Bonfire Night, Autism and Me

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For most people, November the 5th (or sometime in October until late November as it’s become) is a reason to celebrate with  bonfires and firework displays. As a person who has sensory issues I can honestly say that it is NOT my favourite time of year!

Before you mumble ‘miserable sod’ and hit the X on the top of your screen, allow me to explain..

As a child, I remember having a firework display in our garden at home. I say display but it was just my dad sticking some fireworks in an old biscuit tin filled with sand and setting them off one at a time.

Mum made soup and we stood about shivering waiting for the fireworks to splutter into life and you could bet that in any box of fireworks there would always be one that performed like a wet fart!

I wasn’t particularly safe with sparklers either but I did enjoy writing rude words in the air while Mum wasn’t looking.

I remember thinking that I should be having fun because I was a kid and that’s what kids do. But I wasn’t really having fun. I was cold. My ears hurt and my eyes smarted from the smoke that filled the air. I preferred to sit in my brother’s bedroom window and watch the displays light up the skyline. I’d sit there for ages until my eldest brother would tell me to shift so he could do his college work.

Mum started giving us the option of fireworks or money so I chose the money and sat and watched the fireworks from the window. For me, this was a most agreeable arrangement.

Ex hubs and I took the boys to a display once when they were little. We made sure our dogs were secured in the front room with the TV on loud but, still, we arrived home to a room full of poo, chewed up carpet and a video remote with teeth marks in it and it was decided that in future I would stay in with the dogs and he would take the boys to the local cricket club’s display.

I was relived not to have to cope with the noise and crowds but my relief was short-lived as my four-legged friends would totally lose control of their arses with each BANG.

Then there were the intermittent barfing sessions…

I would spend the entire night on my hands and knees, peg on nose and cloth in hand – disinfecting the crap (literally and metaphorically) out of the carpet while trying to stay conscious which was a BIG ask, trust me!

Autism

Most people who have autism have sensory processing issues to some degree. They are either under sensitive or over sensitive and bonfire night can cause a great deal of stress and anxiety.

Firework displays, in their nature, are unexpected because you never know what is going to happen and when. This is very stressful to people with autism who need structure and routine and to a child who’s senses are exceptionally heightened, the noise and blinding lights can be painful, not to mention distressing.

However, children with autism can have a positive experience on bonfire night but it does require planning.

Counting down using a calendar and social stories will help the child to know exactly when bonfire night takes place. Obviously it doesn’t just happen on one night now so while you can be prepared for any display you will be attending you need to take into account those that are happening around you on other nights. So be prepared to turn up the TV, provide ear muffs and distractions.

Showing your child a video of fireworks will also give them an idea of what to expect. Some schools do this as part of education about safety on bonfire night.

Do some research on the events in your area. Some events are disability friendly and are less likely to be crowded.

Ear defenders are invaluable when it comes to noise – unless you have a child like S who needs them but doesn’t like how they feel. I understand this though as I struggle with headphones for the same reason. Ear muffs are gentler. They won’t block out the noise but they will take the edge of it and they keep the ears toasty warm.

You could also jump in the car, park up somewhere and watch the skies light up. This is my favourite way of watching fireworks – especially with soothing music and a flask of something hot with a little nip in it – unless I’m the one who is driving and then it’s minus the nip.

If your child can’t cope with any of it then stay at home where it’s warm. Put on their favourite TV show and cuddle up. Don’t feel you have to do the ‘normal thing’. Understand that if everyday life provides a challenge for your child, imagine how fires and explosions will make them react. Even the fun stuff is stressful for the highly-sensitive autistic child.

S is excited about the fireworks because all his classmates are and he copies what he sees but this is the boy who screams when the hand dryers go off in the toilets or I put the hoover on and who struggles to wear the ear defenders that will keep the noise to a minimum. Noise triggers meltdowns.

For this reason, a public display isn’t a good idea this time but I do happen to know of a place where we can park up and watch the Manchester skyline explode without the sensory onslaught. I’ve uploaded the more gentler tracks of the Harry Potter soundtrack onto the iPod and, hopefully, it should give S a pleasant experience of firework night.

The lurcher will be safe at home with Classic FM on full blast as she seems to be made of stronger stuff than my terriers were, thankfully.

Whatever you do and wherever you go this bonfire night, stay safe and spare a thought for the those who struggle at this time of year.

Because of the poor economy, we couldn’t afford fireworks at our house. The only snap crackle and pop at our house yesterday was when I poured the milk onto my Rice Crispies! ~ Anon

A Bit Of Everything

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The Importance Of Respite For Autism Parents

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Caring for a child with autism is a labour of love. As parents we are strong because we have to be. However, despite our best intentions, the situation often becomes overwhelming.

S has highly functioning autism with sensory processing disorder. His main problems are social interaction and challenging behaviour. He is also extremely affectionate (especially with me) and as wonderful as that is it can also be problematic.

