Tag Archives: frustration

Going through it.

Sometimes you just have to go through it. I found myself saying this to a person at work today. “You just have to go through it” We were talking about darling boy and the violent rages he suffers from. Work guy said to me “yes but you see a pyschologist about it though” Telling me, not asking me.

I was gentle but honest and honesty is scary because what happens sucks. It’s horrible, awful and frightening but it happens. If darling boy was any other kid or person or even an animal  things could be done. But he isn’t. He’s an intellectually disabled 11 with severe autism and as such I just have to go through it. And there’s nowhere to go and no one to turn and very very few that truly understand what it’s like to have no choice on earth other than to just go through it. And that’s ok.

Let me try and explain if I can.

First there’s the trigger. It can be anything,spilled drink,the dog barks, the website doesn’t load, I ask him a question, he gets a fright, someone interrupts him, he’s decided something.It doesn’t matter. The triggers are there, 100’s of them. So the trigger falls. BOOM. And we’re off. Screaming, slamming doors, throwing things and worst of all the hurting.

He’s a big boy. Same height as me now. And he weighs a fair bit too.Nowhere as much as me but then again according to the doctors I’m far too fat. Whatever, it’s essential padding. The violence can last for minutes or he can come back time and time again for hours. Sometimes I lose track. Doesn’t matter. Ripping my hair out by the handful hurts the most but mainly cause he does it so often my scalp is so bruised and sensitive. I get phantom pains now, like an amputee, at least I hope that’s what they are, phantom pains and not signs of something more sinister. Pinching my belly,under my arms and breasts also hurt a lot. He did it once and I really yelped in pain and he remembers now and tries to get that same reaction. Those pinches though, he uses his whole hands both of them,like you would to squeeze water out of a sponge. He’s got big hands.

There’s more, kicking, headbutting, a kinda punch he does, biting – that’s new, one where he squeezes on either side of my head, in each temple, those big strong hands. Grabbing and scrunching my face like it’s scrap paper. He’s only 11 but those big big hands.

Whatever, it doesn’t matter. I just have to go through it. It’s a cycle you see. A shitty, crappy, rotten, stinking, godawful cycle. We’ve spent years working with doctors, with therapists, with medication, with teachers, with anyone we have access to trying to understand but no-one does. Why? Why does he feel compelled to hurt,why can’t we interrupt his cycle, why can’t we redirect him? All questions, no answers. And there doesn’t have to be answers

Doesn’t matter sometimes you just have to go through it.

Bruises, broken teeth, scratches, concussions, hairline fractures and plain old pain. We’ve had it all. It’s not only me, sometimes dadda, or occasionally even his teacher or caregivers. But we’re not perfect, we don’t get nominated for sainthood here. Sometimes we have to fight him off, it’s awful. You know anything you do will make it worse but there is no option. We’ve checked, we’ve asked, we’ve protected ourselves as best we can but there is next to nothing we can do. No special technique,no martial art hold, legally I can’t be taught to hold him safely because it’s illegal for a single person to restrain someone. Its not considered abuse when we drag him off ourselves, hold him on the ground, push him away. It’s a form of self defense. We don’t always get it right, sometimes we’re so hurt and tired we do everything wrong, we scream and shout and lose the plot and do all those things the perfect parent brigade tells you is damaging and harmful and  we do it because there is no right thing. So we get hurt. And we just have to go through it. Let it flow allow him to complete his cycle of hurting. He knows it’s wrong, he says sorry when it’s over, but like us. Darling boy just has to go through it too.

And after? When he’s stopped and he’s crying and saying sorry mumma and rubbing our sore bits better?  We hold and hug and reassure. We put on our happy face and smile because he needs us to be happy. We wait until he’s calm and satisfied and then, then it’s time for us, time to ice the bruises, assess the injuries, take a breath and carry on.

And that is the now, when he’s a child, only 11. What about the future?

Yes I know “he’s only going to get bigger” And our options then are as they are now. To wit, nothing. Well, nothing productive, Call the cops? They’re not trained to deal with kids like darling boy. They’ll be the first to admit that. There’s nowhere to take him. Hospitals can’t deal and there’s no reason to have him there, so short of throwing him in a padded cell what help will he get? There’s special needs homes of course but if he’s too violent they can’t have him. Besides the risk of abuse is astronomical, already at 10 years old he’s been assaulted by a paid trained caregiver because he was violent. So it’s going to have t be us. And yes we’ll be older, and he’ll be bigger and everything that goes with those ideas keep us awake long into the morning. He’ll be eligible for a benefit, if they still exist in another 7 years. In 5 years we have to trot off to court to be appointed his legal guardians and take on the enormous responsibility that is raising an adult with a childs’ mind. Maybe we’ll be able to afford to buy our own home. I hope, I dream we’ll be able to afford that. Maybe in a quite village somewhere, where people will recognized darling boy and not judge or stare or literally throw stones like they do now. A house in the country with no neighbors to upset when he screams and yells. Where we can create a safe haven, with happy spaces with swings and tramps and swimming pools and dvds and the illusion of independence. I beg daily that this our future.

