DLA and Aspergers Syndrome

It’s been a difficult couple of weeks. I’m tired and moody, everything and anything seems to set me off!

There has been so much on my mind, an overload of worry that I can’t seem to shift. It’s not like I’ve had any less sleep than I usually would! Plus there has been no real big dramas (well, nothing out the ordinary that is)!

However, there is one thing I guess I can blame for my sudden decrease in mood…. The filling out of the DLA (Disability Living Allowance) form. Seriously it’s enough to make the happiest and most energetic of a person, feel depressed and lethargic! It’s a headache… A big fat headache.

I was first faced with this form back in 2008 when my son started attending CAMHS. I wasn’t sure it was right to claim it, but our doctor stated we should as Little Man was more than entitled to the benefit so why leave it to those that wasn’t! I actually cant imagine how we would now manage without it, it makes up a big part of our income.

I remember the thud when the postman shoved it through the letterbox… It hit the floor and the house shook. The form is just outrageously lengthy and anybody else who has ever needed to fill it out will know what I’m talking about! It’s just so barbaric when you have to answer the same question over and over and over again!

We were lucky as we didn’t need to appeal anything, there was no wrong decisions! Our claim went through the system accordingly and it was one battle we didn’t need to fight.

Just like in 2008 I’ve been faced with the stress of having to fill it out again! And how it hasn’t changed much at all.

Little man’s claim is up for renewal and filling out the form is something I’ve tried putting off for months. Not only do you get that classic wrist ache and dead fingers, but it’s very likely that you’ll slowly be driven insane. The frustration as you read out a question only to see that it’s the same as the one you answered 2 questions ago, only its been rephrased and categorised under a different area of care! Some of them questions you’ll need to read over and over again, just to understand it within your own head, because surly they don’t think that your child’s difficulties are that black and white! As a result you find yourself needing to use the space set out at the end of each section. You know the one… “Use this space if you wish to explain why you have given the answers you have within this section… Blah… Blah… Blah!” When your child is on the autism spectrum you find yourself filling out every single one of those boxes. Then there’s the space at the end of the form designated for “Anything else you think we should know?” plus you end up writing an extra two A4 sheets of paper with all that stuff you think they should know! Stuff you think will help your child’s claim success.

There is no possible way you can complete such a form in a day, not if you have a life anyway. You’re this child’s carer and the time required to fill in such a form just isn’t logical. This time round we have the official diagnosis. We’ve been through the statementing process and have seen a whole host of specialist. This therefore means we have acquired a good deal of paperwork, paperwork that the DLA would like you to send in with your form.

I hate paperwork and find myself requesting everything in digital form. I was then stressing at the prospect of having to print it all out to send it to them. Not only would this be disastrous for a good number of trees but would also cost me a small fortune to send. Thankfully they have allowed me to send it to them via email which makes the process much more simplistic.

The hours spent filling in the DLA form were not jolly, they highlight just how difficult life can be for your child which in itself is a difficult reality for any parent to face.

If your filling out the DLA form for the first time, I’d advise that you don’t rush into it. There are many online sites designed to help with the process and you might want to contact the national autistic society for some advice. Their online site has lots of useful information that is designed to help you fill out the form or appeal against a DLA decision.

The UK Governments Definition of Happiness

Just when you think the UK government couldn’t get any dirtier, they go that one step further to strike up anger, in their mission to cut the number of claimants claiming Disability Living Allowance (DLA) amongst a string of other benefits, Job Seekers being top of their list!

The Department for Work and Pensions (DWP) have drawn up a plan which consists of blackmail, good old fashion blackmail!

The long-term sick and disabled will be told…

Engage in unpaid work for an unlimited amount of time or have your benefits cut!

Now, I’m fully aware that there are a huge amount of people claiming these benefits, when in reality a good dose of work is what the doctor ordered, however, lets not paint everyone with the same brush!

Now, I hear the government calling this voluntary work, but I can’t see how threatening to cut somebody’s benefits is voluntary?

But hang on… there will be a medical assessment first, right? Oh, yes, a controversial assessment conducted by those already considered incapable of giving anything other than a dishonest, flawed service! Lets be honest, we’ve heard how fair these assessments are, haven’t we?

There are some people with certain conditions that couldn’t possibly be assessed over one afternoon or a few even. Those on the autism spectrum will be particularly disadvantaged! Autism, a condition that takes so long to diagnosis, as a result of a string of complex assessments, interviews and observations (but, yes, this does require both time and money, something our government are usually reluctant to give)!

Nonetheless, I didn’t want to blog about the whole mess that is the governments medical assessment process, regardless of its relevance to the topic at hand, I want to talk rant about these proposed plans of blackmail inflicted on our societies most vulnerably.

