Hidden costs

There has been a recent ad campaign from a charitable organisation (to my shame, I can't remember which, but a reputable charity) which quotes the extra cost of raising a disabled child as £26000 per annum. Just to make that clear, I don't mean that raising a child with a disability costs £26000 a year total, but that it costs £26000 MORE per year to raise a child with a disability than a child without. James is 5, so my quick calculation tells me that it will cost me £338,000 MORE to raise James up to his 18th birthday than for parents of non disabled children. That's a rather large nest egg that we won't be able to leave him.... Ironic, really, as he will need the money more than most, as he probably won't be able to work or live independently.

So where does this money go? What are these extra costs? Well, some of them are hidden, results of the impact of a disability on the whole family. As I write yet another cheque for more school jumpers (he's chewed through around 6 so far and that's only in one term....) I tot that up - 18 school jumpers a year at £10 a go = £180, most parents I know buy 4 or 5 for the whole year, so he's just cost me an extra £130 or so. Add in the polo shirts I had to buy at M&S yesterday and you probably have another £40 excess cost. He's chewed through a second coat this month, I don't think many people buy three coats a year for their reception age child. He usually comes home from school with a full change of clothes on, so there's twice the amount of washing to do, and that's without the extra sheets and pyjamams that often need changed overnight. Luckily, nappies are now provided free, but wipes are provided by us. I wonder how many people have bought 6 copies of the Mr Benn DVD? James has a "thing" about spinning the discs in their cases and then biting them so they're no longer usable. At first glance, we have a sizeable DVD collection, but many of them are duplicates or triplicates, and a lot of them are unusable. We haven't actually got the time to sit down and go through them, workign out which to throw out and which to keep! When we go on holiday, we have to rent a three bedroom property as James has to sleep on his own. So even though we're a family of 4 we are looking at properties aimed at families of 5 or 6 - that's another £200 or so excess. Then there's my work - I am back one day a week, but because I no longer work out of hours, my pay has been cut dramatically. In fact, my loss of earnings is probably over the £26000 mark, so every penny I've mentioned so far is in excess of this. Our childcare costs are higher than if James were not autistic, and our childcare choices are limited so we're stuck between a rock and a hard place. For James to access any extra curricular activity, he has to be accompanied by either myself or my husband. If Bea is coming too, we all have to go, which is obviously often the point of family trips, but sometimes I would like to be able to take the children on my own somewhere.... Many families buy in extra therapy to complement (or in some instances even supplement the lack of) resources provided to them through health. I used to take James to music therapy at Nordoff Robbins in Gospel Oak - a journey of about 12 miles taking 45 minutes on a good day, a fair amount of costs incurred in petrol and wear and tear on the car. The sessions were £20 and I also paid a babysitter to look after Bea, which was £30 for the afternoon. So for a 30 minute session, it cost me £50 plus petrol... Multiply that by 30 weeks and we're talking about £1500 per annum before petrol. This is just the tip of the iceberg.

Then there are the emotional costs to us as parents. Those are not financially quantifiable, but have an impact far beyond emotional wellbeing. The impact on our wider life can't go unmentioned. If James wasn't as disabled as he is, it is likely that my husband would have climbed the career ladder faster and we would be far more financialyl stable. We're not struggling, unlke many other famlies with disabled children, but things would be easier if we had a bit more security. That said, it is perhaps ironic that around the time that James was diagnosed he was toying with applying for posts in the financial sector and had he been successful, he could well have been at risk of unemploymnet now, so James may have brought hidden costs, but perhaps he has brought some hidden protection.