#1000Speak It's never too late

The idea is to write about compassion; that's something I've learned more about in the last 4 years than I thought possible, living with autistic twins and their possibly autistic father. I don't like the textbook definition of compassion, though, it's the "sympathetic pity" part that gets me.

Compassion, in my mind, is being able to think about how what you're doing or saying is affecting others, to put yourself in their shoes and consider how they might feel. Compassion is putting aside your own selfishness for a moment and caring about the rest of humanity. The world could certainly use a little (or a lot) more compassion.

I don't often write about Pricklypants in a positive light, and that sincerely needs to change. In the last four years he has grown, and while it may be slow-going, as with our children - all progress should be celebrated.

Pricklypants has learned so much about #compassion from our boys, and probably myself. He's never been the type to think about how his words or actions might affect others. Recently, he's been advocating more for himself and for our family, speaking up when someone uses that word or speaks unkindly about those with intellectual disabilities. He's 23 years old and learning compassion, a little bit at a time, starting with the core of his heart - his children.


A little rough around the edges, okay, a lot rough around the edges, Pricklypants is not everyone's cup of tea. Sometimes he's not even my cup of tea. There are days when just hearing him breathe makes me want to punch walls (because I would never physically harm him - as my friend The Snarky Hippie reminded us on her personal page, domestic violence is never okay, and making it into a joke helps perpetuate the cultural norm that it is okay for women to be violent towards men).



I've always been a compassionate person; I used to be chock full of empathy, so much so that I would walk into a room and my mood would change with the atmosphere. And I have a soft heart and hate to see people suffer. Pricklypants is a bit more selfish, but he's learning and growing, and that's what really matters.

I used to be the type of person who would hold all the negative stuff in, not wanting it to affect others. That changed when I got pregnant - now, if I have something to say, I'll say it. Compassion be damned. I'm working on getting back to that sweeter, more forgiving version of myself, but I also know that I will need some of this armor for many years to come. #AutismParenting is tough.


Our families, in particular, lack compassion for Pricklypants - probably in large part because for the first part of our relationship, I lacked compassion for Pricklypants. When you get pregnant unexpectedly, and you never wanted kids in the first place, you might be a little bitter. And you might take that out on your partner.


Compassion isn't something that many people have had for Pricklypants because they see his behaviors as just that, behaviors, rather than symptoms of an underlying issue, most notably autism. He doesn't have an official diagnosis, but he fits the bill. For that matter, so do I.

Every day I watch him, and I watch the twins, and I see the similarities, and then I look in the mirror and it all pieces together. Our children are a compilation of the best and the worst of ourselves, and sometimes that makes us their biggest cheerleaders, and other times it brings us to expect more of them than we reasonably should. They need more compassion, because the movement begins at home and spreads like wildfire as we send our children out into the world to sprinkle their own compassion around.

I know I'm guilty of placing unreasonable expectations on those around me because I, myself, am completely capable of that, whatever that is. I suppose I've always lacked a compassion for those less intelligent than myself, at least that is what my elementary principal told my mother. That's not it, though, and if you know me at all, you know that I'm a kind, loving person. I just get impatient when I know something and feel someone else should also know. It's not intentional behavior, and I have been more careful to try to filter that, because compassion.

Having autistic twins has expanded my compassion, however. My impatience with them does flare up, I mean, seriously, they can be incredibly frustrating. But my patience these days outweighs my impatience, and I'm working every day to remind myself to see things from their point of view, to have compassion for the things they struggle with, and the same goes for their father.

Compassion in a world of perfectly imperfect souls is necessary; tolerance and kindness and patience are all necessary if the world hopes to keep surviving. The longer the bad seems to outweigh the good in the world, the longer human beings continue to disregard each others' humanity, the longer we all struggle, the harder the road is for all of us. A little compassion can spread a long way - it starts with you, and it's never too late.

Day in the life: Autism style

Sometimes I feel so overwhelmed by all that we have to get done in a day; and then I look back and feel like I've accomplished nothing at all. Every inch is a mile around here, every time we walk in or out the door we battle with the boys' distaste for transitions.

So small things, like a simple check-up for Gage's ear infection, feel like major things. The fact that tomorrow the boys have school, Pricklypants has a dentist appointment and Gage and I both have a check-up feels like we're about to climb Everest.

But it's not just that they have school, it's that I have to feed them at least once before I take them to school, which is sometimes just a lesson in futility because they throw it all on the floor, anyway.

After that, I have to get them dressed and wrestled out the door (some days are easier than others, Mondays are always horrible). Getting them into the car is almost always a breeze, unless they're too busy admiring nature, or the trash can, or licking salt off the side of the car.

And then there's the banshee screaming that happens as soon as our front tires hit the road. It gets me every time, too. For approximately 1/4 of a mile, until we get to the church. And the second set of screams as we turn onto the next highway less than half a mile down the road, and again I'm jumping out of my skin, my heart skipping a beat - terrified that they're somehow seeing some impending danger that I've missed. Gamble starts it - sometimes Gage joins in, but it's always Gamble who starts it. It used to be Gage.

