A Look at My Autistic Brother’s New World: Life Without Mam

It was the week after Mam had passed away and Codge was still in emergency respite at Beeston while the social services tried to find him somewhere permanent. It was the first time my wife, Julie, and I had visited.

A Look at My Autistic Brother’s New World: Life Without Mam https://www.autismparentingmagazine.com/my-autistic-brothers-new-world/

I decided that not going to see him too much and Codge having to get used his new routine would help acclimatize him to his new life without his mother. None us could guess how he would be would react when he realized she was gone and I just prayed it would be calm. This made things easier for me as well as I wouldn’t have to face anything just yet.

I had told him Mammy was dead, but surely he would not be able to comprehend going to her funeral; he probably would expect to see her at the mention of her name and just not understand. Then add to that, there would be a big crowd of unfamiliar people which would agitate him and be too much. I dared not risk it.

Mam was cremated 19 days after she’d left us–unfortunately without Colin to say goodbye. I am still not sure whether I did the right thing.

John and I had written eulogies for the service, John telling of our Mam and how she’d always been there for us, sons and grandkids. Mine contained her dedication to Codge and her lifelong mantra, “I’ll keep him until I drop–he’s my baby.” Not forgetting her, ‘head down and battle through’ because it had been a war of attrition coping with Codge’s autism. She never wobbled even after Dad died, and she was left to cope. I had another stab of guilt about that, avoiding helping out properly for years. No excuse now though.

Afterward, we had the do at Elland Road Stadium in ‘Billy’s Bar.’ That was ironic as she had detested pubs and football, but it was the only available venue nearby. Loads turned up though including the family we hadn’t seen in years and two friends who’d known her as a girl. Only one or two asked about Codge, but that was par for the course because he had been invisible to most—Mam’s responsibility and nobody else’s.

Then it was time to try and acclimatize—code to life without her. The respite staff assured me he was content and settled, going to bed at nine every night. I still worried that he might do a runner and turn up at the empty house. He had been famous for disappearing when he was a kid.

Even 10 years ago in his early 40s, his transport had been late picking him up from the Mencap Club in Chapeltown, he’d run home five miles through the rush hour finding his way back because of his photographic memory. He’d turned up at half-eight, banging on the door and shouting, “Mammy, Mammy!” She had been nearly out of her mind with worry but only told me a week later.

I started dropping in to see Codge once a week at respite and admit it was boring. I sat with him, having a coffee and talking, but there was no conversation. I tried asking him about how he was and what he’d done that day, but he just repeated the last word I’d said. Questioning overwhelmed him, and he would get agitated and tetchy, making me feel like I was forcing him.

It just seemed he couldn’t wait while I was gone. I was relieved he stayed calm enough, though with no explosion. I was told autistic people coped with grief in their own way just like anybody else I but remembered the younger Codge and expected something wilder.

There was no asking “Where’s Mammy?” She had just disappeared, a bit like him, I supposed—out of sight, out of mind. But I wasn’t sure as when I turned up on my visits Codge would look like he was trying to say something then stopping dead because he couldn’t vocalize his hurt, maybe.

I tried to deal with Mam’s affairs and Codge’s money at work, but it just took too long, which was my baptism of fire into the benefits system. So work had started letting me take a couple of hours off in the afternoon when I needed to.

The banks froze Mam’s accounts, so there was no access to her or Codge’s money. I hadn’t a clue what I needed to do. The social worker had told me that he would need an ‘Appointee’ to manage it all, especially when Mam’s house sold and Codge being a third owner of the assets would complicate matters.

The social worker reeled off a series of abbreviations: I had a number to ring at the DWP, Department of Work and Pensions for his DLA, Disabled Living Allowance. I would also need to sort out his ESA, Employment Support Allowance as he would be due more extra income-related ESA as now Codge was classed as living independently. My head was beginning to spin with it all.

The ‘independent’ living made me laugh as Codge was incapable of living like that, but that’s how the Government saw it. I wondered if they would find him as fit to work as well. You do read so much rubbish, though is it all, ‘fake news?’

Then I was told DLA would be changing to PIP in the near future, Personal Independence Payment, so I would have to sort that too. Then I found I had to contact the council about his housing benefit when we got him settled permanently. Well, at least they didn’t call that ‘HB’ like a pencil. This would be paid directly to his future landlord; I supposed that was so Codge wouldn’t be able to squander the cash on high living –sorry, only joking.

Every different payment had a separate department to ring, and it was an Odyssey. Blackpool, Hull, coast to coast. Ring them then oh so often; I had the wrong department. Not me personally, I’d been given the wrong number and had to start again and the calls were chargeable. I often wonder how unemployed people could afford the costs or even cope with the hassle.

Back at respite, Codge seemed happy enough on every visit. He never mentioned Mam, and neither did I as he just seemed to have accepted she was gone and he had a new routine. It was a bit upsetting if I thought about it, but what was he going through? He couldn’t tell us. I did wonder what Mam would have said as she’d have fully understood him.

Talk about new routines, on every visit Codge patiently scrawled on the nearest piece of paper, ‘Paul and Paula.’ Purl and Plain, the kid’s book which he had lost. I had sourced it on eBay, and there were two copies and just tattered wrecks from the descriptions. The cheapest was £ 50 and the other over 100.

“No,” I said. “Too much money.”

“Money,” he’d repeat staring straight in my eyes with a hopeful look and nodding slightly as if expecting me miraculously to provide it from behind my back.

Then I realized it wasn’t his problem. The world was black and white to Codge. When he wanted something, and you got it for him, simple as that. The book had existed so must still be there, so a request is put in and it will appear. He had proof with the Brave Little Mountie book. That had appeared out of the past, and when he’d lost it, another had been provided.

About three years ago, I’d started the process when I found the old Ladybird book, Tootles the Taxi on Amazon for his birthday. I thought it was a great idea, he’d loved it as a little kid, and when I got it for him again, Codge read it every night and took it to the day center with him. So it was me who set a precedent.

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Funny when I said to one of the respite center staff about the cost of the other book he wanted, she replied, “Why not? Poor souls don’t ask for much and have so little else going on for them.”

I hadn’t thought about it like that.

The trouble was, Codge’s money had not been sorted out yet, and bills were beginning to pop through Mam’s door for his care. I didn’t bother opening them; he had no income, so what were they going to do—take him to court?

I’d been told not to worry about all that by the social worker anyway so ignored them and began to keep a file of unopened letters. That could all wait while as other things were popping up.

A letter came through to my house informing us a meeting had been set up with the social services and the staff at the sheltered accommodation where a place had been found for Codge in Rothwell.

No more respite, somewhere permanent. Thank God. The only thing Mam had ever mentioned about when died was, “Make sure he’s all right and just get him the things he wants.”

So just before we went away, I caved and bought him Purl and Plain as a present.

I hoped Mam would be smiling.

This article was featured in Issue 92 – Developing Social Skills for Life


    Tony Rymer

    Tony Rymer is a print technical manager from Leeds, UK, aged 57. His piece tells the story of his mother, Marion-Rose (Mam), who died the night before her 82nd birthday and the struggle to place his youngest brother Colin (Codge) with autism into care on the night of her passing. She’d looked after him single-handedly since their Dad died 20 years prior. This is a tribute to Mam as when she got older, she realized and worried that one day she would not be there for Colin, who had always depended on her. She had everything organized and prepared just in case. Tony wrote this as a positive tale for other parents of children with autism who also worry about the futures for their loved ones. Out of their sadness came hope and help.