#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.

Chock Full Bunker Punk Tour Stop

I'm part of an awesome community of Facebook page admins, many of whom also blog. Someone in the group (the lovely from Life with the Bearded J's) came up with an idea for a Bunker Punk Blog Tour, so here we are.

The questions:

What is your most prized possession? I could answer this a couple of ways. I could say my iPhone, which I (for the most part) cannot function without? I could also answer, more appropriately, I think, that my mind is my most prized possession. I've always known I'm an intelligent, strong-willed person. My intelligence has been used as a weapon, but it's also been used as a security blanket.

In the first couple of years of motherhood, I began to worry that I'd lost something up there - things just weren't coming to me as quickly, or even at all, sometimes. I was diagnosed with fibromyalgia, and later an Arnold Chiari Malformation (herniation of the cerebellum into the spinal column - which is a very simplified version of what's going on in my head) and I went into a depression, thinking that both would continue to affect my ability to recall, to spew random facts, to be able to react quickly and efficiently to a situation as I always had.

And it did, and will most likely continue to do so, but I've also been getting some of my quickness back, some of my zest - so perhaps it was the fibro fog and the chiari crazy creeping in, or perhaps it was being a new mom to two special little boys and working a 40+ hour a week, high-stress job (37.5 officially...but there were always hours spent off the clock doing my job as a reporter).

Again, we're talking about my most prized possession here - it came down to a question of should I continue to work through the confusion, the pain, the disorientation and dizziness, with all of the extra stresses associated with newspaper reporting, and eventually completely overwhelm myself and shut down? Or should I quit my job with no real plan except to rely on the fact that my boys are autistic and we've always been a low-income (typically a single income) household, and therefore qualify for SSI?

At first, there was guilt at utilizing their SSI to be able to stay home with them, not only for their well-being, but also for my own. People questioned it, asked what we would do, how we would make it - it made me question it, as well. And it certainly hasn't been easy, but it's been entirely worth it. My mind is coming back to me, with work - exercising it by writing what I want to write, being able to have a little time to read something for pleasure, not being constantly bombarded with additional stress to my family and home life, and being home with my precious boys - that's all done wonders for bringing me back to functioning.

How do you unwind after a long day? This is a hard one, because my days are all long - I may not have a paying job, but I work from the minute I open my eyes to the minute I shut them again. Being the president and CEO of Chock Full of Au-some is a demanding, full-time job overseeing a chaotic crew that includes a probably-autistic 23-year-old man-child and 4-year-old twin terrors, as I lovingly refer to them. 

My boys currently fall into the "severely autistic" category; their needs are high and near-constant. They're easy boys, though; I don't think, as a special needs mama, that I could possibly ask for better. They're typically full of joy, and wonder at even the smallest of things, and if I'm being honest, hearing their laughter at the end of the day is the best possible way for me to unwind.

Along with that, though, I need time to recharge as an adult and a writer - so I turn to Facebook and my blogs. Sometimes, I just write stuff that no one else will probably ever see, because I need to spit it out. I've been doing that for as long as I can remember.

I also read, but I hate not having enough time to devour sometimes even a sentence before I'm being called upon to do my motherly duties. I've always been difficult to tear away from a good book - ask my mother. So, rather than being a bear and getting grumpy at the constant interruptions, I've taken to only reading in the bathroom or at bedtime. Most of the time, when I'm ready to lay down, my eyes have already been drifting shut for a while and I don't have the energy to try to read.

Basically, being a mom has slowed down my brain-strengthening activities, I guess. I don't learn from seeing it in pictures, I form pictures from words on a page much better (which may be the issue in teaching the twins - I've been working on this, though!). So, to unwind, I like to work out my brain muscles.

What is one song that has followed you throughout your whole life? I've loved music since I can remember. I have a connection with it, it soothes my soul and can help me through the hard times. I can't pick just one song - every song has made an impact, I think in song lyrics half the time.

