A friend suggested last year that I write a blog post talking about life with John from a parent’s perspective. The serious and not so nice bits and pieces of life with a child with autism that most of us tend to keep under wraps.
For example our feelings from the first moment we realised that we had a child with some additional needs that we hadn’t bargained for. The not so pleasant things we have to endure and how you deal with the blows so that you are able to pick yourself up to face another day and so on. I have thought long and hard about writing this as the blog is mainly about the positives in our life but it’s also about the reality, so maybe this post does have a place. You tell me.
It’s a longish one so maybe grab a cup of coffee and a Hob Nob.
When I was first pregnant with John I never really thought that things might go wrong. I hoped he would have his dad’s nose and my hair and then at least he would have a fighting chance of being reasonably good looking.
One day, about six months into my blissful pregnancy my mum jokingly mentioned that she hoped the baby didn’t have ears like my dad as they stuck out. I had never noticed them being sticky out but once she mentioned it I couldn’t focus on anything else. How could I have not noticed them before, they were huge!
Come to mention it, John’s other Grandfather had enormous Dumbo-like ears with long flappy lobes; thinking about it so did his dad!
Oh my god, what chance did I have of a normal birth, surely with enormous sticky out flappy ears like that he would get stuck. We would need a vet with a rope and a bucket of soapy water.
Suddenly I worried about all his facial features, would his eyes be in line, would he have a nice chin or an overbite and three sets of teeth. I went from a calm mother to a mad woman believing I would be giving birth to a child with every facial deformity known to medical science. His dad on the other hand only worried that there might be something wrong with his brain. I laughed it off, what on earth could go wrong with his brain. It was his ears he should have been worrying about and I told him so, often.
As soon as John was born I remember shouting “His ears, do they stick out? How big are his lobes? Are they flapping? Which way are his eyes facing? Has he got a chin?”
The midwife explained to his dad that it was just the drugs, his dad said nothing, he was busy organising a Mensa test to find out what his IQ was.
If our only problems had been that our gorgeous boy resembled Dumbo, we could have them pinned back!
John’s autism didn’t come to light for about eighteen months, however we had been kept on our toes during that time coping with his severe epilepsy and a brain deformity known as Cortical Dysplasia which had resulted in a large benign tumour growing in John’s left frontal lobe. This left him paralysed down his right side and with uncontrollable seizures.
His dad never once said I told you so and for the record John has normal sized ears, gorgeous eyes, a lovely chin and the right amount of teeth.
I have written in detail about this phase in john’s life in a previous post entitled ‘Reflections of a Miracle’ you may like to have a read, just scroll down the site. I won’t go into the emotional rollercoaster of those years but here is a brief summary of what he went through.
After two years of various diagnoses and every anticonvulsant on the market, John’s only hope of a decent quality of life was an operation to remove the mangled bit of brain that the surgeon casually called a tumour. The word sent shockwaves through us all; cortical Dysplasia although a mouthful was less frightening.
The operation was eventually performed at the Mawdsley hospital in London and was a complete success. John’s seizures stopped immediately and his paralysis was instantly reversed. For the first time he could move all his limbs and the light of life shone from his eyes like a beacon. Two years of intense heartache was now over and we looked forward, somewhat naively, to getting on with our lives.
As I said, I won’t go into any more detail; I will leave it up to you if you would like to read the above mentioned post. Instead I will concentrate on the effects that autism had and continues to have on our lives.
John recovered quickly from his brain operation, much more quickly than his dad or I did. While John rushed about on his new found legs and threw things all over the house with two arms that worked instead of just the one, we found ourselves in post op shock. I guess we experienced a bit of post traumatic stress as the enormity of what life was throwing at us started to seep into our consciousness. We cried a lot, laughed maniacally and inappropriately. We alternately hated eachother with a passion and loved eachother intensely. We had been through a war with an unseen enemy and turned the battle on ourselves. Apparently it was all perfectly normal behaviour for two people going through what we had experienced, we know that now. At the time it was hell.
Immediately following our return from hospital John became hyperactive, infact he didn’t sleep through the night for the next five years. None of us slept. We took it in turns staying awake with him and we were left exhausted. John preferred to sleep for just two hours, two random hours each day. I only worked 2 days a week at that time so felt it was up to me to do most of the waking nights. This turned me into a zombie. John’s dad was brilliant, working full time and yet always willing to dig deep when I couldn’t function any longer. This started to become more often. Come Halloween I didn’t need any grotesque costume to scare the neighbours, I would just pop my head out of the door and they would run screaming.
If I tried to play with John he would push me away and never ever wanted to be cuddled by me. He did however interact with his dad and there was relief for us both in that. They had a loving relationship where as my role in Johns life was purely functional. I adored my gorgeous boy and so felt bereft at not being able to hold him without him wriggling and screaming.