It’s a myth that autistic children don’t show affection. Autism is a spectrum disorder so while some children will struggle to show affection others (like S) will be incredibly affectionate. ‘That’s good isn’t it’?, some might say. Well, yes, but not when he’s being affectionate towards strangers passing the garden gate or the man who’s turned up to put the bathroom floor down.

S is an extrovert and his behavioural problems are a result of him being overwhelmed. To people ignorant of the facts he can come across as a naughty child but to those who know better – he is autistic.

Autism puts a strain even on the strongest of relationships. Parents of autistic children live under constant stress with situations such as melt-downs which can be exhausting for all involved. S is sometimes over his while I am still trying to process witnessing him having totally lost his shit. Yet somehow I have to pull myself together and get on with it. However bad I feel and however hard this particular melt-down has affected me, I have to postpone falling apart until I can do so alone.

The level of stress that parents of autistic children endure can be severe and that can have a long term affect on health. A 2007 study from the University of Wisconsin-Madison found that mothers of teenagers and adults with autism experience chronic stress comparable to combat soldiers.

This is where respite comes in..

Having a support network when you have a child with autism is important.

Most people have family that they can turn to for support but we don’t have any who live close by so our only option was to get S referred for a place at a local children’s disability centre for weekend breaks.

OH and I were not having any quality time for ourselves. At the end of the day we are both too knackered to do anything but watch TV, with me intermittently having to go to settle S back down. We came to realise that in trying so hard to meet his needs we’d been neglecting our own.

The way I saw it was that S had support in place at school and he had us but we had virtually no support as a family. Understanding that we needed help – we took the decision to get him assessed by children’s services for respite. We were accepted and he started at a local centre for children with disabilities a month ago and so far it’s working really well.

Three hours a week doesn’t sound much but it allows me and OH to do our thing knowing that our son is in good hands with people who won’t be fazed if he kicks off or goes on a very LOUD ninja-kicking session, as he is convinced that he is a ninja!

It’s lovely just being with each other because before S, there was an us and we need this time to be those people again, if only for a few hours a week.

As a mother of an autistic child I am always on call, even when he’s at school. I have to be ready for the phone calls to go and comfort him or bring him home. Only yesterday, I had to go and comfort him at school after he’d fallen down. He was unable to continue with his day until I’d comforted him. I held him for as long as he needed me to and then I went home.

Research shows that just one hour of respite a week can make a big difference and in my opinion, parents of autistic children need all the help they can get because autism affects the family as a whole, not just the individual.

Autism is a journey with more ups and downs than a roller-coaster but just as Paul McCartney’s willow tree stood strong against the storms, so shall we.

The willow turns his back on inclement weather;
And if he can do it, we can do it, just me and you. 

~Paul McCartney – With a Little Luck

A Bit Of Everything

Shining Star

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You’re a shining star, no matter who you are
Shining bright to see what you can truly be ~ Shining Star ~ Earth Wind and Fire

It’s hard to believe that it’s only been three years since I sat on the stairs listening to my little boy trash his bedroom in rage..

I remember staring at a big dent in the wall where he’d smashed the door back with such force that it knocked the plaster out. The fact that it was a rented house only added to the stress of the situation because ,at this rate, we would be kissing goodbye to our £450 bond.

My head felt sore from where he’d yanked my hair hair out and I had absolutely no idea why my child (who had been happy and smiling one minute) was now angrily launching his toys against the bedroom wall (I’d removed anything that could cause damage to him or the house, obvs) Was it something I’d done or said? Seemingly it came out of the blue..

Similar incidents had happened before but never to this degree. I’d experienced toddler tantrums with C but this was wasn’t in the same league and C’s tantrums were spectacularly bad.

I was unable to calm S down and it was impossible to reason with him. Bribery? That failed as well. Ma had died the year before so I could no longer lean on her for support while OH was at work. Never in my 24 years of being a mother had I felt so alone or such a failure. It was a difficult day, to say the least.

Only it wasn’t a tantrum.. it was a meltdown and S was diagnosed with ASD and Sensory Processing Disorder a year and half later. Finally it all made sense. I wasn’t a shit mother. My child was autistic!

I have documented S’ journey from diagnosis in this blog. We have had nothing but love and support from the onset from the professionals and the school. Knowing that a lot of parents struggle to get the right support for their autistic children, I count ourselves fortunate.

When S started school, he had major problems with the worst being social and communication. It became obvious that the 15 hours of support (as per his statement) weren’t enough. He had support in the morning but was out of control in the afternoon, especially at playtime’s or during other unstructured activities. I was getting regular phone calls to go and calm him down. The school requested more support, which they were granted, and then things improved in the afternoons as well.

The school have concentrated on his strength, which is maths. Last year, he wowed the school by being able to recite the entire twelve times table! Not many five year old’s can do that. I’m 44 and I STILL can’t do that but then, I’m thick, innit..

