Additional Needs

The Ongoing Battle (The Myth of Sisyphus)

Posted by Jo Griffin on 15th July 2020 Additional Needs, Advice & Support, Disabilities

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It’s often believed that the early years of a child’s life are the most difficult.  Sleepless nights, toileting challenges or lack of communication can all add to the pressures.

Yet many of the special needs parents I speak to reflect that not only do many of these issues continue in their lives, but new challenges emerge as their child grows and develops.

Transitions such as puberty, secondary school, moving to adult services all bring periods of adjustment.  Society is less forgiving of an adult who displays behaviours that challenge in the supermarket than a child. The looks are more noticeable.

Even hard-won services feel precarious and we may have to continuously fight just to keep the status quo, such as at Annual Reviews for Education Health and Care Plans.  The fight goes on in perpetuity.

I am reminded of the Myth of Sisyphus.

In the Greek legend Sisyphus is condemned by the gods for eternity to repeatedly roll a boulder up to the top of a hill only for it to roll down again. It’s a metaphor for the individual’s struggle against life but it feels particularly pertinent for parent carers.

I felt like this recently when proposals were made to dramatically reduce my son’s therapies despite fighting for the provision last year.  All that fight and effort and here we are again.

So, what can we do?

As time has passed, I definitely feel more able to advocate for my son and my knowledge of our rights and the law have increased. I also realise that sometimes we need to let a battle go in order to win a war. I’ve learnt to pace myself so that I don’t burnout.

I’ve found that I can let others push the boulder up the hill with me, or for me, sometimes.  To rest at the bottom when necessary - the struggle can always wait a day or two. Also, to enjoy the view at the top for a while even knowing that it may be short lived.

So, we, as parent carers, continue to learn and develop.  Our landscape may stay the same but our capacity to cope grows.