Monday, 29 April 2013

Broken eggs

I made brownies yesterday. Those who know me well know exactly what that means. I am a stress baker. I do my best to bake stuff that I don't like, because I am also a stress eater. When I make stuff like fudge, or brownies, or cookies, it means I have given up, given in, and am going to have a 10000 calorie day because I suck and I am going to be old, fat, and miserable.
Yeah, that kind of day.
To avoid more massive meltdowns and to keep him under supervision, I had the Monkey helping me. I do try to have fun with it a bit, even if his help mainly consists of adding extra flour and sugar to whatever I am making while I attempt to block, or flapping and hooting with mad joy when I turn on the mixer. This time he added egg cracking to his repertoire, and I picked shells out of the batter. Good times.
I sent him off at last with a beater (Yeah, I know, raw eggs, sugar, all that crap. He licks the floor next to the toilet at the mall too. He is building up his immune system. Shut up.) I cleaned up and put the pan in the oven, poured another cup of coffee and licked the other beater, and bawled my pathetic stupid eyes out.
I always wanted to bake with my kid. I loved it when I was little, and I love the picture of me and my mom baking cookies and making a mess. I love the memories of licking bowls and beaters (apparently they didn't have salmonella or e coli or whatever the hell else we risk these days).
The picture falls a little short of the reality with Monkey. He doesn't hold still that long. Given a chance he will dump all the containers of flour, sugar, milk and whatever else he can get a hold of into a big messy pile. He will eat handfuls of margarine and butter (ugh) and crush eggs in his hands.
 That's my little sensory seeker.
On good days, I can clean up the mess, even smile at his flour covered self and take a picture. Yesterday wasn't such a good day.
He had already had a shower and two baths because he kept removing his diaper or underwear to urinate on his carpet and roll in it, and he had a poop smearing incident that the hubby caught just in time, while it was still confined to just the carpet and himself. It was disheartening after a relatively promising start to his ongoing toilet training regimen, peeing in the toilet with very little encouragement that morning. That was the last cooperative moment of the weekend though.
I can't explain why this hit me so hard yesterday. I just wanted to enjoy the moment, but I couldn't pull away from the frustration and pain.
I know springtime is a frustrating time with our ASD kids, I'm told that regression in behaviour is "normal" in the spring. I just feel so helpless. It feels like any progress we make is pointless, and some new unpleasant or dangerous impulse is immanent even when he is having a good time. He is head banging and punching tile floors again, the bruises and scrapes break my heart to see. He kicks and hits and head butts me until I sport the same bruises and scrapes. Then he just repeats "sorry mummum lub you mummum, sorry mummum" over and over as he huddles under his blanket.
How do I parent here? How do I keep him safe from himself, and keep his sister and me safe from him? How do I watch him closely enough that in the 3 minutes it takes me to change the Kitten's diaper he doesn't somehow shed his undies and spread feces on every toy and surface of his bedroom?
Never mind, I have lots of advice on solutions and strategies and goals and charts and all that to look at. I have tried and crossed off the list many unsuccessful methods, and failed to be consistent enough with others. Sometimes I wonder if I am even close to capable of being a mom, especially to a special needs kid. I want to be the best mom I can be, but maybe my best isn't enough.