Firstly, few important points need making…

Now, if there really isn’t enough work for today’s unemployed then surely there isn’t enough voluntary positions! I guess that those involved, those happy to be part of the governments plans, will suddenly find work for those forced to undertake it, am I in anyway right?

What happened to the requirement of a least a C pass rate in English and Math’s GCSE results when applying to work in the majority of UK establishments including that of McDonalds? This is one of the reasons why the unemployment rate was reported to have rapidly risen! So, my point being, what about those claiming, not only DLA, but any other benefit, who are being forced into unpaid work, will they require the same GCSE results as those applying for paid positions… I’m, guessing NOT, how disgraceful is that!

What about those on medication receiving DLA will this automatically make them qualify as fit for work?

Why would those high street retailers and public bodies bother employing those seeking paid positions if the
Government is handing them workers on a plate, one’s being forced to work in-order to get by and live? Surly this will only make things more impossible for those seeking paid work opportunities!

Do the government not realise how conditions such as Asperger’s syndrome consist of certain traits all with varying degrees of difficulties with social communication and interaction, as well as a whole host of others? It’s not just a case of being able to bend over and touch your bloody toes.

Nonetheless, what a great idea, for those who are actively trying to get their foot back in the workplace, those happy to participate in such a programme… it’s our basic human right to choose… isn’t it? To actually make such a big proposal a compulsory one is nothing other than immoral! Who, will make all these important work placement decisions for those with complex mental health needs, how can someone from the DWP, be qualified to have this degree of health expertise, the degree needed to make such huge discussions. Where is the safeguarding for those with these long term mental health problems?

The DWP made a statement claiming that what they are doing is a supportive measure and claimants will only be asked to do things suitable to their personal circumstances! Yet, as we know, the DWPs idea of suitable isn’t one many of us share, how can it be, what with what they’re proposing, seriously!

The Wrag (work related activity group) already consists of sanctions, such as a benefit cut for missed appointments. I myself have been told recently that my benefit will face a small cut, for an interview I wasn’t even aware of. Now what annoys me is the fact I’m a career who actually already volunteers giving time to a UK charity each week. I didn’t just get such a position, I trained hard for a year to do so, without any encouragement from the DWP, purely of my own accord! Isn’t this considered work then? As both a career and an existing volunteer, is nether considered to be actual work then? If they are sanctioning me, then what hope does anyone else have, those currently not careering or volunteering in unpaid positions. That’s not all though, I was also informed that the rescheduled interview will now take place as part of a group… Well, that’s great isn’t it!

You, hear murders and rapist claiming they have been breached of human rights and as a result of such claims they are left laughing in the face of the Government and British Justice System! Yet, here’s our government, one rumoured to have spent over 90 million on the 2012 Olympic Games, exploiting the human rights of those with an illness or disability, forcing them into unpaid work that could potently lead them down a messy road. Who’s going to pick up the pieces when those with serious mental health conditions and developmental disorders hit worrying depressive lows, self harm or worse!

The DWP may be saving their pennies, yet the bill to the NHS will undoubtedly rise.

Maybe one of the most disturbing things is the possible truth to the rumour that those with a terminal illness with a life expectancy of over 6 months with be expected to participate in the DWPs demands or face the sanction at an advisors discretion… can our UK Government be this bloody cold hearted to the dying?

Not so long ago, I reported on the blog, how a certain MP had publicly stated that those with disabilities should work for less then the minimum wage, many were appalled by such a discriminating, ignorant comment, and it would seem that the Government was too. Yet not so long down the line, here we are… was this a plan that always lay in the pipeline?

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It saddens me that , most of the British public put their faith and hope in the new formed coalition government with its promises of a better ran country (myself not included)! David Cameron was even said to have urged politicians to concentrate more on improving peoples’ happiness and general well-being as opposed to solely focusing on financial wealth, yet it’s been nothing but misery for a large percentage of the UK population, especially for those registered disabled or those who are careers to the disabled. We have watched as some of the most relied upon services have been closed down before our eyes, respite crawly removed, leaving careers on the blink of insanity, while parents to children with special educational needs are fighting harder than ever to obtain an efficient education for their children!

Take the London riots as an example, the man who runs the country was tanning himself in Italy whist families, in their mission to remain alive, jumped out of windows , leaving behind a burning inferno they used to call home.

Another example of the crap that has been thrown upon us since this coalition got their boot in the door, would be that of the Prime Minister’s trip to Pakistan where he handed over a huge sum of money to improve the countries education standards, as way of making amends for his past comments.

However, not only was this a kick in the teeth for those british citizens like myself, struggling to get an efficient education (if one at all) for their children, what with the local authorities continued claim that there was little or not enough funding within its budget, at a time where we struggled on during the height of a recession, the PM handed the massive amount of money to a government harbouring one of the worlds most wanted terrorist! Given the fact the PM had already made suggestions indicating that he actually believed such could be happening, but still to wave the cash about, is actually the ultimate example of disrespect to one’s own people!

