Tag Archive: Carer


David is my teenage son and autistic. When first diagnosed at the age of three, the doctor told me he would never develop mentally. However, over the years he has evolved within his own world. Here, I hope to tell of some of the strange but sometimes wonderful things about him and hopefully give a little insight and understanding into living with autism.

It’s been quite a while since I did one of my autism posts. Probably too long. However, one of the reasons is that since last September, David has been at college in Wales.

He’s doing good. Learning all sorts of life skills such as looking after farm animals and gardens, plus crafts, computers and horticulture. In fact, it is the latter which he says is his favourite subject. He phones me two or three times a week, mainly to ask for stuff but whenever I enquire about his classes and which one he likes the most, he says horticulture.

At Christmas, he came home with a box full of pottery and a festive wreath he made in horticulture. I’ll save the ceramics for another post as they deserve one on their own. However, his wreath stayed on the front door all throughout Christmas and to be honest, I still have it. I can’t bear to throw it away. And why should I? The grasses may have dried but the holly, pine cones, etc. They’re all still okay. Maybe I’ll stick it on the garden fence.

The Christmas Wreath © Antony N Britt

There he is with it. This was taken when he came home just before Christmas. It had a note attached, one from his tutor. It said, David made this in horticulture. It is all his own work and he is very proud of it. And so he should be.

I will say, it has been a bit of a change for me after ten years of being carer to an autistic teenager on a daily basis. That doesn’t mean to say I get a quiet life now. David has Facebook and boy, does he like to talk. At least once a day, my phone will beep a message and I know it’ll be him. There will be one word. A different one each time but I know what I have to do. Word association. He says something and I have to complete the sentence. He also sends messages asking for requests. Rewards. These, though, are based on behaviour.

As I have mentioned in previous posts, David has temper meltdowns. While not acceptable when they happen, he cannot help most of them. To combat and try to avert these, I operate the reward scheme. If he has the carrot dangled of getting something nice, it can act as an incentive to control his moods. I suppose it is a form of bribery but the reward is also a signpost in his mind for when for red mist rises. That he will not get his promised reward if he slips up.

But back to his messages. As well as games and requests for rewards, I get bombarded with Birthday and Christmas lists. Thank heavens there are neither of those now until November. However, before Christmas, I was getting the same list about three times a day in messages. When I replied to his private message, he’d then cut and paste my comment to his wall, the same he did when his mum promised to take him out for the day. He’s not stupid. On his wall, the evidence is there for all to see. So no backtracking allowed on any promises.

Anyway, these Christmas lists sent to me coincided with a bad spell of temper issues and I had spoken to him and the college about it. He messaged me again with his Christmas list. I replied, stating he would get nothing if he was bad. Thirty seconds later, I got a phone call.

‘Dad?’

‘Yes,’ I answered.

‘Christmas presents.’

I explained again about his anger issues and that he can’t keep having these meltdowns. He was promised at one point, fireworks and lanterns at New Year, but as I’d said these were also based on behaviour, he’d blown them. Still, there was the Christmas list at stake and apparently, it worked. He had a good final week and we had a great Christmas, too. I found out long ago that even though he can be awkward at times, he does respond the odd carrot or two.

I’m speaking to him at the minute, actually. On Facebook. I just had to log in under his name and delete some pictures. You see he keeps posting ones of other students, which is against the rules. After sorting the pictures, I’ve then had a message conversation with him, explaining what I have done and if he keeps doing it, he won’t get his latest reward.

Ah. Got to go. I hear the telephone ringing. Now I wonder who that could be?

On one of the days out since going to Wales.

On one of the days out since going to Wales.

Cheers.

Nick

David is my teenage son and autistic. When first diagnosed at the age of three, the doctor told me he would never develop mentally. However, over the years he has evolved within his own world. Here I hope to tell of some of the strange but sometimes wonderful things about him and hopefully give a little insight and understanding into living with autism.

November 7 2011 – David turned 19 years of age. Being at the top end of the autistic spectrum with severe learning difficulties, he gets Disability Living Allowance (DLA) with a mobility component which funded the car. Without that car, we would have to use public transport. With David having temper meltdowns at the slightest noise trigger, the thought of travelling on a crowded bus filled me with dread. Still, all the DWP (Department for Work and Pensions) had to do was read the huge amount of evidence sent to renew his claim after him getting the benefit for the previous 10 years. I mean, they haven’t changed their qualifying criteria and unless I’m mistaken, nobody has found a cure for autism in that time.

