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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.

Tea and bitterness

All of the end of year stuff at Monkey's school is happening, with really mixed emotions for me. It has been a difficult year in some ways, though Monkey himself has been fairly oblivious to the problems, which is as it should be, really. He has made good progress this year, especially in language and communication. With the increased ability to express himself, his self injurious behaviours have decreased both in frequency and in severity. He is a happy boy most of the time. There are still many challenges, of course, and he still gets frustrated and angry and loses his speech now and again, throwing things and banging his head, kicking, biting and scratching when he is especially angry. Most of the time, though, he is able to tell us something is upsetting him, even if it isn't always clear what that something is.
 
Most of the problems have been grownup stuff, to do with funding, his school, which is also his service provider, and his bus driver. It hasn't been disastrous, just grinding and stressful. We will be moving this summer, and finding him a new service provider, which means renegotiating with the government agency that funds his therapies. That is not going to be fun, but is necessary. There have been issues with trust and expectations with how his therapies are administered. The SP at one point called child protective services, due to concerns about "hygiene and safety" surrounding his ongoing fecal smearing. I won't go into detail here, suffice it to say, the CPS worker found no concerns, nor reason to open a file. The SP still refused to move Monkey's therapy back into the home, citing concerns about the risks to his therapists, their employees. Funding here is contingent on home based therapy. In the end, the funding agency agreed to allow his therapy to continue on site at his school until the end of this term (June 27th), after which we will have to find a new provider, given that no amount of cleaning, negotiating or reassurances has changed the mind of the SP on coming into our home.

This has, as you might guess, left some feelings of betrayal and disappointment. He has done very well with the current SP, but they can't be bothered to accept his level of challenges.
We will be moving this summer, and finding him a new service provider, which means renegotiating with the government agency that funds his therapies. That is not going to be fun, but is necessary.

Meanwhile, the end of year festivities are a little bittersweet for me. The parent appreciation tea was yesterday. The kids did a little singing show and there was cake and a slide show of the children in his class. I almost didn't go. I didn't want to be civil and polite to the people who had been so adversarial and dismissive of me so recently.

But for Monkey's sake, I bundled Kitten and myself into the car, and was at his school at 10:18, three minutes late, but we made it. For all the misery this year has brought me, the look on his face when he saw me in the audience was worth everything. The fact that he still sat through the show and didn't jump up and run immediately was incredible. But he just kept grinning and pointing and singing now and then, and not until the last note of music was played did he leave his seat and run up to hug me. He was so happy to see Mumum at his school, so pleased to show me the pictures and take me to say hello to his teacher, aides and therapists. He participated. He showed self control. He SPOKE to people. He was amazing.
I am really am glad I went. After all, this part isn't about me. This about celebrating our kids, and all their hard work. I couldn't be more proud of my little Monkey.

When the unthinkable happens.

Every parent I know has the stories. You know, the terror moments, the turn your back for a moment and where the hell is my kid moments. Some have many, many stories, but there is always one that plays in the mind like a looped video, that pivotal moment of pure panic.
For us, it was an incident while camping.
Last summer, the Monkey was four. He was entirely non-verbal with strangers then, although he had a few words for us and a lot of scripting of TV shows. He couldn't swim, but we were working on it. He had more of a fascination with the public toilet building than the lake, but he generally stuck close to the campsite. We stuck a bear bell on him as a tracking device, and with 6 adults and a teenager present, we didn't really think there was much chance of losing track of him. His 18 month old sister, Kitten, was content to play in the mosquito shelter with rocks and sticks, and just had to be watched so she didn't consume as much of the great outdoors as would fit in her mouth.
I was digging in the car for lunch stuff, when I noticed that Monkey wasn't in sight. I didn't worry at first, I just called out "Where is Monkey? What is he up to?" No answer for a moment. "Who has Monkey? Who can see him?" A little apprehension growing. I stood up to look around and didn't see him. Kitten was in the shelter. Hubby was watching the fire. Various other members of our group were hanging around, reading, talking, doing what you do on vacation.
Monkey wasn't there.
A quick survey, and it was clear that no-one had seen him for a few minutes. NOW I was starting to panic. Our spot was right across the parking lot from the lake, and while he couldn't swim, Monkey was fascinated by water that wasn't confined to tubs and sinks, and he loved playing in the sand.
The group mobilized to search. Two headed for the beach, which was crowded and noisy and hot, and I couldn't see him going into the water alone, but...I couldn't rule it out. Two more headed towards the toilet building he found so interesting. The teenager and another adult checked the lightly wooded area around the campsite.
I stayed at the site in case he wound up back there, but also because I was nearly immobile with panic at that point. I couldn't hear his bell. I couldn't see his neon yellow t-shirt. I had yelled at him for wandering off too far the last time I had seen him. I hadn't kept an eye on him the whole time. I hadn't been careful. I hadn't been a good mom. What if he had gone into the lake, or fallen in the woods and got hurt, or picked up in the parking lot by a stranger, or fallen in the outhouse (yeah, I was panicking all right).
I am told that it was a little less than 30 minutes when the teenager came back with him. It felt like forever. It felt like I was stuck in a whirlwind of fear for hours.
For the record, he had managed to ditch his pants (that the bell had been attached to), crawled up just under a jacked up truck in the parking lot, and was playing with his Hotwheels. A lady was found with him, talking to him, trying to get him to tell her who he was with, where mummy and daddy were, trying to get him to come out. He was not responding at all, of course, just humming and rolling his cars along the inside of the truck's running board. She was a little annoyed and frustrated with him at this point, and her raising her voice was what led the teenager to them.
So much hindsight here. Should have put a tag or medic alert bracelet on him. Should have made sure someone was assigned to watch him, with an alternate to be tagged when the watcher had to do anything else. Should have found better ways to block him from getting out of the site. It could have ended very, very badly. If he had headed for the lake. If no one had noticed him, and the truck had pulled out with him under it, so close to those big tires. If he had fallen and hurt himself, and couldn't tell anyone who he was or where he had come from.