So why write this entry? For what reason? Pity? Sympathy? No they’re emotions that have no use, I write this to illustrate our reality. And to explain why I told this worker “I just have to go through it” That’s it just to explain, and to say please don’t admire us, don’t admire our courage. don’t put us on a plinth and tell us we deserve this adoration or that one. If you have to say something, try a variation of I’m sorry that happens to you and I can see how much you love your family.

And thanks, thanks for reading and trying to understand.

Peace.


autism v. 2.0??? system error invalid command.

I was just scrolling through some different blogs on autism trying to find others out there using the same software we have installed and I think I must be doing something wrong cause none of them have the same programming errors as we do.

I think I need to do a re-install cause all these other folks have ones that can follow instructions, or communicate  or express appropriate behaviours.

Begs the question what the hell is autism, cause if they’re calling their kids autistic then what the frack is mine???

Example: from an apprently “autistic” 9 year old boy comes the following dialogue “One morning, on the way to taking Teagan to school, my husband and I were having a conversation. I don’t remember what it was about, but I do know that it wasn’t about anything that came out of Teagan’s mouth. He says, “I’m not old enough to choose to make out or not to make out.” I said, “WHAT?” And he repeats it. Then I ask him, “What is making out?” And he says, “When you date.” So, I say, “Oh, well, it’s good you aren’t old enough to make out then.” And then he says, “I want to make out with Skylar.” My husband and I nearly died of a heart attack. And then Teagan says, “We’re going to go to a restaurant.” So, not only is he interested in dating this Skylar, but he also has it all planned out. He is going to go on an internet dating site, for what he presumably believes is to teach him how to be nice to girls, then he is going to take her to a restaurant, then make out with her. Heaven help us!”

Seriously???? you’re calling your kid autistic and he just came up with that???

Lady what planet you from? I’m from planet autism and on my planet autistic boys don’t have conversations about appropriate dating. On my planet boys will occasionally yell out something that may in fact be “DUCK QUACK QUACK”. At least I hope that’s what he was trying to say. We also have “conversations” like this. “Do you need to pee?” “Nooooooooo” “____ do you need to go toilet have a pee?” “NOOOOOOOOOOO NO peeee” “Do you want to try have a pee? No not in the hallway” -cue screaming or as he puts it ‘kweeeeming” As for dating plans are you friggin kidding?? Hell I’m just grateful he no longers launches himself down other females cleavages”

Or how about this wee gem from another ‘autism mom” “I am completely out-of-the-loop on ALL personal care and hygiene issues and he has done a tremendous job!  He is the least smelly teenage boy I know, and very receptive to any changes or new introduction to his routine in this area.  So thankful for this!!  He also has no need for my assistance with any of his household chores.  He empties the dishwasher, carries in and puts away all the groceries, puts his dirty clothes in the laundry, takes out the trash, and starting this spring, will be mowing the lawn.  He will do any work you ask, as long as he knows what time you expect him to start work and for how long.  He is a human timer and has an expiration buzzer for sure – but will work hard when he understands the expectation and task”

Seriously???? you’re calling your kid autistic and your bitching he can only do things after very specific instructions???

Lady what planet you from? I’m from planet autism and on my planet autistic boys don’t follow instructions beyond “try saying that again” Hell I’m thrilled all to bits that my “normal” teenage boy uses soap and sometime follows instructions let alone the autistic one. I figure I’ll still be washing all his bits and pieces when he’s 20, christ can you imagine having to shave your own sons face when he’s hypersenstive to touch, sound and he’s hyperactive to boot.

How about this “mom” and her 2!!! autistic boys “Hey, kid. I wanna tell you that I’m really proud of the way you handled the bus situation this morning. I know it’s hard for you to be late and I’m happy that you didn’t worry too much about the bus. Like I told you before, you’ll get to school no matter what, because if the bus can’t take you, I will. You can count on that. Hey…I have an idea!””What?””Well, since you did such a good job this morning by being flexible and not feeling upset about the bus, I was thinking about a possible surprise. But, if we do the surprise, it means you’re going to be another 5 minutes late to school. You can choose what you want to do. If you want to go straight to school, then that’s what we’ll do. If you’re okay being a few more minutes later than we already are, then I’ll tell you my idea.”He paused for a moment, assessing his options. “I’ll be okay if we are 5 more minutes late. What’s the surprise?”How about we get some hot chocolate on the way to school because you did such a good job?”I knew it!”Yeah, I figured you did, kiddo.”

Seriously??? You’re calling your kids autistic and they can verbalize a thought process, make a decision and assume they are right?

