“Autism: Where the “randomness of life” collides and clashes with an individual’s need for the sameness”
― Eileen Miller, The Girl Who Spoke with Pictures: Autism Through Art
I pride myself in always speaking bluntly, even if I’ve been rather lax in posting recently. I’ll get to the reasons for that in a moment. But first and foremost, there’s something I need to get off my chest. Some of you aren’t going to like it. Some of you may choose to stop following my blog in outrage. But maybe, just maybe, some of you will find a little comfort in my horrific admission.
There are days when I don’t like my son.
I know, I know. Society’s view is so rose-tinted when it comes to us martyrs, the selfless parents or caregivers who can always place first the often difficult needs of these incredible children and grant them at least temporary respite in a world that is often a din and mess of confusion.
Well, sorry society. But some days, like today, and just like every other family in the world… some days our kids can just be little buggers too. For reasons so simple as using the wrong coloured box of quick macaroni for dinner, or not knowing how to get them past a particular level on Mario. Some days, like today, you get kicked in the shins just because you’re nearby when they get mad about something, or you find yourself standing in the doorway staring blankly on as they scream incoherent babble, which only escalates in volume and annoyance as you fail to understand said babble.
And I, for one, am far from the perfect parent. I try, every day. But occasionally I bet even Mother Theresa would lock herself in the bathroom for 5 minutes and cuss her head off into a towel, or dab under her eyes with a scrunched up tissue to keep the tears from streaking through her make-up. She probably didn’t wear make-up but you get the drift. We’re only human. We get exhausted, overwhelmed. We feel unappreciated by the very people we’re turning ourselves inside-out for. We feel resentful of friends who can always offer sympathy but not empathy… before they head out to go grocery shopping or go to the movies without having to plan every last minute detail of the trip, the snacks, the seats, any possible way to prolong the calm before the always inevitable storm.
It’s been a tough week, what can I say.
After several months of meetings and appointments (and, I must say, outstanding work on the part of his new speech therapist), there’s now talk of D beginning at a ‘support unit’ for one afternoon a week. And I’ll admit, my hackles are up. And that, more than anything, is probably making him play up a little more than usual. I’m not convinced. I’m not confident. After what we’ve been through, no, I’m not okay with packing off my only child in a taxi with a chaperone to a strange place 20 miles away from his home. I know him better than anyone and if they mess this up the first time, they just won’t get another chance. From him, that is.
That damned balance between ‘overprotective mother’ and ‘overeager education monkeys’.
I don’t like that I can’t be there. Can’t take him in myself. Can’t eat lunch with him or show him where the bathroom is. I really don’t like that in her first ever meeting with him, his so-called expert teacher-to-be committed the ultimate sin (in our house) of trying to physically block him as he tried to come to me for comfort. How am I supposed to tell D that this situation is acceptable, while I’m restraining the urge to smack her round the head for being so ridiculously presumptuous and unwittingly intimidating?
…my post is wandering off-topic somewhat. But you’ll have to forgive me as I think out loud and type.
I love my child. And I’m not so egotistical to claim that my home-schooling is still sufficient, considering how bright he is. I want him to have this chance. But I can also honestly say I’m not comfortable with handing over control in one fell swoop.
I’m not the perfect parent. But I’m the only one he’s got. And nobody’s listening to me. Including D himself, lately. Bizarrely, if he gets frustrated with something then refuses to let me help him with it, I feel provoked. That’s my job.
…oh. I just worked it out. I think. Is the root of all this, the cause of all the tears and tantrums (on both sides), of the sleepless nights and endless worry.. because I’m being made redundant?
So, it’s been mentioned in one of our many recent appointments, that seeing as D enjoys and works well with computers, we might look into getting him an iPad. It’s incredible, the sort of specialist apps that are available for children on the spectrum – I’ve been Googling a lot this morning. But to be honest, I simply can’t afford to get one for him. I even looked into the few mobile phone contracts that are offering the iPad as a ‘free’ gift. They’re still pretty expensive, and besides, I’m stuck with my (rubbish) provider until May anyway.
After a lot of searching through forums, I stumbled upon a link for Smile for Life; a children’s charity in the UK.
