“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?
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.