My house, their rules

I think I have figured out why I am hating the home-based therapy model required by the government agency that provides funding for the Monkey's therapies. It has been bothering me for a while, and while Monkey has made amazing progress and enjoys most of the sessions, I have been feeling more and more resentful as the weeks wear on. I feel guilty about it, of course. What is my problem? After all, this isn't about me, this is about him.
Well, it isn't, but it is.
The point of requiring therapies for pre-K and Kindergarten special needs students is, according to the funding agency, to help parents to develop coping strategies and methods of accommodating and working with their special needs child in the home. It is about educating the parents to deal with behaviours and challenges. All goals are supposed to be more "family focused" than "child focused".
I get this. The whole educational system is designed for the child. The therapies in the home are supposed to support the family centred model as a way of making sure the child and his siblings are in the best possible environment to learn and interact.
So it is about me. And I hate it.
I hate having to be fully alert and ready to deal with people first thing in the morning. Petty, maybe, but I have never been a morning person, and I resent having to be nice to people I don't care for before I am fully awake. I know his kindergarten is in the afternoon, so they have to do the therapies in the morning, I just wish I didn't have to have them in my house.
I have having to make sure the whole house is clean and tidy and organized every day, to the standards of the therapists and their bosses. I hate that when I miss a last vacuum of the kids' rooms in the evening, or if my little crumb factories have toast for breakfast, and I don't manage to sweep it all up by the time his people get here, I get snide little remarks, or those oh so helpful "just so you know, his carpet has food all over it" or "there is a sticky spot on the floor over here" type of comments.
I hate most of all that I have to welcome a parade of strangers into my home, as if I wanted to have every aspect of my decorating and housekeeping and parenting on display for people I don't particularly like, but have to tolerate. I have to be polite and even kind to them, even though I don't want them here.
It isn't even that I dislike them in particular. Most are nice enough, and mean well. But I don't get a choice. They are rarely people I would choose as friends, and certainly not as people I would invite over every damned day when I am at my least social.
I feel guilty and a bit ungrateful for these thoughts and resentments. I'm happy my little monkey can get the help he needs without it being a major financial burden in these early years. I just wish it didn't have to be at the cost of making my home the therapists' workspace.

Sometimes I forget

Sometimes I forget.
Day in, day out, I get used to the way things are.
I forget that "most kids" at his age don't line their toys up in patterns all over their room, and cry real tears of anguish when they are accidentally disturbed.
I forget that "most kids" don't howl, flap, jump and run circuits of the house when they are excited about the show they are watching.
I forget that "most kids" at his age can hold a pencil, use a spoon, pull a lever, push a button, squish play dough in their hand.
I forget that "most kids" at his age can kick a ball, run without stumbling, carry something without crushing or dropping it.
I forget that "most kids" at his age can sit and eat in a restaurant without climbing under the table of the booth beside them, can wait for their food without keening in distress and punching the seat.
I forget that "most kids" at his age don't deliberately poop their pants, then play with their toys in it.
I forget that "most kids" his age can talk easily, in full sentences, to almost anyone.

Then we go to the playground, or the mall, or a restaurant, and I see the other kids. Kids smaller and younger, who do all the things kids their age usually do. Kids who seem to be listening to their parents, enjoying a snack, playing appropriately.
Then I remember. He isn't quite like them. He can't do what they do. He doesn't act like they act.
He isn't "most kids".
It is always a little shock, that "normal" exists most places. But not in our house.

In our house, normal is therapists, accommodations, precautions, damage control. It's always being careful, vigilant, aware. Never careless or resting without consequences.
Sometimes I remember.
Some days that is okay with me.
Some days it hurts to see him not fit in.
Some days I am just too tired or busy to think about it.
Most days I just wish I could forget "normal" is out there, and is not always a welcoming place for me and mine. I know I am not supposed to want him to be different, to be anything other than who he is, where he is right now.
Most days, I just want to be normal. Whatever that means.
And on good days, I forget.

What I see.