I can hear someone say something and a lyric pops into my head, and sometimes right out of my mouth. People don't always get what I'm talking about because I don't sing the lyrics - I can't carry a tune in a bucket and I'm completely tone deaf.

I have, over the years, found myself intrigued and maybe a little obsessed with certain songs, certain artists or genres, though. As a child I drifted from the pop and rock of the late 80s, to country and pop, especially boy bands, of the 90s. I've always tended to stick to what's current and popular, but I have no problems with listening to mostly anything. I've always been the one to take a step back and let others pick the music, because it doesn't really matter what it is, I can listen and appreciate it.

"I Think We're Alone Now" by Tiffany somehow became one of those songs I was obsessed with in my early teen years. My step-sister and I would listen to it over and over, we knew the words and sang it together, we bonded over that song. I haven't heard it in years, but occasionally I'll start humming it, and I can't help but smile.

I remember I shared a song with my first boyfriend, the boy I kissed on the school bus and playground, whose sister was my best friend. Every time I hear it, I remember that innocent, care-free kid love we shared, and I smile. Of course, my brain is stuck on "I Think We're Alone Now" and I know that's not it, but I just cannot think of it right now. If it comes to me, I'll come back and edit this!

During my teen years I turned to darker music, metal and punk. I dressed accordingly. The first impression I gave the boy who would later become my best friend? I was scary, dark, and totally not like most of the peppy, athletic kids, or the kids from the farms, who went to our school.

In college, I listened mostly to whatever my friends were listening to - which ranged from Christian rock to death metal and club mixes, because I didn't limit myself to one group of friends, and certainly not to one type of music, at a college that celebrated creativity and differences.

Lately I've really been enjoying Hozier (thanks to Punk Rock Papa for the suggestion, and Matt McAndrew for singing Take Me To Church on The Voice), as well Matt McAndrew's song Wasted Love. In reality, I listen to a lot of The White Stripes, Metallica, Audioslave and Rammstein because that's where Pricklypants' musical tastes lie - and the twins love the heavy metal stuff, too.

If you could give one piece of advice to new bloggers in your field, what would it be? I am a new blogger, but I can say with certainty that if you just stick with it, and don't get discouraged, you can only get better at it. The adage "Practice makes perfect" may not be true because perfection in the blogging world will never happen - and it's shouldn't, because we're all imperfect humans, and presenting perfection is presenting a falsehood. Don't expect to be the perfect blogger, don't expect to have hundreds of people hanging on your every word the first day, or week, or maybe even year that you do this, don't do it for the numbers.

I hate Facebook algorithms, but I don't stress it if no one sees my stuff. I don't need them to, not that I don't like them to see the things I'm posting - why else would I be posting it? But the numbers aren't what I'm in it for - I'm in it to maybe help someone else, maybe entertain them or make them smile, and to share our autism journey. I post what I want, when I want - because that's what it's there for, really - me.

Sometimes, when I notice that no one is seeing the things I'm putting out there, I get a little discouraged. That's probably a big reason I haven't really gotten into submitting pieces to other forums - I'm not really in the market for rejection right now. But when it's just my blog, when I'm just not putting forth the effort that I could be to get it to more people, that's not as bad as not being good enough to be published. Silly, really, considering I had 2-3 pieces published every day for nearly 3 years as a newspaper reporter - but those pieces weren't my thoughts and feelings, I didn't have anything to lose writing objectively about things going on with other people. I didn't feel judged.

So yes, my advice is to just keep writing. Write something every day, even if it is just a one-liner Facebook status update. If you don't work out the muscles, you can't hope to build them.

Now that you're famous, we need a quote from you. In everything you do, look for the balance - you can't be all good or bad, life is not black and white. Put in what you want to get out, because even if you don't get it back, at least you can say you tried.

That parenting moment

My friend Punk Rock Papa wrote a blog reflecting back on an important parenting moment, a rite that I think every parent goes through, at least once. That moment where you realize your child's life was in danger, that moment that eventually, because nothing bad happened, you can look back at and have a chuckle about. In that moment, though, your heart is in your throat and you can't hear over the sound of panic in your ears, pretty sure it's a heartbeat but it sounds like panic.

