The International Writers Magazine: Living Now
A Day in the Life
Autism is a life-long condition present from early childhood, for which the cause is unknown and there’s no cure.
Afflicted youngsters like our son have great difficulty in forming relationships, using language and dealing with ambiguity. He’s also strong willed, organised and structured, with strong personal preferences and learns at his own pace in a way that makes sense to him.
This makes for an interesting ‘day in the life’ with our 20 year old son who’s unable to speak or look after himself and still wears nappies.
Getting up: Like a young adult suffering from a hangover, he grunts and glares at me through one open eye until he decides to roll off his bed and onto his feet. He then shuffles slowly along the landing towards the bathroom as though he’s wearing lead boots. He’s not hungover just tired from laughing, giggling and using his bed as a trampoline all night long.
Being changed: He’s reluctant to be undressed out of his ‘tigger onsie’ pyjamas. I’m not sure why he’s so keen on this tasteless fleecy tiger striped garment, other than it’s one of his strong personal preferences. The first of these came into our lives when we were Christmas shopping a few years ago and he picked one up and put it in the trolley. The fact that I had to sneakily swap it for one in the right size and then buy several more is neither here nor there.
Toilet training: It’s time for him to sit on the toilet while I fervently hope he uses it. As usual, he reluctantly sits on it for around 15 minutes growling at me, before standing up and wetting the floor. I resign myself to cleaning up the spillage and dressing him in a nappy and his outdoor clothes.
Breakfast time: Cornflakes, fruit, milk and yoghurt is his usual fare. Disaster has struck this morning because we’ve run out of yoghurt and he’s frantically pointing to the fridge. I open it for him and he chooses the jar of cranberry jelly. Once it is generously smothered in jelly, he starts eating his breakfast. Feeling queasy at the sight of what our son is now eating, I make myself a cup of tea.
Movie time: With his breakfast devoured, he chooses a movie to watch. Right on queue he begins laughing, squealing and wiggling his hips in time with the movie’s music. This is amusing to watch especially as he laughs so much he can’t stand up, and collapses in a heap on his sofa.
New shoes: After a ‘battle of wills’ he’s wearing his new trainers. He may have lost the battle, but expresses his disgust at having to wear new shoes by walking around our living room deliberately stamping his feet with every step he takes. There’s no display of temper just a bit of well-directed rebellion.
Charm offensive: On the arrival of his Carer who has come to take him to Outreach for the day, his charm offensive is expertly executed through a beaming smile, happy noise and a big cuddle. Her usual response comes as no surprise. “He’s just so cute. I love him to death.” Our son has a well-honed technique for tugging heart strings in order to get his own way.
He’s off: Standing in our porch, I watch our son as he cranes his neck almost 180 degrees to watch me through the rear window of his Carer’s car until he disappears out of sight. Although I wave him off, he doesn’t reciprocate. I don’t think he understands the reason for waving because it serves no useful purpose and doesn’t lead to a specific action or activity.
Home alone: During the time our son is away for the day, I’m able to get on with the things I need to accomplish such as shopping, writing, D.I.Y., family history research and gardening. As a recently retired Programme Manager I continue to be list oriented and strive to accomplish as much as I possibly can every day.
He’s back: Our son rings the doorbell and stands in the porch until I open the door. After a quick hug and while I’m speaking with his Carer he takes off his coat, hoodie, socks and shoes. Then he runs upstairs and waits for me to dress him in one of his treasured ‘tigger onsies’. Failure to do this quickly enough results in a lot of complaining and a nappy flood.
Evening meal: He chooses a movie and picks up an apple to eat, before calmly taking various items of food from the cupboard and fridge and neatly lining them up on the worktop. This is a sure sign that he’s hungry and wants to be fed NOW!
Chilling out: After he’s eaten, he ‘slobs’ on his sofa and watches movies. Every now and then he comes into the living room for a cuddle before returning to his sofa. After a busy day at Outreach he’s not motivated to do anything other than ‘chill out’.
Bedtime: Unprompted at 9 o’clock he takes me up to the bathroom for a nappy change and to close the blind in his bedroom. He then hugs me and gives me a slobbery kiss, before pushing me out of his room and shutting the door behind me. I’ve no choice but to accept the fact that my job is done and I’ve been summarily dismissed.
If I have given the impression that we over-indulge our son, it is far from the truth since he rarely behaves badly and we have worked hard with him over many years to build a comfortable environment and sensible routine with which he is happy and secure.
The ‘day in the life’ scenario changes enormously at weekends when we take our son on excursions to unfamiliar surroundings where he is at risk of having a ‘meltdown’.
His ‘meltdowns’ are characterised by him rooting himself to the spot, refusing to move and lashing out with his fists. This is usually accompanied by head butting, angry guttural sounds and the throwing of objects within his reach.
These are not brattish temper tantrums but unpredictable cries for help with many triggers:
Communication: Due to his impaired communication skills he can become intensely angry and frustrated when he’s unable to express his wants and needs.
Control: Due to his need for safety and security he can become very fearful and anxious when he’s unable to control what he’s doing or what’s occurring around him.
Discord: Due to his gentle nature he can become alarmed and upset by intense emotions such as crying and shouting even when not directed at him.
Stimuli: Due to his sensitivity to loud noises and bright lights he can become overwhelmed and frightened in places such as shopping centres and airports.
Overload: Due to his need to learn at his own pace and in his own way he can become daunted and terrified when he’s required to process large amounts of new information.
Disorder: Due to his structured and orderly mind he can become intimidated and overpowered in environments where chaos and disorder prevail.
Change: Due to his need for certainty rather than ambiguity he can become distressed and upset when expectations suddenly change.
For our adult son with the capability of a child, infinite patience and understanding is required to protect him and ensure his sense of security and well-being is not undermined. He has very few ‘meltdowns’ nowadays because he copes reasonably well with change and unfamiliar situations, despite this he is still unable to take care of himself.
Although we continually strive to help him reach his full potential, we accepted a long time ago that he is likely to outlive us. He will obviously be cared for by us for as long as possible. Beyond that he has a home for life and older twin sisters who love him very much.
We adore our son and consider him to be very special. The only thing that saddens me is that he will probably never be able to say, “I love you mum.”
To all you mums’ out there I say, “Listen to your child’s voice - not all children have one.”
© Mel Hamson, 26 May 2015