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Sometimes

Sometimes

 
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I've never set much store by normality. It's a relative thing. A social construct built on shifting terrain. Once we have acquired the minimum skills required to function in society without endangering or hurting ourselves or others, it ceases to be a meaningful notion and is certainly not something we should aspire to. Even observing such cliched mantras as "Be true to yourself" will do you less harm. Some people are born feeling this, others learn it and some never do.

As a teenager, I found the quest for normality actively off-putting. My interest in any given musical artist was inversely proportional to its popularity, roughly-speaking. I was interested in counter-culture and largely unsusceptible to peer pressure. I was a cultural magpie, stealing little bits of what I liked from books, music and the arts. Socially, I regularly fell between two (or more) stalls and felt comfortable in the chasm. As an adult, I've come to realise that the slightly off-beat, "weird" kids at school are the ones to watch. They travel, they revolutionise, they have big, weird ideas and build companies out of them, they seem happier and more content. Sadly, I am as boring as other people's dreams - the exception that proves the rule. But Ben is not your average portfolio manager/playwright/neuroscientist, and so our family motto has become "everybody is somebody's weirdo" or, as Ben had engraved on his iPad, "everybody is somebody's wierdo", which surely only serves to reinforce the point. What is spelling if not convention*. Ben and I truthfully tell Spike that we love the way his brain works. We remind Oscar that "normal" is an illusion and that the cool kids question received ideas. At parents evening, a couple of weeks ago, more than one teacher said that Oscar "ploughed his own furrow" and was not influenced by his peers, which was unusual for his age group. I internally nodded my approval.  

But.

My little secret is that sometimes I want to be "normal". I know I am not alone in this amongst the SEN community. It takes effort to ignore the askance looks, the second looks, the outright staring that your child's slightly off-kilter behaviour attracts. On a night out, sometimes, it's nice to have a mental holiday and talk about culture or current affairs but you lack the determination to steer the conversation away from autism. Sometimes, I want to do things on a whim - take the children to the park without having to worry about whether I will manage on my own, go on holiday at short notice or drive past a tube station without having first checked TFL’s status reports.

On the flip side, sometimes we desperately want to tell you ALL about the latest instalment of the satanic soap opera that is the local authority's efforts to avoid providing a basic level of support for your child. Sometimes, when we are asked "How was your day?" or "How are you?", we want to cast aside the "fine" that is bubbling on our lips and actually tell you. Sometimes, we wish you could stand in our shoes for the meltdowns, for the perma-anxiety, for the soaring victories, so that you could just know without us telling you.  

We'd like to take our seats for the school play and not be sat on the edge of a volcano of worry about whether the clapping will prompt a meltdown. We'd like to take our child to an extra-curricular activity without levels of planning akin to those required to set up a new sovereign state. We'd like to be presented with genuine choices about where and how our child should be educated and supported, rather than choosing the least worst option.

Being a SEN parent is undeniably ParentingPlus. It's child rearing on amphetamines. Everything is harder, faster, stronger but, sometimes, it's better, too. When I talk to other parents of autistic kids, there are recurring themes that characterise our experience. Some good, some bad.

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Hypervigilance

When our children are babies and toddlers, our instincts guide us to be watchful and alert. Is your cruising child careening towards a sharp-cornered coffee table? Is that a marble clutched in their podgy fist?

The need for high levels of vigilance at this age is part and parcel of what makes caring for very young children so exhausting. But, of course, as time goes by your child becomes more independent and gradually learns how to keep themselves safe and you can reward yourself by drinking a cup of tea while it's still hot. When your child is autistic, that hot cup of tea can be a long time coming.

True hypervigilance, that state of heightened awareness about your surroundings, feeling constantly ready to fight or flee is commonly reported amongst parents of autistic children (and, of course, by autists, themselves). It comes as no surprise to read that our resting cortisol levels are similar to those of veteran soldiers.

