I have a confession to make. I’m no martyr. In fact, there are days when the absolute last thing I want to do is to be a parent - shhh, don’t tell anyone!
Whilst I love my kids to bits, the reality of having a special needs child is that it’s exhausting work. You have to think ten steps ahead at all times. You can’t do as many things together as a family. Cinemas are out, restaurants that don’t include cookies on the menu or plastic play equipment are a no-go and a ‘real’ holiday, one where you go a bit further afield than Grandma’s, seems impossible.
Before long, the wonderful ‘challenged-but-enjoying-it’ attitude you’ve worked so hard to show the world begins to crack. Suddenly you’re raising your voice to the kids. You’re hard-pressed to find the enthusiasm to eat a sandwich, let along prepare meals for the family. Housework is a distant memory.
My husband once mentioned to me a fantastic analogy for stress which I’ll share with you now: Imagine your life as a bucket, and the everyday stresses as the raindrops which fill it.
Every day, even if you don’t realise it, the raindrops add up. Some days a lot - perhaps Junior had one of his world-famous meltdowns in the middle of the supermarket - and some days hardly anything at all. Suddenly you come to the realisation that your bucket is almost full. You’re almost at your limit. Even just one extra drop and you’re going to overflow.
This is where respite care is worth its weight in gold.
Initially I was quite apprehensive about the whole idea of respite care. I didn’t much like the idea that I would be handing over my children into the care of a relative stranger. I was used to our son’s unique personality and worried about the poor respite worker being lumped with his difficult behaviour.
I needn’t have worried. Our respite worker Rose came for a ‘meet-and-greet’ before our first real respite night and she and the kids hit it off immediately. A huge plus for us was also that all workers contracted to our respite program carry a senior first aid certificate and other qualifications such as a manual handling certificate. Not to mention having specific special needs care experience in spades.
Some folks choose to use their allocated respite hours to run errands which they might not otherwise be able to fit in around caring for a loved one twenty-four hours a day. My husband and I have been quite lucky in that regard - we’ve always had various combinations of childcare, kindergarten and now school to give us that break during the day to get the basics done. What we were lacking, however, was time alone in the evenings. So we use our time on ourselves, often going out to dinner and a movie. It’s a wonderful time. Without the use of this respite service, we would have to give most of this up - it’s a rare thing indeed to find a regular babysitter who is both trustworthy and infinitely patient and we live too far from relatives to impose on them very often.
I once read a statistic that said parents of a special needs child have a much greater risk of divorce than the national average of about one in two marriages. Technically speaking, the odds are stacked against us. Having the ability to spend time together, without the added pressure of having our brains on auto-pilot, has been a godsend.
We think of it as ‘emptying our bucket’.
* This is the second in a series I’m calling The Mama Bear Files. Originally written 2005.
Postscript ~ Clearly, a lot has changed since this was originally written. We are still accessing respite care but a lot of the issues that were once prevalent concerning what we could do as a family no longer stand (thank goodness!) J was only 6½ when this was first written and now, at age 10, we’re blessed to have a lovely - and mostly agreeable! - child :)
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