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
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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.

mumturnedmom

Creative Commons Image by Neal Fowler