Staring this blog and openly talking about what we have gone through was not an easy decision. I’ve partly done this as there is very little available on the internet regarding this condition. Our trauma would have been lessened if we’d been able to access help sooner, or achieved a diagnosis when we sought emergency medical help. My aim is not to scare monger parents of children with autism. What Charlie has suffered is rare. I hope that the detail contained in this blog will prove useful to healthcare professionals should they be presented with anyone suffering with these symptoms. This is not an easy read… I make no apology for that. The attached videos are distressing to see, especially for anyone who knows Charlie and knows how abnormal a behaviour this is for him.
This blog explains what happened in the week prior to Charlie being diagnosed with CATATONIA and PSYCHOSIS.
Saturday the 14th February, Valentine’s Day, is memorable for all the wrong reasons. I can’t really recall why I felt the need to make sure we got out the house and fill the day with distractions. Maybe mothers instinct, maybe a sixth sense, I don’t know, but for what ever reason I remember thinking “Charlie’s not right” and believed that keeping him occupied would deter whatever it was that was niggling me about him.
In the week leading up to this I had decorated Charlie’s bedroom… A job that was long overdue. A year previously had been another challenging time which saw Charlie become angry and aggressive. Holes in this wall and destruction of belongings was a result of this. We were in no hurry to put right the damage… The chances were that it would reoccur and be a waste of time so we waited, about a year. Over the last 6 months we had seen a steady but significant improvement in Charlie’s behaviour. He was more content, sociable even. Christmas had been the best Christmas ever, with Charlie taking part in the festivities and we saw the innocent joy on his face on Christmas morning for the first time in his life. Life was good… And I even started to dare myself to dream and imagine how the future might look.
So with his newly decorated room needing a few finishing touches (he’d chosen to decorate it like the premier inn… One of his pre-occupations) we headed off to the retail park.
It was here in the middle of Dunhelm Mill that the bizarre behaviour first became apparent. He would freeze, stand still on his tip toes with his eyes fixed and vacant for a couple of minutes. In that time he was unresponsive to any encouragement to move him or engage him. He would end the episode with a strange and sudden jump forward and then carry on as normal for a while before repeating this behaviour again and again. Now, we’re used to seeing bizarre and random behaviours from Charlie, but I knew this was more than just another autistic behaviour. Later that day we went to my parents for dinner. His behaviour continued and he became more vacant, he’d begun hand flapping, so much so that he couldn’t even feed himself. His grandparents were equally concerned. This was not something we had seen before or had any explanation for. I decided that if he was still like it on Monday then I would seek help… Something that I now realise is easier said than done.
On the Monday (it was half term week) I called his Community Paediatrician. She was on annual leave, I explained to her secretary that I was really worried, so she organised an appointment… The first available appointment being in April. If I wanted to get him seen sooner, she suggested I see my GP. So I made an appointment to see my GP that afternoon. My GP advised that he was best dealt with by his paediatrician… And he wrote to inform her… But wasn’t able to offer any other advice or immediate help. In my desperation I then phoned our local Autism charities helpline. I explained the behaviours to them and they suggested that it sounded like he was stressed and to “go back to basics” with him, using tools such as a social story or picture timetable to help reduce his anxiety. But by this time Charlie was almost completely unresponsive for most of the time. He would spend hours lying flat on his back with his eyes fixed and staring, one hand flapping and breathing rapidly, pale and clammy. He wasn’t even acknowledging my voice, let alone looking and understanding timetables.
We had been due to visit my sister and Charlie’s cousins in Cambridge that week as it was the half term holiday. Charlie had been really looking forward to going, so with no offers of professional help or intervention at home I boldly decided to go anyway, naively still believing that this may be something that he would just snap out of, and that the distraction and change of scenery would be of benefit.
