More writing to inflict on you … this time it’s life-writing. This was one of the parts of the course I thought I’d really enjoy … and I was right!!!
Just the Norm!
Looking at the dimpled face grinning up at me I can’t help but smile. The fact that the face is smothered in mud (including teeth) and the accompanying body is a wet, muddy, dripping mess, pales into insignificance. This is a common occurrence in the life of my autistic son and one that I have learned to prepare for. A blanket is kept at the back door in readiness for stripping off the muddy child and carrying him upstairs into the bathroom. Previously houseproud, I have learned to take joy in the smiles and grins of my children and, generally, overlook the muddy foot and hand prints.
My first foray into parenthood, over a decade ago, was daunting. Presented with a screaming baby that I was too drugged up to even hold properly, I remember looking down at his little angry face and wondering who he was, who he would become and whether I would even make the grade for the job before me. Little did I realise that wintery day but a wonderfully exciting adventure was just beginning.
That squalling baby was joined, over the next few years by two brothers and, in time my husband and I were gently guided, twice, into the long, arduous assessment process where no professional wants to actually say the word “autism” but it is forever implied.
The point of diagnosis, although anticipated in both cases, was a time of deep, deep mourning which could be likened to bereavement. My children remained the same before and after diagnosis but my path had changed, I became known as a parent of “children with special needs”, a term which I reluctantly accept but do not embrace.
Now, as I peer through the greyness I see Son No2, sitting in the muddy patch under the swing. The patch where little feet have scuffed the ground as they swing higher and higher. Smiles light his face as he splashes the puddles that have formed around him. His hands raise and he carefully rubs mud onto his face, circling round and round, until two red lips and two green eyes are the only visible splashes of colour.
Sensory stimulation is important to my sons. From sparkling lights, to mud baths, to echolalia, they finds ways to take comfort and escape from their surroundings. Above all, however, the place where Son No2 is most at home, where he shines, is the seaside. The sounds of the rushing waves, the breeze blowing through him and the different textures of wet and dry sand all combine to make the seaside a sanctuary, an escape, a safe haven. For Son No1, the place is safety is ensconced in his bedroom with a laptop, exploring, playing and learning.
A means of escape is vital to a child, or an adult, on the autistic spectrum. Often everyday life can be overwhelming, a sensory overload. Lights, sounds, smells all combine to baffle those who may see, hear and smell in far more detail than others. Escape can be varied, and wide-ranging coping mechanisms are put in place where possible. Son No2 often escapes into a world of invisibility where there are sometimes amusing or frustrating consequences for those around him, especially for his brother, Son No1, who is as literal as any the writer of any textbook on autism would like.
On hearing warning sounds of battle I look out into the hall.
‘Mu-um, he stood on my tortoise.’
‘I didn’t, it was an accident. There isn’t a tortoise anyway. He’s telling lies Mum.’
Ah yes, the long-running invisible pet obsession. This morning it appears that the invisible tortoise is on the loose and has, inadvertently, been stepped on. A hunt ensues, some participants more willing than others.
Eventually the errant (invisible) tortoise is captured, returned to his (invisible) enclosure and we leave, late once again, for school.
Later that day there is more drama as someone drops the invisible goldfish bowl on the way out of school. As Mum, I’m given the responsibility of holding the fish in my cupped hands to ensure that it has enough water and doesn’t die.
A few weeks later and the invisible pets have been replaced with an invisible watch only days before the time changes. I carefully check all the clocks in the house but foolishly forget to check the invisible watch.
‘Morning Mum. Time to get up’. I squint at the blurry figure bouncing on my bed.
‘It’s too early, Son. You aren’t supposed to get up for another hour.’
‘No, no, my alarm woke me.’ The bouncing continues unabated. Resigned I rub my eyes and check the clock again. It is 5.30, far too early to be woken up. Looking at the smiling face, expectantly waiting for breakfast it’s hard to remain firm.
A chat with the teacher some days later reveals that our lad has refused to work past 2pm each day in school as his invisible watch is still running one hour ahead of time! I eventually pretend to remove the watch, fiddle about with it, hoping for the best, and manage to align the time with real life. The result is instantaneous, no more early mornings and, over time, the obsession gradually fades to be replaced with something else.
Not all obsessions are humorous, some are more educational. At three years old Son No1 developed an obsession with flags and could name all the country flags together with most of the capital cities. What a challenge. I had a book of flags at my side at all times so I could confirm what he already knew! Cars followed after flags and then, in time, birds. Amazingly, when he moves from one obsession to another, the information he has pored over and studied is carefully filed away in his mind and the slate wiped clean.
I embrace the quirks of autism and try to stay positive in the midst of the challenges that face me but it isn’t always easy. One of my sons suffers from a form of Seasonal Affective Disorder which makes winter a tough time for him, and as a result, us as a family. It takes different forms but, nearly always, my happy, smiley, boy retreats from the world and becomes morose, anxious and sad.
One year recently, an irrational fear of dogs accompanied his annual bout of SAD. The fear so persistent and intense that he was scared to go out into our enclosed garden to play. The thought of going outside to go anywhere except school resulted in him sobbing, self-harming and sometimes lashing out. This was probably one of the hardest “episodes” to watch.
Months of work were done with my son. Lots of introductions to dogs belonging to friends, lots of patience and, eventually, there was success. My son agreed to and tolerated going for a walk with dog. The great celebrations were cut short in one clean sweep when, less than a week later, a large dog escaped in a crowded park and chased my son as he ran away screaming. The dog wanted to play but its sheer size was enough to reduce my son to a shaking, sobbing wreck who insisted on being carried home.
Taking advice from several professionals and other experienced parents, a wet-nosed bundle of yellow fur joined our family one day, bouncing amongst the children, tail wagging, licking faces that ventured too close. Alfie became part of our family with the intention of helping our sons although he soon became loved and dear to us all. A bond quickly developed between Alfie and our sons, and he would wander around the house closely following wherever they went.
There are many, many good times. Living with autism is fun, exciting and, above all, a privilege. The fears, the meltdowns, the obsessions all are forgotten when there are spontaneous cuddles. Every child or adult on the autistic spectrum is unique, in the same way that everyone not on the spectrum is unique. I treasure the opportunity of viewing the world through different eyes and I delight in how individual each of my children is.
Son No1, at 10, shows no embarrassment in giving me a kiss at the school gates, nor any hesitation in shouting “I love you Mum” across the playground. His brother, Son No2, would sooner crawl on his tummy across the playground than acknowledge that he knows me once he is in school but, at home, where he is safe, he is one of the most loving children I’ve ever known. There is an innocence to autism and an utter dependence on the people that my sons love and trust. It is true that, at home, we often see the worst of behaviour but is a privilege, because, at home, my sons know that they are truly accepted, truly able to be themselves, the burden of conforming is no longer necessary.