Today's patron has asked to be identified only as PUYBGP, which stands for the title of her post. I won't say anything about her except that she does not live in America, which may be kind of important to the understanding of parts of this.
Pulling up Your Big Girl Panties.
That's what all us Autie Moms have to do daily. Multiple times a day. Because sometimes? Life really sucks. Sure, there can be bright and sparkly moments filled with progress, reduced noise, chaos and insanity, but let's face it, on most days I'm ready for a stiff drink by 730am. (I usually wake up at 4 because of my baby girl. She co sleeps with us, so it's not a big deal to settle her back to sleep, but once that's done, I lie in bed for while trying to ignore the fact I need to pee. I usually give up and brave the cold to come downstairs after a while so I can have some quiet time before the crazy begins).
Today was no different. I was downstairs by 430, checked my emails and got on with the legal challenges I'm facing within my local and national government, the ridiculous fucking lack of policy they have towards people on the Spectrum and the pitiful care these sorry assed motherfuckers offer our children. Not only that, but I have to deal with the fact that my husband, oh light of my life, apple of my eye, will come down soon with the children and possibly bitch at me for spending too much time on the computer. For being "obsessive" about this whole legal challenge.
For not pulling my weight.
Honestly? I wasn't going to make a big thing about the services at first, I just wanted the services my son was entitled to given back, that was all. But through fighting for that I have found out things that would and do shock anyone I tell. Like for example, (just one tiny example from the 17 page letter I wrote for my MP to forward onto all relevant Ministers), that when the Local Authority little bitches came to OUR house to "help" OUR son, they neglected to tell us that by accepting their services, we would in fact lose out on QUALIFIED SLT services. Not only that, but the Early Autism Services' therapists in our area have NO teaching or SLT qualifications/training or background at all. They are not trained in Makaton (beginner, special needs sign language which my son started learning from when he was 9 months old because I'm a (goddamned) hippy and just wanted to do baby signing with him). The only thing those cock-sucking, good-for-nothing, motherfucking, pieces of shit INEPT PARASITES are trained in is PECS the little fucking sons of bitches that they are!!
PECS? But surely that's helpful, you say... Why, I'm certain you'd be right if only these "therapists" were trained past a BASIC level.
They're not even CERTIFIED (meaning able to teach school staff and parents). They actually convinced my husband and I to CHANGE my son's communication system, at a time when he already had emerging language, to PECS. Not because it was the right thing to do for my son, but because that's all the ignorant, neglectful, downright fucking CRIMINAL little bitches were capable of. Wasting mine and my son's time. Not teaching him a goddamn thing, no. Not that.
KARMA BABY. That's all I have to say. (And yes, I did call a Special Educational Needs solicitor about this Apparently NONE of this is illegal because informed consent only applies to medicine and I was dealing with the EDUCATION department. Right, because in special needs children the two are REAL easy to separate.)
But let's forget my stories, those from my local Autie Mamas and the Autie Mamas all across my current country of residence (random birthplace, actually, though I have no family ties here whatsoever other than the one I married into). Let's forget that legal fight or the ridiculous Statement of Special Educational Needs (SSEN) they've sent me which I have to challenge due to lack of hours specified, lack of one-to-one care and lack of any kind of behavioural (ABA) provision. (And I COULD FUCKING CARE LESS ABOUT WHATEVER MOTHERFUCKING "EVIDENCE" THEY MAY OR MAY NOT HAVE, it has helped MY son more in two months than they did in EIGHTEEN months.
Eighteen months of his life, possibility for treatment and advancement wasted.
How could I not fight it? They're not just doing it to me, to MY son, they're doing it to every! single! autism! family! out! there!! THIS STOPS
NOW. I don't know how I'll hold it together in the event that my belated fight (gov. policy changes in 2012, I was not aware of that till recently) fails. But how can he say that I'm obsessed? That it's just another one of my "OCD/ASD" 'traits'? (Yeah, okay, let's just forget for the moment that I always have to eat stuff in a certain order. That's personal preference. Sheesh!) How could I not do everything in my power to do right by my son?
Getting the services back is not the way. They are untrained and unqualified. The ONLY way to help my son is through this fight to change government policy.