He was very demanding and rushed around the house all day yelling, never staying in one place and leaving a trail of destruction in his wake. He banged toys on every surface; opening doors and continuously banging them shut. He threw whatever he could pick up across the room and screamed in frustration most of the time. I thought I had gone deaf once because I realised that it had gone quiet; it turned out he had escaped while I was in the toilet.
John continued to escape for the next ten years. He even escaped one Christmas afternoon just before lunch but I was so consumed with the turkey that I didn’t notice.
He has been brought home by kind neighbours, complete strangers and by the police, twice. I can laugh now but at the time I was frantic with worry; the people returning him to me, once they saw the jabbering wreck on the door step seemed to sympathise with John for wanting to get away.
I felt ashamed at not enjoying motherhood and became envious of every mother who had what appeared to me to be a perfect life.
I am also ashamed to admit that I became intolerant of what I regarded as whingeing mothers who complained if their children were teething or had a runny nose and were disturbing their sleep. I developed a very effective tut and glare and kept it for whenever I heard a moan or whinge within five miles. People started avoiding me.
I had no energy, no patience and very little strength left. Everything seemed too hard, I had a prolonged attack of the ‘Why me-s’ and even questioned my faith in god.
God and I were still on good terms in those days, now we don’t even exchange Christmas cards.
I couldn’t work out what I was doing wrong and why John wasn’t responding to me in any way other than for food, drinks or nappy changes. I seemed invisible to him. I remember John’s dad and I arriving home from work one evening, John was being looked after by my mum and dad. John hadn’t quite mastered the art of walking. We both walked into the lounge and John was all excited and dashed towards us on all fours, did a big body swerve right past me and headed straight to his dad. It felt like an arrow straight through my heart. I wept on and off for the rest of the evening.
I realise this all sounds very me me me and indeed it was. I felt that it was a constant uphill battle just to get through each day and all for nothing. My son didn’t give a hoot if I was there or not; it was so unfair, moan, whinge…. ad nauseam. I was consumed with self pity which is most unattractive but that was how I felt at that time. I am certain there are countless other parents who have felt exactly the same in similar situations.
I am happy to report that this phase did come to an end. I had an epiphany of sorts, scheduled a meeting with myself and was threatened with the sack if I didn’t pull my socks up. What use would I be to John if I didn’t get some perspective on the situation, realise what was important, stop moaning and bloomin’ well count my lucky stars. Never mind all this ‘Why me’ ‘Why me’ malarkey, ‘Why not me’ for goodness sake.
John’s dad clearly thought I had been on the fortified wine or something, he didn’t say anything but he kept looking at me sideways and appeared unnerved at this calm, mother earth type who had suddenly entered the crazy house.
The good news was that she was here to stay.
Two days a week John and I attended a special needs group at the Clatterbridge Child Development Centre and he was as good as gold. It was a break for me to be with other mums who were in the same sinking ship as well as the various therapists; all who seemed to have the magic touch with my gorgeous little boy and I clung to their wisdom like a drowning man to a life raft.
We were given a place at Clatterbridge nursery when John was nearly three; it was the beginning of him being supported properly and of his dad and I having people around us who helped us learn a bit more about autism.
It was his teacher who first confirmed that he was displaying signs of hyperactivity; we had already guessed as John was like a whirlwind. She showed us a video of him playing. He whizzed around the room not staying with any one activity for more than a couple of seconds. I was able to talk to her about his behaviour and my own realisation that I wasn’t going to be able to help him develop without some expert help. I think that is when the word Autistic was first mentioned. I felt a wave of relief that maybe now someone had given ‘It’ a title, John would finally get some help.
As parents we were now members of The A Club and there could be no relinquishing of membership. It may help you to feel that you are not alone but no one would join it by choice.
The rules of The A club are:
- There are no rules
- Ask for help
- Be prepared to fight for everything you are entitled to and which every mainstream child gets automatically
- People will stare, get over it.
- Don’t give up
- Make your own rules.
We didn’t get a formal diagnosis until John was much older, without it John would not have been able to get into what was then called Wirral Autistic society, now known as Autism Together.
We didn’t suddenly become experts over night, it’s a continuous learning curve but we definitely had more of an understanding. We muddled through, sometimes with good humour and sometimes with heartbreak but we never stopped trying. Throughout John’s school life we gradually learned how to be parents of a child who is constantly being bamboozled by a world that they struggle to make sense of. Stanley Special School definitely unlocked John’s potential and I can never thank them enough for giving him every chance to achieve it.
As parents we got it wrong more times than we would have liked, however we knew we had help from the schools if we needed it. That support was a most important life line to all three of us.
