Communication is critical

The silence here is deafening,
all the things we've never said.
I close my eyes and try to breathe,
but it's pounding in my head.

Communication in a relationship is critical. My relationship with Pricklypants (the twins' father) doesn't always have a great connection in the communication department.

Communication with the twins, that's even more difficult. Living in a house full of people who have trouble communicating their needs, their frustrations, their wants...it's a challenge, and some days, I just don't feel up to it. Some days, if we're being completely honest here (and isn't that the point?), I do the bare minimum, and I feel guilty about it every. single. time.

But when that's all the energy I have, well, that's all the energy I have. Trying to get that across to Pricklypants is like ramming my head into a brick wall - which is usually what I end up feeling like doing. But the thing is, he feels the same way about talking to me. It must be both of us then, right? We're both dysfunctional in the communication department?

Kind of crazy, since I have a bachelor's degree in writing, minor in communications. I wrote as a newspaper reporter for two and a half years. It must just be that I can't talk to him, maybe because he never hears me. Maybe because what I hear from him, isn't what he's really trying to say.

And the thing is, parenting takes communication. It takes two parties being able to come together to make a better life for the two little beings they created. Pricklypants and I are so far apart on what to do when it comes to the twins, and it gets frustrating. He just doesn't get that these little boys are different than he was, they're different than I was, and there's a better way to do it than our parents did it - no one is calling them failures, Pricklypants and I both vaguely resemble functional, independent adults (myself more than him, obviously) - but we know something's up, and there are ways that have been proven to work for other families that I'd like to try for ours, for the sake of our kids. Every step forward isn't just a fight with the twins, it's a fight with their dad.

It's exhausting. Growing up, reading teen romance novels, I got this idea of what love and marriage would be. This is not it, but let's be realistic, that kind of romance is fiction, it might be based on something tangible, Pricklypants and I are not married, we've procreated, we've been together for nearly 5 years, lived together for 4 and a half years...But let's not forget that Pricklypants and I only dated 3 months before I got pregnant. He hadn't even graduated high school. We didn't build a relationship, we dove headfirst into it without taking a breath; we're not ready to make another lifetime commitment - we've already got the kids.

We don't have a perfect relationship, and most days we probably wouldn't say that we have a good relationship, but it works for now. We're live-in-the-moment kind of people, anyway. But if we expect that this is going to continue to work, we're going to have to work a little harder - communication, passion, parenting. It's been a circulating conversation for years now, we need to find some common interests, some time without the kids. That's the hard part, really.

I'm hoping we'll be able to start doing that. Pricklypants is possibly moving to full-time, so he'll be off two nights a week, and I'm hoping to utilize some respite on those two evenings so that we can do something as a couple. We need to work on us, if we're going to work as a team in this parenting thing...Now to get Pricklypants on board.

The good days

The good days seem fewer and farther between than I imagine they should be; but they are there. They're the rays of sunshine on your face after a particularly bad downpour. They're definitely much needed, a reminder that all the work, all the stress and the tears and the fear that we experience as autism parents, it's worth it. Every single second of it, though sometimes it feels like torture for us and for our children.

No one around here has been feeling the greatest. I ended up at the emergency room over the weekend because I was dehydrated and it had turned into splitting pain in my head. They gave me some anti-nausea meds and 2 litres of fluids and sent me on my way. The twins and Pricklypants didn't have it that bad, but they were all still not feeling the greatest. I kept Gage home from school to give him an extra day to get back to his usual overactive self, apparently that's how the school likes him.

So when today was one of those good days, it was a pleasant surprise. A much-needed bit of warmth to ward off the doldrums of a couple of chilly, sickly fall days.

First off, the twins slept all night, until 7 a.m. I didn't sleep well, but I wasn't upset about it, even though I knew a nap was unlikely, with keeping Gage home, because it meant that they slept well, and were hopefully feeling better.

We got up, the boys ate breakfast, then I threw together Gamble's lunch, got him ready and off to school.

Came home and had some cuddles with Gage, worked on ABC's and played a couple of games on the iPad. I left him to watch a cartoon while I did some things (mostly Facebook, let's be real - there was some laundry, but not much else). Then it was lunch time, so we shared some ravioli and a PB&J. Got cleaned up, more cuddles - it was a dreary, gray rainy day here, what better than cuddles and cartoons for a sick day? (It was supposed to be the twins' make-up field trip day...I'm not looking forward to when we actually get to take that field trip.)

And then, of all things unexpected, Gage got on the couch with me, and took a nap. I may have caught a catnap before I got up and went to get his brother from school.

Get to the school and Gamble's Mr. Bigman with his glasses on for 45 minutes, no fuss!

So he wears his glasses out to the car, to the grocery, through the grocery while he pushes the little cart (with lots of assistance, but it was his first try!) - he did so awesome, I was one proud mama!