When he started school, he couldn’t take turns. He couldn’t share. He lashed out. He had meltdowns throughout the day and he wouldn’t write or attend assemblies..

Two years later he is a different child. He will take turns. He will share. He doesn’t lash out as much. His meltdowns have reduced. He still doesn’t do assemblies but the teachers understand that forcing him to do something which he can’t cope with is a recipe for disaster. One meltdown generally makes him unreceptive for hours, which means he doesn’t learn anything.

There has been an improvement in his writing as well…

Half-way through this year he was doing most of his work on the computer as he was refusing to write and most attempts to encourage him would end in meltdown. One day he decided he wanted to do it. He still holds the pencil cack-handed but the important thing is that, not only is he writing, but it’s voluntary!

I watched him write his dad’s name on his birthday card a few weeks ago. I watched in amazement as he curled the letters for the first time that I’d seen. Maybe most parents of six year old children won’t understand the importance of this but for parents like me, the smallest acts are usually the ones which stop us in our tracks..The wordDaddy’ written without help, prompting or melt-down changed a fairly mundane day into a momentous day.

S continues to use numbers as comfort. He is never without one in some form or other. His blackboard is a mass of sums, a stick picture of me (with my age above my head – 44 – Ahem!) and him holding my hand with his age above his head. I’m maths phobic. I HATE maths. Algebra? What the hell is that about? But the little Numberjack can’t get enough of the ‘M’ word!

Without the wonderful support he’s had, he wouldn’t be the boy we know today. He is proof of what early intervention can achieve when it comes to autism and special needs. He is different but he’s accepted and loved. He copes with his day because those around him understand his limits. He’s getting better at understanding them himself but still has bad days, like yesterday when he had a meltdown and lashed out at his special teacher. He hid under a blanket for a while because he didn’t like how it made him feel to lose control and when he came out, he did French. He NEVER does French because he doesn’t like how the words sound. Truth be told, neither did I. I wasn’t overly enthralled with French either but mostly because the teacher used to throw his briefcase across the room to get our attention, la psycho.

The class has a ‘Star of the Day’ award system which rewards good behaviour or work with being able to take in something of their choice to ‘show and tell’ the next day. S has many of these awards with the latest one awarded for doing French.

I think that all little children are stars. Their innocence shines light into a world that can sometimes be dark. Sadly, they morph into teenagers and the innocence is replaced with gobby one word answers like ‘So!’, ‘Because!’ and ‘Whatever!’ Not forgetting the standard phrase of the teenager on not getting their own way…

‘I HATE YOU, YOU’VE TOTALLY RUINED MY ENTIRE LIFE, I WISH I’D NEVER BEEN BORN!!!!’ *slam* *bang* *wollop*

I have no idea where S’ journey will take him or what form his teenage angst will take. I’m just enjoying who he is now because he is happy, therefore, I am happy and I am never more happy than when he flings his arms out to me and showers me in kisses in full view of all the other parents at school. He’s my star of the day, everyday.

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Creative Commons Image by Neal Fowler

The Play, The Protest and The Song

When my eldest strutted around his primary school hall as Joseph in Joseph and the Amazing Technicolor Dreamcoat in the early nineties, little did I know that one day his passion for acting would become a career.

So it was with immense pride that I took my seat in the Lowry theatre in Manchester on Saturday night while I waited for him to enter the stage as Edgar in the Northern Broadsides production of Shakespeare’s King Lear.FullSizeRender(1)

When he walks out onto the stage, the audience see ‘Jack’. I see a boy who’s arse I’ve wiped and who’s tears I’ve dried. I see my little boy all grown up. It’s quite a surreal experience…

Despite seeing him perform numerous times, the thrill never gets old. I again had to resist the urge to whistle and shout “Ey up Son!” as he walked on. I believe such behaviour is frowned upon. As is wearing a T shirt with ‘I’m Jack’s mum’. I’ve been threatened with disownment if do..

Directed by Jonathan Miller (I’m a bit of a philistine when it comes to theatre but seems the bloke’s got a decent enough CV) it’s Lear but with a northern twist. Northern Broadsides was founded in 1992 by Barry Rutter (who plays Lear). He’s an actor/director and famously cast Lenny Henry as Othello in 2009.

A great cast, complete with some heaving bosoms and obligatory semi-nakedness (courtesy of my son) Yep, kit off, once again! His complex character of Edgar showcased his range and ability to switch flawlessly between roles. Obvious parental bias aside, he aint ‘alf good at this acting lark!

