I don't want to be

I woke up today to a dozen or so blog posts to read, and several conversations online about being and raising autistics. There have been a few news stories and everyone has an opinion. 

Except me. I don't want to develop an opinion on any of them. 

I have reached parenting/autism information saturation. I no longer give a fuck what the latest self-advocate, researcher, parent, or organization says my kids are or should be or how I am fucking it all up. I don't even want to know if I am doing it right. I am so fucking tired of being lumped in with the willfully ignorant and delusional and deceptive, just because I have autistic kids, and talk about them.

I don't want to play anymore. I am afraid to write, afraid not to write, afraid of appearing to be apathetic or evil or just stupid. I don't want to talk to my kids therapists and teachers. I don't want to put everything I am or want to be, on hold indefinitely because my children have to be enriched, advocated for, nurtured, scheduled, accommodated.

I don't want to do therapies and work on skills and shit with my kids. I just want to be the mom and let them watch TV and jump on the trampoline and read them bedtime stories without emphasizing parts of speech and pronoun agreement. I don't want to make every moment teachable or provide educational opportunities every waking hour. 

I am just so tired of it all. I want to be a mom more like the mom my mother was. Sure it was a different time and situation and all that crap, but I don't care. I am not cut out to be a helicopter mom, to be an "attachment parent" who is involved in every aspect of their child's life. It isn't that I want to neglect them, I just want them to be able to amuse themselves, tell me when they need my attention, and generally do their thing without my input all the time. 

I know I am not supposed to want my kids to be anything but what they are, but I have to say it:  I want normal. I want average. I don't want to qualify my parenthood with "special needs". I want to send my kids out to the yard to play, or to school on the bus, or invite the neighbors kids to play without having to plan for days.

I want to bitch about my kids without being accused of not loving them. I want to notice a silly or unusual behaviour and laugh or cry without being given advice on how to address, nurture or react to it. 

 I don't want to be the caregiver of special needs children anymore. I want to be the mommy.

Show and/or Tell (please)

Kitten has been crabby. She has been screaming randomly, going from happy to inconsolable in 3 seconds. She has been clawing her throat, head and pulling her hair. None of this is unusual for her, but the frequency has increased of late. Finally, yesterday she seemed a little unsteady on her feet, and actually, voluntarily, took a nap.
Yeah, so when Daddy got home, we took her to the Walk-in-clinic and sure enough, double ear infection.
I try to keep track of these kind of behaviours for this reason. It is hard to know when she is crabby because she is crabby, tired, hungry, thirsty, toddler angst, hot, cold, or, in this case, sick. She has no really functional language. She will occasionally make her wishes known by grabbing food off a counter, or stealing her brother's drink, but mostly, it is a mystery. If I should happen to guess wrong, and, say, hand her a bottle of juice, or a snack, she will fling the offending item, often at the nearest target.Then go in to full meltdown.
She sounds pretty much the same if she is in pain, furious, or frustrated.
"Behaviour is communication" But if the message is too obscure, or if Mommy is just not getting the message, communication is next to impossible.
I went through this with the Monkey, I am sure we will weather it. Still, at least he had what we called "the imperious point" when he would stand in the room where what he wanted was kept, and grunt or keen loudly, whilst pointing in the direction of his desire. He didn't really direct this at anyone in particular, but it gave a clue about what was going on, what he wanted. Kitten doesn't do that. She just stands and screams. If there are words, they are scripted from Dora or some Disney show, and are generally not helpful to figure out the problem. She has shown no interest in ASL, PECS (except to chew off the Velcro backing), or the iPad apps that have helped Monkey.
I think she will discover the utility of language in her own time. She will enter a special needs preschool in the fall, and will get the speech and language and occupational therapy that will help her get there. If she doesn't...well, I guess I am going to have to find some way to interpret those cryptic scripts and behaviours that are her current way of communicating, and somehow hope that she will meet me halfway.

