I wonder if there are other parents reading this for whom the word “respite” holds incredible meaning?  If you are a parent of a child with high special needs, it will.

You see, the huge task of looking after a child with high special needs can’t really be fully understood unless you are their parent.  Only then can you realise just how much energy – both physical and emotional – is needed, day in day out, week in week out, month in month out…  only then can you realise just how desperately you need a break, some time out, some respite.

Just the other week, we got a phone call that we have been waiting for, and longing for, for about 18 months.  Someone may be interested in offering respite for our 13-year-old son in their home.

We used to have respite every month, but the couple who provided it moved away, leaving a huge gap in our lives.  We hadn’t realised just how much we had relied on those breaks, and how quickly their absence would wear us down.   In desperation we had tried all sorts of avenues: agencies, friends, school, politicians, but there didn’t seem to be anything.  There certainly weren’t any respite facilities available – in fact there appeared to be only one in the whole of our city and that had a waiting list!   So, it was up to us to find a family, or individual, who was happy with the relatively low pay involved, and willing to regularly look after our son.  Where do you begin to find someone like that?

In the end, it was someone who worked at his school who put their hand up.  She knew our son, had watched him grow up over the years, so was going into it with her eyes open.  She wanted to have a one-night trial-run.  Fair enough.  So we planned it for Friday the 16th. 

The amazing thing is that we didn’t worry about our son, not even for a moment, for the entire 24 hours.  We had some needed time out; we relaxed; we enjoyed spending quality time with our other child; we spent an enjoyable Saturday doing what most other New Zealanders would. 

Yesterday afternoon we picked him up.  He looked happy, healthy, and content.  We got our diaries out and planned for the next stay – next time it would be from Friday to Monday.  It’s almost too good to be true!!!

For many families there isn’t a happy ending.  They are forced to battle on without the regular breaks they so desperately need. It’s very easy (and cheap!) for the government to dole out carer support days (@ $76 per 24 hours of care and most families get about 28 days given per year).  But what’s the point if there are no suitable respite facilities to use? 

Politicians and policy-makers of the past few decades may think they’ve done a good job in closing down institutions and placing the severely intellectually disabled (and I’m talking severely/profoundly disabled) back in the arms of their families, in communities.  On the surface, I guess it does seem like a much better solution – it’s all so very “PC”.  But I think the pendulum has swung too far the other way.  Many families simply can’t cope.  We need help.  We need respite.

I think this is an important subject for parents of children with extremely high special needs.  If you are reading this, and have had similar experiences, I’d love to hear your thoughts.  How do you cope?