My son, K, is a photographer and the lad’s got a talent for it. Photography is his chosen career having graduated from university last year with some impressive grades. I am immensely proud of him and so pleased that another one of my children is making dollar from doing what they love. I hope he makes enough to put me in a decent old people’s home. Hint. Hint.anti-tory-protest-70 (401x600)

Unless you were visiting another planet last week, you’ll be aware of the general election and the Anti-Tory protest that happened the day after David Cameron snatched back the keys to Downing Street. My son was there in his capacity as a photographer and took shots from the start of the protest to it’s end. Somewhere along the way he found himself ‘kettled’ by riot police. He told me he’d been kettled and I envisioned a copper giving him a clout with the station kettle. Apparently not.. Kettling is a tactic police use for controlling large crowds, such as protests, but it’s seen as controversial because innocent bystanders (like my son) get detained alongside protesters.

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He put all his shots into a blog post and gave his honest account of the day as seen as a photographer. The media didn’t show people singing and dancing. They didn’t show the peaceful side to the protest. They didn’t always show the unnecessary force used by the police.

K’s photographs show how things can turn from the good, to the bad, to the downright ugly. This was a peaceful protest, marred by a few individual morons, one who defaced a war memorial. An unforgivable and disrespectful act which the media chose to focus on, giving the impression that the person who did that represented everybody else. Not so. K was genuinely shocked at some of the things he saw. I’m proud of him for speaking out and showing what really happened instead of what the media brainwashes us with.

His blog post has been shared over 700 times on social media.

And last (but in no way least) is my youngest son’s achievement this week.

I opened S’ school home-book to read that he’d sang a song in the hall.FullSizeRender(2)

What’s the big deal? I hear you ask.

Well, S is autistic and he struggles with noise. He doesn’t go into assemblies and hasn’t been able to take part in any of the concerts so far. However, sometimes, when he gets obsessed by something, he is able to override his discomfort for a brief time. The topic this month has been about Kenya and for some reason, he’s really taken to it, so much so that he was able to go into the hall with all his friends and sing the ‘Jambo Bwana’ song on Wednesday.

This is a MASSIVE accomplishment for him.

It doesn’t matter that he couldn’t do PE that afternoon or that he had to comfort himself with his numbers in order to come down from the excitement. Those few minutes where he chose to engage with everyone else made it a fantastic day!

Yesterday was recorded as a “tricky day” which means he’s struggled but this is how it goes with his autism. One step forward and a few steps back but we focus on his accomplishments, no matter how small.

Way to go, my little dude!

As parents, we’re all proud of our children’s achievements.

My biggest achievement has been my three boys. Each one an individual and each one leaving their mark on the world in their own special way. I couldn’t be any prouder of my boys.

Thank you Mama Owl for this opportunity to ‘big up’ my kids! 😉

The most splendid achievement of all is the constant striving to surpass yourself and to be worthy of your own approval ~ Denis Waitly

Protest Images by my son used with kind permission, as in, I asked and he said “Yeah, Ma, don’t worry, I’m hardly going to sue my own mother ha ha”

Mama Owl

The Impossible Dream

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From the day a child is born, it’s our job as parents to teach them the skills they need to survive in the world. Those first weeks of total reliance fly by and before long, they are taking their first shaky steps towards independence. This isn’t the case for all children because many are born with disabilities which make independence a more difficult, if not impossible, goal to achieve.

There are different disabilities. Some are evident and some are not. My youngest son has autism – the invisible disability.

I knew that S was very different to his brothers quite early on. He was late with his milestones, i.e still crawling when all of his peers at playgroup were walking. His challenging behaviour went way beyond the ‘terrible twos’. His ‘tantrums’ were unlike anything I’d experienced before. They were extreme and as bewildering for him as they were for me. Then there were his ‘quirks’ and obsessions..

My fear turned to relief when, at four years old, he was diagnosed with ASD and SPD (autistic spectrum disorder and sensory processing disorder). It made perfect sense and I was relieved that there was a medical explanation for his behaviour. However, an element of fear crept back in as I realised what the implications of his diagnosis could be.

Two years on, S has received the best support we could ask for. He has a statement in place at school and a support teacher who works closely with him for the majority of the school day. He’s also been approved a place at the local autistic children’s group. This is so he can spend a few hours on a weekend with other autistic children. While it’s primarily for him to spend time in an environment where he can comfortably be himself, it’s also to give OH and myself some needed time to ourselves. Parenting any child is hard work but parenting a child with special needs is exhausting and can test even the strongest of relationships. This is why we’ve taken the necessary steps to get support for us as a family, not just for S.

Autistic people are capable of amazing things. Many if the world’s greats, past and present, are considered to be on the autistic spectrum. I don’t see autism as a curse, I see it as a blessing, albeit a mixed one. The autistic person can see beauty where others cannot. They can feel music deeply and when they read a book, they become part of the story. Their obsessive nature means that when they like doing something, like art or music, they excell at it. S loves numbers and by the age of four, knew, off by heart, the entire twelve times table. This is classic autism.

In my heart, I dream that S remains as happy as he is now but in my head, I know it’s an impossible dream because the statistics speak for themselves.

