My little Pwdin is a force of nature. He’s tall, strong and very, very fast. This makes a trip to the park chasing him round and round for tickles exhausting fun. Pwd had no awareness of danger and does not respond to his name, “No!”or any other word even screamed with the greatest of urgency and/or panic. He is liable to run well beyond the borders of a play area with little or no heed for anyone or anything around him.
Taking Pwd out for a walk is impossible. Though steady enough on his feet generally, he has poor depth perception and often stumbles and sometimes falls at kerbs. More challenging still is his habit of pulling his knees up and suddenly dropping to the ground. Often, I can’t tell what has caused him to do so. Pwd is a puller, a pincher, a poker and a prodder – worse he’s a licker. Given half the chance he’d lick his way along the walls of a street. Get him to walk on the other side and he’ll want to tap the top of each and every car’s tyre that he passes. All in all it is safer for him and others to take him out in his special needs buggy – if you can get him in it. Getting the boy into his car seat is another trial and keeping our little Houdini distracted and strapped in all journey long can be another, though he and I have developed some very silly in car games that are a lot of tickly fun.
One of my biggest concerns when he started school was how they would get Pwd from the bus into the building. In the beginning he was going in his major buggy and that was clamped to the floor. Now, that buggy no longer counts as a wheelchair so we had major issues over our Major buggy and at one point it was suggested we apply for a wheelchair. In the end it wasn’t necessary as the staff at Pwd’s wonderful school, having got to know the child who has the speed and dancing feet of Shane Williams ensured there were always two people to greet him. Pwd’s behaviour is now such that he cannot go out and about without 2 to 1 supervision.
My little Pwdin is a fine physical specimen. This makes his language and communication deficits all the more dangerous for him. For a disabled child he is, for the most part, very able bodied. His strength and speed has seen him flatten mattresses, crack a double glazed window just by running at it, tear up duvets, clothes (his and mine). We had to replace our carpets because of Pwd’s smearing. We chose a bouncy vinyl that would absorb some force if Pwd should fall over whilst running his laps. It was glued securely (or so we thought) to the floor and sealed at the edges. Pwd tore the whole lot up. We are now having to tile it. So why am I telling you all this? Well, I suppose it’s because someone has got my back up, I’ll call him Mr Bigot and he’s not the first to insinuate that parents seek a diagnosis of autism to milk, as he describes it, the “cash cow” of the UK benefits system.
As it stands, getting disability living allowance (DLA) for a child with autism can be a minefield. The forms themselves are dozens of pages long (38 pages if I remember correctly and more should your disabled child require hospital care, use medical aids or be on long term medication). The repetitive questions don’t so much separate out those who qualify for the payments from those who do not as they separate parents and carers from their will to live. Anyone who completes these forms coherently and in full should get the benefits as a reward for their stamina alone!
Parents who accept their autistic child or children for who they are, are unworthy of benefits. At least, this was Mr Bigot’s position when I asserted that I don’t believe Pwd suffers because he is autistic. His lack of communication skills cause him frustration but not getting a packet of crisps or a chocolate bar is more than enough to send a neurotypical three year old mad with rage. At least I don’t have to deal with that. How can I possibly claim he’s disabled yet assert that he does not suffer? The two go hand in hand don’t they? According to Mr Bigot I only contend Pwd is disabled for all the lovely lucre (£70ish a week at most DLA and £50ish carers’ allowance if household income is very low). Benefit payments for disabled people and their families are not compensation for “suffering”! They are there to help level the playing field somewhat and pretty inadequate for many families. Living with my Pwd isn’t daily, unrelenting misery – he is a joy most of the time and, like any other tot, a little monster some of the time. He’s a child. He has autism but he is just a child. Things feel tough at times because this society in which we live, its routines, its conventions, the facilities of our community and wider area aren’t designed around the needs of autistic toddlers. We sometimes need allowances and accommodations to be made for us.