We've had one of those moments, well, two if you count the time I got a call about the neighbor's child. One balmy January afternoon (it was a crazy warm winter that year), I got a phone call from Pricklypants.

Him: Guess who was just here.
Me: Um, I don't know, how about you just tell me.
Him: Sheriff's office.
Me, panicking: Why? Are the boys ok? Are you ok? What's going on?
Him: Gamble got out and the UPS guy found him wandering around in nothing but a diaper.
Me: And how the (curseword) did that happen?

By this time I've got the attention of, oh, everyone in the newspaper office. Oops.

Turns out, Pricklypants had put the boys down for a nap, and was confident they were sleeping and all was well, so he was jamming out and folding laundry in the bedroom. He checked on them, they were still sleeping, so he went back to the bedroom to catch a nap himself.

Apparently while he was napping, the twins quietly woke up and were exploring, doing the things they normally do - jumping on the couch, wrestling, chewing on stuff, etc (they'd just turned 2). Well, we'd been having some issues with the front door latching, and it was a particularly windy day - the porch is basically a wind tunnel, and the front door popped open. Instead of closing it like they normally would, the twins decided to go exploring.

Gage (back) and Gamble (front) were rambunctious destroyers-of-rooms, explorers of the outside world, and chewers of toys. I can't be sure this was taken at the same time as "the incident" but it was probably close.

Later, I spoke with the officer who responded, who told me that he found Gage on the porch when he got here. Pricklypants didn't bother to mention that part.

But that was the moment I lost the desire to continue working outside of the home. My anxiety flared, and I began to work from home as often as I could get away with. That, among a long list of other items, eventually led to me quitting my job and becoming, well, a mimja (mommy ninja), or the president and CEO of the household...because stay-at-home mom doesn't really cover it.

I can look back now and not feel that same panic, maybe even have a chuckle, but at the time it was the scariest thing to ever happen to me. As many times a day as I shake my fist at the little boogers, ruing the day, I can't imagine a life without them, in all their crazy glory. There are many things I can imagine not having in my life, but my boys are not one of them. Even if I have no idea what our future is going to look like, I know it will be our future, intricately linked together by bonds that no one else can share with my boys.

So even when they do daring things that make me want to lock them in a padded room and only take them out delicately wrapped in bubbles and fluff, I love them. They don't see the dangers, and I've often made the mistake of not seeing dangers, myself, but these two precious boys, I want to keep them safe, I want to make sure nothing bad ever happens to them.

I know that's unrealistic, but that parenting moment, the one we all have, paired with my anxiety and their autism - that lack of a sense of danger, exquisite curiosity and their little engineer minds - that has made me overly overprotective. I am a helicopter mom out of necessity, from experience, not because I don't trust my 4-year-old autistic boys, but because I don't trust the rest of the world to do my job, to keep them safe.

Counting the Blessings

I wrote a guest piece on a friend's blog counting my blessings that my 4-year-old twin boys have autism, because even with all of its challenges and demands, especially because of those things, I suppose, I've had to become a better person. I've had to adapt. I've had to learn a whole new way of doing things and thinking about things.

I wrote another piece on a brand new site, because All We Need is Love.

I've obviously been reflecting lately. Reflecting on the gains and losses of a life with autism. I've been thinking about the things we could have had, if only. I've been pondering the what ifs, but more than that I've been contemplating what's to come.

My boys have a bright future, regardless of their autism, their limitations, their differences. They have limitless potential, there are endless possibilities and directions in which they could take themselves. They'll need help along the way, of course, but that's my job as a mother, and I'm blessed to be capable of giving them help.

I don't like to think they can't do something because they're autistic - and yet I phrase it that way sometimes. Often I phrase it as they won't - as in they're refusing, they're stubborn and obstinate. That's not always the case, though. They may, with help, time, patience, and most of all love.

