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Spectrum Planning's blog is a great resource for empathetic hints and tips along with a wealth of experienced advice for a range of matters related to raising a child with special needs in Australia.

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stress 1

SPECIAL NEEDS FAMILIES AND STRESS PART ONE: ACCEPTING IT, MANAGING IT

Erika O'Brien June 23, 2014

It is 9:30 am. My empty coffee cup in the sink testifies to the fact that I did actually gulp down a coffee this morning, despite the fact that I have absolutely zero recollection of that event. Every ounce of my being has just gone into remaining beautifully cool, calm and collected while coaxing my child (who has ASD) to abandon his cosy reading spot on the couch,  get ready, and into the car. He and his siblings have finally been dropped at school, one minute before the bell, to avoid that sensory explosion called the playground, and I am wishing I could just go back to bed. You see, we’ve found ourselves stuck on a roller-coaster ride, and we’re not in Disneyland either! The emotional ups and downs of a child with ASD can be stressful and exhausting.

Now, time to relax. Wrong. I have to race back to the school with the essential ‘nice soft jumper’ that we couldn't find this morning. Oh, and I think I accidentally cut the gluten-free sandwiches into triangles instead of squares, so I had better swap them. Then, apart from the regular household chores, there are therapists and teachers to contact, specialists' bills to be paid, healthy snacks to prepare, endless essential reading on my son’s latest challenges, and visual aids to be made. Dinner must be made too, as there is therapy this afternoon. Somewhere, it would also be good to squeeze in a regular job to earn an income to help pay for all the therapy.  Did I mention that I also have two hundred perfectly folded paper planes on the living room floor that need to be dealt with?

I am thankful, though, for this break in the day from the intensity of ASD. While I do have wonderful moments with my child, my experience with raising him is very different to that of my neuro-typical children. From the words that you speak, to the positioning of food on a plate, to how many degrees the bedroom door is left open at night , everything must be 'just so' when you have a child with ASD. Walking on eggshells all the time can be a form of chronic stress for everyone involved. Those who haven't experienced it may try to encourage parents of kids with ASD with comments like, "All kids are like that".  Sometimes I wish they could have more of an insight....perhaps a 'reality tv' show showing families living with ASD would be a good start!

While I am thankful for my break from ASD during the day, I know that there are other parents out there who continue to care for their children full time, on top of managing everything else. For them, stopping to consider their own needs, or earning any kind of income might be inconceivable. Professional counsellors urge us all to slow down, but we feel like we can’t, because everything depends on us, doesn’t it? 

Stress. It is inevitable. We are all almost all familiar with it, regardless of our walk in life. Yes, it can sometimes be our friend, motivating us to positive action, and we do need to accept that it will visit us quite regularly. There is no point wasting energy on wishing we had a stress free existence. But we all know that this ‘friend’ can quickly become an enemy if we allow it to set up permanent camp in our lives.

MANAGING STRESS IS ESSENTIAL…

Because we, as the parents, are key to our children’s future well-being

There are many things out of our control, but with the right balance of self-care and perseverance, we all know that we can impact our children’s lives more than anybody else.  We are not, by any means, the only significant people in their lives, but we are key. Apart from helping them through with therapy and schooling, all children need to feel loved and secure, and we are in a much better position to do that if we are able to manage our own stress.

Because we can concentrate more and achieve more when our heads are clear and our memories are working! 

Looking after a child with special needs can leave us feeling overwhelmed - as if we are constantly in a crisis management mode. Taking steps to manage this kind of stress helps us to feel more empowered to move forward with our goals for our child, including therapy.

Because our stress is contagious

For me, an even greater motivating factor for managing my stress is the impact it has on others in my immediate family. Yes, others can catch my stress, including my husband, and children.  I can catch their stress too! 

Recent studies conducted at the University of California and New York University by Berry Mendes, Waters and West have shown that “emotions are not simply concepts that live privately in the mind, but rather affective states that emanate from the individual and may influence others” (2014). In particular the studies found that, if an infant was reunited with its mother just after the mother had experienced a degree of stress, the heart rate of the infant would mirror that of his/her mother.  

It follows that overly stressing ourselves can also have a big impact on the emotions and behaviour of our special needs child, who may already be living with his/her nervous system on high alert. Naoki Higashida (2007), who has autism, made this heart-wrenching plea:

 “ But I ask you , those of you who are with us all day, not to stress yourselves out because of us. When you do this, it feels as if you’re denying any value at all that our lives may have – and that saps the spirit we need to soldier on. The hardest ordeal for us is the idea that we are causing grief for other people.”(p 71)

Naoki’s words moved me profoundly. Yet, it is important not to be overcome by guilt for the times we have had our own mummy/daddy meltdowns. We have to accept that we are only human and that raising a child with special needs carries with it an enormous amount of stress. We must always forgive ourselves and move on.

In moving on, we do need to remind ourselves that, as we have seen, taking some time out to replenish is not selfish. On the contrary, it is part of loving others, and it can bring enormous benefits to our children and our whole family.

Because poorly managed stress can harm the relationship with our partner

One grumpy partner often equals two grumpy partners, but we need to have the emotional reserves to support each other. A stronger marriage can result from managing our stress. 

So, it’s official. Too much stress can work against us in so many ways, especially when we have a child or children with special needs. In my next blog, I will look at some concrete ideas to help us manage stress.  Now, I am off to school pick up...but before that, I will do some deep breathing to prepare for the "finger-bun battle" which I will face , as I do every day, as we pass the bakery found so conveniently opposite the school gate.

 

contributed by guest blogger Erika O'Brien

References: 

Berry Mendes, W., & Waters, S.F., & West, T.V. (2014, January 30). Stress Contagion. Psychological Science, Vol 25, 934-942. Doi: 10.1177/0956797613518352

Higashida, N (2013) The Reason I Jump. (K.A. Yoshida & D. Mitchell, Trans). Great Britain: Sceptre. (Original work published 2007)

 

 

 

 

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