The level of actual vigilance required will vary from family to family. For us, it is having one eye on Spike constantly when we are out of the home, as he can disappear like a magician performing a trick. Over the years, we have also developed a T1000-esque scanning ability. We can spot butterflies, dogs, fire alarms, closed train stations (but, sadly, not I.T. malfunctions) a mile off. We need to be on top of these things to keep Spike safe. There are also other lower key things which are important in different ways: being alert to ensure that Spike maintains his dignity, that his interactions in public are prosocial and looking out for signs of overstimulation.

Many SEN parents will have some shocker of a story relating to the difficulties involved in getting a good standard of support for their child. And so we must be vigilant when we meet with teachers, professionals involved in our child's care and with the local authority. But when you are repeatedly disappointed and let down by the people who are meant to be helping, it's easy to feel that stepping through the meeting room door, is akin to stepping on to the battlefield, with all the stress that entails. Vigilance becomes hypervigilance.

I'm particularly aware of how this state of hypervigilance must impact Oz. Fully engaging with him for a couple of minutes at a playground is nigh on impossible when I have to ensure that Spike is always in my peripheral vision. A small hiccup in Spike's schooling, therapy or support provision can turn up the heat on our mental stew of worries, rendering us distracted and jittery. These days, thanks to ABA and working immensely hard to understand the world from Spike's perspective, we don't live as defensively as we used to. We're lucky. It's very much an improving picture.

Caregiving

We've all heard the statement "Motherhood is the hardest job in the world". Lob those incendiary words at the Internet and watch them explode into a "mommy war". If I can take a semantic position, Motherhood is simply a state of being. It may be a privilege or you may regard it as a sacrifice. Perhaps you oscillate between the two depending on whether you have been able to wee uninterrupted on a given day. I would contend that it is not "job". Caregiving, on the other hand, most certainly is. If you work outside the home, and employ a nanny or childminder, you pay them to provide care for your child, not to be their mother.

Caring for very young children is hard work. It is relentless and monotonous. At times it demands every ounce of your physical and emotional energy. This is not to say that we would readily trade the experience and, when we choose or are required to delegate the care of our children, it is very often with some feelings of guilt. As our children grow older and become more independent, the intensity of caregiving is reduced or at least fundamentally altered into something less consuming.

This is the point of divergence for the parents of autistic children. Even when autism is not “severe” or paired with significant intellectual disability, the intensity of caregiving is likely to be higher for much longer and, possibly, indefinite. It’s undeniably challenging work. Sadly, in this country (and the world over, I suspect) carers are undervalued, underpaid and under-supported. Of course, giving care to your own child is tempered by rewards and pleasures. The same is true even when caregiving forms a large part of your parenting role. I liked that it gave me more opportunity for spending quality time with Spike. When he reached school age, Spike’s transition to full-time school was a slow one, and I valued that extra time with him. I got to know him better. We were more bonded and able to communicate with one another. Being the primary caregiver also means that when those milestones and developmental achievements occur, you are fully invested in them and they rock your world.

Perspective

At heart, human beings are problem-solvers. And we're good at it. It has elevated us to the top of the evolutionary pile. But as we've cracked the big problems - food, shelter, fire - the problems we face have become less concrete and they are often embedded in complex systems over which we have limited control. As a result, worrying, the mechanism of sending a problem to the front of our minds, so that we know what needs fixing, becomes disordered more easily. We worry unnecessarily. SEN parents are as guilty of this as the next family, and it is rare to meet a SEN parent who does not have anxiety piggy-backing on those ever-present worries. But the scale and seriousness of the concerns will be different, and this can lead to a sense of perspective. We don't sweat the small stuff. We pick our battles. On the down-side, this can be alienating. Amongst fellow parents, it can be difficult to relate to gripes about small inadequacies at school, when you're concerned that your child might be being squeezed out of mainstream schooling, in breach of their legal rights**. The list of things I don't worry about any more is long.

This altered perspective also allows you to focus on the tiny joys, the little things that inspire happiness seemingly out of proportion to the event. A few words from your child which give you a momentary insight into their inner world. A milestone met. A moment of quiet companionship. Witnessing their unfiltered joy at seeing a Jubilee line train with the “correct” coloured poles.