He finally took his glasses off on the ride from the store to home, but when we pulled into our driveway I put them back on, massaged his hands and got him out of the car...he lasted another 15 minutes at home, but took them off while I was cooking dinner, and has refused to let me put them back on (maybe because when I tried after dinner, Gage walked up to him, gave him a head tilt like 'wtf?' and walked away...). But he still did great today!

It's been low-key, but those small successes, and the one-on-one time with Gage all day and Gamble at the grocery, made this a great day. In autism life, it's the little things.

#WorldMentalHealthDay

Today is #WorldMentalHealthDay, so let's talk about it. The things no one likes to talk about...the things we tend to hide, because we don't think other people understand. And some of them may not, but one in four people are affected by mental illness, and the rate is much higher in my house, and in my family, in general.

(Source: https://healthnhappyness.wordpress.com/tag/mentalhealth/

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I had social anxiety from a young age, probably stemming from a traumatic childhood. I was awkward, I didn't fit in, but I didn't stand out. It seemed that in school, my lack of social skills was always linked with my intelligence, but never in the way I needed. I was accused of acting as if I felt I were better than my classmates, by an administrator who should have known better; the reality was, I didn't understand why, if I knew the answer and someone else didn't, I shouldn't give the answer. And so, it was my fault. My attitude was the problem. In my mind, my attitude was fine.

Things got better when they got stable, I noticed, but that didn't stop me from experiencing depression in my teens, and still to this day.

But when, for the first time in my life, my mom settled down with the man to whom she is still married, and I got to stay at a school from middle school until graduation, my 'attitude' changed, well, at school, anyway.

I was often told I was "too smart for my own good" and I never felt like I fit in anywhere...which explains the many "phases" I went through (goth, prep, nerd - well, let's be honest, I was always a nerd!).

I certainly didn't "find myself" in high school. I got along with everyone because I was no longer the "new girl" - I became one of them, kind of. I know people still thought I was odd, but I found a group of equally odd characters, between academic team, drama club and all the other extracurricular activities I threw myself into. But then there was a bump, a really big bump, in my road and I derailed. Junior year was a rough one for me. I bounced back senior year, and really found myself in college, though.

That's not to say I've not battled my demons, as has everyone...more just to say, hey, I've had them, too. I still have them, only now, I can put them in those little monkey harnesses and take them for a walk (only kidding, we don't have monkey harnesses...oh, and my kids aren't demons, most days).

Being a mom is hard. I feel like I'm screwing it up, every day. I mean, they're still alive, so I must be doing something right (always look on the up side!)

But sometimes depression takes over my life; all I have the energy to do is sit on the couch with them and watch movies; go through the motions. They get home cooked meals, not every night, but who is counting? They have clean clothes, they get bathed, they're loved. Even in my worst moments, they're loved.

So yes, I suffer from depression, and I'm using that expression because it is suffering. It's not a fun world, when you feel constantly at fault for no reason perceivable to others, when you're just sad-to-the-bone for the most minute of reasons (ugh, I have to go to the grocery? put real pants on?! and then I have to cook dinner?)...

Depression makes me tired; I don't want to use it as an excuse, but there it is. I'm tired. But it's not just depression, it's my lifestyle - I'm a caregiver to twins on the spectrum, I live with an adult who is probably on the spectrum, I'm an adult who is probably on the spectrum...It's my weight, it's my medical conditions (fibromyalgia, chiari malformation)...I have a diagnosis of anxiety and depression, as well.

And you know what? It's okay. That's all I wanted to say...is that it's okay to not be okay, but it's also okay to ask for help, to talk to someone, to let it out.

Eff it...I guess I'll choose happy

One of my friends, Punk Rock Papa, posted today about choosing happy.

Mortality is a bitch, but it's my anti-depressant and it works wonders. Death will take you regardless of whether you are cheery or down...I would rather be remembered for my happiness than for losing the battle with my demons. Is it easy to stay cheery in the face of mounting tribulations? No, but if you don't attack everything with happiness and tenacity to overcome it you really are not doing anything but waiting to die. I like to say today might suck but there's always tomorrow and it's just a day away, but it might not be. - Punk Rock Papa

And maybe I'm self-centered, but I felt like it was written for me. Yeah, I'm the queen of the fucking universe, get over it.

Ok...I can admit that it wasn't 100% for me, I'm not that deluded. But at any rate, it's a good reminder.

So, today, I'm blaring music, cleaning my house, and trying to be happy, because Punk Rock Papa said so.

Yes, my children have autism, and it affects every minute of every day of our lives. They can't talk to me, they can't tell me what they want, or what's bothering them. They can't let me know how their day at school went, or whether they enjoyed the penguin-shaped sandwiches in their lunch box. They're very dependent, at a time when most kids are learning independence and taking it to their own level. That makes parenting much more difficult. But we're making progress, and isn't that something to celebrate?

My boys make me smile every single day. They also make me pull my hair out, cry and scream, but they still manage, through all of that, to make me smile.