Children with autism are four times (or more) likely to be bullied (at school or via the internet) because of the way they communicate and interact with their peers. Autistic children are generally more trusting, have a poor sense of danger and can be manipulated very easily. The differences between them and their peers become more apparent with age.

I’ve already witnessed incidents in parks and on the playground with children laughing at S instead of laughing with him, as he thinks they are. To him there’s no difference between playing with someone much younger than himself, or older. He has no social boundaries. He thinks it’s perfectly OK to barge in to a group of tweens (or older) and expect them to play with him. I can’t control what other children do or think,  all I can do is help my son to develop the coping skills he needs in order to function. I want him to live, not just exist or be someone that he isn’t in order to fit in. The problem is with society, not him.

The challenging behaviour is a problem but it’s his reaction to an overwhelming world. It’s important to understand that. The behaviour has a function – there is always a reason. When my child displays challenging behaviour in front of other parents, it’s understanding that I need, not judgement.

In a perfect world, S wouldn’t have to learn how to ‘fit in’. He would be free to be himself and his quirks would be embraced instead of mocked. For instance, he came out of school last week and it was raining. He doesn’t like rain so he shouted at it. Parents stared. His peers stared. Wouldn’t they like to have the freedom of mind to be able to shout at the rain?

I wish the world was more empathetic to children like my son. But the truth is that people are selfish and cruel, choosing to boost their own self-esteem by demolishing someone else’s. They knowingly target the vulnerable with no regard of the long-term damage that they are inflicting on another human being. There is a lot of ignorance towards autism and I’m hoping, by spreading awareness, we can change this.

I can’t stop children being unkind to my son but I can intervene and give him strategies to cope. It’s because I was bullied by children and teachers, that I am extra vigilant. I am watching and ready to defend him. Education is the key to giving children an understanding of what it’s like to be different. How S’ autism is approached within the classroom, is something I will be addressing with the school, although I’ve had no real problems with them so far.

Like any mother, I just want my child to be happy.

My problem isn’t with my son, it’s with the people who don’t see him as I do – beautifully imperfect.

CC Image Credit Frankieleon via Flickr

mumturnedmom

 

The Challenge

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If your child has autism you may be familiar with the term ‘challenging behaviour’.

My son has autism and presents us with challenging behaviour on a daily basis.

It used to be termed as ‘problem behaviour’ or ‘socially unacceptable behaviour’ but that implied that the child was at fault – a problem to be fixed.

Challenging behaviour such as kicking, pinching, hitting etc could be due to communication difficulties, changes in routine, too much stimulus, too little stimulus, difficulties with waiting and taking turns and feeling unwell.

The challenge is in how we as parents, carers and teachers deal with it.

S was very young when I realised something was different. This post was written just before his fourth birthday and explains how we came to the conclusion that he might be autistic.

He was subsequently diagnosed with autism and sensory processing disorder shortly before his 5th birthday.

He has daily ‘melt downs’ and could give any teen a run for their money with his door slamming skills.

You can’t cure autism. It is a lifelong condition but it can be positively managed and that’s where the challenge is.

Parenting a child with autism can be physically and mentally exhausting.

I have had a few Grandmaster Flash, “Don’t push me cause I’m close to the eeeeedge I’m try-ing not to lose my head uh huh huh” moments but usually a few deep breaths and a slow headbanging session sorts me out.

It can also be incredibly rewarding.

It’s my job to recognise his triggers as best I can.

It’s my job to see when he is becoming overstimulated and adapt things in order to calm him down.

It’s my job to learn as much as I can about autism and him.

It’s my job to take the judgmental stares, the complaints and the assumptions and deal with it.

It’s my job to make sure that he (and we) get all the support we need.

It’s my job to see that he develops the necessary skills not only to cope, but to thrive in an overwhelming world.

It’s my job to make sure that he reaches his potential.

It’s my duty to make sure that he is the best he can be.

It’s a privilege to be his mother.

The negative side to his autism are the behavioural issues.

The positive side is that he never fails to amaze me. His photographic memory is nothing short of awesome.

When he laughs, he really laughs. My child doesn’t ‘suffer’ from autism, he is a very happy little boy!

He carries his numbers about in his pink handbag and he’s oblivious to the stares. One blessing is that he can’t comprehend that some ignorant twats are laughing at him. He thinks they are laughing with him. I know who I would rather fill the world with..

Five year olds are expected to be able to count up to 100 and know their 2, 5 and 10 times table. He’s been able to count to 100 for the last two years and knows the entire 12 times table off by heart. He can’t put his shoes on without help or hold a pencil properly but he’s a number machine!

Part of the challenge is to find ways to calm him down, especially in social situations. It’s trial and error.

His teachers recently realised that he was interested in the chicks and when he became overwhelmed in class, his support teacher would take him to sit by the tank. She kindly took these pictures to show us.

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The last four weeks have been incredibly challenging due it being the school holidays.

