A time of change: Mathew - getting through the day
“Looking back I wondered how our family ever got through those times.
If we did have a plan, it was just hope for the best, one day at a time. If there was a ‘big picture’ we didn't have the time to look… just getting through the day was difficult enough.
Each day was a set routine… there were tasks to be done… each task building on the other and if all they came together, it was a good day. It was a fine balance… if everything was done the right way, there would be a good chance that nothing would be triggered to make the day go wrong.
In some strange way our family had built a predictive construct on Mathew’s behaviour that was responsible for how we would feel. By our actions we believed by doing everything in a particular way, we would make it through the day and avoid the stress with Mathew’s behaviour.
It was a delicate balance between a good or bad day.
It didn't take much for Mathew to become uncontrollable… he may scream endlessly, hit people or break things. He may throw himself to the floor or collide with a corner of the kitchen bench or topple over the coffee table or crash down steps. Our day was filled with an expectation that something was going to happen and at the same time, hoping for a good day.
We all felt responsible for Mathew’s behaviour which may help explain our feelings of guilt. When Mathew caused a problem or upset an occasion, we all felt partly to blame. Even when Mathew was cared for by other people, we felt guilty he was not with us. It was a real dilemma, no matter what was done, we felt guilty.
Guilt may have been the reason why we were so hard with ourselves. It was like beating ourselves up… self-punishment for something we had or had not done… some sort of recompense we had to make… but why?
In hindsight, I understand the circumstances a little better but can’t explain why we responded that way. If you put it all down to stress then it is a shock to think that a family will contort their life in such a way just to get by... maybe that’s part of a natural response to stress… a family will do just about anything to avoid stressful situations.
It was at this time I started to realise that things have to change… we needed a break.
Arranging for respite care and planning for a holiday with the girls was probably our first step towards making a change for the better.”
Lessons learned
Each family’s circumstance is different; each family member has specific needs; what may be best for one person may not suit another.
Parents need to review coping strategies as needs or circumstances change. Strategies will be required for personal care, respite-short-long term care accommodation, independence and safeguards.
Parents must learn how to anticipate potentially challenging situations and plan ahead - planning helps overcome a natural resistance to change.
Changes are required when the demands of caring becomes unmanageable, overly stressful and contorts family life.