A Difficult Week

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One of the Boy’s biggest problem areas at school is playtime. This isn’t surprising as the playground is crowded and noisy – not to mention the unpredictability of unstructured play which autistic children struggle to cope with. He is a sociable child, it’s just that he struggles with the social rules that govern our society especially those which are unwritten.

Last Thursday we learned he’d had a ‘tricky’ afternoon. He’d been throwing stuff and pushing tables over in the classroom. There was no obvious reason for his behaviour, as is often the case. As usual I worried because this kind of behaviour tells me something is wrong. There’s always a reason for challenging behaviour so we tried to talk to The Boy about what had upset him but within seconds he started screeching like an owl so knew we left it. However, the following day we had our answer…

The Boy has been friends with a boy in his class and for the last few months it’s been ALL about this child. However, we were informed last week that the child’s parents had been into school to make a complaint against our son. They said their son had gone home saying that The Boy had hurt him at playtime. What their son didn’t tell them was that he (along with another child) provoked a reaction from The Boy by deliberately and repeatedly poking him. The reason The Boy had a meltdown in the classroom was because he was responding to what had happened on the yard. Unable to verbalize how he felt, he reacted in the only way he knows how and that’s to lash out.

All complaints are taken seriously by the school and an investigation took place. Witnesses said The Boy had been provoked and reacted to it.

I managed a small conversation with The Boy and he simply said his friend had ‘kicked him out of his group’ and told him he didn’t want to be his friend anymore.

My heart sank as all parent’s hearts sink when their child is ostracized in this manner.

Children fall in and out of friendships and there is nothing unusual about that but it’s no secret that The Boy has autism and there’s always a niggle of doubt about parents not wanting their children to have a friendship with him. This isn’t me being neurotic. The ‘niggles’ aren’t unfounded as it’s already happened with a parent who stopped talking to me as soon as I told her The Boy had been diagnosed with autism. The next day she looked straight through me as if I wasn’t there and after a few days of the same treatment it finally dawned on me why she was blanking me. It was the autism.

Is that what’s happened here? I don’t know. I do accept that I am overly sensitive at the best of times but, in my mind, most boys of this age will have scuffles on the playground and several times a week at that. Whatever The Boy did on the yard wasn’t considered serious enough for parents to be informed as is the policy when one child significantly hurts another yet these parents felt it necessary to complain so, yes, I can’t help but wonder why.

My son doesn’t instigate. He’s not vindictive nor a bully but he does react when provoked and I don’t blame him. All I can do is try and encourage him to walk away next time but as any autism parent knows, this is an impossible ask.

The loss of this friendship was a big deal for him but it explains the recent decline in his behaviour at school and at home. Had it not been for the child’s parents going in to complain we may still be wondering what the problem is so, in that respect, they did us a favour though I can’t help but wonder how it felt for them to learn that their son wasn’t the victim at all. That, actually, he was the instigator.

Children of this age normally drift in and out of friendships. Most parents will have experienced the ‘friends one minute and falling out the next’ only to be the best of friends again a few day later but from experience, I know that some autistic children are unable to forgive as easily as a neurotypical child and incidents are rarely forgotten. They remain in their memories for the rest of their lives.

Friendship is a difficult area for autistic people. Some make friends easily but struggle to maintain friendships. Others struggle to make friends in the first place. The Boy makes friends easily enough but there does seem to be difficulty in maintaining those friendships. Some children are unable to deal with his mood swings and steer clear of him. Sometimes he drifts in and out of friendships mostly because a child isn’t willing to play games on his terms, as is common in autism.

Those children who understand his autism (thanks to understanding parents) take it in their stride. They know he has meltdowns and why he has them and they don’t make a massive deal about it. They focus on the part of him that makes them want to be his friend in the first place. Those are the friends he needs.

We’re all social beings – even us misfits – and that’s why you’ll find us lurking on the internet where we can feel that we belong because people speak our language. Even I, Mrs Misfit of Misfitington, have a deep seated need to fit into this world in some meaningful way. It’s primeval instinct, after all.