And okay, cue the whining:
We both woke up in a bad mood this morning, neither got enough sleep, both are tired, worn out and stressed. We had a huge ABA training session today so I was in a panic trying to get the house looking reasonably habitable and not all out call-social-services-NOW looking as it usually is. Bubs has things he has to do to get ready, he helps me with certain parts of getting the kids ready, the pets sorted, and today that made him late for work. He forgot documents (relating to the SSEN) I had asked him to scan. He came back from walking to the train station having already missed one train screaming at me that he didn't take the stupid fucking papers and where the hell did I leave them? I'm no wilting flower, but I guess it just started my day off on a really bad foot as my Hubs is usually my rock, a star, totally laid back. Nothing ruffles him. I'm usually the crazy in the family.
Then I get an email from my brother's best friend. And we're talking real best friend here. They met as children and kept being "best friends" until the day my brother died suddenly from Brugada Syndrome on Oct 27th 2002 (the day I am writing this). The message was simple, addressing both my mother and myself (my parents started going through an
ugly, messy divorce in 1993 that got finalized in 1996 when I was 16)
"Dear
[both of you], just to let you know we are thinking of you and
[My Brother] today and miss him everyday still"
So I wrote back
"Thank you
[My Brother's Best Friend]. Same here. :( Thank you for your message.
Love to all the family. May our kids get to grow up to old age with their siblings!!"
And at some point after writing that, something inside me just snapped. My mother would always tell us when we
[siblings] were near killing each other as children: "you'd better learn to count on each other as you're all the other will have to count on when we
[parents] are gone". We were the only ones who had grown up with our experiences, the only ones who spoke our particular brand of Spanglish. The only one who could really understand me for me. Because he had lived through pretty much the same. Having to grow up from an early age with both parents frequently traveling for business, boarding schools etc. Okay, he didn't lose his virginity by getting raped when he was 14 years old, but we'd both had tough life experiences.
You know they tell you when you're a kid,
"don't worry. It's just now. Things WILL get better. As you grow up, things will get easier." Could any of you good internet people please find the asshats who told me this? Because I'd like to kick the living crap out those lying little fucking bastards. My experience is things only get worse. No matter what happens, no matter how bad things are: they can and will get worse. That was proven when a trusted friend
tried to rape me at 18. Really? What's that saying? Fool me once, shame on you; fool me twice, shame on you. (Is it any wonder I'm so passionate about martial arts and Brazilian Jiu Jitsu in particular?) It wasn't the same person, it wasn't even on the same continent, but let's just say I've run into more than my fair share of shady people (don't get me started on the Mexican Police who you used to have to be more careful with than the criminals! That particular corruption problem has lessened in recent years, fortunately).
The whole with my brother was in pretty bad taste too. I mean, it's not even a condition that was present in our family!! Unheard of! The autopsy and inquest didn't even turn up anything. They said he died of SADS (sudden adult death syndrome). I got checked out after getting pregnant with my son, worried that what happened to my brother could be genetic and therefore happen to him. Turns out it was and it might. I have it, am a carrier and though I am slightly symptomatic, I'm not an "at risk" case. That didn't stop the university hospital from slicing open my chest, inserting a Reveal implant (badly, so that no data was picked up and my wound didn't heal for months, became horribly infected and never stopped hurting until I demanded that they take it out almost a year later).
Don't even get me started on my 85 year old great aunt who got strangled in the apartment she lived in on her own in Mexico City. They never found who did it or why, since nothing was stolen from her apartment. I have more, worse stories I could tell, but even with the anonymity of this fine blog, I don't want to bring them up because of how painful it would be to my family.
Anyway, I was listening to this one song over and over, the kids were bouncing off the walls and I was just letting them destroy the house. I mean, really? In the grand scheme of things, who gives a fuck? Right?
And then they came... Deep, asphyxiating sobs I couldn't control or stop.
My son gets freaked out by all things water. When he cries, he jumps up and down hysterically screaming "Mami! Mami clean!! Wipe, Mami, clean!!" while clawing at his eyes (it's a wonder he hasn't gouged them out by now!)
Apparently that happens when other people cry too. Or at least, when i do, since I've never seen him get like this at nursery when other kids cry. My daughter was also sobbing, tugging at my pants while I was desperately trying to discreetly back away into a special invisibility corner that failed to function (kind of like our local/national autism services).
So I had to pull up my big girl panties, wipes the tears away and smile brightly for them, just long enough to cram them into their sweaters and galoshes and throw them the fuck outside into the garden.
God Bless Booze O'Clock. **tic toc, people are waiting**