Sadly things only got worse. By the Thursday evening Charlie had shut down completely, both physically and mentally. He was static and rigid, holding bizarre unsustainable positions for periods of up to 7 hours. When he did move from a fixed position it was to change to another position and again held for hours. At one point Charlie blinked and looked at me saying “hi mum, I’m back now” I asked him where he had been and he said “my brain is twitching” 2 seconds later he was gone again. When I finally managed to manoeuvre him into bed, he lay wide-eyed and rigid with his arm extended in the air until the morning. Me and my sister trawled the Internet for an explanation. We considered seizures, brain tumour or infection and catatonia.
On Friday morning we took him to A and E. After 5 hours of being reviewed by the paediatric doctors and a neurologist he was discharged home. He was medically fit and well. His symptoms were not indicative of seizures and he had no signs of infection. They asked what I thought it might be and they dismissed every theory, either through medical elimination or by saying it was so rare it was not possible. They discharged him home advising us that he was displaying “autistic behaviours” and that we should follow-up with our community paediatrician as planned.
We returned home on the Saturday , a whole week after the initial symptoms. I had kept a log of events over the week so typed them up and emailed them to everyone who I thought may be able to help… School, GP, social services and paediatrician. I simply can’t explain how we were feeling at this point. I was exhausted and felt sick to my stomach. I felt like I was stood at the site of a car crash holding my broken child, screaming for help but no one was bothered. I was living a nightmare.
Charlie, unbelievably, began to deteriorate even further over the next 24 hours. He became incontinent. He’d started punching himself in the head repeatedly, in an attempt to make the twitching stop. He’d barely slept or ate for a week. And I was at a loss of where to turn.
I started making phone calls on the Monday morning. Social services had been in contact with the Child Health and Disability team, in response to my email. They needed to assess Charlie but believed from my description that there was a possibility that he was suffering from seizures and were not prepared to see him until this has been dismissed. Even though he had seen a Neurologist in Cambridge they insisted that he had an EEG to eliminate this. After phoning my GP and waiting 2 hours and no call back I decided again in desperation to sit it out in our local A and E. It was a mammoth 5 hours before we even got to see a doctor. Despite there being nothing he could do, he took pity on us and arranged for Charlie to be assessed in the children’s ward the following day.
That night Charlie’s attempt to deal with his “twitching” progressed from punching himself in the head, to hitting his head against the tiled bathroom wall. Again we had another sleepless night, entranced, incontinent, self harming and hitting out at us when we tried to intervene.
The following day was spent on the children’s ward. Again he underwent all the routine medical checks including an eeg. As before and as expected, all the results came back as normal. The doctor again arranged for Charlie to be discharged home and for a follow-up appointment to be made with the child disability team to assess him. There was nothing they could do for him. Go home and await an appointment or if I don’t believe I can keep him safe, then they will contact social care for emergency intervention. I couldn’t believe this was my only option. Take home my child, who by now was behaving completely psychotic, out of control, and a danger to both himself and us or agree to have him taken away from me. Emotionally and physically exhausted and sick with fear that I had to spend another night helplessly watching him smash his own head against a wall, I agreed to them informing social care that I was unable to cope.
I’m no ‘Earth mother’ and I’m not the ‘super mum’ that people make me out to be. Being a mum to any child, no matter what, is not easy. There’s no training, no handbook, no magic wand. But, of course, the last thing I really wanted was for Charlie to be taken from me. I was desperate. I needed them to fix him. I wanted my Charlie back desperately and didn’t know how to express this in a world of medical people who seemed detached from any emotion and only able to interpret results and who failed to see that something was very wrong. It took me breaking down for them to finally look up from their notes and actually listen and understand and take ownership. Phone calls were made, and as a result Charlie was prescribed an anti-psychotic drug and an assessment with a consultant psychiatrist was made for the next morning. The relief was enormous. My parents had arrived at the hospital to support me as Gary was home taking care of the rest of the family. Exhausted but relieved, we spent the night at my parents house. My mum and dad took care of Charlie over night so that I could sleep… The first time in a week. The medication took effect within a couple of hours and Charlie eventually slept too.
When time allows I will continue this blog with details of Charlie’s diagnosis, the support and help we’ve received, how this has affected our family and what the future might hold.
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