All I want is for my son to feel that he belongs here because we all belong here. God willing, there will always be a special friend who will watch his back as well as their own.

“Piglet sidled up to Pooh from behind.
“Pooh!” he whispered.
“Yes, Piglet?”
“Nothing,” said Piglet, taking Pooh’s paw. “I just wanted to be sure of you.”~ A.A Milne

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Sons, Sand & Sauvignon

 

Copycat Crisis

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It’s been a difficult time at school for The Boy but then the first weeks back after the holidays always are aren’t they? At home he’s been a complete git. Much stroppier than any teenager I’ve ever known, myself included and he’s only six and three quarters!

On Saturday he went back to the children’s disability centre after a three week break. He loves going as he is able to interact with other autistic children, one boy in particular who he has taken a shine to. Unfortunately this boy is much older than him and is starting the teenage group in a few weeks. Whether The Boy picked up on this or it was just an extension of his struggles throughout the week, we don’t know but we were told he had a major meltdown in the park and had to be restrained by two of the carers because he was in danger of ‘bolting’.

Getting to the bottom of meltdowns can be difficult and sometimes we never understand what the trigger is. All we know is that he started hitting out and shouting that he ‘hated girls’. Then he tried to ninja kick the female carers who were having to restrain him. Thankfully there was a male carer who was able to calm him down. Apparently he was new so it was in at the deep end for him, poor sod.

The hitting out obviously isn’t new but I have no idea where this ‘hating girls’ has come from. Boys at school? TV? I don’t think this isn’t something that The Boy has come up with himself. It’s most likely something he’s seen or heard. It’s no surprise that boys of his age are starting to see girls as being, er, annoying so maybe he’s heard a boy casually say, ‘I hate girls’ on the yard but The Boy is literal and looking at it this way it’s easy to see how he could have interpreted it differently from his peers.

The thing about The Boy is that he mimics. If he hears words or phrases he likes the sound of he will repeat them whenever possible no matter how inappropriate they are to the situation. We have to be extra careful what we say around him but we’re human and occasionally slip up like when OH forgot himself and said ‘Bloody’ and The Boy repeated this at school. SHAMING!!

When it comes to TV, he’s nuts about Ninjago and anybody who’s ever had the pleasure of watching it will know that it centers around six teenage Ninjas – Kai, Jay, Cole, Lloyd, Zane and Nya. It’s a good versus evil with hormones thrown in. It’s normal for boys his age to be into stuff like this, right? Eldest boy was into The Teenage Mutant Turtles back in the 90’s while I had a secret crush on Shredder.

What? You’ve never had a crush on an animated character?

Er, moving on then…

The problem is when the child struggles to separate fantasy from reality…

My son thinks he is one of these characters. He talks like them. Raises an eyebrow like them. Stands with his arms folded like them, even on school photographs. He chooses the colour of his pants based on which Ninja he wants to be that day!

Worryingly he demonstrates his ‘ninja moves’ at school and recently this ended in him being carried out of the playground for time-out in the library. As a result Ninjago is banned before school. I only allow him to watch CBeebies in the morning. Yes, I’ve gone from one extreme to another but shows like Teletubbies and The Clangers have a relaxing effect on him. More importantly, Clangers and Tubbies aren’t on the receiving end of a ninja kick.. not that I’ve seen anyway.

The Boy was diagnosed with ASD as Aspergers no longer seems to be a stand alone diagnosis but he fits with Aspergers and many ‘Aspies’ are known to mimic, especially girls.

I mimicked as a child and teenager. In fact, a big percentage of my life has been to copy in order to fit in. It was a subconscious thing as a child but once I had an understanding that I was different, it became a coping skill in order to ‘fit in’ not that I ever really managed to. It’s only in recent years that I have allowed myself to be me because trying to fit into a society that you don’t understand is exhausting and thanks to my hormone malfunction (menopause) I no longer have the patience nor the inclination to be someone I’m not.