Ascribing the characteristics of parasites to parents whose children have disabilities like autism that, to the uneducated eye, seem to only affect behaviour, is wrong, unfair and plain ignorant. Autism, does not respect income. “Nice,” middle class families can and do have autsists in their midsts. Autism knows no class divide. Getting a diagnosis of autism before school age is no mean feat in the UK, especially for those not at the most severe end of the spectrum. Diagnoses are not, “handed out like smarties.” Of course, some carers need to reduce their working hours or give up work altogether to look after the autistic person/people in their family. To suggest they are doing so because they are bone idle is ludicrous. I have never had a job as demanding or rewarding as looking after my little Pwdin. The hours are long, the pay is rubbish and at times it’s dirty work but it’s the best job I’ve ever had. To make ridiculous comments that once a child is in school you need to get your arse straight back to the office, shop, factory or whichever place of work also shows a distinct lack of understanding of the reality of bringing up a child or children with a disability. I work as a freelance writer and editor. If I wanted to go out to work I couldn’t. As I’ve said, Pwd requires two to one care at all times in public. The cost of hiring two childminders with the requisite training and experience to bridge the gap between school and work start and home times would be prohibitive – out of school provision for disabled children is pitiful. There are days when Pwd is in school I do no work at all. I sleep because he doesn’t. Many are the nights I get to bed only just before he wakes and runs laps until five, six or seven in the morning. An hour or two napping and he’s firing on all cylinders, I, however, am not.
Do I blame Pwd for the way he behaves? No, it’s beyond his control. As a family we are very fortunate that my husband has a good job and I have the skills to work for myself at home. Could we do with more help and support? Yes. Payments like carers’ allowance and DLA take the strain off many families who aren’t as fortunate as us whose income is reduced because of disability be that their own or a family member’s. It is important to remember, though, that parents of disabled children and adults with disabilities can and do go out to work. Sometimes DLA helps make it possible to stay in employment. We pay taxes and contribute to the communities and businesses of which we are a part. Many could not afford to do other than work. We are not a drain on your taxes, Mr Bigot.
There are, I am certain, people who abuse the benefit system but there are also people who evade taxes and defraud businesses – even their employers. There are loopholes and weaknesses in all systems. Labelling parents as undeserving, grasping cheats whilst knowing nothing about their personal circumstances or the challenges of bringing up a child as wonderful as my Little Pwd is dispicable, Mr Bigot.
If you’re interested in getting the full dose of hate and prejudice then here’s the link and head for the comments.
I often wonder about the reading comprehension of those bigots (especially that one who cannot answer my simple questions). I was called a “welfare queen” even after I made it clear we have too high an income by saying “Actually, my son has never qualified due to family income (even though he has a severe speech/language impairment).”
And further down the thread he says “The only reason you are defending the SSI welfare is because you are getting the money. So I rest my case.”
They are not a very bright bunch. One of Mr. Bigot’s best comments was “Pardon me for pointing out the obvious, but there are absolutely NO vaccines for bacterial infection.“.
Yes he tried to imply I was going to get sued to bits, insinuated that I’m a fraudster, tried auditing me, then diagnosed a deceased person with a mitchondrial disease to his mother. There are no depths to which some people will not go xx
Just been reading the comments over at Liz’s blog. I remember reading the post. I’ve had people ask me what extra expenses I have for my boy. I won’t discuss money with them but ask how many mattresses do they get through a year? How many duvets? pillows? curtains? that’s before specialist equipment and adaptations. The idea that the NHS provides all we need is fanciful nonsense.
I didn’t wade into the discussion at shot of prevention because…well I had had enough previously, including going at it hammer & tongs w/Mr. Bigot. I hadn’t seen Mr. Bigot’s disgusting comments about parents living large on their children’s disability payments. As if.
The brouhaha over the DSM5 changes is bringing the bigots out in force. It makes me sick.
And may I say, your love for Pwdin shines through like a beacon.
Thank you! He’s very easy to love – have you seen those big blue eyes? xx
I hate filling out the forms. Especially April, when I have to send out one set for each camp that he will attend, which is 9 weeks of coverage due to his age (yes, I am fortunate).
Working with a son who is special needs is difficult enough, do I really need to be punished with mountains and yes, Matterhorn size mounds of paperwork?
He was disabled at 6 months, 6 years and at 16 and odds are again at 60.
I feel incredible sadness for those in Canada who English or French is not their first language. I honestly believe they just give up on the system. It’s horrifying with it’s own set of acronyms.
I totally agree and just streamlining the questions would help. On the UK forms there are 3 pages about speech and another two about what your child can understand. You end up just repeating what you’ve written because you need to explain communication both ways to make any sense of each – if I’m making sense now!
Also those checking the forms are on the look out for key words. If you don’t know them and use other words that amount to the same thing then, chances are, forms get rejected out of hand and you have to go to appeal.
I was once referred to as a Refridgerator Mom. I had no idea what it meant and at the time didn’t have a computer or internet. Not until a decade later did I realize what I was referred to. It was and is extremely hurtful. At times, I can get caught up into my ego and worry thinking others think that of me.
That’s awful. There is such a mother blaming culture. xx
LOVE reading your posts. So much is familiar and so much eye-opening. And the laffs don’t hurt. THank you.