I feel like I’m going to explode.
I feel like I might never stop crying or screaming or wanting to chase down the next person who gives me “that look” or makes “that comment” – chase them down like the deranged lunatic they’ve driven me to become.
Tonight I hit a wall and found that I could no longer hold back the emotions that I’ve fought against. Tonight I’ll share my truth.
I am sick of society and it’s ignorance, sick of people giving me parenting advice; telling me to punish, telling me to remove all privileges because that will surely fix my son. Saying I shouldn’t take my son out, or give him birthday presents, or let him attend his clubs until he learns to behave.
When he has coprolalia or is overwhelmed with the loss of control over his own body and the assaults that it’s under I should wash his mouth with soap. I should slap his face. I should strike him back.
Or, they tell me, put him in care.
Put him in care.
What they never seem to understand is that I could keep him prisoner for the next 12 months in an empty room and he still wouldn’t “behave”.
One friend explained to me that her own son is autistic and he doesn’t behave like mine. That being autistic means that her son is mentally disabled and has tics, but even he understands right from wrong and wouldn’t go on like mine does.
I’ve had it with those who feel it’s somehow their right to tell other people, people they’ve only just met at a social gathering no less, how much of a naughty child, my son is–to regale them with stories of what terrible things my son has done, using our family’s pain as entertainment.
I have no more patience for those individuals who deliberately and publicly humiliate me, who use my son as the metric to measure their child or grandchild against and brag about how much more wonderful they are…how much more polite, how much more proper, how they have higher intelligence, are thinner, taller, faster, better looking or whatever other bloody fantastic qualities they have-all crowed about within earshot of my son.
I’m over the neighbours who lower their eyes and whisper their gossip to each other when I pass them. I want to scream that I am not stupid nor am I deaf.
I’m over fellow passengers at the bus station who give my son, who’s already overwhelmed from the waiting and the noise and the crowds, dirty looks or say mean things or laugh at him right in front of me.
I’m over the SENCO who doesn’t appear to care at all. Who denies my son accommodations and refuses to help at all. Who, when I beg for assistance, does nothing more than offer me the telephone number for the youth disorder team, then quickly ushers me out the room, hopefully before the other parents realise I’m in tears and before I have a chance to make the school look bad. It isn’t me who makes the school look bad. I’m not even afforded enough respect to have a private room for SEN discussions, meant–of course–to help with my “parenting issues”.
I am over the fact that there’s no IEP, no school action and no hope in hell of an EHCP.
My son will sit his end of year exams, after half term, for the second year in a row in the main hall. During last year’s exam, he was told to stop shaking his head by the moderator – whom the school hadn’t bothered to inform that my son has Tourette Syndrome.
I’m over my child coming home in tears after rough days. Like the day his teacher told him in front of the entire class, “you are possibly the most annoying child, I have ever met.” Or how, on the hottest day of the year, he came home dehydrated because a teacher threw his water bottle in the bin because he dropped it during a tic and it accidentally hit her foot. He was too afraid to ask for a drink after that, all too aware he’d be labeled for being “disrespectful”.
I’m over my son getting exactly zero homework accommodations. I’m over him getting punishments for getting less than 50% on a homework assignment after spending his school day holding in tics, causing him to lose concentration, yet being shouted at because ‘he obviously wasn’t listening”.
I’m over my son getting written punishments for “not paying attention”. For “getting distracted”.
I’m over my son getting written punishments because he left the homework sheet on the classroom table when the school knows that, like most, he has Executive Dysfunction and ADHD as part of his Tourette Syndrome.
I’m over my son getting written punishments because of unfinished written work when the school is well aware that he has Dysgraphia as part of his Tourette Syndrome. In one week alone, he received 24 pages of written punishments because he was unable to complete work and the teacher’s response was to double up the assignments. When he reached a breaking point they offered to “help” him by doubling the assignments again to four a night and added in lunch time, break time and an hour after school detentions for an entire week until he completed them all.
I’m over the miscommunications and bureaucratic sludge that my son’s health and needs get caught in.
Like the day CAMHS – an organization I’ve never been able to count on – arranged a secret observation day and for some unknown reason the school informed me that my son had an “appointment” without telling me that it was a secret observation. Thinking they were sending someone in to work with him and wanting to ensure he didn’t get stressed by having that spring on him I told about it. CAMHS, furious at the school, called the observation off…and never had the resources to arrange another.
Or like the meeting with SENCO and CAMHS that took ages to arrange which was cancelled by school at the last minute for reasons still not given. After repeated attempts to reschedule, CAMHS has given up. In the hopes to still try to reach out to the school, CAMHS offered to deliver a presentation and educate the students and teachers.
The school’s response? “It wasn’t appropriate for their school” and that I should “think of how humiliating it would be to have all the kids turn and stare and point at my son”.
I am completely over CAMHS who hasn’t even bothered to ring, let alone arrange a review, since Christmas. Almost six full months and not one call. In January he’d had a strange incident that I’d been concerned about and yet still no return call.
And now, tonight, I’ve spent two hours sobbing uncontrollably after what should have been a nice trip to the cinema. It was nice until the trip home and the stares of judgment from others along the way just broke me.
Humiliated and ashamed, I found myself yelling at my kids as we walked home from the bus. I was destroyed to hear my son sobbing. Crying about how everyone in his life has blamed him, rejected him.
I can’t fix it for him.
I’ve never been able to make it better.
My son, through his tears, told me I was the worst mother in the world, that everything is my fault and what sickens me the most is that in my heart I feel like he’s right.
Nothing I do seems to work. Nothing I say makes a difference to others who still act as our judge, jury and executioner. Surely if I were any good at parenting it wouldn’t be my kids, I lost my temper with.
I find myself hating the world right now, but I hate myself more for being too weak to make my son’s life better.
I need to talk, to scream, to shout…to talk to people who understand what this is like. Not the ones who say “I hope you’re not just going to go on about Tourette all day. You know it annoys everyone”.
Even life long friends aren’t willing or able to hear and understand what it’s like to feel adrift without any hope of a rescue. No hope. Not from family, not from the school, not from CAMHS.
It’s almost 2 a.m. and I’ve stopped crying.
I’ll get some rest. Paste a smile on my face. And know that tomorrow I’ll do this all over again and maybe, just maybe, the world will be a little more accepting.