When I was dragged into the world of disability by my eldest son, I was forced to confront a lot of new and uncomfortable truths – truths about people, about society, and about myself. I couldn’t stay who I was and still be an effective mother and advocate for my son. It was a long and unpleasant transition, with a fair few breakdowns and personal crises along the way. This was awfully inconvenient: trying to care for a child with high needs is not a good time to be having a painful personal awakening. And sharing your own inner turmoil during such times never goes down well because the world screams back at you to stop being so damn self-involved and to focus on the child instead. Focus on the child, while your view of the world has been turned on its head, focus on the child, while your understanding of the brain and the body and what makes those things “good” is fundamentally challenged, focus on the child, while your entire life plan becomes so much mulch.reveal

When my second child was diagnosed not just with autism, but with dyspraxia, ADHD, anxiety, and suspected dysgraphia and dyslexia, I was thrown back in the grinder and I was angry at myself that I couldn’t just take it in my stride. I berated myself for being too weak to just nod and smile and gleefully jump into the learning and therapies and interventions for him too. Hadn’t I been through this all before – wasn’t I all super-enlightened and accepting of all disabilities now? Why the hell was it so hard all over again – did the fact I was finding it so hard to accept that my second son had all these other challenges, a damning reflection on me … again?

That’s part of it though, isn’t it: our children get diagnoses, and they’re still who they were before the diagnosis, but we change. Our current understanding of what the child can do, will do, how their lives will be, gets thrown out the window. Our view of what we were going to do with our own lives, has to adjust every time a new diagnosis turns up. Every new diagnosis is a new learning curve, and a new foray into the politics and beliefs about what it means to get that new diagnosis. It’s less painfully world-jolting the second time through, because you have a platform from which you can start to make sense of disability now, but the adjustment is not purely academic; the most precious thing in the world – your own child – is affected by how well you cope with and make sense of the diagnosis.

Through the years, I’ve found certain truths that I didn’t appreciate before my eldest son was diagnosed. Those truths have made it easier for me to get through the hard times, and have changed who I am (I’d venture to say “entirely for the better”, but I’m far more anxious and less self-assured than I was before all this happened, so there is definitely a trade-off in there). I’m going to be all arrogant and suggest to you that these revelations I’ve come to accept, really are true, regardless of where you live and who you are, and I’m going to be even more arrogant and say that I think some of these truths could even help other parents working their way through the shock of a new diagnosis. You’re welcome to disagree with what follows, and maybe you can further my own growth through your disagreements. Regardless, here are my pearls of wisdom, gleamed over the years both through personal experience and through learning from far greater minds than my own:

(1) Disability is ubiquitous, and inevitable. There is nothing perverse or unexpected about disability. It is there when you break your leg at 20, it’s there when your eyesight is failing at 35, it’s there when you manage to live long enough to reach old age. Sometimes it is relieved by surgery, or time, or modern medicine, and sometimes it’s not. Some are born with it, some don’t even know they have it, some come into it from a sudden event or so slowly that one day they realise it’s been there for years. It is part of the human condition, and how well we treat those who have disabilities is ultimately how well we treat ourselves since we will be them some day. A society that doesn’t appreciate and make allowances for those with disabilities – treating them as an abomination to be tucked away in institutions or as the butt of jokes – is an infantile and ignorant society that is limiting its own potential.

(2) Diagnoses are a human construct, and so apt to change with time and with whoever is doing the diagnosing. A diagnosis is a name we put on a condition or group of conditions, to help us make sense of the etiology and the reality of living with it and what to do about it. How those symptoms are grouped together, is a decision made by people – people who are experts in their field, but also people who are influenced by things like politics, history, government and private insurance funding categories, and their own pet projects. This doesn’t mean diagnoses can’t be “accurate” or helpful – if receiving the diagnosis makes sense of what is going on and helps you know what to do about it, then it’s serving its function well. My point is not to say diagnoses are all subjective, because they clearly aren’t, rather my point is not to get too fixated on the diagnosis itself – use the diagnostic label, let it guide you, it’s a shortcut to quicker and better understanding of what to do now that you have it. It is not a condemnation; it is a tool. Use it, don’t let it overwhelm you.

(3) Being disabled is not a punchline. There is something particularly odious about those who use words like “retarded” or references to “belonging on the short bus” as an insult. Doing so says that having different or special needs is something to be embarrassed and ashamed of, and hideously distorts and simplifies the huge complexity of disabilities and those with disabilities – even those society once thought of as simple and intellectually disabled in some irredeemable way, have surprised us with their variant brilliances and talents. History is full of people doing amazing feats, and bettering society, in the face of immense and disabling personal challenges. And more to the point, they are all still people, with their own emotions and the right be to be treated with respect. Using these people like punchlines, is not just cruel, it is ignorant. That’s not to say there is no place for humour within disability, of course there is. Some great comedians are themselves disabled and use their disability within their jokes, and sometimes if you can’t laugh at a situation then you just cry – we need humour in our lives. But the everyday hateful humour of calling people retarded and “special needs” as an insult, that’s not clever or helpful. I don’t believe in censorship to eradicate that sort of cruelty though, I believe in education and information to help people see what they’re doing and why it’s wrong – if you just tell them they “can’t say that”, you’ll only make them want to say it more and they won’t have learned a thing.