Me and The Boy differ in that sense that I never physically acted out in school at his age. At school I barely spoke and when I did the words wouldn’t come out right which only served to earn me the wrong kind of attention so I avoided it whenever possible which meant that things stayed in my head until I got home where I would ‘act’ it all out. Mum would testify to this if she was alive today as she was forever telling me off for shouting. This is one of the reasons she couldn’t understand the words ‘quiet’ or ‘shy’ on my school reports. It never occurred to me to tell her about what was happening at school but if she’d have listened at my bedroom door she might have realised that my play wasn’t imaginative but a word perfect reenactment of my day. The Boy is extroverted and acts out publically which creates problems especially as he’s fond of slapstick and all things ninja and so we have a big problem.

The ‘girl’ thing is being addressed at home and school and I’m confident it’s a blip. When it comes to Ninjago, it isn’t only restricted to the TV. He has comics, books, Lego and electronic games. His life is Ninjago and owls and any autism parent will understand about an autistic child’s obsessions.

This will be no easy task.

No matter what we do here at home, his male peers are mostly into the ‘good versus evil’ on the playground and though I have many skills as a mother, omnipresence isn’t one of them so I’ll have to leave that one to the school and concentrate on things at home.

Any ideas would be appreciated.

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Sons, Sand & Sauvignon

Send In The Clowns

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I was an anxious child and constantly imagined I was dying of something horrible. One day I noticed lumps on my wrists so I worried myself sick thinking of all the terrible things it could be when in reality they were my perfectly normal wrist bones. I wasn’t dying but I was suffering from anxiety and unfortunately the anxious child grew up to be an anxious adult.

You see, I’m a worrier. Glass half-full? How about glass smashed to smithereens all over the floor and shards sticking out of my size fours?

Anxiety in some degree is a constant but every now and then Blind Fear shows up doing a Slim Shady singing, “Guess who’s back, back again Fear is back, tell a friend”. At this point my body is screaming, ‘ENOUGH WITH THE WORRYING ABOUT STUFF YOU CAN’T CHANGE, YOU TIT!’

So Fear showed up about six weeks ago..

The signs had been there for a while. I was unable to complete the simplest task, struggled to read a sentence (let alone a book) and I’d lie in bed for hours with irrational thoughts zipping around in my mind. Not to mention that EVERYTHING (and everybody) irritated me.

I ignored it all.

In the last 7 years I have had to cope with a divorce, moving house (3 times) The Boy’s abrupt entry into the world and my mother’s abrupt departure from it, The Boy’s autism diagnosis and getting married. Oh, and the menopause. Stressful, no?

Things came to a head when I woke up one morning at 5am with a racing heart that refused to calm down. I’d been having occasional panic attacks for two years and I’d always been able to calm myself down but not this time.

This time it was different.

This time there was something wrong and I was terrified.

I woke OH up and begged him to phone an ambulance. At first he refused because he was used to me having panic attacks but quickly relented after I bellowed, ‘PHONE AN EFFING AMBULANCE!!!’ in his face.

Within twenty minutes the paramedics came and stuck things all over my chest.

‘Am I having a heart attack?’ I asked, my eyeballs bulging with fear..

“Doesn’t look like it. It’s just that your heart’s beating very fast and it’s jumping a bit so we’ll take you in to get checked out”

‘Jumping a bit’? It felt like I’d got sodding Diversity in there!

So I lay in the ambulance hoping for some comforting banter from the paramedic but he kept yawning and looking at his watch (you don’t get that in Casualty, folks) so I tortured myself with a bit of hardcore hypochondria instead which worked an absolute treat in keeping my heart rate through the roof.

To keep the story within an acceptable word count, my ECG’s and bloods were fine so after four hours of hyperventilating while listening to some poor sod making noises akin to a distressed Yak, I was given a beta blocker and told it was psychological.

“Not dying then?”

“Not today”.

At this point I’d calmed down. Death wasn’t pointing his bony finger at me so I was able to relax and then came the realisation that I was wearing my skanky dressing gown and reindeer slippers. Oops!

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Slippers of shame.