I'm hoping with time that will become my initial thought - that rather than saying they can't, or they won't - one day it will naturally occur to me to leave that open - they might, they could, they don't yet - that yet is always tacked on in my mind, in the conversation that is playing out days, weeks before someone else brings it up, before anyone else has to ask.

Growing up, even up to the day I found out I was pregnant, I was adamant that I never wanted children. I had nightmares that I'd have a baby and be the world's most horrid mother, forgetting to feed the thing and losing it. Turns out, my kids would never let forgetting to feed them fly. They're like clockwork, and they're banshees when they're hungry - I have no idea where that may have come from, I'm not a total crank when I'm hungry or anything...it definitely wasn't me who stabbed Pricklypants in the hand when he went for a bite of my food (days before we found out I was pregnant...I'd blame the hormones, but no.)

I'm no longer paranoid at the prospect of losing them in a crowded place - I don't take my eyes off of them for a second if we're anywhere other than home or a select few other locations where I'm comfortable enough with our surroundings to breathe a little, and sit down.

That's probably the reason I've lost 34 pounds in the last year - if we go somewhere, I'm constantly trailing behind one or both of the boys in true helicopter mom fashion, but it's totally necessary - other autism parents get where I'm coming from on that front, I'm sure. But if the boys weren't autistic, if they weren't constantly on the move, trying to figure out how things work (my little engineers) or how they taste, I probably wouldn't have lost that weight, because I didn't really change much else, except to add quite a few walks throughout the summer months.

Because my boys are who they are, because they're quick to forgive, because they're quick to love, because they're  nearly always able to make me smile, even if I was livid five seconds ago because someone smeared poo on the wall, or bit his brother, or scratched/pinched/hit/bit me again - because Gamble and Gage are Gamble and Gage, being a mother isn't nearly as hard as my nightmares pre-parenthood made me believe. I'm blessed.

And I don't always agree with the adage that "God never gives more than you can handle," because some days I'm not sure I can handle this. Some days, I'm at a loss. But for the most part, I know I can do this because I love my boys fiercely, and that's a blessing in my book, because I never knew I was capable of this kind of love. 

I'm blessed that even with all of the stress, the annoyances, the aggression, we're able to sit down as a family, laughing and loving each other the way we understand how to, for now. It's a blessing that we're able to learn as we go, that our boys can give us the time that we need, because they need just as much, if not more, to figure it out, too.

As a parent, I worry so often that I'm going to screw it all up. But at the end of the day my boys are happy and healthy, they love me unconditionally and I love them more than life itself, and so long as they don't think I'm screwing it up, so long as they can forgive me, that's a win.

It doesn't take much for me to remember that other people's opinions don't affect us in any real way, because even though I want feedback, I want suggestions - I want them on my own terms, without judgment. I don't need to hear "Oh, you're such a great mom, you're doing such a great job!" all the time, because I know that's not 100 percent true. We're doing what we can, what we know how to do - we're learning, day-by-day, minute-by-minute - just like any other set of parents. I don't mind being given constructive criticism, so long as it isn't posed as judgment.

Yes, we have additional challenges - that mostly just means that what worked for your neurotypical kid, like that potty-train-him-in-a-week thing, probably isn't going to work for our very-differently-wired boys.

Their difference, their extraordinary uniqueness, that's a blessing, too. Because I know my boys are different, it's much easier for me to receive advice and not feel obligated to follow it, it allows me to wage whether it truly would benefit us or not, and to know our family well enough to know what works and what doesn't - that's a blessing.

Ms. M said something when she was here last week, about how great it is that we know what works for the boys, and that I'm able to communicate that to others, to express ideas of ways to help the boys' teachers and therapists get through to them a little easier. It's funny, because I usually feel like I have no idea what's going on...but when it comes down to it, I guess I do have a grip on things, even though it is organized chaos.