I tried not to write this. I tried to just let it be. I watched as my friends (my fellow autism parents, my companions in mental illness, some on the spectrum, some not) discussed, argued and mourned the actions of a mother in crisis.
She made the wrong decision. She not only decided to end her own life, but that of her teenaged daughter. That was unequivocally, undeniably wrong.
 I am angry at her. I am angry at the systemic destruction of her ability to cope by an unfeeling, unforgiving bureauocracy. I am angry at the knee-jerk reaction of the haters, those who immediately use this as fodder for their hatred and an excuse to vilify all parents of autistic children. I am angry at my own guilt and shame and frustration.
I am also sad. Deeply, inexpressibly sad. For all of this. For Issy. For Kelli. For their family and friends. For my communities of support. And yes, I am even sad for myself.
See, I have attempted suicide. I have been at that point of guilt, and depression, and despair. I can't speak to why Kelli did this, except that she was obviously at that terrible place. It isn't a state that makes for clear thinking or logical actions. She made the wrong choice, the wrong decision. SHE WAS WRONG. I don't question that at all. It is unbearable that Issy has to suffer for this, but I know that Kelli will be punished, and she deserves to be punished for her terrible action.
I mostly need to know why. What happened? Kelli is an incredible fighter, a good mom, a compassionate person. She has advocated, suffered, and laboured to see her daughter reach whatever potential she has. She is also a murderer, a suicide, a coward,  a person who gave up on herself and her child. Issy is a violently aggressive, autistic teenager with poor control, and has physically attacked her mother countless times. But Issy is a fourteen year old girl, who by all accounts loved and trusted her mother. A person who did not deserve to be hurt, and who does not deserve to die.
When I ask the question, how can we stop this from happening again, the answer from the haters is "Don't kill your kid!" Gee, why didn't I think of that? By not killing my kid, I can assure myself that no child will be harmed by their caregiver, ever! This kind of thinking is deadly. How do you prevent this situation from happening again? How do you protect the vulnerable, while making certain that parents won't come to the point of seeing this as the only course of action, to kill themselves and their child? This isn't the case of a monster, or a psychopath, or a violent criminal killing someone out of hatred, no matter what the haters see.
See, I don't hate very well. Maybe I just use up all my hate on myself. I have too much empathy, sympathy, whatever the fuck it is that lets me put myself aside and see where other people are coming from. I don't hate the haters, because I can feel the pain and terror and rage that drives them. I don't hate Kelli, because I can see the despair and helplessness that drove her. I just hate that it has to be this way, when everyone wants the same outcome, that no child is harmed, that no human being gets to the place where harming their child seems like the only recourse. So while the haters scream their anger to the world, and call for the most brutal of punishments, the most merciless of actions against Kelli, I will continue to look for that why. I will be as great a support for my fellow travellers as I can be. I will do what I can, because this wasn't the heartless act of a monster. It was the desperate, destructive, terrible act of a human being. And I can't bear to see it happen again.

 Real Husbands of Autism on Facebook

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Let him be

This is for my father-in-law. He won't read it, which is probably why I feel I can share this here.


 To his Grampa,

Today I was a coward. I watched you with your grandson, my little Monkey, and didn't interfere. He adores you, you know. He has been looking forward to this visit with growing impatience, and is thrilled to be here.

You sat with him while he watched TV. You sat, he did his own thing. He was really enjoying the show, Scooby Doo, I think, and began his usual exuberant run back and forth from his seat, flopping down to watch, jumping up in flapping, hooting excitement, running to the hall, running back to flop down again.

This is what they call in the autism world "stimming". Monkey's stims tend to be vigorous and physical, and a bit noisy. If you had a bouncier couch, he would probably be jumping on it like he does at home.

Every time he did this, you told him to settle down. When he didn't sit quietly to your satisfaction, you changed the channel. You did this, you said, because he was "overstimulated" and perhaps another program would be less so. Each program change was greeted with whimpers and protests from the Monkey, but he liked the next program you chose, so he settled to watch for a few seconds, before resuming his stimming.

Then you changed it again, same reason given. And again. Monkey grew increasingly confused and agitated. When the last kids' program you could find didn't "settle him down" you turned it to the news. Monkey broke down in tears. "Please my shows, Grampa" he pleaded. You said, "No, you are getting too hyper." "Sowwy, not do it again", his usual phrase when he knows an adult is displeased with his behaviour, whether he knows what he did or not.

I bit my tongue and didn't say what I was thinking. What I am writing now.

Let him be. Yes, he is excited. Why is that bad? He is not screaming or breaking things. He isn't slamming his head into the tiles hard enough to bruise. He isn't interfering with your enjoyment. He is being himself, with exuberant, unselfconscious joy. He does NOT need to settle down, relax, be quiet, be still. He needs to run, to laugh, to hoot, to flap and jump. He feels happy with his whole body, and his need to express it in an unusual way is not a problem.

We are working on "appropriate" behaviour. We try to make him understand that sometimes he needs to be quiet so as not to disturb others in their enjoyment of, say, a movie, or a meal in a restaurant. Yes, sometimes he needs to control himself.

But not here. Not when it's just him and his grandpa in the living room, watching a show he chose because he loves it. How can you not see the pleasure and joy in his stims? How can you stomp on the expression of pure excitement? He has plenty of time and places to practice fitting in, being respectful, being calm.

This isn't the time. This isn't the place. Just enjoy the moment. Watch him light up with happiness at watching a show with his grampa.

Just let him be.