My dressing gown hadn’t seen the inside of the washer for about three weeks and it had various stains on the front.. mostly tea but one was curry. The Boy had attached a ‘Good Work’ sticker to me at some point so I covered the yellow stain with that TOTALLY forgetting that the doctor had already seen it along with my cactus-legs and scary no-make-up face.

THE SHAME!

You don’t care what you look like when you’re convinced you’re about to shuffle off your mortal coil, at least that is my excuse. *cringe*

The next two weeks were a blur of particularly nasty side-effects from the beta-blockers and then anti-depressants of which I managed ONE before telling my GP where to shove the rest. The drugs don’t work, they just make everything worse – some bloke from Wigan once wrote.

The drugs made me feel as sick as a dog and one day the sight of one of Mary Berry’s recipes actually triggered a panic attack. So I chose to come off medication and address my stress levels. That’s not to say that medication doesn’t work at all because it does work for many people. Alas, not me.

In those first weeks I existed from one hour to the next. The nervously knackered tend to think in minutes and hours as opposed to days and weeks. I became obsessed with my symptoms. My heart raced and there were moments where I genuinely felt I was losing my remaining marbles and would be carted off in a snug fitting jacket but I kept telling myself that they were just sensations caused by adrenalin. There were rare moments where I felt ‘normal’ and that in itself would trigger a panic attack!

In my lowest moments, I miserably thought I was broken and would never know normality again, or at least normality as I know it. Fear really messed me up this time!

I know about anxiety (am bit of an expert) and I understand that the worse thing you can do is lie on the sofa every day. Daytime TV is shit for one and I knew I was heading for trouble when I caught myself watching Jeremy Kyle’s (non) Emergency Room. So I pushed myself to work with the panic attacks by doing housework or walking the dog in order to burn off some of the adrenalin. I felt abysmal but knew that I would feel slightly better afterwards and slightly was better than nothing. At night I’d wake up with my heart racing but I’d breathe it out. If sleep still eluded me, I’d get up and clean something.

I’ve also removed all the news apps from my devices. It’s not that I don’t care what’s going on in the world, it’s just that my mind can’t take anymore grim faced drama. Recovery lies in understanding how a tired mind can affect the body. My body is working as it should. It’s reacting normally to me bombarding it with adrenaline with my negative thinking.

My recovery also lies in humour.

Gone are the police dramas and murder mysteries, for now at least. Happy Valley (a misnomer if ever there was one) remains unconcluded in my Skybox and I’ve turned to comedy to give my body the endorphins that come from having a good old belly laugh.

It’s therapy.

Optreden Rolling Stones in het Feijenoordstadion, Rotterdam; Mick Jagger , kop *2 juni 1982

Fear doesn’t like humour because laughter chases it away, if only briefly.

I imagine my fear to be Mick Jagger and when my heart starts racing I visualise him doing his ‘rooster strut’ and can’t help but smile. The effect is instantaneous and it takes the edge off my fear. Similarly in Harry Potter where the children take what terrifies them with scary bastard Bogart and make it funny. I think there’s a lot to be said for sending in the clowns when it comes to mental health. However, it’s not lost on me that many of the clowns themselves suffer from anxiety and depression.

It’s taken years to bring me to this point and there isn’t a quick fix, especially without medication but hopefully CBT will succeed where drugs have failed. I realise that my negative thinking has got me into this state so changing how I think should help to get me out of it.

Or maybe a lobotomy.

Worrying doesn’t take away tomorrows troubles, it takes away today’s peace.

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mumturnedmom

 

Autism – Life After Diagnosis

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The BBC is currently running a series called The A Word which is based around a little boy who has autism and his family’s struggle to come to terms with it. So far, his mother has struggled to come to terms with the diagnosis and while I can understand why some parents might feel like that – it wasn’t my experience..

Autism was suggested as a reason for his behaviour when he was 3 years old but prior to that we hadn’t considered it as an option. I knew very little about autism so I researched it and soon realised that he ticked all the boxes. One year later he was diagnosed.