And while I'm counting blessings, I'd like to say just how blessed we are to have the people in our lives who are present; because while I'd love to have more of them, it's quality, not quantity, that really matters. And we're blessed to have not only the people that we have here, in our little hometown in Ohio, but the community we've found online, other parents who have children who are differently wired, who can give advice without judgment because they know the battles, they know the defeats and the triumphs, they understand what goes into parenting a child with severe needs, a child who can't communicate his or her basic needs, let alone their wants or hopes and dreams.

Finding the online autism community, other parents who have basically been there, done that (because again, no two kids are the same - the twins are a perfect example of the idea that what works for one child may not work for the next) and have the scars and broken furniture to prove it, that's been immeasurably helpful and has given me a greater level of support than even the support group friends and I started here in our county for parents and loved ones of those on the spectrum.

Right now, I'm blessed that everyone else in my house is sleeping, and I know I should also get to sleep, because who knows how early the boys will wake up having gone to bed before midnight...but the quiet is nice for writing, even if there are still two TVs going and the furnace is working overtime trying to combat the bitter cold temperatures - there's no vocal stimming from the twins, no demands from Pricklypants, and once I finish up this post, I'll make the rounds and turn off the TVs, kiss foreheads and tuck my boys in tight for the night, and once again, I'll count my blessings, just like I try to do every night before I go to sleep - when I can turn off the what ifs, the what did I forget to do today, the never-ending to-do list running through my brain, long enough to just stop and enjoy being able to count my blessings, to have blessings that I can count, to reflect on how lucky I really am, even with the day-to-day challenges, the near-constant chaos and what seems to be an endless well of setbacks.

At the end of the day, I have loved and I have been loved, regardless of whether the dishes got done, or the muffins got baked. I'm blessed because I am loved, and because I love, and blessed that my ineptitude's do not condemn me. My mistakes, my failures - the things that have happened in the past - they do not define me, and for that, I am blessed.

The First Snow Day of 2015

In Ohio, we had the first significant snowfall of this winter yesterday into this morning - our local school system cancelled school for the day, so the twins didn't have preschool, either. Kind of nice, since neither of the boys went to sleep before midnight last night - our local Walmart has been out of melatonin for ages now (at least a month). Since they'd gone to bed so late, they slept in a little.

For those of you who don't follow our shenanigans on Facebook, my 4-year-old ASD twins sleep horribly most of the time, melatonin or no - so when Gamble slept until 8, and then went back to sleep after his daddy put him in bed with me, and Gage slept until 9, it's a good day. Their normal wake up time is about 5 am, regardless of when they go to sleep. Kind of makes me wonder if they have too-vivid dreams and wake up from them with the melatonin, because the last several nights without melatonin have been pretty solid sleep, even if they don't get to bed until 11:30/12:30 they're actually sleeping a solid 7-8 hours.

Anyway, we had a snow day today - no school - one day back from their almost month-long Christmas break. I think that one day back to school worked wonders for the boys, though - they have been much better behaved today than any day of their break! Before their grandma brought them their second trampoline this morning, they were taking turns jumping, Gage was dancing around with his 'raver wand' and Classic Rock was playing on Pandora while I washed dishes, scrubbed cabinets and generally cleaned up from their breakfast mess.

This isn't my every-day cleaning ritual, to say the least, but we were expecting our first visit from a home-based preschool program (we'll take whatever extra help we can get with them!) - so for 1-2 hours every Tuesday, Ms. M will be visiting and working on some things with us - including using utensils, not throwing food on the floor and trying new things - I specifically asked if she could come during their lunch time for this reason. We'll also work on some sensory stuff, and they should be starting occupational therapy at their preschool soon, too!

Along with the home visits, we get the services of a behavioral therapist - which, technically, we've had since they started Early Head Start two years ago, but I didn't realize that even if they weren't still enrolled with the EHS, we could utilize our behavioral therapist, so I'm hoping it's the same lady, because I really liked her. And Ms. M said she should also be able to provide some extra tools to help with meal times, since the boys are enrolled in her program.