Thursday, 11 April 2013

Yeah, it's me

So, having wallowed in the stinking pit of depression for a few weeks, I have been trying to dig out of the hole and into the fresh air again. I swore that this month I would try to be more positive, more active, more connected. I would support my online friends, be more fun with my kids, be affectionate with my husband and stop obsessing and bickering about stupid stuff.
I don't know how well I was doing. I would like to think I was handling things pretty well. I wrote a post for autism awareness, did some paperwork that had been waiting for a while, tried to comment on friends' blogs and be supportive and sympathetic.
There were bumps in the road of positivity. The Monkey's service provider is being a PITA, the government bureaucracy is being bureaucratic and we are house hunting, on the premise that our landlord is planning on selling this place. I handled it. I am handling it. I did not explode or break down. I got angry, sure. I am frustrated with how things are going, and how little I can affect it all, but I am coping. Or at least I was.
From last night to now, I have been crying off and on, feeling down, useless, rejected. And over what?
A Facebook incident. Yeah, that's right, social media. Why do I do this?
The incident in question involves a member of a group I belong to, who has exercised her right to block me entirely. I can't see her posts, I can't private message her, I can't see her pages. The reason she has done this is apparently an annoying habit I have of "liking" too many posts and comments. The groups and friends we have in common tend to specialise in long, hilarious threads. They can run into the hundreds of comments. So, when I "like" a lot of the comments, it blows up people's notifications.
Honestly, I can't blame her, it really is me. But although I can't see what she posts, I can, on those threads, see other people's replies and references to her posts. And every time I do, it hits me like a punch to the gut. The worst part for me is that I like her. I appreciate her wit and humour. I feel like I have been excluded, shunned, rejected by someone I respect. I can't even apologize. And I hate it. And I can't change it. And I seem to be letting it drag me down into the pit again. And it is my own stupid fault.

Tuesday, 2 April 2013

Puzzled and blue

Autism awareness. I can't say that I am overly pumped about the day, month or whatever, but I, my husband (the special needs teacher) and my kids are wearing blue t-shirts and we have the blue light bulbs. I have my puzzle piece necklace. I am writing for the first time in over a month. But mostly, I am parenting my kids, and trying not to stress out over the events of life.
 I feel like I have been phoning it in lately.
I feel like I need to explain what the symbols of awareness and acceptance mean to me. People get angry and upset over symbols that they interpret and associate with various causes and organizations.
Light it up blue: This campaign was begun by an organization that is controversial in the autism community and frankly detested by many, Autism Speaks. I don't endorse them. I don't like their negative and cure oriented mission, and I don't like that they exclude those who don't agree with their mission, including autistics themselves. They have served the purpose of raising awareness, but their fear mongering and focus on catastrophising the condition is unacceptable. Their endorsement of unproven and dangerous treatments and "cures" is appalling.
That said, I think that blue is as good a colour as any, and if someone asks why I have a blue light at my front door, it has served its purpose as a beacon for opening the discussion of autism, why awareness is important, how acceptance is best demonstrated, what autism is for my family.
If the colour blue is not for you, the rainbow is a great alternative to represent "the spectrum" but really has multiple associations with other groups and causes, the most notable being the GBLT community.
Four Sea Stars is a fantastic blog. You should check it out.
Puzzles and puzzle pieces: I'm not entirely clear if this originated with that same organization, but I love the puzzle piece. My take on it is this: the world is a puzzle, and all of us are pieces, we all fit somewhere, but some pieces are harder to find a place for than others. This isn't their fault, and they are still a part of the whole, absolutely necessary to complete the picture. They belong, and we can help them find their place.
I make and sell these in my Etsy store here:
(shameless plug)

I have no quarrel with those who eschew these symbols, or embrace others, like the butterfly, rainbow, and so on. I don't want to argue the symbolism. In conversation, or in your space (blog, Facebook pages, what have you) I will refrain from discussions of these symbols if they offend you.
Still, I want what the awareness and acceptance message hopes to achieve: a world where everyone's child is accepted for who they are, what they are. Where disability is just different ability, and accommodation is just the status quo. Where having traits and behaviours that are unusual but harmless is no big deal. Where help is available for everyone to achieve their ambitions and potential. Where assisted communication devices, weighted vests, ear protection and other useful assistive technologies are readily available, not notable, but as ordinary as cell phones, eyeglasses and umbrellas.
I am tired of being attacked or disdained for my use of symbols, and the way I chose to promote the cause. I really feel that my message is clear as I can make it. I am not attacking anyone with my love for my kids, my respect for their differences, my compassion for their struggles, my admiration for their successes.
So celebrate difference, accept people, help those who need it, accept help with dignity when you require it.
And if you have any questions about my blue t-shirt and light, my puzzle piece necklace or my son's behaviour, let me know. I am always happy to help one more person to understand autism, in as much as I understand it myself.