The remainder of the 10-minute ride to school is peaceful, we blare the music and "sing" along. Some days we get to school and they're giggling and excited to be there, and other days they throw themselves on the floor, covering their ears and refusing to move. Those days exhaust me.

Those days are usually their best days in class, though. The days when they wake up at 4 am and don't go back to sleep, or the ones where they fight me extra hard about getting ready or eating their food. Those days they smile, they cuddle with their teachers and use gentle touches.

And then I rush around for 2.5 hours trying to get done all the things I never get done with two 4-year-olds tagging along, like going to the post office, grabbing a coffee, trying to find suitable carpet for their room, etc. Or I do the grocery shopping, because it's nice to go without anyone else. Some days I just go home and veg out and catch up on TV, though, because all I really want is to go back to sleep. Sleeping while the twins are at school is out, though - I've tried it. Between Pricklypants, my anxiety that I'm going to sleep through my alarm and miss pick-up, and the fact that any time I try to take a nap people choose to call incessantly, there is no napping during school hours.

Then I go get the boys from school, usually taking 20-30 minutes to get them motivated and helping with their things - holding out a coat and asking if they're reading for 5 minutes while they snuggle up with their teachers. Don't get me wrong, I'm glad they like their teachers, and it's a good time to chat and catch up (because heaven knows I'm always misplacing the communication notebook, and who has time to sit down and write in a notebook, anyway? Why aren't we emailing?). That's something I'm going to miss when we start busing the boys (hopefully next week).

I get them out and into the car - this is one of very few places where we use the handicap placard. For the most part the boys are very manageable in public - they don't tend to wander too far from me before stopping to look for my hand, but Gamble's been known to decide to run off in the opposite direction as his brother and I. So, rather than risk the chaos of the school parking lot in the morning, it's much easier to park without having to cross the paths of any other cars while attempting to get the boys to focus on walking and not just touching the cars and licking their hands to taste the salt, (although they do that in the summer, too, as well as to the inside walls...so maybe not so much tasting salt? Oh the mysteries of autism.)

Then we go home and eat lunch, which I prepare and dole out in small amounts for less waste, while trying to do hand-over-hand with both of them simultaneously. And then there's clean-up, with them resisting me every step of the way because they're just not done eating, darnit. They get ushered into the living room, cups delivered. This is also when they get their trampolines, because otherwise I don't get a moment to breathe, or go to the bathroom, or sit down (not on the floor), at least this way I get almost exactly 10 minutes.

Following this is the epic struggle for nap time, which usually lasts about 2 hours, during which we play, read, wrestle, tickle and cuddle to wear them out. Some days I can leave the room before they're completely asleep, but most days I end up cuddling them to sleep one at a time, and by the time I get one to sleep and try to go take a nap myself, the other is waking up. Did I mention they're often up before the sun?

After nap time I usually clean up the kitchen, do laundry and let the boys jump while they watch DVDs. Then I make dinner. Sometimes they eat it, other times they play in it and create more messes for me to clean up. And then the clean-up resistance, followed by cups and more jump time - they could make a full-time job of it, really.

Not long after dinner we do a sensory or crafty activity, a snack follows. Some nights bath time, but not every night because they have dry skin. More jump time after baths. Then we start winding down, the trampolines get put up for the night and we watch a movie (ok, I may be hiding in a blanket fort playing on my phone while they watch a movie for the millionth time).

And then it's time for melatonin. I've learned that anything before 9:30 is absolutely a bad idea. They will wake up before 4 am, they will be tyrants and it will not be fun. I'm thinking 10 pm is the prime time because they tend to sleep later, but there are no guarantees, autism is a fickle mistress, after all, in the words of the Great Autism Daddy.

Once they finally fall asleep - sometimes as early as 9:30, sometimes in the wee hours of the morning and anywhere in between, all I have the energy to do is flop into bed. Funny how I always manage other things along the way, though, like picking up laundry, or throwing away trash, rinsing dishes and wiping up messes. Those things do go undone, sometimes, because I just don't have the energy to do it - yet again - in 6 hours.

Then Pricklypants wants human interaction, someone to play an Xbox One game with him, or to watch TV with; we've been together 5 years, we're both in our 20s, but we're already an old married couple who can't think of anything more exciting than catching the latest episode of whatever show is on that day - everything from The Walking Dead to Game of Thrones. 

And here is is, midnight, and I'm just getting a little time for me before I go to bed. Let's hope the boys don't decide 4 am is a good time to wake up two days in a row!

So while some days, I feel overwhelmed at the thought of getting out of bed (thank you depression and sleep deprivation), other days I can't wait to see what these crazy boys have in store for me. They're my motivation, because I just kind of have to - I have to keep going, I have to meet their needs because they can't meet them on their own yet. Plus, every day I get to see their wonder in the littlest of things, and their joy is infectious.