I have a few more grey hairs than I started the holidays with.

And the twitch is back!

Earlier in the week he ran out in front of a car that was driving onto the garage forecourt because he’d had ten minutes of stimulation. Children with autism can be ‘runners’ where they can slip away from sight in a few seconds. He got upset, not because of the car, but because I screamed out as I grabbed him. One moment of distraction is all it takes..

A bus ride last week was another occasion where we over estimated his level of tolerance. He loved the ride but when we got off, he couldn’t stand any noise at all and we had to go straight back home.

That’s the hard part for me, knowing that the enjoyable things in life do his head in and end in melt-down.

On reflection, a shorter journey with an instant turnaround would have been better. It’s important that he experiences ‘normal’ things but small steps are essential.

It’s a continual learning curve for us as a family.

Sometimes we get it right, sometimes we get it wrong. But in making mistakes, we are learning. That’s not unique to autism – that’s life.

With the challenges come the rewards of seeing our little dude make progress and thrive – especially socially.

I have sensory issues so part of the challenge is pushing myself beyond my limits but I am a mother first. I overcome because I need to – for him.

The positive to this is that I understand my son in a way that most people can’t and in turn it’s helped me to understand myself. I don’t just sympathise, I empathise.

Some days it feels like an impossible task but I remind myself that the goal is my son’s future and that gives me the strength to keep going.

Thank you for reading.

This is my quest, to follow that star
No matter how hopeless,
No matter how far
To fight for the right
Without question or pause
To be willing to march into hell
For a heavenly cause.

The Impossible Dream ~  Elvis Presley – written by Mitch Leigh, Joe Darion

Image Credit Mountain

This post is part of Sara at mumturnedmom’s linky.

 

mumturnedmom

 

These Wellies Are Made For Walking

School holidays… that time where, despite good intentions, parents are to be found sobbing into something alcoholic by the end of day three.

There are lots of amazing blog posts doing the rounds with pictures of crafting sessions and fun times but just out of camera shot, you can bet there’s a bottle of Gordons and a family size bar of Dairy Milk stashed in the cleaning cupboard next to the Cillit Bang.

Activities with S are limited because of his sensory and social problems. We have a lovely big park within a short distance but I’m still recovering from last Sunday’s trip where S had the mother of all meltdowns. ‘Damien’ was firing on all cylinders. Needless to say, it will be a few weeks before we’re allowed back by the fur hat and Hunter welly brigade. We soooooo lowered the tone. Oops.

There are woods nearby to where we live and it was a nice day yesterday, so I decided to take him for a walk in his wellies.

Walks have to be planned like a military exercise. I gave him warning using now and then prompts and I made sure I had plenty of things that he likes, technical word is incentives – commonly known as bribes.

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So if I don’t have a meltdown, I can have this, yeah?

Whenever we go for a walk, I have a bag of sensory objects, food, drink and his beloved numbers. We can’t go anywhere without his pockets bulging with numbers…

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Going back to my roots!

I love trees. I love how their roots splay across the ground, gnarled and twisted- like an old woman’s feet. Yet there is  beauty to them and the knowledge that this big ol’ tree, it’s bark tattooed with declarations of love, was once a tiny seedling.

These roots say, ‘I’ve been here for decades, I’ve seen some stuff y’know? so think about that before you shove your used condoms and beer cans in my hollows!’

Nature fascinates me. It brings something different to the table with each season. You could set your camera up on the same spot yet end up with hundreds of different images.

We should have more respect for Mother Nature, she’s amazing.

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Shadows and tall trees.

I’m not exactly into hugging trees but there is a special energy about them. I love lying down on the floor of woodland or a forest and gazing up at the branches… having carried out a poo inspection first. Obvs.

It’s so peaceful to gaze up into the sky..

Peaceful, that is, until some livid dog owner spoils it all by screeching “RAMBONE!, FFING COME BACK HERE, NOOOOOOOOW!!!!”

Rambone will most likely be found trawling through a bag of rotting food or rolling in fox shit.

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Shades of winter

I asked S to find things for me to photograph. Interestingly, all his suggestions were at floor level so I encouraged him to look up and around as well as down. He liked the colour of these leaves. After autumn’s explosion of colour, winter can be bare while it waits for spring to bring it to life. But there is colour and interest to be found even in the middle of winter.

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S getting tactile with a post

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The Common Fosteris Cannus

The ignorant of the species strike again. Why do people do this? They have no regard for where they live or the wildlife that they are endangering by leaving their rubbish about. Idiots.

Kids love sticks, right? So I asked S to go and find a stick while I took a breather on a mossy boulder. I watched him as he zipped in and out of the trees looking for one that took his interest.

He came staggering back with what looked like a small tree so I suggested that he downsize a little and eventually, he came back with this one.

He carried it all the way home and I had to keep explaining why he couldn’t poke it through people’s letterboxes…

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S doesn’t like the feel of paint or glue on his fingers but he will happily play with a dirty stick. That’s autism for you. Unpredictable.