The formal diagnosis came via a phone call. The pediatrician had told us unofficially that our son was autistic but she needed the full report before she could make it official and she was waiting on the speech therapist who hadn’t yet seen him in clinic. A change of plan on the day of his speech therapy appointment threw The Boy into a major meltdown to the point where the therapist was unable to work with him. As distressing as the meltdown was – we were quietly pleased that this would be going in her report. A few days later later the consultant phoned and gave us the official diagnosis of Autism Spectrum Disorder with Sensory Processing Disorder.

How did we feel?

Relief, mainly. We had concerns for the future, but what parent doesn’t? Before that I was more worried about him not receiving the diagnosis or having to wait because that meant he wouldn’t get the full support that he needed.

Having read a lot of blogs from autism parents it’s clear that we’ve been lucky. We’ve had no problems at all in getting an assessment, diagnosis and subsequently the right support. I know that many parents are not so lucky but each of us can only speak of our own experience as we find it.

Why Go For A Diagnosis?

Some people live their entire lives knowing they are autistic but never getting assessed formally. When you look at the figures for the amount of people in the UK who have autism, I would suggest that the actual figure is much higher. For some people, they know and it’s enough.

Early intervention makes a massive difference. The Boy copes in mainstream school with one to one support. Without it life would be very different. When I was a child, Leo Kanner’s narrow opinion of autism still influenced attitudes and my son would have been labelled a troublemaker and most likely expelled.

A diagnosis can:

  • Provide relief to the person and their family.
  • Allow access to services only available with a diagnosis.
  • Give better understanding of how to cope with any problems.
  • Provide access to financial support.

How To Get a Referral

Our journey was different to a lot of families as our son’s nursery manager approached us with the suggestion of autism. The child psychologist observed him at nursery and agreed that he should be assessed whereas most parents start with their GP. The one thing I would urge all parents to do is to document unusual behaviour when it happens and note what was happening prior to it.

If you suspect your child has autism:

  • Make an appointment with your GP. Prepare notes on what you want to say in order to get the most out of your ten minutes. If you feel you require a longer appointment, request one.
  • Keep a diary to log unusual behaviour.
  • Not all GPs understand autism. If you are not satisfied, ask to see another one. Trust your instinct!

Diagnosis and its Effect on the Family

Every parent/family reacts differently to diagnosis. For some it brings a sense of relief, for others they grieve for what they feel they have lost. It’s important to understand that your child is still the child that you’ve always loved. The only difference is now you understand that they have a condition and it’s down to you, with support, to ensure that they reach their potential in order to live their life to the fullest.

Siblings

Caring for an autistic child can be all consuming but you need to make time for your other children. Remember that autism affects the family as a whole.

Looking After Yourself

Caring for an autistic child can be mentally if not physically exhausting. It’s important to take time out for yourself in order to re-charge the batteries. Don’t be afraid to ask for support and accept it when it’s offered.

Talk

The one thing that’s kept me from going completely doolally is being able to talk about how I feel with other autism parents and sympathetic friends. Being able to talk (or type) things out can make all the difference in those low moments that we all experience. I’ve also phoned the NAS helpline a few times and they have been helpful and informative.

The helpline number is 0808 800 4104

Autism doesn’t begin with a diagnosis. It’s been there from the start and it will be there in the end but the right support can make all the difference. The difference in The Boy after three years of support is nothing short of amazing. He is loved and accepted for who he is because he goes to a wonderful school with people who care. More importantly, he is happy.

I gave some thought to potentially burdening him with a label but the benefits of diagnosis outweighed the negatives, especially with him being so young. Hopefully when he comes to leave school in twelve years time- having autism will no longer be an obstacle to employment thanks to programmes like Employable Me which highlighted how valuable an autistic person can be to the workplace when given a chance.

Ours is a relatively positive story but it’s not the case for everyone. There are some children whose autism is so severe that there is little hope of an independent life and that must be absolutely devastating for their parents to cope with. It certainly puts things in perspective for us. Life can be difficult but we know it could be a lot worse..

Life with an autistic child is an emotional roller coaster or at least that’s how I see it. There are highs and lows in every day. Sadness and joy. Hope and despair. Resignation and determination. Courage and fear.

But always there is love.

Sons, Sand & Sauvignon

 

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