‘Based in the North East, Smile For Life primarily helps children from across the North East of England and Scottish Borders. Our vision is to be approachable and accessible to anyone, from any walk of life where our support will make a real difference to a childs life.’
I usually don’t expect charity of any sort, I hasten to add. But this is something I really think would help D, especially as we move forward with new methods of communication. And I thought it was worth mentioning, for anyone else who might find the financial climate a bit chilly.
Even without this sort of help, though, there are a number of handy online resources. I rely upon several, for home schooling. Here’s a couple that have proven popular!
For those of you familiar with my old posts, you’ll remember the codenames I’ve used from the beginning. That was mostly down to starting my blog in the midst of a vicious divorce and custody battle (if I might laughingly use the phrase).
Well, I’m divorced now. And while I’ll still decline to publish the identity of my ex husband and his family – really just so they don’t take me to court for that, next – I’ve decided to do away with the ‘Cake’ and ‘Twig’ monikers.
So hello, reader old and/or new. I’m Amy. Nice to meet you. My son is D, and he’s recently been diagnosed (at almost seven), as having an ASD and possible ADHD, too.
Allow me, first, a smug little chuckle.
Then hang around while I cry uncontrollably for an hour.
I’d recommend stepping back when the rage kicks in.
Apparently I’m not so different from my son, when it comes to coping (or not) with complex emotions. Do you remember my post from way back in July, regarding the doctor who refused to refer us to a specialist group, for want of an ‘official diagnosis’? Well, as it turns out, that doctor was in fact the Head of Paediatrics at our local hospital.
It also turns out he had his head up his arse.
I can only assume it was down to having a strip torn off him for releasing information about Twig to his father, over the phone, while we were in the middle of a lengthy and bitter court battle. Explain to me how exactly one can prove identity over the telephone? Besides which, this bloke had never even met us at this point, so he was completely unqualified to be saying anything!
And yes, it was brought up in court. A claim that I was ‘making up’ my son’s condition in order to be difficult and delay proceedings. Yeah, right. I’d been trying to get rid of these people for over three years! Nice angle, though; using Twig’s condition as a method of proving how unfit I was to be his primary caregiver.
There’s no phrase more fitting for this recollection than, “Bitch, please.”
Anyway. As I was saying the doctor who barely knew us and who got a stern waggy finger from me, oddly enough, didn’t feel like giving us any help. At all. I wasn’t surprised, and I’ve really passed the stage of being disappointed. Nearly seven years, and the only support we’ve had has been either hopelessly flawed or just too expensive for me to keep up for any length of time.
A few months ago, Twig’s ‘proper’ doctor, who I adore, finally returned from maternity leave. As someone who’s actually familiar with us, and with some measure of how well he’s developing, or isn’t.. she agreed to refer him for assessment at a Specialist Unit. Strange mixture of reactions, at that point, for me…
Sorry, how weird, I had to pause to read the mail, which included a summary letter from her, from our last appointment. Ha. And my mother in the other window asking ‘do you still do that blog thingy?’
Go away, universe!
So. Long story short, Twig was observed and assessed by an entire team of people who specialised in the spectrum. Not random Joes off the street with their stupid standardised tests and complete lack of adaptability in communication. Nope, proper grown up people for us this time. With one of those fancy two-way mirrors. He had a great time. A room of adults who had a bunch of new toys and actually wanted him to play? Woooo!
Following this, and their own brief meeting, I was called in right away to hear the verdict. I swear, I was more scared over this than any of the times I was fighting in court. A divorce is far less a risk for turning one’s life upside down, in my opinion, than an unwanted sentence on your child’s future. To start with, it sounded unnervingly similar to the ‘teacher’ voice in Snoopy. Then I concentrated on the words.
“..come to the conclusion he is, without a doubt, on the spectrum.”
I hate when people look at you expectantly but that pesky lack of being able to breathe or swallow or think hinders any sensible response.
Then they’re throwing possibilities and suggestions at me. Support Unit. Music Therapy. speech and Language. And the most incredible of all. ‘Normal’ school.