Concentrating on societies happiness as opposed to its wealth! Oh… now I understand what he meant! Soon enough we would all be penniless… but never mind, we always have happiness to cloth and feed the kids! As for the disabled and mentally ill, well, they will have the happiness of waking up every morning, getting dressed and heading to that unpaid job they loath love so much!

And the Government?

Well, they lived happily ever after, didn’t they!

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The things they say

I’ve talked about Little man’s Literal understand and way of thinking a number of times here on the blog. This way of thinking means Little man tends to come out with some classic lines.

When a teacher told Little man to be co-operative, he stated…“What like the Co-operative food shop?”

“To many this is better known as the Coop”

Yes quite cute, still… if he had been in mainstream, that would have been recorded as sarcasm, documented and even worse, it would have lead to a nasty sanction.

Many of the misunderstanding that occurred during little mans days in his old mainstream primary school were caused by a lack of understanding.

Over and over again I would express the importance of “Not using metaphors when engaging in conversation with my child” yet those that did, continued to do so!

It was only yesterday I came across a report by the ASD outreach team that clearly stated that teachers needed to reframe from the use of ambiguous language when talking to my child.

What really tics me off is when somebody raises their eyebrows, turns to me and states…

“Well, I’m sure he understands what I meant”

A statement I’ve heard far to often!

“No, he bloody well doesn’t! What do you think I’m stating this stuff for, the fun of it? Where I’m standing, its far from fun!”

Recently I had a conversation with a stranger (Gosh, look at me talking to strangers) actually this was an elderly woman sat next to me on the bus who seemed quite pleasant. Well, that was in-till she stated her grandson had been diagnosed as having the

“naughty boy condition!”

Hang on a minute…

“The what… ? Sorry, You’ve lost me!”

She continues and finally goes on to say

“Autism! What a load of old cobblers”

Seriously, at first I remember thinking, ‘What an oldie thing to say” (Yes I know, now who’s being stereotype).

Then I thought, “Wow, another day, another person tanked up with ignorance.”

You see I’ve faced this type of ignorance a number of times and looking at her I knew what was coming next! “It wasn’t around in my day”

I was bang on as this did shortly follow.

“Oh, my own child has the naughty boy disorder”

Needless to say her face glowed an awesome shade of red and we didn’t talk for the remaining ten minute journey time.

I wasn’t angry, I’m past all that! I just pitted her way of thinking!

How can you blame this society for thinking the they do when our national newspapers label disorders such as ADHD and others like it,

‘The naughty child disorder’ that entitles parents and carers to drive around in new cars that are paid for by the DLA.

Do they not release that in order to get a car your child’s condition is likely to be tied to other conditions that affect the child’s mobility! No, I guess not! After all the national newspaper in question only bothered to go by the one statistic, which was the number of claims that relate in some way to ADHD. My guess is these children didn’t all just have a diagnosis of ADHD like many will know it’s a condition that is closely related to autism and many children carry a diagnosis of both.

I’ve seen parents with a child who really could use that car, lets not forget, most of the cost are met by funding it through the money they would usually be given in the form of payments. This money is given to meet the child’s mobility needs, not care, this is a different thing altogether!

Yes, of course there are some driving their pimped out bimmers when yes, the car could go to a much needy family (your always gonna get them people) yet, isn’t this the same as every other benefit? The system is a mess, not just one section of it! All of it!

I wasn’t angry about the article, I don’t let myself get that way anymore, I again pity those that wrote it and pray their child is never born different in anyway (I must state, “NO I DON’T HAVE A CAR PAID BY THE STATE, THAT OF THE TAX PAYERS MONEY, I DON’T HAVE A CAR WHAT SO EVER!” You may have already worked this out what with the above description of my recent bus travels with the elderly, but I just wanted to make that clear!

I believe a great deal of the issues our children face are due to that of others misconceptions. This could be anything from the way they talk, understand or behave in public.

Another bus incident (isn’t surprising given buses are little man’s main focus within his special interest in transport). We got on his favourite bus (the one with the one very high seat with a pane of glass right in front of it). The seat is basically right up their by the driver and little man like’s nothing more than to sit in it, in-order to play the role. Only this one time somebody was actually sat in “his seat” He stood there staring just waiting for the woman (middle aged) to move and let him sit down. When she didn’t he claimed quite polity too,

“Excuse me your in my seat”

she went from a look of disbelief to a giggle when stating

“Listen sunshine, has it got your name on it?”

Now their was a double whammy right there! ‘Sunshine’ & “… has it got your name on it?” was bound to confuss

“My name isn’t Sunshine”

he claimed while giving the chair a once over to see if it had his “Name on it” Of course I was trying to get him to come and sit somewhere else without any bloody luck what so ever!

