(Now let me see… are the words of the autistic boy in The A Word series which was amazing and when I say it or write it I think of him.)

Now let me see… before I tell all about Catatonia and Autism shutdown I will update you about the events that occurred prior to the new diagnosis. In March 2023 Molly was shutting down, her presentation was deteriorating, her processing was delayed and she was speaking less and less. (note to self: remember she has in the past not spoken for a whole 10 months)

She does worry me……

In April she was admitted into hospital with a life threatening Gastrointestinal (GI) bleed. She was vomiting blood and was taken to hospital bypassing A&E going directly to resus where she could be monitored until the surgeon arrived, it was about 11pm. I had no idea about the severity of what was going on but was aware there were lots of doctors and nurses hovering. To be honest I am a fan of 24hours in A&E and in a strange way I was in my element just for a moment. Molly was in theatre soon after we arrived where they clipped together a tear in her stomach to stop the bleeding. Her recovery was slow and after scans and x-rays we were told she had pneumonia and was also faecal loaded. I am always looking for reasons to justify her presentation or mood and I was thinking this is it ,this is the reason for the behaviours she was unwell and the fact she can’t tell us how she feels makes it all the more difficult to know.

Transition out of hospital back to Mountview was difficult but we all put it down to the her recent ordeal. A few days later the vomiting restarted, this time she was stuck in the bathroom and was not for moving, the ambulance crew could not force her and it was difficult to say the least, a two male crew requested a female crew to see if that would help and in the end it was my friend Jean and myself along with a lorazepam that got her on to the stretcher into the ambulance and back into hospital. Her blood tests did not indicate there was internal bleeding so she was observed and given anti sickness medication.

A third admission for the same symptoms has us all baffled, this time they said it was Cyclical Vomiting Syndrome (I just thought – whatever).

The whole experience got me questioning…. her refusing to move or get up, appearing stuck and also being select mute ‘Could Molly be Catatonic?’

I bought the book Catatonia, Shutdown and Breakdown in Autism by Dr Amitta Shah, I was gripped and read it from start to finish. I saw Molly on most of the pages and discussed this with the CLDT and we soon after, completed the Autism catatonia Evaluation (ACE-S).

Sitting in this space of the unknown is horrible I feel doomed!! I cannot control any of this it’s an unbearable helpless feeling and there is yet again only one thing I can do… keep on keeping on….

I will keep writing about and fighting for Molly and all others battling against the odds.

Luv C