I’d sort of given up, I fully admit, on the idea of my little dude ever attending ‘proper’ school. To think that these people might actually be able to open up his world that much.. I was overwhelmed with gratitude and, honestly, a new sense of hope for the future.
But then the rage began to dawn, on the drive home. Once I’d stopped happy-weeping quietly and Twig was contentedly watching his Backyardigans DVD.
A year and a half. A year and a half since that stupid man refused to help us, out of either sheer spite or laughable incompetence. A year and a half of possible progress for my baby, wasted.
Don’t get me wrong. I always knew I was right. As a parent, you know best if something’s not quite ‘right’. pardon the expression. But when someone can calmly say ‘no’, rather than just lift a pen and sign a name, and that has the knock-on effect of possibly hindering your child’s chances of ever coping in the real world…
Hell hath no fury.
Incompetents aside, it’s a scary/exciting/horrible/amazing time for us. I’m not a clingy mother, and I know, I know, that the chance of going out to school is going to help him in the long run. It’s just, right now, while the ball gathers momentum.. I can’t decide how to feel. As usual, it all depends on how he likes the idea.
What matters is, we got there. Eventually. Despite a few head paediatrician shaped bumps in the road.
After a very long absence, I’ll be returning to blogging this week. There have been some new developments to catch up on – some good, some not so much – and soooo many articles I’d like to share with anyone going through a similar experience as myself.
Finally, a step in the right direction. I’m sure I’m not alone in being frustrated regularly by the lack of support for the parents of children with Autism or an ASD, financial and otherwise. Hopefully this is the first of many institutions who will accept responsibility and set the standard for others to follow.
US health insurance provider Blue Shield will now provide parents with funding for applied behaviour analysis or behavioural intervention therapies. Read more here. With arguments that these services are not a therapy or a treatment, insurers have settled their disputes according to California Law.
Now, where I live we don’t actually pay for medical treatment, per se. But the struggle to get it at all remains the same. Professionals who are often to swift in sticking an imaginary label on your child’s forehead, are less forthcoming when it comes to ‘what to do next’. In personal experience, one paediatrician dealing with Twig (briefly) refused to refer us to an Autism Support Group, because he wasn’t diagnosed officially. When I asked him to provide a diagnosis, then, he declined, saying they weren’t able to. So, I pointed out, not particularly politely, because they were failing to pinpoint an exact term to explain my child, I had to just accept the fact that I was to be isolated from the few support groups existing in the area. As if the parent’s job wasn’t hard enough!
Yeah, that guy didn’t last long.
Every ‘service’ we’ve tried, I have had to hunt down on my own and fight to get into. And, in most cases, fund by myself. The group speech therapy, where the ‘leaders’ gave up after five minutes and left Twig sobbing alone in the corner while they dealt with the easier, ‘normal’ children. The individual language therapy, where the so called expert refused to actually listen to what I was describing to her, then wondered why emptying a box of toys onto the floor and immediately asking Twig to leave them and sit at the table would cause him distress. Moron.
Not everything has been a disaster, though. Music Therapy, after perservering for a few sessions, was a huge hit and seemed to really help Twig when it came to expressing himself via means other than speech, which is his real weakness. It was, however, too expensive for us to continue. More recently I’ve discovered that horseback riding seems to relax him and help him to focus, so we try to do that regularly.
Anyway, back to the point. Support. It’s sparse, often expensive and usually difficult to find. In a society that provides help for everything else, particularly self-inflicted problems such as smoking or excessive drinking or even trouble sleeping, how is it that Autism and ASDs have been overlooked for so long and, unfortunately, continue to be in many parts of the world?
I’m optimistic that this is a major move forward in helping society in coming to terms with the condition that dictates every aspect of life for us. It’s about time.
A well-written and insightful article in the Guardian yesterday, by Dea Birkett, got me to thinking. You can read it here.
Officially, Twig’s condition remains undiagnosed. Maybe because he has a mixture of traits and we’re dealing with a broad and vague scope, in Autism Spectrum Disorder. Or maybe because the professionals who have dealt with him are just unwilling to label his condition – a rarity in today’s society, I’m sure you agree.