It wasn’t a long walk and we were only gone for about an hour but it was a thoroughly enjoyable hour. I felt relaxed because there were no people about. It didn’t matter if he had a meltdown. Most everything else we do is stressful because it involves stimulus that S struggles to cope with and more often than not, people. In that one hour, there was nobody there but us. Bliss.

There are plenty of things that you can do with your children for free. You don’t have to spend money to have fun.

Here’s hoping that you made it through the week in one piece.

Next stop, Easter.

OMG!

Sitting, Waiting, Wishing

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Tomorrow is the day that we will find out whether or not S will be diagnosed as autistic.

I don’t need a diagnosis to know it. I’m his Mother and I understand my son but that doesn’t guarantee a diagnosis. It’s not down to me.

I have gone over tomorrow a thousand times in my head.

What if they diagnose him?

What if they don’t?

The scenarios are that they will:

a) Diagnose him

b) Not go for a diagnosis at this stage.

c) Reject autism as a diagnosis & discharge.

For me, only two are acceptable and that’s diagnose or delay because I know that S is autistic. I’ve lived with him for every day of his four and a half years and autism is the only thing that fits.

He has been cleared of any other health issues that could cause his problems.

S goes to speech therapy. He has no speech delay but he does have social communication difficulties.  Last Friday was his latest appointment and we’d spent all week psyching him up for it. We have to do this with everything out of his everyday routine. What we forgot to do was tell him that it wouldn’t be in the usual place…

S was in a relatively good mood as we set off but he immediately realised that we were going in the opposite direction and he shouted out that we were going the wrong way, (one of his obsessions are street names and roads- he memorizes them). We told him that we were going to a different place for the therapy.

Well that was it.

His mood changed and he became agitated. From happy to unhappy in 0.60.

When we got into the waiting room he wouldn’t sit still. He was hyper and talking in a funny voice. After about ten minutes the speech therapist came out and ushered us in. S was non compliant from the word go. He was grabbing things, babbling, shouting, swiping cards off the table, pushing the therapists arm away from him. We were there for about ten minutes trying to get him to sit down but he was too overwhelmed. So we had to abandon the session and she said it would be better for her to go and see him at school.

All this because we forgot to tell him of a change of venue. If that isn’t autism, I don’t know what is.

This is S. This is what he does, but sods law says that the two occasions that he saw the paediatrician during the assessment he was compliant.

It’s my feeling that we will have to wait a little longer and that’s OK with me. Autism doesn’t go away. If he is autistic, like we think he is, it’s part of who he is.

Tonight will be a very long night but I have to accept that at this point, I have no control over what tomorrow will bring.

All I can do is sit, wait and wish for the best outcome for my son.

“Are you ready?” Klaus asked finally.
“No,” Sunny answered.
“Me neither,” Violet said, “but if we wait until we’re ready we’ll be waiting for the rest of our lives, Let’s go. ~ Lemony Snicket – The Ersatz Elevator

Image Credit Gettys Girl

Heaven is my Home

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Ma died two years ago, S was two years old. To him, a child with a fixation with numbers, she was Nana number nine… because she lived at number nine!

And he still says it…

I had to forewarn him that tomorrow, we will be going to see his Uncle M and Aunty J.

“Ohhhh, Uncle M lives at number one, Mummy!”

I also told him that we’d be going to the “big garden” (the crematorium) to put some flowers down for Nana and Granddad.

“Nana lives at number nine, Mummy!”

He hasn’t seen his Grandmother since August 2011 but in his mind, she’s still there. Nana lives at number nine. End of.

He’s never asks when he’s going to see her again.

He never asks why he hasn’t seen her for so long.

He never talks about her except to look at her picture and say, “Nana lives at number nine doesn’t she, Mama?”

I just ruffle his hair and say nothing.

How can I tell him that she’s no longer there?

How do I explain that she died, that he’ll never see her again?

How do I talk about loss and death to a child who sees the world in a literal sense and who is still only four and a half years old?

Tomorrow we will take him to the crematorium. I’ll go through the motions of cleaning the stone and arranging the flowers. I’ll read the words engraved on the plinth, “The song has ended but the melody lingers on”.

S will have no concept that what remains of his Nana (in body) is there.

My son may be autistic but even if that’s the case, it’s wrong of me to allow him to keep connecting the word Nana with the number nine- the address of a house that belongs to someone else.

So this time, when he said, “Nana lives at number nine” with a heavy heart I said, “No, Nana doesn’t live at number nine”.

Words escaped me and I reverted to the only phrase that I know, “Nana lives in Heaven with Granddad”.

S didn’t question me, he simply carried on watching Numberjacks.

I didn’t push it either, I left it at that.

I know I probably shouldn’t have used the words “big garden”. I should use the word crematorium but the truth is that I hate the word.

