Mothers’ Day: Neuro-elephants Part II

Happy Mothers’ Day.  I got up really early and put a smashing leg of lamb in the slow cooker so I can treat MY mummy later then came back to bed.  I am still here, festering, until, hmmm, probably about 3pm.  I am feeling deliciously sleepy and almost dribbly incoherent other than the words “more coffee”.  Slightly too hot, slightly too full of my (random) smoked salmon and Wotsits special breakfast – yup – it was lovely…

In the general spirit of taking the piss as it’s Mother’s Day, I have indulged myself with a right old rant, too long, veering all over the place, poorly constructed, unedited. Aaaahhh, now I feel better.  Read on at your peril.

I love being a Mummy.  I think I generally do OK.  I do fuck up (regularly) but I say sorry.

I don’t do the sentimental “my daughter is my bestest friend” (I don’t think she needs that kind of emotional pressure), but we are currently very, very much mutually-enjoyed-and-beloved partners-in-crime as we navigate our way through her as-yet-unknown waters of being a gorgeous, fierce 21st century gal, home educated, on the autism spectrum, and many other glorious things as yet undiscovered and undefined.

For many reasons – medically diagnosed and of personal philosophy – daughter and I are fairly inseparable.  Most people (including some of those who love me and know me) think this is only a problem in a one-dimensional way but, contrary to their belief, I do not simplistically long for the clichéd “me time”, as invented by our modern media, that someone is always telling me that I need.

I rarely tire of daughter’s company and I am absolutely loving our shared home education adventure.  When other mums say “gosh, I could never do that” I feel pretty sad for them and their kids.

Don’t get me wrong, I do benefit from the odd wild adventure on my own, or a dirty bed day like today to reinvigorate myself. Who doesn’t?

I love date night with hubby, or gossip night with my girlfriends, but no more than any stay-at-home and/or home educating Mum.  No more than any other woman.

I do feel tired at the end of the day but no more than anyone who works hard at a job they love.  Wanting to curl up in front of the telly with a cuppa and some chocolate doesn’t mean I deserve any extra “special needs” pity that you wouldn’t offer a typical Mum.

I do get incredibly distressed when my daughter is distressed but that is motherhood.

There have been a number of blog posts recently from autistic adults criticising the whole “autism mum” phenomenon.  Motherhood or autism motherhood / special needs motherhood generally… does it need a distinction?

Yes, sadly, I do think it does.

There are aspects of parenting an autistic child that perhaps a parent of a neurotypical child won’t experience but the vast majority of these things, and those that cause deep upset, are to do with lack of support, understanding and frankly lack of belief.

Do we need special acknowledgement?

Of course not.  Don’t pity us our children, we don’t.

Does what we have to do need special acknowledgement?

Yes.

I don’t need it acknowledged for me that I have to fight harder than other Mummies to get things for my daughter that ‘typicals’ take for granted.  I don’t need a pat on the head or some kind of parenting award.

We need it acknowledged by society that some kids (our kids) are still misunderstood, overlooked and ignored.  Us mums are fighting because they are not yet old enough to advocate for themselves.

My last post about Neuro-elephants in the NHS generated some interesting comments and emails.  The majority were unsurprising – more Mums battling, more kids losing precious years of learning and development without appropriate support in place – it’s so sad.

One comment stood out though, and was on my mind all day yesterday:

Quick comment from a trainee c*nt who suspects she’s somewhere on the AS scale herself as well as having another disability and a grown-up disabled child. Oh hang on, is autism a disability? Or does it depend on the situation? I’m honestly not sure.

From bitter experience, I can tell you that alienating the people you want or need help from isn’t a good move.

If your daughter is statemented and getting the help she needs, then great.

If not, the best way to get the help she needs is to get someone influential on side.

Good for you to keep pushing and advocating for your child.

The emotive language around anything that makes people stand out is medical model stuff and should be challenged. But equally I personally don’t think it’s helpful to become too politically correct and pretend your child isn’t different. Having experienced this from both perspectives, I think a healthy balance needs to be struck.

I admit my reply was a little knee-jerk and hurried (family brunch going cold on the table):

Hi there, wow – I think I need to review my writing ability!!

I don’t think all psychiatrists are C-words, it was supposed to be ironic, in response to her [the psychiatrist’s] statement that autistic people lack certain skills that are required for “human interaction”. Whatever your neurology or profession, I don’t think there’s any way that statement can be condoned or accepted or understood whatever the context.

I appreciate your view on alienating people. I was successful professionally as a project manager, change manager, analyst, I spent many years making things happen when people and groups of people were apprehensive and often fiercely against changes to the status quo, etc etc. I am more than happy to ingratiate myself with people to get what I want.

This is distinct from that. At some point someone needs to put their head above the parapet and say “this is wrong”. Taking the “I’m alright Jack” approach and looking after your own needs first, I get, but people need to work together or we just keep passing on the battle to the next lot of parents…

The best way to get my daughter the help she needed was taking the decision to home educate her so that something as important as her intellectual development (and sense of self-worth) wasn’t impeded by having to conform in an environment that was hostile to her needs (sensory and social and more). I was not prepared to take any further risk with her self-esteem or mental wellbeing fighting a prolonged battle with her school. I know I’m extremely lucky to be able to do that…

I know my daughter is different – she told me so herself – that’s not the problem. I won’t accept that she is inherently “difficult” though, NOR SHOULD SHE. Nor do I class her as less of a human than myself, NOR SHOULD ANYONE. Nor will I ever find it acceptable that a professional first looks to behavioural issues and parenting failure than take the time to listen and conduct a thorough and unbiased assessment rather than snap-judge a situation…

Albeit an altruistic and fanciful statement, not based in our current world reality, it shouldn’t matter whether autism is a disability or not. I’m happy to treat people as they wish to be treated and genuinely try to respond to an individual as such. We ALL need help and support to manage ourselves and our lives in different ways in differing amounts at different times, we all have different aspirations.