Though I never have, as yet, had to deal with the cataclysmic ‘your child has…’ moment in the doctor’s office, having instead dealt with a very long-drawn out and inconclusive version over the past 4 years or so, I still find that my world view has shifted when it comes to thinking of the future.
There are moments we all absently consider or daydream about, with regards to our little ones. First day at school. First date. First job. First home (and our chance at around the eighteen year mark to take a holiday where we only pack for ourselves, rather than stuff a suitcase with toys, jigsaws and other distractions, while our own wardrobe is downsized into a tote).
When you come to the realisation, no matter the time-scale, that your child is ‘different’, I think it’s these sort of things that immediately leap to mind. Some skew. Some wither. Some, frankly, just have to be let go. It’s most certainly a grieving process, for many of the hopes and dreams you had… and they weren’t even for yourself.
And what of yourself? More than likely we all already had an idyllic view of how life was going to be as a parent; joining in on all these important landmarks, taking photos, recording videos, scrapbooking every fragment of the life you’ve helped to build. What are you supposed to do now? Not only is your child’s life suddenly looking very different, but your own role is now far from defined.
Will you become a full-time carer? What will happen if, by the time they reach their late-teens or adulthood, they’re not capable of looking after themselves? And, as usual I’m going to come out and say one of the things I hope many think and I have to be brave enough to verbalise… will they ever find love?
I’m fortunate with Twig, in many ways. Whatever it is that makes him different, I don’t consider it a flaw. Who’s to say his way is wrong? He doesn’t remember yesterday, he doesn’t worry about tomorrow. Every day is an adventure and a happier, more delightful child I have yet to meet. Yes, I’m biased. But strangers have commented on his beautiful smile and that belly laugh. He’s photogenic beyond belief. He likes nothing better than to make me smile and he does so regularly.
I know he’s amazing. But the rest of the world? Suddenly their point of view becomes, whether we like it or not, far more important than it might have been otherwise.
A meltdown in the middle of the supermarket, for example. Now, we’ve all seen it. The harassed mother, trying and failing to pacify a tantrum-thrower in the middle of aisle three, by the crisps. The standard conclusion? ‘Spoiled brat wants crisps.’ With a child like Twig? It might, in fact, be a simple case of the crisps having been laid out differently than the last time we visited.
Joe Public, of course, doesn’t bother to wonder. Most – and I can say it because I used to be one of them – will continue on their way, perhaps with a tut or a roll of eyes, certainly with that infamous smug glow that comes with the thought ‘I’ll be a better parent than that.’
I’ve seriously considered printing Twig a t-shirt that says ‘I’m not badly behaved; I have an ASD.’ Then again, I’ve also considered bashing people with a convenient baguette, just for daring to look at him strangely.
We do the best we can. We adjust our lives to make theirs better. If society wants to continue judging ‘different’ people negatively, let them. I’ll continue bracketing them as short-sighted and stereotyped.
I’ve tackled the issue of ‘mom guilt’, as Dr Leah calls it, before. But it’s a recurring one, for me at least.
An article tweeted by Carers UK, even though it was to do with an elderly couple, offered me some comfort yesterday. You can read it here. I suppose, as well as the mom guilt, I have what I’m going to call ‘carer guilt’. And ‘teacher guilt’. Even ‘housekeeper guilt’. In fact, especially housekeeper guilt. It looks like I live in a small local branch of Toys R Us circa 1987.
And that’s before Twig does his infamous impression of the Andrex puppy with my bulk-bought loo roll.
Anyway. Every victory in our house, no matter how small, is a major thing. In the last few weeks (I can use it as a timely excuse for the lack of blogging) we’ve partially cracked potty-training (thanks be to jeebus) and started reading. Alright, that might not seem groundbreaking to some of you. But throw in the mix that my little genius has an ASD and I’m homeschooling him singlehandedly… and that I have cream carpets. What the hell was I thinking?
So yes, the good times are good. But the bad times still drive me up the wall. Like when the mood is set for the day by a hissyfit because a cookie is broken in half. Aren’t they meant to pick up and reflect our moods, rather than the other way around?
