same sometimes too and that they have also kept quiet.

Keep being honest with yourself and soon enough all those big scary emotions get put into perspective. They don't always leave, but you will find a way of looking at them for what they really are. Are part of you, not all of you.

As a parting note, I challenge you to tell a loved one about an emotion you experience today that you would never normally share... And explain WHY!

Good Luck x

Let's talk clinical - or not!

So my first post was a nutshell version of what happened when my family began. Upon reflection I can see that I have made the fatal error that all parent carers make when recounting their story, I have distanced myself from the emotion of the event, I have talked clinically about our experience rather than being truly honest about what happened. I have spoke as a carer rather than a parent.

 

So what do I mean by this?

 

Well it is fairly simple isn't it? As parents we gush about the positive things that happen in our lives, our babies first smiles, their first steps, their first words, in my sisters case his first major poo. But when we have to talk about the harder stuff, the bits that aren't so rosy, we don't really know how to say it. So we revert to what we know best.

 

When you have a child with additional needs you spend an awful lot of time talking to professionals, so you naturally pick up the lingo and start using the terminology like it's slang. The difficulty is the clinical terms and technical speak removes the emotion from what it is we are trying to say. But isn't that why we do it? Perhaps...

 

But what does it matter, we find a subject too emotional so we find a way to talk about it without being reduced to a blubbering mess. Well for us that might be great, as a parent of a child with some challenging complications I too find it unbelievably difficult at times to say certain things without being overcome with emotion and crying like a baby. So I avoid the hard stuff and skirt around the subject. But what does that do with the message I am trying to convey? Well for a start it becomes just words that a parent carer is saying, you loose the attachment to the truth. A professional, or anyone else that you are talking to will hear the details but they wont see it for what it really means to you. They don't see the pain, the tears, or the true hardship that simple everyday activities can cause us. When we tell it like it is, avoiding the clinical speak, we sometimes crack, we show how much these things can affect us and how it can, and does, overwhelm us at times. This not only shows just how real our fears and concerns are, but also it tugs at other peoples heart strings... I know it's not a nice idea that we might use this to our advantage, but actually it can be a benefit in ensuring that people see how real your situation is, and when you are looking for support or guidance it also helps to gain their emotional investment in trying to do their best for you.

 

What am I trying to say? Well firstly as parent carers we are not clinicians, so why would we talk like one? We meet so many professionals in our child's life that we get used to rattling off all the key points to tell our story quickly and concisely, we loose sight of the fact that we are the parents. We need to ditch this bad habit, not all the time but most of it, so that people can see us as parents once again, with specialist knowledge of our child's additional needs but not expecting us to provide all of the answers. Also this clinical approach devalues our children as children, they become a list of ailments and diagnosis. As I write this my two daughters are making popcorn with their Daddy getting ready for a movie. All I can hear is giggles and squeaks of joy as the kernels of ruby red corn explode in the saucepan, shaking the lid and sparking eruptions from the girls. If all I had just told you was that they were making popcorn,  you would never have understood the joy it brings to my children. So can you see what I mean?

 

Lets make a small promise together today. I vow to convey the emotion of what I want to say when I really need to. I will help others to understand the meaning of what I am saying and not become just another clinician in the room.

 

Can we do that? Yes we can, and I plan to start today...

How it started

So for my first post I figured it was a good opportunity to start from the beginning.

 

Our beginning is very much like everyone else's I suppose. I had a whirlwind romance and within a year was expecting a baby with the most wonderful man I have ever known. It was all what we would consider to be normal for the first six months, and then the scariest thing I ever imagined happened... It went wrong!

 

Being rushed to hospital in an ambulance with a driver, female I might add, telling you it's all in your head and just Braxton Hicks is terrifying, especially when your body is telling you that something is really not right. After being admitted we were told that I was in for at least five more weeks and then they would consider induction as at 30 weeks pregnant me and my baby were at war. Only two days later we were rushed into theatre as my baby had decided enough was enough, my body couldn't fight anymore, and it wasn't fun being pregnant like this.

Two hours of surgery later and my princess was born. Weighing only 2lb4ozs and smaller than the palm of my hand, my perfect princess was finally here. She was of course far from perfect. Being so small her tiny blood vessels couldn't handle the pressure of keeping her body going, and one burst. Fortunately it was a small bleed but it was in her head.

 

Two days after our little lady was born we were told the devastating news... She had brain damage and would be disabled. She had dead brain cells on the left side that control her motor sensory skills. Her diagnosis, Right Sided Hemiplegic Cerebral Palsy. But that was not all, after a few more days they noticed that she was developing Hydrocephalus too.

 

And so began our journey as parent carers.