Unqualified

I'll tell you a secret.
I don't know what I'm doing.

I don't know how to be a wife and partner to my husband without subsuming my needs. I don't know how to talk about what's bothering me without it coming out as an accusation or a complaint. I don't know how to explain why I haven't done all the things when I really don't know why, other than the feeling of being so overwhelmed that I can't begin.

I don't know what I'm doing.

We just got a puppy. We have one hostile and one geriatric cat. I don't know how to get them all to get along, when the pup just wants to play, and the hostile cat hisses and spits every time he comes anywhere near him. I don't know how to house train a puppy, or get him to stop nipping at feet, or convince the children that the dog is just a puppy wanting to play, and not a danger or mean.

I don't know what I'm doing.

I have no idea how to be a parent, either to an ordinary kid, a special needs kid, or any kid. Every day I feel out of my depth, out of my comfort zone, out of my mind. I don't know how to engage my 6 year old, get him to practice his writing or do his PT exercises to strengthen his loose limbed body, or to eat enough decent food to keep him growing healthy. I don't know how to entertain my 3 year old, or get her to stop eating not-food, or convince her that communicating is in her best interests. I don't know how to get either kid to sleep well or develop good habits or avoid bad ones.

I don't know what I'm doing.

I don't know how to talk to people without sharing too much or too little, what appropriate topics of conversation are or how to interpret any but the most basic of facial expressions. I don't know how to keep myself from running from social contact or avoiding it altogether. I don't know how to take the rare successful social encounters and turn them into friendships. I don't know how to keep friendships going.

I don't know what I'm doing.

I don't know how to advocate for my children. I don't know how to navigate the maze of paperwork and meetings and therapists and doctors and teachers. I don't know how to keep my kids safe while ensuring their happiness and growth. I don't know how to walk the fine line of getting them educated while respecting their individuality.

I don't know what I'm doing.

I don't know how to keep the house clean, keep the kids safe and the pets from wrecking stuff, and still find time to breathe. I don't know how to keep myself focused and calm and functional when my brain is trying to destroy me. I don't know how to give myself "me time" without depriving my family. I don't know how to get help when my own disabilities overwhelm me.

I don't know what I'm doing.

I'm tired and scared and worried and angry. Because so many people are counting on me to get it right. Because I have to put on the hat of competent adult and live in the world, and reassure everyone that I can do this.
But I am not competent. I am not qualified for the position of wife, mother, friend, adult.

Because I don't know what I'm doing.

A day in the life of our autism, summer edition

I wake up to my six year old son climbing into our bed at 4:30. He brings Big Teddy, Little Teddy, three pillows, a blanket and a handful of Angry Birds.

I hear my three year old up and moving, and find her splashing and stimming happily in the cats' water dish, the canisters I keep baking supplies in moved from the pantry to the middle of the kitchen floor, arranged in a descending spiral of sizes, each with a correspondingly sized Dora the Explorer or Abby Cadaby  doll perched on top. 

Good morning, autism.

She leaves off her redecorating efforts to look at me and make the sound that got her the nickname "Angry Kitten", and I offer her a cup of water, which she throws aside, yowling louder. I dig out her favorite breakfast biscuits and this is evidently what she wants, because she grins, snatches and runs with them. 

The Monkey is ready for his juice and his iPad, and very politely asks for them. When I don't simultaneously produce both instantly, he bursts into tears and asks, "are you very very angry with me?" over and over. I do my best to reassure him, while getting his juice and his iPad, as he declares he needs a hug and a kiss, and I try to do everything at once. Happily immersed in his Angry Birds or Plants vs. Zombies game, he settles on the couch and is calm again. 

Kitten has finished her breakfast and is digging in the cat food. I redirect her to the deck outside, where she runs back and forth, back and forth for almost an hour, while I make coffee and tidy the kitchen. 

Monkey approaches, naked from the waist down, declaring. "I peed in the toilet! I peed on the floor, too. I pooped in the toilet!" This is pretty obvious, since he hasn't mastered wiping or flushing yet. It is a good effort though, in spite of the pee on the floor, and he gets a quarter in his reward bank. I help him clean up and wash his hands, put on clean undies and shorts to replace the ones he left in the puddle on the floor. 

Kitten takes advantage of my distraction to go back to the cat food. She grabs double handfuls and lets the kibble fall through her fingers, delighted. She is angry when I interrupt her, but forgives when I turn on the water to wash her hands. She loves running water, whispering the rare words that she uses in context, "water water waterfall" on repeat. I again think that I need to get her a water fountain, one that she can't disassemble easily, so she can enjoy her waterfalls whenever she pleases without wasting water.

Daddy comes downstairs, goes to sit with Monkey and play his XBox. I ask him to change Kitten, and he does, while I get his coffee.

