Joel and Dad - Jake and me on his 17th Birthday before going into the sea he will only go in on Dad's shoulders requesting "piggy back" |
Joel turned 17 on July 30th this year and usually would have been at his camp he goes to annually for disabled children in July, https://www.woodlarks.org.uk but due to lockdown this was cancelled so he came to join us on the coast for his birthday and spent it with his aunts, cousin, siblings, his dad and myself. I couldn't help thinking during lockdown about families of children like Joel who had services withdrawn or semi-withdrawn putting more pressure on them.
I don't underestimate how fortunate we are that Joel is now in full time residential care and can come and see us every weekend without us being so exhausted we don't appreciate having him. But it took quite a few years of knocking doors to get this in place with social services and this happened gradually from when Joel was around the same age as Dylan Freeman who had severe autism age 10 who died last week after being suffocated by his mother Olga Freeman who had struggled to look after him in the last six months.
I know that this year has been an incredibly challenging time for parents in lockdown but for parents with severely disabled children in lockdown, where all the services were taken away from them it has been unbelievably difficult. When I read about Olga Freeman who was charged for killing her autistic son I immediately sympathised with her and felt her pain and unbearable suffering.
When Joel was 10 I was utterly exhausted from caring for him full time for his young life as well as looking after my two younger children age 8 and 3 at the time and even with a supportive caring father living at home it was still too much to deal with due to the 24 hour care Joel needed and lack of sleep and external support services. We didn't live near family either as just sometimes someone lending a sympathetic ear and a cup of tea can relieve the endless monotony of caring for a child with a severe disability.
For Olga Freeman, a single mum having to care for Dylan who had severe autism she was on her own without any support this proved too much and she took his life. I have been on the brink of desperation with Joel around this age at 4am without sleep and Joel flailing and screaming similar to how Dylan sounded and had to walk out of his bedroom and get my husband to take over because I can only compare it to slow torture for the mother and it becomes so unbearable there seems to be no way out.
Having a child with severe autism can be very isolating at the best of times; we don't fit in with the usual 2.4 families who can meet up and let their kids just have fun playing while parents socialise. Having a child like Joel means that a parent can never sit back and relax because they have to be hyper vigilant at all times and keep a constant eye on their child. A recent study shows that nearly 1 in 5 parents of kids with autism who participated in a new study had enough symptoms of post-traumatic stress disorder to qualify for a provisional diagnosis.
I never had PTSD formally diagnosed as I was never asked but I displayed all the symptoms. When I arrived back to the UK from Australia ten years ago I went to a GP with Joel age 7 and this GP said he'd never seen such a severe case of a child with autism in all the 20 years of practise yet never once did he ask me about my mental health and what support I was receiving. He also said he didn't know much about Autism but could tell me about Downs....At the time I was receiving no respite services and I don't feel things have moved on much over the last ten years reading the news about Olga Freeman and how she has been let down by local services. I strongly feel the Government have been negligent in helping parents with children living at home with severe disabilities during lockdown by withdrawing services making parents like Olga Freeman feel utterly abandoned and more support needs to be put in place with or without lockdowns in the future so that tragic deaths can be avoided in future.
I don't blame Olga Freeman as she did not have any support in place for respite and as a parent with a child with severe autism this is vital as it can't be done alone.
In a recent BBC article about special needs families in lockdown Ali Fiddy, chief executive of the Independent Provider of Special Education Advice, said her organisation was seeing families "who are very clearly struggling". There was definitely not enough support being offered for parents, she said, with many families feeling "utterly abandoned".
We had Joel stay in Cornwall for his annual holiday there to see family and even after five days with two carers we were exhausted and we were lucky that he was happy to go back to his wonderful residential home and was in great spirits when he returned singing songs and singing his family member names to the residential staff who were so happy to see him like this. They are going to be printing some canvas photos of him and his family so he has them at home as he adores looking at photos and photo albums.
We did have to call the fire brigade as he got stuck up a tree and was asking for a 'ladder' to get down. Luckily the fire service were amazing and Joel co-operated with them very well. This is just one hazard for parents who have children or teenagers with autism as many like to bolt or climb high without any fear of danger. Joel also put his finger in the light socket so we had to go and buy some gaffer tape to stop this from happening. We have to be one step ahead and hyper vigilant at all times. He also managed to get all my makeup out and put lipstick over clothes and the walls like a toddler would do.
The thing with autism is it's tiring. It's tiring with babies and toddlers but they eventually grow out of this stage and parents no longer need to watch them and they also eventually sleep through the night. But with children and teenagers with severe autism they don't grow out of the toddler stage and often don't sleep, plus they are also non verbal which makes it impossible to understand if they are in pain or need help and for some parents this becomes too much to handle. So next time you judge a child who's having a meltdown and flailing about screaming think about the parent for a minute and if you know anyone with a child with autism; reach out. It's never too late to offer support even if it's for the parent to have a supportive friend to talk to without being judged just to listen. I'm not sure Olga had much of this.
RIP Dylan Freeman xxxxx
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| Joel Stuck up the tree in Cornwall |
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| Joel with the kind Firemen who let him go in their Fire Engine and gave him their helmet to try on |