He actually went as far as asking her to stand up so he could check the cushion for his name.

“Is this kid for real?”

was something she asked aloud!

before mumbling under her breath something that sound like,

“sarcastic little…”

Again she displayed that adorable shade of red all over her face when I annouched that.

“His for real all right! and so is his autism”

We don’t tend to use the word “Aspergers” some don’t seem to have the foggiest idea what I’m banging on about when I do!

So, there you have it! My little dude can say the funniest of things but these can also have a flip side, one that unfortunately leads to the same old thing…

“IGNORANCE”

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I’m no Vicky Pallord!

Warning post contains sarcasm!

I’m a mummy of three, who doesn’t currently engage in paid employment! My hobbies include sitting on my backside smoking an excessive amount of cheap brand cigarettes while indulging in the awesomeness of daytime television. (it’s my opinion that daytime telly is seriously under-rated in its entertainment value).

When my two older children are in school I generally let my eighteen month old run a muck, while I get my daily fix of Jeremy Kyle. As I trust you all, I will let you into a little secret of mine! “I sometimes keep the two older children home from school due to me failing to get my arse out of bed of a morning, that or I require them to babysit their little brother as to allow me some me time! Yes, this is mainly spent socialising and networking on Facebook.”

So, there you have it! I’m basically a total bum who has chosen to live this lavish lifestyle as opposed to getting a, what’s that word again? …Oh yes that’s it, ‘JOB’!!!!

Can you blame me? Given the toss-up between the two, that is…   A lazy day at home in the company of Jeremy Kyle, or… The long commute on an overly crowded train in a bid to get to work five mornings a week! Sorry… Jeremy wins hands down!

Yer right as if! Please tell me you do realise that the above is nothing other than an example of my twisted humour, a hard injection of sarcasm! Come on people seriously…  I’m no ‘VICKY POLLARD‘

It’s incredibly lamentable that a large proportion of people in today’s society, will all to often draw such conclusions of those above when it comes to unemployed mothers!

I guess it’s all to easy to assume that the mother on benefits who lives in a council house, doesn’t work because its easier this way. You only have to watch television to see some great examples of the stigma surrounding this type of mother! I’m not stating that I myself don’t laugh till my sides are sore when watching ‘Little Britain’ or ‘Balls of steel’ I’m just stating that it’s a shame that in the reality of things, people everywhere actually see us mum’s in this light!

Well, this may well be the case for some mothers, but it certainly isn’t the case for me! I imagine it isn’t for many others either!

So, do I want to work? In actual fact… I do!

I’m not only a full-time mother to three children (one on the autism spectrum), but I’m also a volunteer adviser and caseworker, supporting parents of children with autism and special educational needs through the process of the SEN tribunal in-order to get their child’s educational needs met. My duties include: Advising parents on their legal rights, helping them make an application to the tribunal, then basically guiding those that need it, through the different stages of the appeal from then on till the hearing. I can’t begin to explain how for me this is an incredibly rewarding position! Its one that doesn’t provide me with any financial gain, no form of income! That’s right! I do it because I’m passionate about helping these families overcome the battle of obtaining educational provision for their children! After all, It’s something we as a family have continually faced.

My little man was a very different child, a deeply unhappy one, up in till we removed him from mainstream in December. His currently in home tuition (supplied at the expense of the LEA), since January this year. He was continually excluded from his old school, I was called to collect him almost daily and towards the end he was taught in isolation. Lucky, Little man is set to start a trail placement at a fantastic independent autism specific school at the end of June. All goes well… The school will be named in part 4 of his statement!

So, here’s my point, I do have one I promise! I’m sure many parents of children on the spectrum will agree with me when I say, “Who would want to employ a mother or a father of an autistic child?” I’m being honest when I say, “I wouldn’t employ me!”

Constant calls from your child’s head-teacher requesting you collect your child immediately! They want you to come in just to have a word with them, or calm your child down during a meltdown! To work would be wholly unachievable! Lets state facts here guys, tell it like it is! What decent company with a boss who is well on the ball, would even consider employing a woman like me?

Come November 2011, this mum will be putting the long-term plan into action, the one that sees her go get the career she wants! Yes, this is the date I hope to start studying for my Psychology degree, “The one I couldn’t start this month as previously planed” (Not enough time, what with Jeremy Kyle and all). My study will thankful be done from home with the ‘Open University’ allowing me the flexibility to care for the children and carry on volunteering.

So, you see… I’m not no ‘Vicky Pallord’ (you couldn’t pay me to wear that shell suit)! More importantly I don’t do any of those terrible things, with the exception of them horrid cigarettes (Yes, bad habit I know!) I’m really just a mum trying to do right by her children! Even if that is under the roof of a council house!