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

Imagination Makes A Cloudy Day Sunny

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It is a happy talent to know how to play. Ralph Waldo Emerson

The 70’s was the decade of all things naff. Naff clothes. Naff decor. Naff gadgets with the height of luxury being a teasmade. Yet as hideous as it was with it’s tartan clad teens with wing spans for collars, children still enjoyed the best toy ever designed..

Imagination.

The 70’s was arguably a difficult era with strikes, three day weeks and the rise of Maggie and the Morons. Times were grim, even more so when Thatcher finally moved into number 10 in 1979.

Though times were difficult, we didn’t go without. We always had a toy on our birthdays and Santa didn’t disappoint at Christmas, despite Ma’s threats of having us put on the naughty list. We had pocket money every week which we had to earn by doing chores – mostly crap ones. Ma was SS trained and woe betide us if we moaned about doing them!

My mother was ALL about routine and her routine was cocked up something rotten during school holidays. She looked forward to the long summer one with the enthusiasm of an inmate on death row. Bless ‘er.

To be fair, we were annoying gits.

We lived in an old house with what seemed to me to be a massive garden. In retrospect it wasn’t that big it’s just that most things seem bigger from a child’s perspective, like Cadbury’s Creme Eggs.

There was a garage (separate from the house) which I wasn’t allowed to play in, not that it stopped me. To Dad, it was a place of sanctuary – somewhere to indulge his carpentry skills while Ma scoffed her way through a family sized bag of Revels during her monthly psycho do’s. To Ma, it was a place to banish him to when she wanted to watch The Gentle Touch. To me it was escapism.

One venture into the garage almost proved fatal because while I was having a root around one day, an old back door fell on top of me. By some miracle I was pulled out with just a scratch on my nose. My traumatised mother gave Dad a verbal lashing for leaving the garage door unlocked. I have no recollection of the door falling on me but Ma assured me that it did. Incidentally, a bang to the head would certainly explain a few things. Ha ha

From then on the garage was strictly out of bounds. Or so they thought because I knew where the key was kept. 😉

To this day the smell of engine oil and wood shavings are evocative of the hours I spent in there. When I wasn’t trying to kill myself under back-doors, I was reenacting my favourite TV shows, like Dallas. I could do a mean impression of Sue ‘AM GON KEEL YEEEW JR!’ in those days!

When I walked in it ceased to be a garage. It was like entering a musty old wardrobe full of moth-balled coats and walking out into Narnia. If only in my head..

I didn’t need other children to be able to play. In fact, I much preferred to play by myself. Other kids seriously cramped my style.

Toys of the 70’s were simple. Star Wars was one of the biggest films of the decade so there were the gratuitous naff toys to accompany it.  We didn’t have Kindles. We had comics and books. The highlight of my week was buying a new Enid Blyton and Christmas was never complete without an annual of some description. I do have a Kindle but I still get the biggest thrill from the old fashioned way of choosing actual books from a shop or using the library.

Technology?

Pong was as techno as it got. And it was shit.

Children watched Why Don’t You And Blue Peter for rainy day inspiration and they’d get all creative with a bog roll holder and some Plasticine. For me, rainy days were the perfect excuse to curl up for hours on end with my books because reading was where I found my bliss – escapism at it’s best.

While a part of me says you can stick your technology, another part of me is thankful for it because my son has autism and it’s proved invaluable to us.

It’s a myth that people with autism don’t have imagination. Some of the most creative and imaginative people have Aspergers Syndrome. Hans Christian Anderson, for example, is thought to have had it.

S has an elaborate inner world. It may be very different from the way his peers see the world it but in my opinion the autistic mind is a beautiful mind.

He has obsessions, the latest being Lego, or Legouch as I call it because I keep standing on the sodding stuff. Every day is about Lego, specifically Ninjago (Masters of Spinjitzu) have to give it the full title or he tells me off. He watches the cartoons then reenacts what he’s seen. He lives and breathes the stuff in the obsessive way that is a common of autistic children. I may be crippled from constantly standing on the stuff but at least he’s over his obsession with serial arsonist, Norman Price of Pontypandy. Small mercies, folks.