Honestly, before she called me to ask if we'd like to start home visits, I had no idea the boys could be enrolled in two separate preschool programs. So now they'll have 12 hours a week at their special needs-typical mixed school, and they'll get 1-2 hours a week extra at home. I'm also hoping maybe we can get some extra in-home therapies through our insurance. And I need to set up speech and OT for this summer so they don't lose the progress they've made.

Throughout the day Pricklypants and I discussed the possibility of getting the boys outside to play, and decided we wanted to try to take them sledding. We made a game plan, gathered materials and got everyone ready with triple layers, hats and gloves, and blankets for when they got back in the car...We took two vehicles, knowing that Pricklypants and Uncle M would last much longer than the twins and I (or, me, as it turned out).

I hate the cold. It makes me hurt, it takes my breath away - cold is a bully to me. And really, I wasn't that cold in general, but I had thin, fingerless gloves (only pair I could find) and in the 5 minutes between getting out of the car and getting down the hill, I couldn't feel my fingers, couldn't bend them without immense pain (an hour later they still hurt).

I also couldn't breathe, and carrying my almost 40-pound son up a hill, through the snow, wasn't helping. I let the boys go down the hill a second time, and decided I was in too much pain, and it was too cold, so we walked back to the car (y'know, carrying the twins, because they steadfastly refused to walk) - well, the twins threw an absolute fit about getting back in the car, they weren't ready to leave - but seriously, I couldn't handle it any longer. So I guess next time, they'll have to go sledding with daddy and uncle, because mama doesn't tolerate cold.

Gamble was worn out, Gage almost took a nap but we got home right around the same time he fell asleep, and I forgot to turn the TV off before we left earlier. Nothing wakes Gage up faster than hearing the TV, so of course he was wide awake as soon as I opened the front door and he heard Johnny Test. Gamble napped, though.

Not enough caffeine in the world

I don't know how people do this no sleep thing for years...I'm basically falling apart - every muscle in my body hurts from a lack of sleep. My brain's not too happy, either. It doesn't help that I'm supposed to lower my caffeine intake...

We have been on high alert for aggressive behaviors with the boys - they need some time apart, but other than taking one with me to the store, there aren't a lot of options until school starts back up and they get that 12 hours apart through the week.

Even with their trampoline, sit-n-spin, raver wand (that's what I'm calling it, it's something prismatic or whatnot...but it's essentially a raver's dream toy lol), bubble machine, finger paints, soft new blankets and plethora of toys, there is no keeping these boys pleased.

It's not cold enough to freeze, but it's too cold (and wet) to go play outside. At least it's Sunday and in a little over 24 hours they'll be getting ready to go back to school! But for 3 weeks they have been stir crazy.

Even with all that, I have mixed emotions about them going back to school, because their sleep schedule drains all of us - up from as long as 2-6 some nights, and then to get back up at 7:45 to get ready and leave by 8:15 - that wrecks every one's day (though they do nap better when they have school)

We've tried a later bedtime, they're ripping every one's faces off by 10 pm because they're so tired (naps are hit and miss these days), but then they're back up after 4-5 hours...we cannot keep this up - my chiari, my migraines and my fibromyalgia are all screaming at me every day. And to take a nap is basically a crime against humanity around here - if it's not the boys it's their father. And because I don't whine at every ache and pain like he does, then I must not be feeling it - and he doesn't need sleep so he doesn't at all get my need to nap on a daily basis...he also doesn't usually end up staying up with us - he falls asleep watching TV in the bedroom while I'm refereeing what appears to be an MMA fight in the living room...

That's not to say their dad doesn't help - he gets up with us, helps with breakfast and if I can yell loudly enough to get his attention/wake him up, he'll come help with whatever...but he doesn't necessarily know when he's sleeping, I've noticed.

At any rate, I've already told him I'm going back to sleep and he can play referee today - my eyes are burning, my stomach churning, my head is hurting and I just don't think I can handle another day running on just 3 hours of sleep.

Here's hoping 2015 brings better sleep for us all...because I've never been a morning person, and on 3-5 hours of sleep I'm even less of a morning person.