I put the claim in, waited for his birthday and the response. What I wasn’t expecting was David to fall victim to our coalition government’s purge on blasting the disabled by demanding the DWP cut the amount they pay out, by 20%.

David’s mobility allowance was slashed; the car was taken back.

Now I understand, in these times, the need for cuts but you have to make sure you get the decision right. Two months I fought, every day asking for review while sending in further supporting information – all to no avail. After a huge cloud blighting Christmas and the surrounding time, the car went in January and we were stranded. I found out that the decision was made on the recommendation of a health professional (employed by the DWP), misreading a document sent by the school. The school said, “David’s learning age is at National Curriculum Level 2,” and they put it in capital letters. That level is what you expect of a seven-year-old – at best. David is 19. Despite that and the fact the school also supported the evidence of his violent outbursts, the health professional sided with the DWP by saying David wasn’t severely mentally impaired for his age and that his behaviour wasn’t an issue. Tell that to the three people he’s attacked and the damage to my house he’s caused since they made the decision.

I suppose doors can be replaced but it’s a pity that the health professionals at the DWP aren’t as rigorous in meeting their customers as they are misinterpreting secondhand information.

I appealed their wrong decision, as is David’s right. I sent in supporting evidence from people who have been affected by his outbursts, a strong letter from his school regarding his age-related learning, another letter from his doctor and finally, a statement from our Member of Parliament who took one look at David and saw what anybody else that meets him can see – He IS severely mentally impaired.

I was totally confident of the appeal but needn’t have worried. Today, I received a letter from the DWP regarding the appeal. They have changed the decision in David’s favour and therefore, his appeal is not necessary.

Yes, not only have they now accepted what everybody who supported the claim has said all along, they have backdated it in a full admission of their error.

The pity is, the damage is done. Three months we have had this – lost the car and now have to re-apply for another. It’s more than a car anyway, it’s what it stood for. People persecuting David for a disability he never asked for and one I certainly never did either as I continue to give up my life to be his carer.

The message is simple though. Never give up. If you have children and loved ones with autism, or any kind of disability and find yourself victims to cuts and government bureaucracy, fight it all the way.

We have won this one but do I feel like celebrating? Not really. Not when it concerns something he should never have been penalised for in the first place.

 Nick


Two different sized bags are packed, both filled with clothing, balloons and A3 laminates as I wait for the taxi to take him to school. The balloons and pictures are in his school bag along with other things necessary to help maintain order during the day. In addition, he has a digital camera around his neck, hanging from a lanyard and huge headphones blasting sound from his MP3. These are not music recordings but his own creations, accompanied by the strains of him shouting and clicking. I laugh; even when he’s quiet, you get to hear the pre-recorded version.

An extra-large holdall containing clothing for the weekend also has his playstation and as many Thomas the Tank trains and track he can get away with taking. You see not only is he going to school, for the next few days, he will be in respite too. This is my chance for a break, the opportunity to relax and rebuild a bit of strength in order to start again next week in the ongoing battle to maintain the support he needs. Not many people do help either. He is 19-years-old now and built so big, most shy away.

Respite is good though; he enjoys it and I get a break. It’s been a while since a similar scheme under the children’s service. There he would have regular temper meltdowns and I would be called to come and collect him, rendering the respite useless. Now he is an adult in an adult respite home. Things have gone smooth so far and I have begun to relax. He’s in his eighth stay with no problems and it couldn’t be better. I wave him off to school, bags and all.

I go into town, eating out for breakfast then enjoy a lovely day with my partner. We plan to go out in the evening too, free of any thought of the hurdles involved in a carers life.

Five o’clock, I get the call. He went into the yard at the respite home, hoping to film a helicopter he could hear flying overhead. He did this and even though smiling, something in that instance triggered a temper meltdown, culminating in him attacking a member of staff.

They say everything is okay and will only call me again if there are further problems, but the damage is done. David is heavily autistic; he has serious behaviour issues and even though I do not have to collect him on this occasion, respite in my mind … is cancelled.

Living with David - Every day a new challenge.

Nick

%d bloggers like this: