Tag Archive: Meltdown


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.

Living with David Jan 8 2013
Okay, I never meant to leave it this long, but I can now tell you what happened following my last post in January this year: What’s Been Happening – Part One.

Last year, having been failed miserably by the college trusted to instruct him in life skills, David was more or less confined within an assessment unit for psychiatric patients. He didn’t need to be there, the team medically discharged him after four weeks. The problems of his meltdowns have always been present, though and needed understanding with prevention and intervention methods, something management at the first college were unwilling to do, despite the excellent staff support.

He spent eight months at the assessment unit in Walsall. I’m not saying it was a bad place, don’t get me wrong, the staff were tremendous, but the unit was not where David needed to be. Somebody as lively and active needed stimulation, which the unit could not provide. He had his computer, but no internet. He also had his camera, MP3, and trains. However, what David did not have was his liberty. The highlight of a typical day for David, if I were not able to visit due to my 24-hour shifts, was a half hour stroll down the road to the local shop to purchase a milkshake. Therefore, although I tried to restrict my visits to alternate days so he would not become dependent on seeing me, this soon failed and I would end up going every day I was not at work.

I have to say, that was not good for our relationship with one another. He had nothing in his life and it was the same day after day. I could go as often as I wanted but the sad fact was, with David’s limited conversation, there was little to talk about.

He was bored and at least once a week I would bring him home so he could access the internet and make some of the wonderful audio/visual creations he is fond of. But the situation was still desperate, and it nearly ended dragging us both down. For him, the constant looking forward to my visit. For me – eight months of having my days off revolve around when I would see him. We’ve probably all been there; a relative in hospital and visiting hours dictating your life. This was the case for us lasting eight months.

A treat of a few days in Llandudno, a special firework display on his 21st birthday followed by a meal, these were all things which helped break the monotony.

In the meanwhile, staff at the assessment unit worked alongside social workers trying to find a new placement for David. I visited several, some of which may have worked, but I and those who supported David decided he needed the best available.

A specialist autism college was sourced, but funding was an issue with the decision taking months to arrive. Now before people decry the council – don’t. I totally understand. These places cost a heck of a lot and all avenues needed to be explored first. Finally, a couple of days before Christmas, David received the best possible present with the news he had a place at the specialist college.

On February 3 this year, David was taken to his new college by his key nurse, Sonia from the assessment unit. She, like many at the unit, helped David immensely. That day, I made my own way and he was already relaxing in the communal area he shares with three others. He looked happy, as you can see from this picture of him in his room.

Living with David - New College Bedroom. © Antony N Britt

It’s early days but so far, indications are that this has been the right move. David has loads of activities and is actually eating healthy for once in his life, losing weight as a result. Okay, he still tries it on with new staff on occasional trips to McDonald’s where he’ll insist he always has twenty nuggets, and not nine. I travel to see him once a month (it’s a fair distance) and he’s come home to stay a number of times. I have also just returned from taking him away for a week to his beloved Paignton where he saw his favourite steam trains, Lydham Manor and Hercules, every day.

I speak regularly and staff supported him to see his sister in a production of Singin’ in the Rain, and also to attend his cousin’s wedding. Not often does a day goes by without him messaging me on Facebook or posting his Christmas, Birthday and holiday wish lists to my wall. I even have a regular delivery of post with his latest (often laminated) lists.

It is anticipated he will be there a number of years before he is ready to return to the borough with the plan of moving into supported living. I’m not going to give the name of the college as I don’t want to infringe on their privacy. All I can say is they are doing good, and I am glad that one horrible chapter in David’s life is over.
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.

Living with David Jan 8 2013

It’s a long while since I did a progress report on David, but there have been reasons. These may take a number of posts to explain as I have deliberately kept quiet and although the hurdles are not over, I will cover one part of the story.

If you click on the autism link at the top of the page, you’ll be directed to previous posts. The last progress update was nearly a year ago where David was doing well at college in Wales. And it was true. Admitted, he still had meltdowns, but he has had those since he was fourteen and the college and everybody involved with David’s welfare were aware of them. However, this did not avert the terrible year which was to come.

The Christmas Wreath © Antony N Britt

This was taken three months before the troubles began. David with the beautiful Christmas wreath he made in Horticulture.