As the writer of the aforementioned article says, “I’m not the most patient person in the world.” I’m really not. Sure, it’s nice to take the credit for five minutes when Twig accomplishes something that is, by his standards, amazing. It’s even nicer to realise that hey, I actually did teach him this all by myself! I’m not a failure as a mother/teacher/bathroom assistant.
Just as a housekeeper.
Sometimes, too, it’s gratifying when new acquaintances, or even old, marvel at just how many professions you cram into 24 hours and you brush it aside with a serene, saintly smile and murmur something about how it’s all worth it. Then you go home and find out Picasso’s latest masterpiece is a mural all over your kitchen cabinets.
Baby steps. Baby steps. For the parents, that is. The kids have it all figured out. A conspiracy if you ask me.
I got married when I was 19. Of course, by then, you know everything, don’t you? Fantastic time of life. I moved to the States, lived with my then boyfriend, Shovl, for 3 months. Not in the most glamorous of places, it has to be said. First in his parents basement. Then, eventually, a tiny apartment in Arlington. I didn’t dare go out after 5pm, seeing a I could hear gunshots a block or so away.
Oh. And we didn’t really have a bed. Because Shovel decided to leave a bunch of our stuff in the loading bay while he went for a beer with some new neighbours. And was consequently surprised to find it gone when he returned 2 hours later. Among the missing items? The antique bedframe and box, and my entire collection of World of Darkness books. (Any geeks out there will understand my grief).
Anyway. The time came when my guest visa was about to run out. Our solution? Hey, let’s just get married. Then Cake can stay. In her oh-so-glamorous lifestyle to which she has become accustomed. Ah, that old 20/20 hindsight. Don’t you hate that?
We were married in a courthouse. I wore combats and a tanktop. The ‘priest’ doubled as our photographer, with an instant throwaway camera. “Do you, Cake.. *click*.. take Shovel.. *click*.. to be your lawfully wedded husband? …*click*
In the end, it turns out marrying a US citizen does not guarantee you can remain. You still need a visa. So I had to leave anyway. Oh, and he decided it would be better not to tell his family we were now a married couple. Sure, sure, fine. All made perfect sense at the time. I think.
So, we moved back to Europe. It was a nice opportunity to visit my family and friends. My dad even gave Shovel a job in his company, so we wouldn’t be broke. It was enough to afford a lovely little apartment in town, which I coveted and subsequently adored. Beautiful big kitchen with an AGA stove. Not that I cooked, at the time. Gorgeous living room with a real fireplace. Though Shovel gave our tv to his drug dealer. Go figure. Bathroom to die for, though. Black and white tiled floor, big tub, purple wallpaper. A little haven for make-up application.
A few months after that, I fell pregnant. Which posed a difficult question. How exactly do we go about explaining to his parents that we’re already married and now expecting a baby? His solution, apparently, was just to let them believe it was a shotgun wedding. And so began their long-lived view of me as a gold-digging waste of space, I guess. Just in time, since 3 months later we went for a visit again.
I say a visit. Really, it was a free babysitting service for his three sisters. I got to stay in the cabin we were lodging in on a military base (yes, there’s good reason I use codenames) and watch.. let me count.. seven kids. While they all went off on nice day trips. Position established. Bottom rung of the ladder. And believe me when I say, jet lag added to morning sickness did not a good-tempered Cake make.
It was just little things. Subtle ways to remind me I really didn’t matter, pregnant or not. Maybe it’s petty, but it drove me crazy. Like, I don’t like burgers. I really don’t. Yes, I know I’m a freak. But Miss Ellie insisted on going to Burger King every day for lunch. The woman doesn’t cook, I swear. It’s always fast food or takeouts. Anyway, trying not to be a pita, I just sucked it up and asked for a totally plain burger. No cheese, no salad, no nothing. Burger. Bun. That’s it.
So she returns, triumphant, with her banquet of greasy disgustingness for her family to feast upon. And, naievely trusting, I accepted what she handed me and took a healthy bite. I wavered between starving and puking, at the time. It was a starving stage.
I don’t know what else. I was too busy covering my mouth with my hand and bolting for the bathroom to really dissect it.
After that, I just said a polite ‘no, thank you’ when she offered to pick me up something for lunch.