I am female, in my late 50s and live in North East England. I work full-time as manager for MAIN, a local charity which provides short breaks respite for people with disabilities. I am a qualified teacher with a Master Degree in Autism.
I am main carer for our 27-year-old daughter who has autism, learning disabilities and asthma. My husband who is a keyworker, working seven-days per week most weeks shares our home.
Pre-pandemic, our daughter attended a specialist day service for adults with autism full-time. I have three PAs who provide respite and holiday cover when my daughter’s day service is on holiday and to give me a break. Since the pandemic two PAs went into isolation due to underlying health conditions. The following week my daughter’s day service closed. Leaving me with four hours’ support per week.
I have been working full-time from home since the Government’s instruction, whilst also caring full-time for our daughter. Now going into week seven of the restrictions. (I prefer to call them restrictions. 'Lockdown' is something for rioting prisoners and once lifted, there will still be restrictions in place so this seems a more acceptable definition).
An overriding emotion since the pandemic is that of fear. Not fear for me getting the virus, but
- Fear of who will care for her if my husband and I will become ill at the same time
- Fear that she becomes ill
- Fear, due to her underlying health conditions she will need to be admitted to hospital, where I wouldn’t be allowed to support her.
I have every confidence in the nursing team’s ability to care for her critical care needs but they wouldn’t be able to cope with her learning disability. She would be so frightened in this situation and I would not be able to be there to support her; to communicate for her; to prevent those triggers for her. They would almost certainly have to sedate her whether she needed a ventilator or not. Even if she did recover physically, the emotional damage would be irreparable.
Having to re-adjust to life since the restrictions on both a personal level and professional level has been difficult. As manager of the charity, I have had to focus considerable attention on securing additional funding in order to protect employment of the seventy plus employees. This involved tendering for new contracts, which will hopefully get us over this difficult time; understanding the daily changes in employment legislation in very difficult communication difficulties; attending numerous Teams/ Hangout/ Zoom meetings and making phone calls to staff. As a result, I have not been able to focus the attention on my daughter, which she deserves and which will stimulate her and allow her to thrive.
Due to my considerable work responsibilities and commitments I took my “eye off the ball”. This has resulted in a toilet being blocked three times. Like many people with autism my daughter has sensory issues: she seeks sensory stimuli, she over dries her body after shower/bath; she over brushes her teeth and hair - she overdoes the same when she goes to the toilet! As I have been engrossed in work-related issues I missed the signs - three times!
However we manage to take our one-hour’s exercise every day: a steady walk. This too has its own issues. Our daughter is petrified (and I do not use the word loosely) of dogs when they are not on a lead. I have bumped into a woman walking her two dogs without leads, which came wandering over several times and has now led me to register a Hate Crime complaint.
First encounter:
Hate Crime Lady (HCL) walking towards us with dogs off lead. Our daughter/Vulnerable Adult (VA): Screaming hysterically
HCL: Stop screaming at my dogs. You’ll frighten them. [angry tone]
Carer of Vulnerable Adult/me (COVA): She doesn’t understand she has learning disabilities and autism [polite tone]
Second encounter:
HCL walking towards us on path with her two dogs loose again. COVA and VA walk approximately five meters away from path to avoid confrontation. HCL’s dogs again come wondering over. VA hysterical again:
HCL: Don’t do that [angrily]
COVA: She can’t help it she’s autistic and scared of dogs when they’re not on a lead
HCL: Well she shouldn’t kick my dogs
HCL alleges VA kicked her dog. COVA didn’t see it, but even if she did, it must have been a feeble flick not premier league footballer volley - and anyway - it’s what happens when you are scared and backed into a corner.
COVA: Well they should be on a lead [even more angrily]
The climax:
HCL walks towards COVA and VA with her dogs - yes you’ve guessed it - off their leads
COVA: Please will you put your dogs on the lead? [polite but getting fed up now tone]
HCL walks to dog one takes it by collar then walks to dog two and holds it by collar to walk past
COVA: Don’t you have leads for your dogs? [polite but firm]
COVA: Oh shut up (whilst displaying two finger salute). You get your daughter under control!
Result: log on to register Hate Crime complaint that has been acknowledged by the police. Pending investigation Not for me. Not for our daughter. But for all the vulnerable people with disabilities out there who don’t have the voice.
