There was a news headline last week that caught my eye : that the respite provision for parents of special needs children had been cut by 15% on average. Well in 2015, our experience has been 100% reduction as our provision closed back in February and there is nowhere like in within our own local authority boundary. We have had to opt for a great facility for Joshua, that took us an hour and a quarter to get to on Friday afternoon!
fortunately Joshua is a great traveller and he is likely to sleep on the journey, but the distance from home is a concern largely due to his seizure activity : if Joshua has a seizure en route, he is vulnerable as he will be in a rural area between cities and so he could be many miles from his nearest A&E department, but Transport are not trained to administer his rescue medication, simply to call 999 and keep him safe while waiting for the ambulance. If we receive that call advising us that Joshua is on his way to hospital, we too could be over an hour’s drive away from our son.having seen the terror on his face before once when he arrived at A&E without us by his side, it is not something that I ever want him to have to go through again.
Our need for respite as a family is such that, after 8 months without any overnight provision, that we are keen to accept the best that our neighbouring local authority can offer. But it does not come without it’s risks and worries. I have had to fight hard for this and am not going to let it go without really trying to overcome the issues and give it a go.
but I know there are other families who were left without ‘ short breaks’ as we now call respite, who have not fought as hard as we have, so have been left to muddle through. Who no longer get that family time without the demanding son who dominates every weekend and evening with what he can and will tolerate. Due to local authority cuts in this valuable service, children are being limited in their weekend activities simply because they are too difficult to manage and to take out, without an army of family to support their anti- social behaviour. In many cases, if they do not get their allocated one weekend in four ‘off’ then enormous pressure is heaped on the family as respite acts like a safety valve – you can cope with the sleepless Saturday night or the embarrassing scene in the supermarket, because you know that next weekend you will have some freedom to recover while your child is being taken good care of.
without that safety valve , day to day life may become too demanding and stressful for some families, and the whole situation could explode.