Let's talk poop (or at least pee)

So, I am still a little nervous about saying it out loud.

I don't want to jinx it. Yeah, I know that's kind of dumb, but really, I am freaking out and holding my breath, and trying not to disrupt this latest development...

The Monkey is using the toilet.

On his own. Out of the blue, pretty much. He runs into the bathroom, pulls down his pants, undies and pullups, sits down on the toilet and pees.

Sure, we have been working on this for almost 4 years, and yes, we have bribed, encouraged, applauded, bribed, celebrated, cajoled and wheedled, set up schedules and toy boxes and iPad time and did I mention bribed him with promises of Hotwheels as a reward for a day of successfully keeping his pants and carpet dry. Nothing worked before. For a while, he would sit on the potty for half an hour with his iPad, then go to his bedroom to pee on the carpet. He would drop his drawers in the middle of the living room and watch with interest as puddles formed about his feet. We went through months of him screaming his head off at the mere mention of sitting on the potty.

There was a really fun interlude when he would lead me into the bathroom, sit on the toilet for a second, then jump up and pee on my leg, while laughing his ass off. It was at that point that I gave up for a while.

 Then a few days ago, he started just...going. On his own. Like it was no big deal. He would tell me of course, because by golly, he wanted his "stars" on the heretofore neglected potty chart.

BUT I DIDN'T HAVE TO REMIND HIM. HE WENT WHEN HE HAD TO GO!
He tells me "I pee" when we are in the supermarket and goes in the public toilet. He holds it until he gets there!
Okay, he still has his moments. He mistimed it a couple of times, and peed on himself and half the bathroom floor before he got into position on the toilet. But when he did this he was upset, and let me know. He has NEVER been honest about whether he has peed before. He isn't one of those ASD kids who can't lie (not to say he is all that good at it; he's still five). Now he is letting me know he has had an accident.

He still plays with his poop on occasion. He is not really interested in pooping in the toilet. (why waste good play material, right?)
But this. Potty training himself. This is huge.

Maybe there is hope for us as parents after all.

Writing and life, not necessarily in that order

I used to really enjoy writing. I would write in a journal (yeah, like on paper. I am old.). I would write little stories and poems, short essays on whatever I was thinking about, that kind of thing. In my second attempt at college, I really enjoyed writing for my history class, philosophy papers, short assignments. I loved words, and while research could be a slog, I liked some of the stuff I came across. It made me think about the things I was learning in new ways, from new perspectives.
Later, when I finally entered the final phases of my university degree, writing lost its appeal. Trying to produce precisely arranged essays, by rules that seemed entirely arbitrary and stifled creativity kind of sucked the joy out of words. I still read for pleasure, but reading for coursework made my time for actually seeking out things I was interested in reading shrink, and other than a novel here and there, my pleasure in the written word was considerable diminished.
I was pregnant with the Monkey when I graduated with a BA in history (only 20 years to get a bachelor's degree...go me!) and at that point had far more time to read, but only wanted to read easy fiction that wasn't terribly taxing, and certainly I had no desire to write anything for myself.
Then three years later, I had the Kitten, and the following winter, Monkey got his diagnosis of autism.
It was time to read again, all of the books on autism, articles on the net, reports and evaluations, and then, fortuitously, I chanced upon my first autism blogs.
At the time, I had just weaned myself off Facebook games (farming games, aquarium games, restaurant games...yeah, I played em all to excess) and was trying to concentrate on Monkey and Kitten and all of the things that needed to be done to get our boy the help he needed, and to understand how to make it happen without losing my mind even further.
Homestyle Mama (with a side of autism) was one of the first blogs I read that really spoke to me about the real world experience of raising an autistic kid in an ordinary (more or less) family. She talked about the frustrations, hopes, challenges, anger, joy, even the mistakes. I will admit, I was a bit awestruck at the concept of writing about personal experiences with that kind of honestly, with humour and style, and useful information for other parents on their own journeys. I connected with her on Facebook, and with her help and encouragement, started my own page, and blog. I don't have anywhere near her dedication to her writing, her advocacy, or her talent, but I do have a voice, and her encouragement to me to share what I can has been instrumental in getting me back to writing. Through her I have "met" and befriended a network of incredible bloggers and advocates, autistics and parents of autistics and other special needs kids.
I don't know where I would be, mentally, without this amazing group of people. The last year and a half has been exhausting, with moments I wanted to give up, quit, collapse, and die. This amazing group of online friends has supported me, and accepted my support, with an openness I have never before experienced.
And I am enjoying writing again. That is so incredibly important to me, and it was my online supports that made it possible.
So a heartfelt, sappy, and grateful thank-you to all of my online friends. And especially Homestyle Mama. Thanks, Mac, for helping me find my writing voice again, and telling me it was worth reading.