Sally's World

Aaron passed away three years ago now…3 years, two months and eight days to be exact.

So imagine how I felt when I got a lovely big letter through the post, in Aaron’s name, with leaflets and brochures about the adult learning centres that were available to us, as Aaron would be turning eighteen this year and leaving full time, special needs education.

Now, I expect the odd letter from the dentist/opticians/brochures we prescribed to. ..But call me naive, didn’t really expect them from any kind of government run department.

When Aaron should have turned sixteen I got a letter talking about changes in benefits, and other educational provision, and I rang them up and gave them a bollocking that would have made a sailor blush. So it seems strange they have made the same mistake again.

When Aaron passed away, I rang the benefit people, they had no trouble stopping his benefits, I had an adapted vehicle for him at the time part funded by a special scheme, and within a week of his passing they turned up to collect it, with no regard for the fact that I needed it for Deion too, child benefit, yep, all stopped. And worse thing of all, Aaron’s one to one key worker at school, a lovely girl called Mel, who had (understandably) gotten attached to Aaron, was told the day after he passed away that she was out of a job…with complete disregard for the fact that the poor girl was grieving also.

So they don’t seem to have a problem stopping anything that costs them money, no problem making sure that there is no unnecessary outlay…god no, I had visions of them rubbing their hands together at all the money they were going to save now that Aaron was no longer on their list!!!! Bastards!!!!

So now, am I totally stupid in thinking that somewhere in the governments special needs education system, the very system that deals with education of all kids with special needs, that there is information on Aaron, information with regards to his passing???

I’m incensed, angry beyond words…I know its just a letter, I know these people are more incompetent than a bunch of chimps at a tea party…couldn’t organise a piss up in a brewery…yep, I know all this…but the truth is these letters are heartbreaking, they put you back months.

I KNOW you dozy, lazy, incompetent arse holes what Aaron SHOULD be doing…you complete utter useless shits…I KNOW about all the thing I SHOULD be having to arrange for my soon to be eighteen year old son….so thank you so much for the reminder, how kind of you, and how lucky you are that guns are illegal in this country, because if I owned one I just might be tempted to use you all as target practice!!!

Is there a government workers manifesto we know nothing of, something along the lines of
1) clients must be thoroughly ignored at all times
2) when it is impossible to ignore them, they must be treated with complete contempt
3) complete disregard for feelings must be adhered to at all times
4) you must never ever call back when you say you will
5) if you see an opportunity to upset/depress/stress/anger a client, it must be taken, at all times.

How many grieving wives/mothers/sons/daughters have to put up with this????

One things for sure, the rule book goes out of the window when you have a child with special needs.

It amazes me how different things are. When Jordan and Robyn went to secondary school it was easy really, so we traipsed round all the schools in our catchment area, weighed up all the pros and cons, talked to teachers, pupils, analysed the exam results… essentially it was pretty simple, and they’ve been very happy with the choices we all made…

So obviously with Deion, we got embroiled in a big fight about which school, because somehow the education department thought that having special needs meant you didn’t have as much right to choose, but we got our own way in the end…then there was the fight to get suitable toileting facilities, anyone would think I was asking for a space rocket, not simply suitable toileting facilities…I’d probably have more have more luck and less fuss getting my hands on a bloody space rocket….note to self, ring NASA!!!

Next came transport…think we’re almost there on that point…the school are being great and we are ironing out any other issues…relatively small regarding what happens in a fire drill, desk heights, classroom organisation, low coat hooks, games and PE…..all surmountable issues…

But here comes the bit I don’t get, the thing I fear we’ll never alter, and that’s ignorance. Now, when JJ and Robyn went off to secondary school, not a single person ever asked me if they would be taking exams when they left school…the question of them leaving with a decent education went without saying…it is expected no???

So explain to me why someone would ask me (with a scoff of derision no less) if I thought Deion would really get any GCSE’s.

I get Deion is different... $h!t, Deion gets he’s different…but since when did different mean stupid????

As parents, when your child has a disability, yes, you adjust your goals and expectations if you like…it’s not the first steps you crave, it’s a new electric wheelchair so that he can drive himself. Okay, its not football, but wheelchair basketball, we’ve been told the likelihood is that Deion wont be able to have children of his own…so we might look forward to the day he fosters or adopts a child, he may chose not to have children.

But we are blessed, and Deion has merely physical limitations, not academic ones…hence the fact he can attend a mainstream school, hence the fact he is so bright its scary, has a sarcastic/cheeky/okay, if I’m honest an evil streak to rival Dennis the Menace….why would we think he wont be taking exams…don’t all kids in mainstream school take exams…is it not what is expected????

So to the woman…who I am also sending this post to also, who works with children in special education, who is supposed to be helping and supporting us…quite frankly up yours!!! Is your child taking exams…what’s that?...no kids, oh, could have guessed that…you probably couldn’t raise a cat! I’m sure when Deion graduates from University…you’ll still be sat behind that desk, not having a clue about real life…

Deion knows he can do whatever he wants in life…the people that know and love him spend a lot of time and energy making sure he knows he has no limitations in life…so when someone, who should quite frankly know better, comes along and has the ability to undo all that work in one sentence…it makes me so mad I could spit…

Needless to say, we wont be having anything to do with this person in future…after all, I would like to see Deion graduate from college, instead of serving a prison sentence for murder!!!

And just for the record, that’s not a threat, I’m merely venting my anger and frustration at your incompetence, ignorance and stupidity!