Honestly, though, nearly every parent I know has a story like this. A child who wanders off in a public area. Who dashes into traffic. Who takes off out an unlocked front door, an unlatched back gate, around the corner of a building. Most of the time, the child is found, rescued, or retrieved. Most of the time, parents just internalize the fear and guilt, keep a closer watch, or put more locks and safeguards in place, and vow that it will NEVER HAPPEN AGAIN. But it does happen again. And we live, learn and cope.

Or the unthinkable happens. A child is kidnapped off a playground - falls in a creek behind the house - suffers from exposure - and is found too late.

Three times this past week I heard of a child that wandered with that unthinkable result. Whether someone in a moment's inattention, thought someone else was watching, or that the child was safe where they were playing, or a door was left unlocked, those parents now have to live without their child. And live with the guilt of what-if and why-didn't-I, and what-could-I-have-done.
And there are plenty of people who will encourage that guilt and vilify the grieving families for not watching their kids closely enough. For taking their children to places that are "risky". For being careless. Especially since these were all special needs kids, autistic children who were always more at risk. Journalists and bloggers, strangers on the street and the internet, judging these parents as guilty and responsible for the death of their precious, irreplaceable child. The "well, you should have watched her more closely", "you should have known he would do something like this, and been more careful", "why did you take her/leave her there when you knew she might wander off?".

But you know, these are the same people who point and snicker at a child who is acting differently from the other kids in the mall. The same people who sneer at my son's harness (why do you treat him like a dog?), or his stroller (why don't you make the lazy brat walk?), or shake their heads at stories of kids caged, locked in their rooms, confined to their houses, tethered in their yards and say, why do people treat their kids like that? Not that any of this is okay, but really, you walk a fine line as a parent, especially when your child is not typical. You don't want to restrict your child's life, or limit their opportunities to experience the world, or spoil them with overprotective measures, but you are always afraid for them, wondering what you should do, what you can do to keep them safe in a world that doesn't understand them.

I get it. I know that fear. I wish I could keep my children 100% safe all the time. I wish I could be sure that they were supervised and monitored 24/7. But I have to sleep, use the bathroom, cook, keep the house at least minimally clean and liveable, and sometimes I look away for a minute or two. I can only hope that the measures I can and do take to keep them safe will be enough. And on those days when they aren't enough, that there isn't a tragic ending.

To the parents who have lost someone so precious and loved, I grieve with you and for you. No parent is perfect, don't listen to the guilt mongers and blamers.  I hope you can get through this, and hold on to the hopeful and joyful memories of your child. Know that for every person who doesn't get it, there are hundreds of us who do, and who are out here knowing how easily it could be our child next.
 THIS IS NOT YOUR FAULT. YOU DID NOT MAKE THIS HAPPEN.

And to those self righteous assholes who think they could have done so much better, who jump on stuff like this to get people to read their blogs and articles, SHUT THE HELL UP.


  

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.