Dwindling

Feeling small. Feeling...less.
Ever since I was a child, I have felt a little less deserving of, well, anything, than those around me. It may be a function of my depression. A consequence of childhood bullying. A leftover from religious indoctrination. A result of emotional abuse. I don't know if the ultimate source really matters, but I don't know how to deal with it in the present.
Mostly, I withdraw. I hold back, stop talking about how I am, how I feel, what I think. I still make small talk, crack jokes, exercise my sarcasm.
As soon as I think people are tired of me, though, I stop. I stop commenting and liking and sharing posts on social media. I stop giving my opinion when I don't agree. No one gets the silent treatment from me, but I shrink back from the world just a bit more.
It is partly that I don't want to be a burden, don't want to seem whiny or weak. Don't want to join the hardship contests, or overshadow someone else's story or needs. I don't really like being the center of attention anyway.
But at the heart of it, it is mostly that I don't feel that I deserve the attention, or sympathy, or help. Others have worse problems than mine. Other people are going through real crises. I am just a fake, a coward, I don't deserve help. I don't deserve love. I don't deserve anything. My needs aren't important, or urgent.
And yet, I always talk about how everyone is worthy. Everyone merits respect, consideration, to be heard, to be loved. Everyone is needed. Everyone matters.
How do I learn to feel that, really feel that? How do I make myself believe in my own worth?

Hanging on a moment

Friends of mine have been talking about Kelli Stapleton and how much we miss her. If you don't know that story, you can find it here. Suffice to say, she got to a huge, ugly, despairing place, and made a colossally bad decision, that led to an unconscionable action that could have cost her and her daughter their lives, and has cost her and her family a great deal of pain and legal consequences. She has been vilified by many, but many of us in the blogging community who counted her as a friend have tried to understand the cause and will keep supporting her in her struggle to get past this, this terrible moment that changed everything.

It hasn't been a great week, or month or whatever lately. I have had a migraine that registers a steady 5 spiking to 8 (for those who don't have a pain scale, I envy you) since before the holidays. I endure. I rally. I survive. I spend some of my time curled up in the fetal position under a blanket in a room as dark as I can get it, at least until the kids find me. I have days when I cry a lot. I have days when the pain leaves the rest of me numb and stupid, and I just barely function well enough to keep us going.

The Kitten has taken to biting so hard she breaks the skin, even through clothing. So far she has restricted this to her parents, but only because her brother won't get near her most of the time. She has just started to show the head banging behaviours that her brother started to show around this time. It is really, really hard to watch her follow that path. I still don't know how to deal with it. The strategies we used with the Monkey were essentially, ignore unless injury is immanent, redirect, distract, restrain. He grew out of the worst of it, more or less, when he started to communicate better. It makes sense. The intense frustration of not being able to convey your needs in a way that others understand must be overwhelming.

To get to what passes for a point, it has been tough. I won't say it is either more or less difficult than what others deal with, because I know plenty of folks who have it tougher, who suffer more, who are hurting and fighting and in the end, we are all doing what we can.

Thoughts of suicide have crossed my mind. Hell, there hasn't been a time in my life when they haven't been there, at least in the background. Depression is a bitch. It robs you of energy, motivation, and hope. You find yourself reacting to things in the most negative possible way. I snap at my family, indulge in my own self injurious behaviours. I get into the negative feedback loop: I am crabby. I hurt people's feelings, I feel guilty, I get crabbier, my behaviour gets worse. I feel sorry for myself, then feel stupid and frustrated by my own self pity. I take that frustration out on the people around me, and on my own body. And so on.

More than once, I have reach that moment of crisis, that crystal clear, knife edge of insanity that whispers, "They would be better off without you. It hurts too much to go on. You're an utter and complete failure, and there is nothing worth redeeming." That moment, that pain, that thought.
If you were to look at me at that moment, and judge me by my state of mind, my actions in that place of pain and hollow emptiness, you would say I was a terrible human being, selfish, stupid, blind to the love and support that is all around me. And you would be right. But I am not defined by that moment. There is so much more to me than the person I am when I hit that ultimate low point. When I am outside of that moment, I do, and I am, some good in the world. I am as kind as I can make myself be, I care deeply and I love unconditionally. I have been incredibly fortunate, and am infinitely grateful for the intervention of friends and medical professionals who have pulled me through those terrible moments. But in that moment, wrapped in pain and failure, I am barely human. I am not capable of rational thought.