S is happy in his world. Technology helps him to cope with the real one a little bit more by providing a distraction from the overwhelming stimulus. However, there was a simplicity in the era of my childhood that no longer exists. We are living in a digital age where children choose to stay indoors over playing outside. I already find technology to be totally overwhelming and I fear that with each technological advance humanity will take one step closer to becoming disposable. A sobering thought, no?

Yes, the 70’s was a naff-fest in fashion, decor and, well, everything but children climbed trees and tired themselves out playing. In those days, most children knew how to play.

Image Credit by JD Hancock via Creative Commons

mumturnedmom

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

Some Mother’s Do Ave Em

Mother’s Day is a comin..

It’s the day where grown children dust off their old dears and take em to a garden centre. Or the pub.

As a society, we pay homage to our mother’s – acknowledging their sacrifices of body and mind.

Body because the average mother’s stomach looks like a deployed airbag once it’s housed a couple of babies. The bigger the baby, the bigger aftermath. Trust me, I know!

She will declare that she loves her stretch marks because they remind her how lucky she is to have been blessed with children. She wears these battle scars with pride.

But occasionally after having consumed the best part of a box of Shiraz, she can be found slumped over an old photo of her teenage self sporting a crop top and single chin .

She jabs at the picture with a Wotsit and slurs, ‘Thash uhsed to be me!’

And mind because all mothers succumb to insanity at some point.

Like millions of mothers, I’ve woken up on Mother’s Day to cards being thrust in my face, alongside cremated toast, anaemic looking tea and flowers that look suspiciously like next doors tulips.

Cards such as this one where I’m depicted as a svelte looking Princess and for some reason – blonde.

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For a while I was on a pedestal. This would change.

They mutated into teenagers – that’s why it changed.

I was turfed off my pedestal to make way for Nintendo, Cricket and South Park.

One memorable Mothers Day, K kicked open the bedroom door and presented me with his card and a mug of tea. He was older by this time and the tea had evolved into something actually resembling tea.

I noted that there was nothing from my oldest child.

My ovaries died a bit.

21 hours of utter agony giving birth to him – complete with enema, intermittent vomiting, a seriously pissed off midwife who was bearing the brunt of a staff shortage, three stitches, having to walk like John Wayne for the next two weeks and the MOTHER of all haemorrhoids which to this day still gives me gyp…

Miffed doesn’t begin to cut it.

My stretch marks flamed bright red (like Harry Potter’s scar when Lord Volderface was close by) and my Farmer Gile started itching like a bugga – always does when I’m stressed.

Nostrils flared, I flounced downstairs in my dressing gown and fluffy slippers to unleash Mothergeddon on my first born.

I plotted my revenge.

I would refuse to wash his cricket kit. Let him wash his own sodding jock strap. Ha!

And never again would I drive him around to deliver his papers because he was late and in danger of a docking of pay.

Then I heard the front door open and close.

A few minutes later, he walked in.

He placed an envelope on the mantelpiece.

He looked shifty.

He looked very shifty.

One solitary word on the envelope.

Mother

I opened it to find an untitled card with a old fashioned lady on the front.

I looked inside and this, dear reader, is what I saw.

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His dad was walking past. He glanced at it and said, ‘You’re dead, son’.

It was half way through Mother’s Day and the Co-op had sold out of cards – so he’d improvised. Bless ‘im.

Once my eye stopped twitching –  I saw the funny side.

All I ever wanted to be was a mother and if I leave this world having accomplished only that, I’ll die happy. An extra bonus is that I am fortunate enough to have some awesome step-daughters. I get to buy girlie things and have chats about hair and stuff. I enjoy that. It makes a change from boys stuff.

