I recently had dinner with a friend and a few others and a conversation we had has been bugging me ever since. During the meal, I got a tap on the shoulder from another friend who I haven't seen for almost 2 years. I spent a little time talking to her and her husband at their table then rejoined the group I was sitting with originally. I recounted part of my conversation with the couple and was a little surprised at the response.
My friend and her Husband care for their autistic son. They also have a Daughter. Our conversation was partly about the lack of help the local authority give the family despite overwhelming need. They do amazingly well considering their son never sleeps. He gets into all sorts of problems including constant attempts to climb out of windows and often he self harms by banging his head on a table or even the floor or a wall. As a result, he needs almost 24 hour care and attention. The couple have to have separate holidays so that each can take care of their son while to other gets a little rest from the routine. It also gives them the opportunity to spend some quality time with the Daughter, who, despite being a teenager, helps out immensely so has had a weight of responsibility on her shoulders since a young age. Local authorities only step in if a family is "in crisis" and then the help is often so far in the future that is next to useless.
So this brings me to the conversation that has been troubling me. I mentioned to my the friend when I returned to my table that they had been asking for an extra night a month respite care. They currently get 18 days a year.Their son is now 16 and he is getting very big thus harder to handle and more aggressive as puberty kicks in. For every extra nights respite they get, they will have 1 day removed from the care they already receive. This is extra help??? This is robbing one area to pay for another. SO I expressed my disgust to my friend and she thought the authority were doing the right thing. "Other people don't get that much annual leave" , and "There is only so much money in the pot" was her response. WHAT! Is this how people see respite and is this why Local authorities are so reluctant to help family's BEFORE they reach crisis (despite helping them afterwards is always so much more costly)?
Imagine, if you will, the scenario. Close your eyes and imagine yourself in the shoes of those parents. You're son will never grow into independence. Every day, you get 2 hours sleep and are woken from that sleep with either a scream, kick or a crash. Maybe even some days a trip to the hospital because your son has found something to cut himself with or has thrown himself against the wall so hard, has broken something. You have to deal with his needs like they where an extension of your own. Wash him, feed him, wipe him after the toilet, dress him. He can't tell you what he wants, you have to guess if he is in pain, needs a drink, wants the toilet. You have to find things to occupy him every day and fight for the treatment, therapy and care he needs every step of the way. You are told that he can only attend school 3 days a week because the help isn't available. If this were a mainstream child, you would be imprisoned for not taking to them to school 2 days a week yet for a disabled child this is acceptable. You can see the REST OF YOUR LIFE stretching before you with this the prospect for every single day.
You love the child and you do not see this as a burden but you yourself need time to to contemplate and replenish to allow you to continue this unrelenting regime day after day. Yet you cannot get the help you need because some IDIOT who sits in an office and has never lived this life or had contact with people that do, has decided that the money is better spent on building a new road, paying some executive bonus or an advertising company to tell the public "How well we are doing". Perhaps the idiot has had contact. But it was an interview for an hour with you. You were having a reasonable day that day. You had got 3 hours sleep because a friend had looked after your son for an hour because she saw your exhaustion. So you are upbeat. Things aren't so bad. Idiot sees this in your so takes away one of the days respite you have because you obviously don't need it! Besides, you cannot express in words how bad things can get to someone who really just wants the day to end so they can go down the pub or to the gym. Something you haven't done for years or even been able to think about.
This is not a little extra holiday for these parents. It is a life line The only thing that separates us from being barbarians is our humanity and sympathy for others in situations less fortunate then ours. So perhaps you aren't doing so well after all.
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