(4) Autism, and a huge number of similar learning disabilities, are used as political footballs – be careful you’re not letting your child’s challenges be used for someone else’s agenda. Whether it’s used in the debate about vaccinations, the arguments over the use of screen-time and technology, the issue of what age children should start school, or in the endless fights about parenting styles or discipline, people love to drag in the existence of autism (or other learning disabilities) as evidence for their pet cause. Remember what I said above – that diagnoses are a human construct and change over time – to help you avoid getting overly fixated on these sorts of things. Remember that the diagnosis is a tool, it’s there to help you to help your child, it is not an indictment on you or that child. Refuse to let other people turn the existence of your child into some horrible tragedy that could have been avoided if only everyone did what that other person said; enter the debates if you like, it’s good to set people right where you can, but don’t let those debates dominate or disturb you or your child. Your child is awesome, which brings us to …

(5) The gifts of disability. This is a hard one for many to accept, and is easily twisted and misunderstood and exaggerated to the point of ridiculousness. The “gifts of disability” is just the understanding that, often times, disability comes with its upsides. Whether those upsides are in savant skills, or amazing memories or unique understandings that reveal new knowledge we all benefit from, or astounding artistic talent, or the sweet compassion that is often found in those of certain disabilities, or a healthier and happier perspective about life from the disabled person or their loved ones. It can be something tiny, or something profound – it’s simply a matter of opening your eyes to the fact that disabilities are complex and people are complex and rarely is any experience entirely an unmitigated disaster. It’s trying to find and grow the good parts found within any challenge we face, it’s seeing the uniqueness and personal gifts of any individual and celebrating and encouraging those talents. This is not the same as thinking disability itself is good or should be pursued in its own right, rather it is taking a realistic (and hopeful and enlightened) approach to understanding what it means to live with disabilities, and appreciating that a person doesn’t stop being a person and merely becomes a condition at the point of diagnosis; we are all so much more than a label.

And, finally,

(6) How well you cope with your child’s diagnosis, depends on a huge range of factors, many of which are outside your control. How well you cope depends on your own previous experience with disability (especially the specific one that has been diagnosed), it depends on your family and friends support network, it depends on your financial position, on your family and cultural and work and societal expectations, on your personal age and stage of life, on your existing commitments, on governmental and charity supports where you live, on your mental and physical health at any point in time. Do not compare how well you are coping, with Jane down the street – her child might have far fewer challenges despite having the same diagnostic label, she might be independently wealthy and have only one child and have a live-in therapist. You, are not her. Her child, is not yours. Do not beat yourself up for taking a longer time to come to terms with a new diagnosis. Do not think you are a lesser human-being than that Facebook acquaintance autism mum who always seems so sure of herself with that perfect smile endlessly plastered on her face in every carefully crafted photo. It’s OK to struggle. It’s OK to be you. It’s OK to be honest, and it’s OK to ask for help when it all gets too much.

There you have it. Maybe I’ll look back at that list years from now and will think what an ignorant little fool I was, and that’s OK too. I’ve come a long way in what I think, and feel, and value, and believe, and I’m happy to accept I’ve still got a long way to go yet.

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6 Responses to Revelations

  1. Kiri says:

    Thank you for this. As usual, you have managed to articulate many of my own observations and feelings very well.

  2. Wow and thank you. I don’t have any clever remarks or any spark of an insight to add. Your list is good and your humble outlook greater still. Your humble acceptance that we are constantly growing in our understanding is a key to not only letting ourselves off the hook for not getting it right, right in the moment, but also allows us to better acknowledge our short comings without immediately jumping to mentally abusing ourselves. Again, thank you.

    • Well said! See, I have learned from you just now because you have so beautifully communicated a point that I hadn’t fully appreciated before; thank you – for taking the time to comment, and for sharing your own insight after all 🙂

  3. sewsable says:

    How you cope also depends on your personality as well as all the things you mentioned. We cope pretty well most of the time, but some challenges are harder to deal with than others. We’re now moving into unexplored territory now that youngest who has autism is also coming into puberty. No one seems to know how to deal with certain aspects of that, not least us! However we’re coping (what else do you do, after all?) and hoping we all come out the other end in one piece.

  4. nostromo says:

    Echoes many of my thoughts too. Something else that stood out for me after having a child with ID is how in society’s eyes a persons ‘value’, their worth if you like is linked to their intelligence. Its pervasive and so intrinsically accepted across all strata of society that it’s not even something that really gets thought about or discussed.

    You’ll see people diminished and slurred all the time for being ‘dumb’ or lacking intelligence all the time online and IRL. Its just standard and accepted that this is OK.

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