Parents of children with special needs of any kind have to develop tough skins from early on if they are to survive the slings and arrows of outrageous misfortune and idiots.
On one hand John has lots of quite typical behaviours associated with his autism, not always socially acceptable. On the other he is no different to you and me. He has the same needs and the same desires. He is often treated differently though, fortunately less so now that there is so much more awareness and understanding of the condition.
During his early years I was horrified when one or two mum’s moved their child away from John at play group, presumably so their little darlings didn’t catch autism. It compounded my feelings of isolation at that time; it’s also heartbreaking to watch your child sitting alone at an age when children don’t and shouldn’t have a perception of difference anyway.
Fortunately this was the exception not the rule, most mums were lovely and very supportive. Thankfully John preferred being on his own and wouldn’t interact with other children anyway; an early sign of autism. It still hurt though to be left feeling as if your child had the plague. Shame on those who teach prejudice alongside the nursery rhymes.
If John is happy he gets loud, shrieks with laughter and jumps up and down slapping his head and rubbing other unmentionable parts. He looks like an England fast bowler trying to get a good shine on the ball before bowling out an Aussie. It’s quite challenging to ask John not to rub himself without drawing more attention to what he is doing! I gesticulate a lot but this can be misconstrued as me joining in so now I try saying ‘Don’t do that John…leave it alone’ but that’s just as bad and pointless really as after thirty seconds he just carries on regardless and oblivious to the stares and mixed reactions.
We got used to all the stares quite quickly but never to the rude comments and abject ignorance of people who should know better. We understood completely how strange John’s behaviour must have looked and indeed still does. I was never too far away from punching the perpetrators on the nose.
OK so I’m still not completely over it but I am getting better at just giving them my much practiced ‘Death Stare’
Toileting, potty training or whatever you like to call it is another difficulty that parent’s like us don’t really talk about. John was dispatched with his dad to ‘Watch’ how it was all done; he seemed to enjoy the whole demonstration but developed a penchant for only weeing in plant pots.
I am absolutely sure he never saw his dad do that but…..
All in all at the age of six he had progressed from plant pots, through to grids, then the bath until finally he made friends with the toilet. They became inseparable as he obsessed with the noise of the flush. He would stand for hours if we let him, flushing, taping the noise on his cassette recorder and roaring with laughter. He could spot a toilet a mile off and we spent many a smelly hour in public loos while John flushed and I wet wiped and disinfected him within an inch of his life…eiw! He is still fascinated and now flushes while he is having a wee so that he gets splashed with the water, such fun.
As for number two’s, for want of a better word, that took a good while longer. John loved the stuff so much that he treated it like play dough. A favourite game was to take his nappy off as soon as he woke up but before I could get to him; he would whirl it above his head and create a variety of patterns on the ceiling, walls, carpets, curtains and bedding. Damien Hirst would have been proud of his creations.
Several times he smeared it all over his room including the windows and deep into the carpet. Goodness knows where it all came from, well obviously I know where but there was always so much of it for a young child. The sight and smell will never leave me. I can hear the collective intake of breaths from those of you who know how that feels. You have my deepest sympathy.
We had to renew the carpet, the curtains and the bedding on each occasion and I know we weren’t alone in finding this behaviour hard to cope with. It’s beyond revolting even when it’s your own child and you rarely if ever tell anyone outside of your very close family. It always brought me to tears and I found it to be one of the hardest things at the time. I know that I am not alone in thinking that.
The good news is it did stop, as abruptly as it started, happy days!
I learned later that it is very difficult for someone with autism to distinguish something that is expelled from their body, i.e. poo, from their own internal organs etc. Therefore they might not feel able to let go incase their insides fall out. It can take years to be confident enough to use a toilet. Some people never do. I can see why now, as always hindsight is a wonderful thing but to my friends whose children have autism and are still not fully toilet trained it is a huge thing to deal with and has a big impact on their daily lives. Whenever I meet other parents with young children ‘ first question they ask…’How old was john when he was out of nappies?’
Families like ours depend enormously on other people; carers to help take our children out for a few hours so we can have a break, therapists of every kind, support workers, respite workers, social workers, psychologists and Societies such as Autism Together (formerly Wirral Autistic Society) with their hundreds of staff. Without all these people family life for us in the club can be extremely difficult and at times nigh on impossible.
We grow to rely heavily on their services even for the normal everyday pleasures enjoyed by most; for instance going out for a meal, just the two of you. The amount of planning that goes into such a simple thing is enormous.
The stress of making sure the support workers are booked, keeping your fingers crossed that they turn up because it’s never 100% guaranteed, and will they be on time? Praying your child doesn’t refuse to go out with them even if they do turn up. Hoping they are ok while they are out and not having a meltdown, hitting anyone or for whatever reason leaving the poor support workers with no option but to bring them back.
