Our “coping” and Surviving Hard Times with @RuthMancini1 #ThisIsAutism

By | April 11, 2014

This week has been a bit of a somber one at times, I’ve gone into detail here.. It’s been a week when T and D’s need for routine has been a relief but cuddles have also played a part.

This Is Autism

Tonight’s guest post comes from @RuthMancini1, it’s a very honest post which Ruth wrote on her website and she’s given her permission for it to be used here.

She’s also written a book – link here – which I’ve read and can recommend. I admire anyone who has the “oomph” to get that book that’s inside them out there.

Surviving Hard Times

“When I told my friend, Ingrid, that I had written a novel, she laughed. “So, working full time and bringing up two children’s not enough for you, then? You needed something else to do after you’d finished tea, put the kids to bed and done the washing up?” I know. Sounds like a recipe for burn-out. But it’s not impossible, and I know I’m not the first mother with ambitions to be a successful writer (or vice versa!) without giving up her day job…

Though, for me, that’s not the half of it. My oldest son, who I shall refer to as “J” was born both intellectually and physically disabled. He is a beautiful, complicated, funny boy who needs an awful lot of help. (Not to mention that I have found myself typing with only half a keyboard on my laptop of late – one of J’s less endearing habits being to pick off the keys, chew them, then deposit them in the toy box).

The truth of the matter is that “Swimming Upstream” has been a slow burner. I wrote the first draft 17 years ago and only around 3 or 4 years ago did I start breathing it back into life. Fortunately, the last 3 or 4 years have been relatively uneventful, emotionally, leaving me the mental space to write as and when I can find the time. The 5 years prior to that, however, were probably the most difficult of my life and writing was the last thing on my mind.

J’s birth was complicated, but no more so than many, and for the first 9 months we were blissfully unaware that anything was wrong. I noticed that he seemed to be slow to do things that other children were doing – he wasn’t sitting up or reaching out for toys, for instance – but the Health Visitor reassured me that some children just take their time. At 9 months of age J had a fit and we rushed him to hospital. The fit lasted a long time – a good 10 minutes – and even when it stopped he was listless and still, his eyes blank, and I thought he was going to die. I remember holding him in my arms in the front of the car as my husband drove the short distance to the hospital and pleading, “Wake up, J, wake up. Look at Mummy” over and over again. The next day he was diagnosed with epilepsy and Global Developmental Delay (GDD). We were told that his problems were “significant”. When we asked if he would ever walk or talk, the doctors couldn’t say.

For a long time it was hard to come to terms with, for both me and my husband, especially when seeing other children of the same age who were crawling, walking, running, talking, riding bikes – all the things that our J was supposed to be doing too. After our second child was born it was like having two babies at the same time, only one was bigger than the other and on a practical level this caused all sorts of difficulties. We bought a double buggy, for instance, which was impossible to manoeuvre and would only turn in one direction. J cried a lot of the time – whether from pain or frustration or general autistic distress at the everyday events his brain couldn’t cope with – we didn’t know. I remember crying, too – at work, on buses, at random and unpredictable moments, usually when talking about my children. In hindsight, I realise that I was suffering from post-natal depression. And all of this was compounded by some hurtful and unpleasant behaviour towards me from some members of my family at a time when I needed their support the most. Those events zapped my energy for months and even years afterwards.

J is now 10 and he still can’t talk, but he can walk, unsteadily, in the way that a toddler does. He has limited understanding and is mentally somewhere between the age of a baby and a toddler. He has never been officially diagnosed with autism but I am certain he is on the spectrum. As a family we now laugh at the funny things he does, such as walking into a room and turning the lights off while we are all sitting in it, then walking straight back out again. It may sound crazy but when he does something like that (or picking the keys off the laptop!) for the first time, we are delighted. It’s yet something else that he has learned to do. “Clever boy, J,” says his little brother. “Well done sweetheart. Mum, Dad, look what J just did?”

They say that in times of trouble you find out who your friends are, and I can categorically vouch for that. Talking was the key for me. Without my dear friends, Tracey and Clare and some wonderful women on Mumsnet (www.mumsnet.com), I honestly don’t know how I would have got through. Life is still hard at times. It’s never going to be easy, because J will always be dependent on us. He will never leave home, marry, get a job or have children. But it doesn’t stop me and my husband feeling happy and positive about the future.

There is a lot of comfort to be had in coming through hard times and knowing you can survive. I know so many fantastic people who are in the same position – or worse – who are not only surviving, but living truly amazing lives. And if they can take the worst thing that has ever happened to them and turn it into something positive … then, can’t we all?”

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2 Comments

rebecca beesley on 26th April 2014 at 9:47 pm.

What an inspirational story. So true that you do find out who your friends are when you have a child on the spectrum. x

Reply

Jeannette on 30th April 2014 at 9:12 pm.

So, so true and in our case, family too x

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