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

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