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 aย 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 ~ย  Elvis Presley – written by Mitch Leigh, Joe Darion

Image Credit Mountain

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

 

mumturnedmom

 

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24 thoughts on “The Challenge

  1. Tracy reading that had me in bits. You write so beautifully and sum up living with an autistic child so well. There are so many rewards as well as challenges but the giggles make the day worth it. Thank you for sharing ๐Ÿ˜Šโค๏ธ Xxxx

  2. Such a beautiful and emotional post full of a mother’s love and pride. Your post is a great insight in to the challenges and rewards of having a child with autism. S sounds like a wonderful little boy. You shouldn’t have to take the judgemental stares or deal with the assumptions but unfortunately it’s the nature of (some people in) our culture. The photo of S with the chicks is so cute. Sending love xxx #ThePrompt

  3. A beautifully written, honest post Sis. You are a brilliant mum. You and S are lucky to have each other. Love you lots xxxxx

  4. This is such a touching post – you manage to share the challenges of living with your son (some of which are very scary like the tendency to run in front of cars!) while also making it abundantly clear that you adore him and that he is a real source of joy. And I love the image of a little boy carrying a pink handbag full of numbers – he SHOULD be able to do that without sniggers (and so should all little boys if they want to)! Our society can be so judgemental. You sound like a great mum. x

  5. Thank you for taking me through the challenges you face everyday, because for anybody else, it would be hard to imagine. I think it’s wonderful that you have described your experience as ‘rewarding’ which I think is the perfect attitude to have.

  6. Your words are so *real* Tracy, you & S live in thus real world everyday. I’m never seseed to be amazed at how you handle S……your child has autismn, some children have cleft lips, some are born with cystic fibrosis…….but you and your little man, plod along taking each day as it turns out in that morning. No planning what’s ahead in the day for you, because if S is not in the mood, you just adapt….no whinging, you are simply fabulous along with all the other parents whose children have either autismn or whatever life has chosen to throw at both the kiddies & the parents. What you’ve taught me is that it’s not just something that S is labelled with, it’s the whole family who deals with it and although you think you are very lucky to have S, I see that S is very lucky to have you. I’m sure thus could break many family’s but you, Mick, S and his brothers & sister are ONE GREAT UNIT.
    Ps…..lovely photos xxxx

  7. What a great post. I wish people who have no idea about autism could read this and see beyond the word and see that each child belongs to a set of parents who are doing their best for their child.

  8. Wonderful post Tracy, you have given me such an insight into life with an autistic child, but also moved me with your obvious pride and joy in your wonderful boy. Children can be challenging in many different ways, but I am with you 100% that it is our job as parents to meet those challenges, for them and for us. They might be challenging but they are also a blessing, and we are so very lucky to have them x Beautiful post. Thank you so much for linking to #ThePrompt and huge apologies for taking so long to comment, itโ€™s been a very busy couple of days!

  9. GO, NUMBER MACHINE, GO!
    The 12 times table at 5 is amazing.
    I work with a lot of students (computer scientists) who are on the autistic spectrum and their capacities for numbers and working out algorithms is stunning.
    Wonderful words. x

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