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If a parent is going to tuck her two children under her arms and face the world, it is Anna Kennedy. I told her the other day, I have two heroines in my life: Violette Szabo and Anna Kennedy.
I first met Anna a few years back, when she presented me with an award at a swanky hotel in London. Our paths didn’t cross again until two years ago when we worked together to help a homeless autistic man. Anna is now a Champion for the charity I work for and sponsored the Autism Passport which we produced.
It is 4.30am and I have just spent the last hour having facts thrown at me about Dante’s Inferno (book not game) by Seb, my 21-year-old autistic son.
In a nutshell, the book is a story of Dante’s journey through hell. I can identify with that, especially in the wee hours of the morning, when I would quite happily do a pact with the devil myself.
I am a single parent and I work full-time as a manager of a welfare rights service. During the COVID-19 pandemic, I am working from home and also the main carer for my three grown-up children with autism.
Only one of my autistic children lives at home and you might think that makes life less stressful; It doesn’t. The two (one son, one daughter) who live away from home includes my son who has complex mental health difficulties and past psychotic episodes and my daughter, who is full of anxiety and suffers from mental health difficulties.
Both will call me at any time of day or night to offload, more often than not, with something that has just popped into their head. We have a chat, or rather they talk at me and I listen. I have to continually remind myself, that this isn’t selfish behaviour, but part of their egocentric personalities.
I also have a fourth child (19), who has a chronic medical condition and on a full time Performing Arts course. He did come home at the beginning of the pandemic, all of two days, but found the continual stimming of his brother, early morning banging and shouting and slow internet connection too much to bear.He packed up his stuff and went back to Southend. However, he is a good son and calls me twice a day to check I am coping and allow me to offload.
Routine for Seb was going to be important during the lockdown, and a visual timetable was a must. So, I painted part of the kitchen wall with blackboard paint and got underway. Seb had a great time drawing the lines for the timetable (autistic individuals have a wonderful eye for detail.)
We live in a rural village, so I put a shout out on the local community Facebook page and asked if there was any voluntary work Seb could do, preferably with animals. A wonderful woman called Jane who owns a farm came to my rescue and offered Seb ‘work.’ Jane has no experience with autism, but I have never met anyone who gets my son like me.
He goes Monday to Friday for two/three hours a day and helps with the donkeys, horses, sheep and chickens. I am convinced that Seb’s mental health would have deteriorated quickly without this daily activity and he would have slipped back into crisis. Seb has a history of self-harm and suicide ideation, so keeping him occupied is essential for both his and my mental health.
To keep my mental health as well as it can be, I prioritise and refuse to be hard on myself. There have been days during the pandemic that I have felt distressed, frustrated, exhausted and angry. I just remind myself that these feelings are normal, and it will pass.
When my son becomes stressed, agitated and anxious, I think how much worse it would be if he or I were in the hospital. I try and pay attention to my own needs and feelings, but anyone caring for another person will tell you how difficult that is. I try to make sure I engage in healthy activities and things I find relaxing. I avoid excessive media coverage about the virus and limit myself to Covid information three times a week.
As a welfare rights manager, I need to know what is happening regarding benefits etc. Sifting through information suitable to share with the autistic community takes time and concentration.
There are days when I am so tired, that all I want to do fall asleep on the sofa. Working full-time in a high-pressured job and caring for others can take its toll on the ‘toughest’ of us. I often have to force myself to go for a walk, because I know exercise is not of a friend of negative thoughts. Coping with a work-related crisis is hard but manageable, however, reverse that to one of my children and it becomes overwhelming and emotionally draining.
I do think we unpaid carers have been forgotten in this crisis. Seb’s social worker called me the other day and asked if she could close his case? Does she think because I am behind closed doors with no additional help, that I am coping or that my patience hasn’t been tried by Greek God facts being recited, for the millionth time on full voice volume? Many professionals have no idea what we face alone.
Did you know that during WW2, sleep deprivation was the most popular form of torture? I would laugh in the face of my interrogators trying to wheedle information out of me. I am an expert at napping without the ‘enemy’ seeing.
I have tried everything to try and get Seb to sleep normal hours- osteopath, chiropractor, homeopathy, sleep manuals, professional advice, not looking at the clock and healing crystals!
The twitchy eye and trembling hands from exhaustion, left some poor bloke in Morrison’s last week thinking I was coming on to him! I have set up a Facebook group for sleep-deprived parents and carers – Dark Thirty Autism group
I do not have to be positive and happy all the time, but I do need to look after myself. That way I can carry on looking after my family.
An earlier version of this was published on Anna Kennedy Online.