Anything else is prejudice and ableism.

Today, less harried, I think I over-reacted a bit.  Or not.  Argh.  More insomnia ahead.

Actually, I’m not entirely sure what the commenter meant to share but I feel that she is more content than me to accept the status quo.  Fair enough, but not right for me.

It’s definitely a matter of personal choice as to whether you accept an ‘inadequate’ status quo, or decide you want to try and change it.  Not everyone is interested in making a stand, I get that.  I have disabled friends who, whilst I’m sure they have met much prejudice and inadequate support, are living their lives, generally having a good time wherever and whenever possible and to my knowledge aren’t that bothered about rights campaigning.

If you decide you want to change things, if you criticise the system, could you risk losing the benefits you do get from it?  It’s wrong but maybe true – hard enough when you are making that decision for yourself, doubly hard as a parent when you are making that decision for someone else…

But ultimately a child’s future cannot be solely based on their parents’ ability to get someone influential on side, that is somewhat elitist to say the least, another comment said it all:

So duly armed with a genuinely expert Dr with years of experience we took on the Senco at school. That battle was exhausting, she was obstructive and difficult. All the support I accessed came because I am a primary teacher in the same authority. Because I already knew most of the MALT team I bypassed the school and got things moving. What it would have been like for us if I hadn’t been inside the system already scares me. I got my boy accepted for who he is, supported with the things he needs ( mostly understanding of sensory adjustments and and transition support to secondary).

Some years later we watched a friend go into battle for her son, with the same Senco. Because she did not have insider knowledge it was appalling, even with our help she struggled as she could not speak to the people she needed as she was outside the system.

A significant percentage of home educated families that we meet in person or online have a child on the spectrum who was failing at (or should I say being failed by) their school.

I am literally writing this as BBC News gives an update on the autistic lad Matthew Garnett whose parents resorted to an online petition to get him moved from a psychiatric intensive care unit (designed for short stay acute mental health situations) to more suitable (autism specialist) provision.

A child’s future also cannot be based on parents petitioning and achieving national media coverage to get acceptable support.

Awful.

I struggle with all these professionals’ refusal to take the firsthand reports of a mother at face value.  I cannot get my head around their thought process.

Maybe I am being naive and overly optimistic about human nature: has it always been the case that a percentage of mothers go to the doctors pronouncing their child as somehow ‘defective’ then they are proven not to be?

Are doctors jaded by an unreported steady flow of mums who are looking for ‘excuses’/reasons for their inability to effectively manage their progeny?  Are doctors continually facing a tidal wave of some mild version of Munchausen by Proxy?

Is this all attention seeking and (yet another) symptom of our broken modern society that we keep turning up and insisting our children get diagnosed with things that, what?  Take the blame off us?

Why the default scepticism?

I don’t know any mother who wants to make their child into something that he/she is not other than in an, erm, “ambitious” way through tutoring and privately educating and attending the ‘right’ clubs etc.

I don’t know any mothers who actively want their child to have autism.  I appreciate that statement sounds like prize ableism, it is.  It’s the reality of most parents prior to the diagnosis of their child, it’s simple ignorance.

The most common misunderstanding that I hear all the time about autism is that it’s just a “label” and they simply don’t want their child “labelled”.  No one wishes for their child to face unnecessary struggles or distress, no one aspires for their child to experience prejudice, bullying, dismissive judgement, inequality in education, the workplace and more (and many parents genuinely believe avoiding the label avoids this reality)…

So in the face of this (ill-informed) majority view, why then do doctors still doubt the women who DO come to them seeking help and diagnosis?

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For me, I don’t want my daughter cured, I want her included.  I don’t want to have to justify that, I absolutely expect that.  So I will fight until it is something that happens as the norm; sitting back and lamenting my daughter’s harder journey in the world (not due to autism but due to society’s ignorance and inability to be inclusive) is not acceptable to me.

I am teaching her to fight too as I suspect (now watching that heinous Trump man resurrect some kind of awful pseudo-acceptability of racism and other bigotries on the news) that the job will not be conclusively done by the time she reaches 18.  In fact, I worry that the world could be a much worse place.

If she doesn’t want to campaign for autistic (or other) rights, that’s cool with me.  I aspire for her to live her life in whichever way she chooses.

I just don’t want her to ever think she can’t or shouldn’t object to the status quo, that she can’t or shouldn’t advocate for herself, that she has to get someone influential (male? able? neurotypical?) on side to advocate for her.

I believe it is my job as a mother to equip my child with all of the skills she needs to achieve her potential, those skills do not include accepting discrimination with good humour or accepting inequality with some kind of mindful resignation.

Most importantly, I know that I would be teaching her exactly the same things if she was not autistic, if she was neurotypically white middle class lucky like her local peers.

So HAPPY MOTHER’S DAY to all those other Mums out there, like me, who are simply doing our jobs, trying our best to nurture the articulate, intelligent, thoughtful and fair adults of the future who believe in equality and justice and kindness and collaboration and inclusiveness; who care about the climate, the welfare state, social mobility, global and corporate responsibility, who are not ashamed to be compassionate, who challenge the status quo.

Rollz over and snorz.

6 thoughts on “Mothers’ Day: Neuro-elephants Part II

  1. I have only just started ready your blog and as a worker in a residential special needs school who works amongst teenagers with all sorts of difficulties including being on the autistic spectrum I applud you and what you have said in the last couple of blogs and I agree with you .

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