If you are lucky enough to actually get to the pub or restaurant there is a good chance you will be too stressed to eat. I guess that will ring true with many of you.
Challenging behaviour gets harder to cope with the older the child gets. There is no way you can just pick a 17 stone man up and remove him from a potential inflammatory situation if he refuses to cooperate. John has been fairly typical in terms of what he can and can’t cope with and his obsessions and rituals have remained the same for nearly 26 years. He adds a few new ones now and again just to keep us on our toes.
His challenging behaviours have been difficult to deal with at times but not surprising given that having autism is one of the biggest challenges anyone will ever have to face. There is nothing easy about being attacked by your child in whatever form that takes and believe me there are many. It is equally upsetting for John when his autism overwhelms him as it is for us to have to watch him disintegrate.
Then there is the need for routine which sounds nothing until you realise that the whole family is controlled by this need. People with autism are egocentric, life has to be lived their way if they are going to have any chance of coping let alone enjoying themselves. As a parent we become so trapped in the whole thing that we start needing the routines ourselves and panic if anything goes wrong. We are constantly living on the edge in case our child ‘ cope and has a meltdown. Actually ‘A meltdown’ isn’t a good description of their behaviour during such times, it makes us think of a slow, gentle decline when in reality it can be fast, fierce and is destructive both in terms of their own mental and physical health.
For someone with autism to feel safe and secure enough to be able to function they need everything to be ordered. Things need to stay the same. We decorated John’s room in exactly the same colours for ten years and he will still only dress in certain types of clothes. He only likes certain activities and so every day is groundhog day. People with autism need to know when something is going to happen, how, where, how often and why. They need constant reassurance about it so you will have to go through it at least every 10 minutes to reassure them nothing has changed. It’s exhausting and very stressful both for the person and for the parent.
This repetition day in day out should be used as a form of torture should our Military leaders ever capture the leaders of ISIS, they will fess up to all their secrets within a couple of hours, or shoot themselves.
As parents we can fall into the trap of making everything too rigid a routine,we want our children to feel safe and secure thus preventing a meltdown. Should we fail we are likely to get hurt and our child may hurt himself, on purpose. Infact we end up shrinking their world without realising. We believe we are doing what is right but really we are just hanging on to an impossible situation by our finger tips and in all probability making it worse in the long term.
At least that’s how it was with John. Scared of him lashing out at me and therefore unable to drive him anywhere, our world shrank to almost nothing. I depended on an agency to send support staff to take him out three times a week for a few hours, without them I would have gone under. I know that sounds dramatic but its true and I meet families all of the time who are drowning.
We are very lucky that John was funded by the local authority to be able to be supported by Autism Together after leaving school. It was a battle to get the Social Workers to approach them but they saw sense in the end. It was an emotionally draining time for us all however it marked the start of a new life for John.
Again, I wrote a blog post a couple of years ago about this transition and the devastating reasons behind it.It was difficult to write because John was really struggling and I lived in fear of him. So rather than repeat myself if you would like to read it just scroll down, the post is entitled “Crying is alright in it’s own way while it lasts but you have to stop sooner than later, and then you still have to decide what to do” C.S.Lewis. It is the most popular post and also one of the most moving; at least that’s what people tell me.
So, I think this is an appropriate place to stop with all this not so no nice stuff. Please let me know if you think it has been right to talk about the hidden side of parenthood for those of us in The A Club.
John still struggles to cope with his autism from time to time and it’s never easy to stand by and watch, knowing how troubled he must feel yet also recognising that I can’t always help him. Having said that his life is considerably better most of the time, thanks to the fantastic support of his team at Nelsons Croft. He loves them all and they love him back.
To all of you parents who never wanted to be a member of this club in the first place, I applaud you. Your lives are bizarre, your nerves are in shreds and you never know a moment’s peace…..but…..your kids are amazing, they are talented, funny, quirky, loud, embarrassing and exhausting.
You will never laugh as loud as when things are going well or cry as much as when things are going pear shaped. Life for those of us who live with or along side autism, is exaggerated mayhem with a smattering of madness thrown in.
You will meet people who will change your life as much as you will change theirs.
When you listen to other people’s stories you will reflect and thank god yours isn’t as bad!
For those of you who are able to look after your children at home, stay strong and be thankful for being able to kiss them goodnight even on the worst of days; they are coping with things you could never imagine.
For those of you whose children, like John, are now living happy lives, safe and secure in an environment where they can develop and progress, know that you have done your very best. You have given your children roots from which to grow and wings to set them free.
There can be no greater gift.