Speaking of which…

These are my boys – my greatest achievement.

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 Some Mother’s really do ave em!

To Mother’s everywhere – I salute thee.

Enjoy your day. x

Mother’s hold their children’s hands for a short while, but their hearts forever. ~ Unknown

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

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The Next Chapter

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Little man ended the first chapter of his schooling journey today…

Technically he left nursery in July but due to his difficulties we felt that it would be beneficial for him to attend the nursery for one full day a week to remain familiar with the learning environment, that way it would ease the transition into school. It was also a bit of respite for me. It meant that I could wander into town, go and have a coffee without fear of S having a meltdown.

He raced into the nursery this morning clutching his gift for his special teacher, a box of chocolates for the rest of the staff and of course, a treat for the children, his friends. Despite us constantly telling him that it was a ‘thank you for being lovely’ gift, he still ran in shouting “It’s your birthday today, Teacher V!”

We wanted him to enjoy his last day, so we didn’t linger about and I’m proud of myself that I didn’t cry when I gave him a kiss goodbye.

I wrote about school yesterday and how I’m dreading next Tuesday but today there’s been a heaviness in my heart because this wonderful chapter in his life is coming to an end. Despite his difficulties in the early days.. he’s settled and thrived in a loving atmosphere. We chose the nursery over others, which were a lot more modern, simply because it felt right. The first time I saw the manager (Teacher L), she was comforting a child in her arms. She’d a lovely smile and twinkling eyes. I will never forget her kindness and support with S. It was obvious that she loved the children in her care. Sadly she announced her retirement just before the Easter holiday. I joked with her that S had finished her off but she looked at me, smiled and said, “I would fill this room full of children like S if I could, it’s been a pleasure to teach him”.

I said, “We are talking about the same child here?”

Little man seemed to cope fairly well with the new manager apart from one incident where Teacher L turned up for a impromptu visit and it did his head in. As in, he took it literally that he would never see Teacher L again so when she walked in he picked up a chair and threw it at her. It’s things like this that drive it home to me that my child is different…

When we went to pick him up, Teacher V had already left, which I was a little sad about because I wanted to thank her for all her help and support with S over the last year.

He was irritable and he wanted me to hold him. For some reason his trousers were on the wrong way round. I’m pretty sure they were on the right way when he arrived there but he sometimes strips off when he goes to the loo. No idea why.

I suppose I’d better get used to seeing his clothes on back to front because children are encouraged to dress themselves at school and I remember C & K coming home with jumpers on back to front, inside out and not always their own.

S didn’t want to give hugs or kisses to anybody and he wouldn’t make eye contact. He was tired and exceedingly grumpy. He did not want to give the nursery manager, (Teacher T), a hug or a kiss despite her requests. That’s how S is so we didn’t see the point in distressing him further, so we said goodbye and walked through the door for the last time.

I didn’t cry…

As we walked down the street we passed a group of young lads on bikes. We were just about to turn the corner when one of them shouted.

” SCUSE ME MISSUS…DO YOU KNOW THAT YOUR KID’S GOT HIS TROUSERS ON THE WRONG WAY ROUND?”

I smiled, nodded and muttered, “So does everybody else now thanks to you and yer big gob!”

Teacher T gave us S’s ‘Learning Journey’, two books recording his progress at nursery from when he started in September 2012 until last Friday. We went through them when we got home. Both have his photograph on the front but in the first one when he started nursery, his expression was guarded, as were most of them throughout that first book. In the second book he is smiling on the front and all the way through. He is happy. He’s thrived in a loving atmosphere. We made the right choice…the photographs prove that.

That’s the moment that I cried.

But it’s OK…little man was elsewhere hammering the crap out of some Play Dough, so he didn’t see me blarting.

I don’t know what the future holds for little man but I will never forget the teachers who gave him this wonderful start in life.

So as one chapter ends…another begins.

The best teachers teach from the heart, not from the book.  ~Author Unknown

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