It’s April 29 2013 and I attended David’s review at Pengwern College. He delivered a powerpoint presentation and the future appeared good. The college were managing his behaviour with the staff doing a great job. He’d learned a lot in the eight months residing there. As I say, the meltdown incidents remained and probably always would. The nature of the condition, I’m afraid. To combat this, a change of medication was requested, which had been in practice for two months. In that time, David suffered the loss of his beloved nan, but was coping well. Therefore, on that Monday of the meeting, I returned to Walsall with nothing but positive thoughts concerning the next two and a bit years at college.

Four days later, the world crashed around us and nothing would be the same again.

I’d not long started work in the care field myself and had been given a ridiculous amount of shifts, but was okay as I had no commitments that week. Then the phone rang. It was the college informing me about David having a serious meltdown and attacking somebody. They wanted to send him home while they took stock and reassessed their strategies. I explained, I couldn’t have him at home, I was down to work over 80 hours in the week they wanted to farm him back.

With that in mind, the college contacted social services as they were adamant about removing him and a place at a respite home was found. This home was local to me, but the situation horrible with David having to stay at a place he knew, all the time wondering why he wasn’t at home instead.

It was a week of hell where I only saw him a few hours. When he returned to college a week later, they moved him to an isolated cottage on site while changing his timetable and routine, all things you should not do to somebody with autism.

Three weeks later, despite not having many negative reports, the college said they couldn’t cope and sent him home again. Our local services were involved who found a place at a psychiatric centre. The college stated they would not have him back until a proper assessment had been carried out. So, yet another change of routine and at the end of May, I turned up in a terrible atmosphere to collect David from the place he loved. I was told the college were by no means closing the door and would be happy to have him back in September. That was the last direct contact I had with them before they placed a withdrawal notice on him.

Don’t get me wrong, the staff who actually worked with David at Pengwern College were fantastic. He made many strides which are evident months after they kicked him out. The problem lay with the bureaucracy of those making the decisions. They knew David’s issues when they took him on. They even applied and received extra funding to combat initial difficulties. And yet, the very people who were supposed to be experts in the field, could not cope in doing the job I had done single handed for years. Happy to take the money, yet the first sign of trouble, bat it back to the parents.

I still feel bitter. They wrote him off, citing safeguarding and risk, yet they never took into account the alleged escalation of behaviour issues occurred when David was undertaking a change of medication while at a time when he had just lost his grandmother – a major factor in his life.

June 2, David entered the psychiatric assessment unit and was medically discharged four weeks later. However, he could not leave as a new placement needed to be found. Representatives from the college came down early in his stay for a meeting. It was said they would look to take him back in September. That changed over the weeks to January, then finally, September 2014. It was obvious they never had any intention and perhaps it’s for the best, considering their failure. Even so, I still had a hope he could return. David loved the place and the support staff were excellent. But in the end, if I’m honest, it was only sentimentality which ruled my head.

There is a message in this series of events. If you undertake something, you should see it through, not as in David’s case, dump him and expect the family to pick up the pieces as many have been guilty of doing so in his life.

In September, I took David on holiday to Llandudno and some of my photos of that time were subject to my humourous post, The Sunday Roast – A Midweek Break in Llandudno. I know why David chose that for a promised holiday when all the troubles were over (even though they weren’t), Llandudno is not far from the college. He wanted to visit all the places he never got to. Unfinished business.

On that last day, we met up with one of David’s mentors who typified going the extra mile by reuniting David with things he’d left behind. He and other members of staff who worked with David will not be forgotten. Unfortunately, for David, neither will Pengwern College. On the way home, I asked him where he wanted to visit as a last outing.

‘Rhuddlan Castle,’ he said.

I groaned, accepting the request. Rhuddlan Castle is half a mile from college. You have to drive by the college to get to it and you can then see the college from the castle. Finally, we had to pass the college again on the way home.

David watched his college on that journey, and from the viewpoint, taking photos for memory. As we passed that final time, tears flooded from me as his head craned, staring at the place where he’d spent happy months. It was as if he wanted to reach out and touch, and I’m in tears again writing this now as I relive that moment.

The hard fact was, David’s days at college in Wales were over, and new support needed to be found.

To be continued …

Living With David - View from Rhuddlan Castle

Taken from Rhuddlan Castle. The white building in the distance in the middle is the college. The reason David wanted to come here.

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.

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

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