It is getting close to lunch time, so I assemble cheese and crackers. I add cucumbers to the Monkey's plate, and berries to Kitten's. They sit at the table, Monkey carefully assembling sandwiches out of the items on his plate, Kitten taking bites at random, mostly disassembling her food into tiny pieces and letting it fall to the floor. She jumps off her chair and runs to her toys, and I begin the sweep up. Monkey screams at me from his chair: somehow I have miscounted and he is one cracker short of completing his last "sandwich". He is beside himself and heading quickly into meltdown. I manage to forestall the worst of it with a quick addition of a cracker to his plate, and a head squeeze. He settles again, sobs decreasing, to finish his lunch by assembling, then abandoning the food, to go back to his iPad and his games.

Kitten is engrossed in her blocks, and I take the moment to go online, check my Facebook, my e-mail, Pinterest, my Etsy store. When she has been quiet for too long, I check on her, only to discover that she has knocked down the safety gate and got into my little workshop, and is dumping beads and buttons into a pile and doing her scoop and let fall again. I put the gate back up and reluctantly set up her rice table. I know that I will be sweeping rice out of everywhere, but so be it. 

Monkey's iPad is out of power, and he is ready to go outside, so I plug his machine in, and he plays on the deck, reenacting his video games with his figures and Lego. I try to get some work done on my jewelry, checking on the kids regularly.

Daddy does some yardwork and takes the Monkey with him. This leaves me some time to work until Kitten reminds me she is still there by grabbing whatever it is she can reach that I am working with and throwing it. As I gather up the debris, she leans in and bites my leg hard, not quite breaking the skin through my jeans, but leaving a painful welt that will swell and bruise painfully. This is not the first time, and will likely not be the last. I don't know how to address this behaviour, all suggestions and attempts so far have been unsuccessful. She giggles and runs away. I finish cleaning up. I put some ice on the spot, and wonder if I am screwing up by not punishing or ignoring or whatever else I should be doing to keep this from becoming a major problem. So far, she is just biting Mommy and Daddy, but she will be going to preschool this fall, and I wonder if she will try to bite the teachers, or worse, her classmates. 

Monkey is back in, looking for his iPad. It isn't charged yet, and he screams, "You hate me? You want me to die my iPad! You said you destroy my iPad!" Nothing will stop this one, he heads into full meltdown and I wrap him in a blanket and rock him as he wails. When it is over, he keeps saying, "sorry mumum, I not listen to you", and I try not to cry. 

Kitten is back in the kitchen and I finally let Monkey go and find her scattering rice and spinning, head thrown back and singing "Twinkle twinkle little star". No big deal, and she is happy. 

Daddy comes in, goes and takes a bath, then settles on the couch for more XBox with Monkey, and tells me to go take a shower while I can. While I do, Kitten poops in her diaper, and digs around in it with her hands. She isn't the smearer that Monkey was, but this is not too much better. I run a tub for her and get her cleaned up. 

 Monkey and Daddy are now watching TV, Monkey jumping on the couch then tearing across the house and back, hooting and flapping with excitement. I smile at his pure joy. He gets more exercise watching TV than most people do at the gym.

I make dinner, chicken and fries for Monkey, fries and cheese for Kitten, chicken, veggies and potatoes for Daddy and me. I put a bit of chicken and veggies on Kitten's plate, and some veggies on Monkey's plate, but I know they are unlikely to touch them. This is my good mommy habit. Sometimes they surprise me. 

The kids are in a mood to dance, so I dance with them to "Happy" and "Everything is Awesome", and then it is time for bed. Daddy takes the Monkey, I take the Kitten, and the next hour and a half, we read, sing, beg, scold, and finally, they sleep. I could sleep too, but I really need to finish the piece I was working on, and the floor needs its daily full sweep and mop, and the dishes need to be done, and the laundry should be moved over. We put on a movie and I get done what I can. I end up leaving the dishes for the morning. I know I will regret it, but it is almost 11, and I am exhausted and need to sleep. 

Reading this over, I think, what a dull person I have become. I used to read, to write, to craft more frequently, to keep up with a TV show or two, to leave the house now and then. With just Monkey, before the diagnosis, when there were just suspicions, I used to think that one day I would get back to being more like I was before kids. Then came the diagnosis, therapies, a second child, more suspicions, another diagnosis, more paperwork and appointments and constant vigilance. 

I love my kids, more than I can ever express. It drives me crazy, trying to deal with my own diagnoses, theirs, and still find some time for fun and family stuff. This fall, when Kitten is in preschool for half days, and Monkey is in grade 1 (!), I will perhaps be able to find a little time for myself. But I can't fish too far in the future for happiness. Autism and ocd and anxiety and depression, they just ARE. I can't make them go away, like it or not. There are moments of joy, though, and we get through it with laughter, and tears, and a lot of stimming. 

I have to find that joy, where we are now, day by day, not in some imaginary future when things are more settled or the kids are older, or I figure things out better. Day by day. This is our autism.

What does your autism look like? Link up a new or old post with myself or Jessica of Don’t Mind the Mess or let me know in the comments.

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.