That is the moment that took Kelli to a place that no one should go. That turned her, in the eyes of much of the autism advocacy community, and much of the rest of the world, into a monster. Somehow, that moment negates anything she was or did before it. From a fighter for her family, to a killer, a demon, a hater. ONE MOMENT. One act of despair. One terrible mistake. Why do we define a person by a moment, without any knowledge of their state of mind, or their character and actions before that moment? What gives us the right? I am not perfect or innocent. I have done things I am not proud of, and have thankfully been given the means and opportunity to make amends where possible.

I won't judge people by their worst moment. I know what it is like to be there, and I know that is not me, and not them. I may not find their actions forgivable, or understand what got them there, but I will not say that losing sight of reason in one terrible moment defines them.

Christmas with the Crazys: a holiday card letter

The holiday season is still a special time of year, even for an atheist like me. We do a Christmas Eve supper with friends, lots of presents for the kids, and this year we even have our own house, and our tree was up before the 20th of December! (personal record since the Monkey was born) Granted, I have trouble with the whole garland thing. This year it looks okay on the tree, but the stuff I put up around the house looks more like Christmas Creeping Kudzu.
Anyhow, we have been trying to establish some holiday traditions and memories for our little family that don't involve poop, pregnancy or pets destroying the decorations. I like the concept of family traditions. I am not exactly terrific with the execution, but I do my best.
The one tradition I just can't get behind is the Christmas letter. The purpose behind these seems to be threefold:
1. To brag to people you hardly ever see about how incredibly awesome/talented/brilliant your children are, how successful/nurturing/amazing your spouse is, and how God just loves you a little more than most people.
2. To subtly imply that everyone else should feel just a little cheated that their lives are not nearly as incredible and full of JOY and LOVE and SHINY THINGS as yours. Also, you are a better person, with more interesting and meaningful hobbies/jobs/friend than theirs.
3. To give the impression that life is just great, when in truth it could be a stinking pile of feces.

I have nothing in particular against the first one. I can brag with the best of them, when I have something to brag about. As long as you are doing it with the motivation of making someone else feel happy for you, or sharing your happiness. Mostly that doesn't seem to be the case. The letter becomes a kind of "Haha, my life is better than yours is!"

This year, I have decided to write my own letter. Yes, I know it is last minute, and I am not gonna get anything more than eCards out at this point, but dammit, last minute is how I roll.

Dear Friends, Family and Whoever has a Sh*t left to give,

It has been an eventful year, here in the Crazy household. From a summer vacation in exotic Vancouver, to moving house without use of sedatives, it has been non-stop excitement!
 Thrilled to report, Kitten got her official autism diagnosis for Christmas!  She has been flapping and spinning for some time now, but we haven't been sure that it wasn't just "typical" toddler behaviour. So great to know that our darling girl isn't merely "typical". I have cut screen time down to 8 hours per day, and as challenging as it is fill the extra hours with non-Dora related content, the increase in destructive use of toys is SO worth it. I have been coping getting along with tolerating enjoying the intrution visits of Monkey's therapists and so look forward to adding Kitten's to the daily routine.

And speaking of special, Monkey hasn't smeared poop on the walls since August, and is almost always peeing in the potty, just in time for his 6th birthday! He has just blossomed this summer, what with the speaking in sentences that don't quote Cars (tm)! When I can pry his iPad from his hands, he has even been known to say full sentences, like "Get out my room, Kitten" and "Want my iPad NOW, Mumum!"

Hubs switched jobs, and no longer has the  excuse  reason  burden of a long commute to keep him from the bosom of his loving family. The children just shower him with affection when he gets home, sometimes even acknowledging his presence within less than a half an hour, even when they haven't had a potty accident!

Even the cats have been contributing to the joy of our household, considerately confining their malicious accidental peeing and defecation to the kid's play area, where there are easily discarded floor mats and stuffed toys to piss on!

 Me, I have just been busy, busy, busy, with providing enriching opportunities for the kids and cleaning up  the debris. With my med change is coming up,  I am just so excited for this new opportunity! Now I can use all the money spent on self medication with alcoholic beverages to replace the crap the kids have destroyed!

 Merry Christmas! Happy non-denominational whatever!
Kermommy
Stay at Home Crazy

 What do you think? Totally full of spirit and inspiration, right? A new tradition in the making!

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.