Crem-a-tor-ium is such a glum sounding word. Urgh!

I know I have to talk to my child in the literal terms that he understands. I mustn’t use the word “sleep” or “rest”, it must be “died” or “dead”. “Nana was very poorly and she died”…

Heaven is a concept that he will learn because he attends a faith school. While I don’t necessarily agree with some people’s concept of God and Heaven, I do believe that we go somewhere but for now he will know of Heaven- so Heaven it is.

Ma believed in Heaven so I guess she’d approve. That’s presuming she made it through the gates. Well she did swear occasionally, mainly after a couple of gins.

Of course she made it to Heaven. God himself would have had to roll the red carpet out ready for Ma’s big entrance, and it had better have been Axminster or woe betide him!

S will never remember this wonderful lady or indeed his other Grandmother. He will never really know a Grandmothers love. I feel sad for him.

Ma loved all her Grandchildren. She loved their unique personalities. She was immensely proud of each and every one…all eight of them don’t you know! We were reminded often enough, especially at Christmas when it cost her “a bloody fortune”. She threatened it often enough but we never did have to visit her in the workhouse…

S was her “sweetpea” from the day he was born.

“How’s my sweetpea today?”, she’d shrill down the phone.

“I’ll give you sweetpea, Mother…the little bugga has done my head in today!!!” I’d sob back.

She loved him because he’s different.

He will never know her but I will make sure that he knows of her along with his other deceased Grandparents who died before he was born- his paternal Grandmother and my Dad. I intend to make up a little photo album, just for him.

But for now I need to work out how to tell him, in a way that he will understand, that Nana doesn’t live at number nine anymore.

You’re alone when you come in this world
You’re alone when you go
And it doesn’t matter who you are
It doesn’t matter who you know

Randy Newman ~ Heaven is my Home

Image source

Settling In

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S is now half way through his third week at school and, on the whole, it’s a positive report.

There were two weeks of transition. The first was until dinnertime and the second week included dinnertime. This week, being the third, has been full time.

Last week my concern was that he wouldn’t cope with dinner time, I struggled with this at school. The overwhelming noise and smells were too much for me. So I was concerned about how S would cope, but I needn’t have worried because Mrs C had it all in hand. She took pictures of him in the hall at dinnertime to reassure me and he looked fine. On closer inspection, I noticed that he had his ‘special’ pencil case with the pictures on, (Mrs C made this for him so that he always knows what he is going to be doing next). Also on the table was a number, as Mrs C knows that numbers are his obsession, strength and comfort. Also the hall wasn’t as full as I’d imagined it would be…

S has a little book which is for Mrs C and us to write in. She tells us about his day, more so his accomplishments. It’s a very positive book. It’s full of bright stickers which are another of his obsessions. He comes out with them all over his jumper as well!

Little man has had a few days where he’s struggled but mostly we’ve copped for it picking him up and on the way home but I’ve found a way to distract him…I’ve child proofed my old tablet and he can play Numberjacks on it. The word ‘Numberjacks’ calms him down if you do it before he goes into meltdown mode, It’s proving to be a lifesaver for me!

We had a meeting last Friday with SENCO and Mrs B, (the reception teacher). This was basically to go over his IEP, (Individual Education Plan). It was a very positive meeting, Mrs B had a few funny stories to tell us about S and I’m glad that, like us, he makes them laugh too because he is a likeable child. They all seem fairly convinced that he will receive the statement. But we have no complaints of how they have been working with him so far, in fact we are delighted!

This week he started full-time and we knew that this was always going to be difficult because S, like most other 4 year old’s, gets tired in the afternoon. So we have had a few erm, eventful days, put it that way. Yesterday he sat in the corridor with Mrs C and listened to the assembly going on in the hall. It will be a long while before he is able to tolerate the experience itself but for now he’s happy enough to look on.

So little man is officially ‘corridor king’ at 4 years old!

Unfortunately his school week stops here because he’s caught the tummy bug that I’ve had. He’s spent today lying on the sofa, covered in a blanket and surrounded by his beloved numbers. I hate this part of parenting because it means that I have to see my child in pain and as with most viruses, there isn’t much that I can do to stop it. I did however have masses of cuddles and a bottle of Calpol on standby. I had to suffer children’s TV for most of the day, but it was a small price to pay to give him a little comfort. I did manage to get a couple of hours of Sharon, Tracy and Dorian in Birds of a Feather when he fell asleep. Alas, he woke up when Bergerac came on and it was back to the cartoons.

I phoned school this morning and gave them the regretful news that S won’t be in until next week and I might have been imagining it, but I think I heard someone WHOOP in the background! Mrs C did look a bit frazzled when we picked him up yesterday…maybe it’s exhaustion of two and a half weeks of one to one with our cherub or maybe the poor soul is about to come down with the lurgy herself!

So we’ll see what next week brings…