Our first blog marking Autism Awareness Week is warm, funny and profound. While it demonstrates some of the difficulties associated with the condition, it also shows how with love and understanding, this mother and son live what can only be described as an interesting life…to say the least:
“Well I don’t know, this is a ridiculous situation to find myself in! I am sitting here at 1am, squinting at what was once a beanie baby lion, but now looks like some horrible stuffed rag. I know that no sleep will be had unless I carry out emergency surgery, so I find myself with my sewing box, bleary eyed, trying to thread a needle.
“Jack is sitting scrutinising the proceedings carefully, muttering under his breath, “Oh dear, oh dear…” You see, Lion is partially decapitated and is oozing matted greyish stuffing. Delicate surgery is required.
“How has it come to this? Jack is 27 years old – a great big bear of a man, standing 6’2” – and here he is in his striped pyjamas, cross legged on his mum’s bed, unable to sleep with Lion in such a poorly state.
“I think back 27 years, to a hospital bed in the early hours of the morning, giving birth to my bouncing baby boy, just as the Berlin Wall came down! But the hopes and dreams I had for that little boy, somehow blew off course. They were interrupted by this thing called autism. This thing called autism shaped our lives for the next 27 years. But what does it mean?
“The National Autistic Society describes it as, “A lifelong, developmental disability that affects how a person communicates with and relates to other people and how they experience the world around them.” Which is a better description than what I’d read avidly in 1991.
“The Austrian-American psychiatrist Leo Kanner, who first identified autism in 1949, described it as being caused by a lack of maternal warmth, coining the delightful phrase, ‘refrigerator mother’. Well, Mr Kanner, I don’t think the kind of refrigerator mother you meant referred to the times I have sat shivering through the night with Jack, watching him sleep, not daring to move in case I disturb my brief respite of peace, wishing I’d worn long johns. Refrigerator mother indeed!
“It has been an amazing 27 years. There have been times of deep despair, but also of matchless joy and laughter. Oh my, the laughter! This is what I choose to focus on for my little blog.
“Today we said goodbye to something that has been a part of Jack for the last four years. Such a part of him in fact, it is very rare to find a photo from the last few years without it…Jack’s very famous canvas hat!
“It has steadily fallen apart, and I have braced myself for the inevitable. I have purchased several replacements over the years, but none of them have been quite right. Last night Jack decided to carry out emergency repair work. It wasn’t successful. Instead, he cut a massive square out of the side. A little more ventilation than anticipated! There is going to be trouble ahead!
“So, when did I learn to laugh about it? There are so many stories, but some are outstanding. Like the time when, as a toddler, he got up in the middle of the night and flicked the contents of a pot of white emulsion with a spoon all over the living room (and himself!). He had a wonderful time, but the pine bookcase was never the same!
“Then there are the obsessions, which have blighted, confused, confounded and amused in equal measures. The flower obsession was very long lasting, causing more issues than you might imagine. A low point saw him running into a churchyard, grabbing flowers off a grave!
“Then there was his obsession with paper money – the gentleman’s face in McDonald’s when he swiped the waving tenner out of his hand at the counter. The obsession with wigs… less said the better there!
“There was the umbrellas and walking sticks one, culminating with a most understanding elderly lady left swaying on her feet as Jack commandeered her stick. And last, but not least, the JCB diggers. How did that manifest? Put it this way – the driver shouldn’t have parked it outside the house and left the key in. At least, that’s what Jack’s carer said when she told the driver off afterwards. Attack was the best form of defence on this occasion!
“Yes, I have grey hair – the wonders of hair dye! Yes, the future terrifies me. But in the main we muddle on by. Jack and me and our four chihuahuas (don’t ask!). And his long-suffering brother who is now a living respite-giving 20-minute drive away.
“Life is never dull – Jack is given every opportunity to express himself and he does; it’s just different to the ways of most people. So, for instance, I didn’t get a chance to explain to the window salesman that when Jack opened the door, dressed in a vest, kilt, biker boots, a blonde wig, red beard and Tam o’ Shanter hat, he was OBVIOUSLY re-enacting the dance sequence from ‘The Snowman’. Doesn’t everyone do that?
“It’s just a normal day in the life of Jack…and just another ridiculous situation I find myself in!”
Maggie Hawkins – from Essex