Seeing a conversation on a local network actually got me annoyed enough to blog about it.
It’s actually got nothing to do with the people who replied to the discussion, or even those who were involved in it as they don’t know any better, and kudos to the man giving up his time to go volunteer to help some kids, but that’s not the whole picture.
I’m not one for shying away from some minor controversy, and although I’ve tamed it down recently due to more and more people finding out who I am locally, there are some issues that I am still going to talk about.
Special needs, deprivation and injustice are going to be included, and not talked about in the hushed do gooder tones that we tend to be expected to conform to, nor as the eternally grateful for small scraps thrown our way that others think we should keep quiet for.
It’s a much wider and political issue that means lots of families miss out on the help and support available in our city, and it does depend on your postcode. I’d imagine it’s a common problem across the UK.
There’s plenty of information being bandied about, talked about and worked on when it comes to the health issues being a postcode lottery. Those make front page news, but hey, yet again, our disabled and their families can’t fight, argue, or do anything about it as they’ve not got a big enough supporter network.
I answered on the forum, which retrospectively was not a good idea as they don’t know any better.
When I said that parents don’t generally get told what is available for special needs kids, I got pointed to a completely pathetic and useless for a parent website that gathers charities together in Aberdeen. That’s not the fault of the person who tried to help by posting the link, but it shows what a pathetically poor and useless system we have of letting people know what there is available to them. It’s all chance conversations, meeting the right people, or plain and simple good luck (heaven help you if you don’t have a computer).
If I lived 5 miles further south, all my kids would be being helped, be in support programmes, or getting access to clubs and activities that I can’t afford for mine. If I lived 5 miles further south, it wouldn’t matter if I earned a large salary and lived in a council house, I’d still get access.
A friend of mine with two disabled youngsters can’t get access to much, and she’s now a single parent living on a part-time wage. It’s her own tough luck that she lives in the wrong suburb to be eligible for much, but she’s learning to fight.
Schemes in the “poorer” areas of town should be able to extend to lower-income parents from the other suburbs of town. I say “poorer” as I know many people living in those areas with much more disposable income that we have these days, and we manage. I also know how bad some of the deprivation can be in those areas so I am not talking from the standpoint of someone who doesn’t know. It’s from the standpoint of fairness across cities and not in specific pockets of cities.
Yes, it makes political sense in the world of “doing good” to be seen to support those in recognised deprivation areas for higher vote count, but where is the room for fairness? Or does that cost too much money versus the cost of a vote?
Right to share
I’m opinionated, I can look for things and my kids have some support, but it took years of fighting to get it. We shouldn’t have to fight.
NONE of us want anyone to feel sorry for us, but we do want to be able to talk about it in general conversation, and in the same way that other people talk about their daily lives.
Some might talk about shoes, or potty training, or kids not doing what they’re told first time and using star charts. It chills me to the bone that those same people won’t discuss punching, getting bitten by tweens and teens, services (or lack of) and just how difficult being the parent of a behaviourally challenged special needs child can be.
Yes it can be fabulous too, but if people are allowed to tell us all about how stressed they are potty training, or how well their kids are doing, their latest medals and accomplishments, or how long they’ve been at the top of the class, then I reserve the right to talk about how awful it can be to live with a child in mental anguish every day and share what progress he is making, even if it is just punching me 5 times a day rather than 15.
I hate being met with a wall of silence when I mention middler after I’ve just listened to someone rabbiting on for half an hour about their wee Johnny. If people don’t know what to say, they should just say they don’t know what to say and then we can help make it easier for them.
Example of postcode distribution
Look at this for an example. It’s not to feel sorry for me as my kids do ok, but it shows the system.
This looks fabulous. Befriend a Child.
We’ve been on the waiting list for years for my eldest. Supporting documents have gone in from social work and adoption teams. Paperwork has been updated several times on request.
We’ve been told in the past that there are carers recruited and who just need to be allocated.
We were supposed to be a priority over a year ago.
My vulnerable eldest, one of three, with a behaviourally challenged special needs brother and needing help for himself gets nothing. His friend who lives in a deprivation area and has parents with more disposable income than we have and no siblings has a befriender. Supposedly to give his parents a break from their very street wise child.
I don’t grudge his friend a befriender as he needs one too, but it looks like blatant postcode lottery distribution, even if it isn’t. What makes it worse, is that nobody ever gets back in touch with you to let you know what’s going on.
My boy is heading to secondary school in August and we’ve probably missed the window to give him a very positive experience outside of the home with someone who doesn’t share his mostly pretty difficult home life with his brother. I had made the mistake of telling him a befriender would be coming soon, after being told it wouldn’t be long. What a HUGE mistake that was.
Maybe there are other things that are available, but there’s no easy way to find out unless you are well enough educated to go seek it out for yourself, or live in the right part of town.
So yes, now putting my toys back in my pram, it sticks in my throat to see another example on a forum of something that is only available to those from the deprivation area postcodes. And if I feel like that, how on earth do the parents who can’t stand up for themselves feel?