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Patience

Autism is a developmental disorder, which means that the typical timelines for child development are skewed - usually delayed. Parents of autistic kids, therefore, very quickly learn patience. Some milestones are a long time coming. Some will never come. Ideally, somewhere along the way we learn acceptance. We accept that our kids are on a different journey. This should not be confused with capitulation. Parents will know the potential of their child and you should see them fight for the opportunities their child deserves.

We also learn to be patient when interacting with our children. Autistic kids are vulnerable to overwhelm and adding your feelings of frustration to theirs is not going to lead to a successful outcome. Visual, auditory and sensory processing differences are more-or-less an autism standard. Our children need time to reconcile all this environmental input before they can respond. We learn to give them this time.

It’s not only our children who require our patience. I remember reading a book about autism where someone had interviewed the mother of autistic child and said something along the lines of “If I was a parent of a child with autism and saw the ignorance of people and the way in which some professionals make life for my child so difficult, I think I would kill someone!” The parent smiled and said “How many would you kill? Five, fifty, one hundred?”. Now, clearly there is hyperbole at play here, but you take the point. Frustration, exasperation, bewildering incompetence and apathy loom around every corner. SEN parents have to play the long game. A hair-trigger temper is not going to win your child more support.

Ben is super-naturally good at this. I’ve never met a more patient person. However, there is a certain cunning that underpins his patience. A natural game-theorist, he asks himself, “How can we win this?” and the answer is rarely an ill-timed rant on someone’s voicemail, however tempting that may be.

Empathy

I think "Stupid Things I Have Cried at When Pregnant" is a common internet meme. Dissolving into tears as a result of a broadside from an Oxfam advert is probably a universal new mum experience. Sure, hormones probably have a lot to answer for but parenthood itself can have a significant impact on empathy***. The act of nurturing infants sparks increased sensitivity to others’ needs, which can result in kindness to others.

There is also solid research behind the idea that hardship breeds compassion. Now, Spike’s autistic neurology is not a “hardship” but the interface between your autistic child and the wider world creates tension, problems and stress. I, perhaps, should not have been surprised to find that SEN parents are some of the most solicitous, caring and empathetic individuals that I have met. In particular, the support they provide one another is a wonderful thing to behold.  

On a personal level, having children certainly inspired increased levels of empathy (and respect) for my mother. I think most parents have probably experienced that “Thanks, Mum and Dad!” moment. It also made me more aware and attuned to children and other parents, generally, and the day-to-day complexities of their lives. I engaged in more charitable giving and other prosocial behaviours as a result. Having an autistic child, though, resulted in a huge increase in my feelings of empathy. Not just for children, or parents, or autistic children and their parents, but for anyone facing significant challenges. I see them and I look for ways to help. As a community, SEN parents just seem to get that everyone has their battles and, by and large, they treat people accordingly. By lumping myself in with this amazing group of parents, I am at risk of sounding like a little Mother Theresa-ish. The reality is that my internal landscape is completely undermined by the fact that I am a disorganised mess, so my good deeds are rather low-key.

Somehow, being a “proper adult” eludes me. I am currently wearing dungarees and eating sweets (although I’m also drinking wine, so…). But, our boys have helped me grow and improve in ways I never anticipated. That “sometimes” feeling never lasts long.

 

* If this somehow conveys that I have a laissez-faire attitude to spelling, I must admit the opposite is true. I am a terrible spelling pedant.

** Not our personal experience, but woefully common.   

*** Not always in the way you would expect. Research show that some people experience a reduction in empathy. Preoccupation with their own infant and immediate family can diminish feelings of empathy for others. This is especially true in early infancy, where the single-point focus on the baby may ensure its survival, but sometimes apathy or antipathy to the plight of others persists beyond babyhood. I should add that I am not, at all, implying that empathy is a parental construct and that if you don’t have a kid you must be a sociopath. Some of my favourite (very compassionate) people don’t have children!

 

Want to read more? Feeling a long way from home.

Spectrum Sunday

 
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