Lady what planet you from? I’m from planet autism and on my planet boys with autism don’t talk, cope with change AT ALL, verbalize thought process OR make decision beyond pointing which dvd is on their shelf. Oh and also? They don’t drink hot chocolate

These “autism moms” need to get a grip. I ain’t gonna take no bitching form any of them. I don’t claim to have exclusive rights to call my kid autistic. I just don’t think they should either. Clearly their o.s. got installed by a techie with half a clue. Their programming might be a slow and require some pretty precise inputting from the user but hell honeys at least yours don’t crash halfway through a download.

I think my kid musta been programmed by a non-english speaking hyperactive crack addict with multiple personalities and a real short attention span.

Peace!


Mumma is getting her She Hulk on!!!

Title is funnier than I feel right now. I am right royally extremely friggin angry!!!!!!!

check this out.

Image
First time he wore these brand new good quality pants.

Brand new never worn before pair of pants. Good quality pants at that. Brought from leading brand children’s clothing retailer here in New Zealand.

Sent him to school this morning in them. and for the third!!!!!! Tuesday in a row he’s come home with ripped pants. Always in the same spot.

Ultimate dadda went to get him today

*cue t.a. in fluffy voice* “Oh ‘H’ has ripped his pants”

*dadda tries reason* “they were brand new pants. how did that happen”

“I don’t know, I wasn’t on with him”

“well who was?”

“not sure…………(talks over daddas head to another person..Thing 1 and Thing and they’re not here”

“what? well who can tell me about this then?” 

“oh he must have done it at lunch time”

At this point dadda has been speaking calmly and quietly and trying to find out why our boy has ripped his pants for the 3rd week in a row. AFTER we pointed out last week that he had done it 2 weeks in a row. ONLY on a TUESDAY afternoon during the “creative play” session he has. No one will talk to dadda, pay him any attention, give him answers, take responsibility or even admit or accept that we’re upset.

So Dadda lets off a string of swear words that would make a sailor blush.

Oh looky that lots of people are paying attention now.

We shouldn’t have to turn into this just to get attention

It’s just crap. We’re provoked by apathy and denial until we lose what little self control we posses then are branded unreasonable when we do.

It’s crap.

This is at the bottom of the long list of things school has done to piss us off. His 3 morning teacher aides are all really nice, we get on well with them. We don’t like that he has three of them but that’s A WHOLE other rant. And a really good one too.

P.S. Still no idea how it happened no-one will a)-accept responsibility b) find out what happened c) do anything about it.

My response????

 

Thanks very much.

 


Curses of the i.e.p. achievments

I.E.P. those three little letters we love to hate. Individual Education Program. aka Twice a year lets all have a collective group hug and be friends.

No. Come near me and I will poke you.

Twice a year let’s sit and reflect on what has and hasn’t been achieved and set some news goals. Whilst trying very hard not to high five anyone in the face with a chair

Urgh. Sometimes useful. “Will learn to stand in a line and wait with other children” – Define line? I never specified a straight line. So if he’s not running off down the road with no pants do we count that as a win??? You bet your ass we do.

Sometimes you think it’s useful only to find out “goals for autistic children – better in theory”

Last year the great autisitic one had a bright wee S.N. teacher full of hopes and dreams.

All enthusiastic and keen with a ton of get up and go. So it got up and left with her….last year. I wonder if I should read into that?

Before she left Little Miss Superkeen decided that an I.E.P goal should be “the great autistic one will ask permission to leave the classroom”  This will be acheived using pecs and supported by the t.a.”

He learnt how to ask permission. For. Every. Damn. Thing. He. Does.

Wants to go outside to play? Must ask. Wants to pee? Must ask. Wants to play with own toys in own room? Must ask. Opens the door to ask if he can open the door. Closes the door and then opens it. Runs outside. Has meltdown runs inside asks to go outside.

I.E.P acheived.

Another genius idea. “the great autistic one will learn to use scissors effectively” he will be supported in this by a teacher aide. There will be plenty of opportunities to practice cutting things.

Are you freakin kidding me!!!!!

Try saying that like this. I want my sugar loaded 2 year old to learn to use a chainsaw more effectively. Because really it’s the same damn thing. Nope pass on that one too.

How about “the great autistic one will share news with a buddy each morning”

What???? He can’t talk and indulges in really bizzare and inappropriate behaviour. Not to mention he lives with 2 crazy people, and a 16 year old I like to call mumbleteen and let’s not forget the dog with an i.q. of a banana sandwich. What’s he gonna share? Miming the dog barfing up half a shoe and a bag full of dorritos while he’s bouncing naked on the tramp and mumma practices drinking vodka with milk cause he poured all the orange on the floor and made pretty patterns.

Not helpful in the ‘real world of autism’

I vote we move to a simpler model of i.e.p focussing of real world goals one at a time.

Next goal. –
Social skills, self managment, fine motor skills, co-operating with others, following instructions
-“When mumma asks ‘where’s my vodka’ the great autistic one will respond by fetching the vodka and juice and pouring into a glass.” This will achevied 80%  of the time or better. With help from dadda

What say you internets people? Love or hate ’em. I.E.P.s? Ever had an acheived goal backfire on you? Let me know your thoughts.