We have a roof over our heads, food to eat, our bills are paid - yeah, we're short on money, we can't afford much, and I can't go get my $5 coffees anymore, but since I quit my job, stress levels are down, my kids are happier and making more progress, and I don't feel like I have to make every single person happy with my decisions, just myself and my family.

Punk Rock Papa is right - one day, we're all going to die, and it's not going to matter whether we were elated or miserable with our lives, so why not choose happy? Why not go out knowing you did all you did to make life better for yourself, and for those around you, with just the simple choice to be happier.

I've suffered from anxiety and depression nearly my whole life. I had a rough childhood, but I'm not that scared little girl any more. I've intermittently chosen happy over the years, but recently, I haven't been making that choice, I've been letting everyone else determine my mood - that's a blog post for another time, though.

Today, and tomorrow, and for as long as I can manage it, I'm going to choose happy. I can't promise to be rainbows and butterflies every day for the rest of forever, but I can promise to make an effort. We do all have our demons, some more than others, but we can't let them bury us, even if we're all going to die some day, anyway.

So, thanks, Punk Rock Papa, for being straight with the world about getting the fuck over it.

A matter of perspective: Age appropriate

We took the twins to a cousin's house for the first time, and in my opinion they did fantastic. Their father didn't think so, he was thoroughly frustrated with their behavior, but also, I think he was embarrassed.

He felt the twins were in unusual form, touching and getting into everything more than they do anywhere else. "They're never that bad anywhere else," he said.

I asked him to keep in mind they were in a brand new place, and he doesn't usually get to witness that first-time wonder that they have, at least he hasn't in quite a while, because we've started avoiding new places.

They just wanted to learn more about their environment, and there was a lot of stimuli they weren't used to being around. Just because they don't get acquainted with their surroundings in the same way as us, doesn't mean they were bad.

There was a dog, a very large, friendly dog - we don't go anywhere with large dogs, we barely go anywhere with small dogs. There were two cats. There were several adults trying to hold a conversation, the television was on, and there was also a boy, a very talkative, in-your-face kind of boy.

I think that boy made a lot of difference in the twins' dad's perspective on how they did, because it puts into perspective just how different our boys are from others their age.

Their cousin is about 7 months older than them, and they're all about the same size. However, seeing them side-by-side, it was obvious that my boys weren't nearly as developmentally age appropriate as their typically-developing cousin. He was interested in them, and tried to help keep them "out of trouble" by doing the same things I was doing - putting a hand on their chest and gently moving them away from the TV. He tried to engage them, only to be fully ignored by both of my boys.

They did their normal stuff, jumping and climbing and watching the television. Rio was put in just for them, as a way to help keep them a little calmer. They didn't want to sit still, but honestly, when do they ever do that?! We took their cups, because a drink usually helps calm them, too. I didn't feel like the iPad was a good choice, with the 4-year-old being reportedly aggressive, so we left that at home. (Compared to some of the things I read about what other ASD parents have to do just to leave the house, my boys are pretty darn easy!)

They, of course, wanted to touch the TV, and there was no taking their minds off of that, because it was a large TV and it was accessible to them. Our house and my mom's house (the two places they spend the most time outside of school) are set up to accommodate their obsessive need to touch/lick/knock over the television (seen those memes of clunker TVs? We have a decoy in our entertainment center for them).

Developmentally the twins are still at about 18-24 months, despite the fact that they'll be 4 in December. They still want to put everything they encounter in their mouths; they still want to touch and lick everything, and have no concept of consequences or boundaries.

Gage was fixated on his cousin's bicycle for a good portion of the evening - spinning the wheels and pedals, trying to lick and bite the handle bars - I can't say that I blame him, it was something pretty new to him, a bicycle. It was shiny and Cars-themed, just his style. And so he kept going back, over and over. No matter how many times I would ask him to stop, remove him, try to distract him and get his attention onto something else.

We were there for an hour - twice as long as I anticipated we would last! I was pretty much up and down the whole time, chasing the twins out of things they couldn't have and reminding them "The couch is not a trampoline." It's exhausting, keeping up with the boys outside of their normal environment, but getting people to our house to socialize is nigh on impossible.

Gamble did very well at returning to the carpet when asked, though; he did pretty well in general, actually. Neither of the boys were interested in the big, fluffy beautiful golden retriever, Memphis. Gamble didn't like the dog's breath in his face, or the tickle of his whiskers, so when I tried to put his hand on him, he shuddered, looked at me like I was nuts, and walked away...apparently we won't be getting a service dog any time soon.

But we made it an hour! That's pretty awesome for my boys, being in a new place for an entire hour without breaking anything or having a meltdown. But you could tell they were tired from the experience, and Gage was starting to get to the point where if I'd had to tell him no and sit him away from that bicycle one more time it was probably going to be a full-blown fighting, screaming meltdown - so I decided it was time to go.

Early warnings: Autism

It's hard to put a finger on just what it was about my twins that alerted me to the fact that something wasn't quite right by the time they were 6 months old. My mom-gut was telling me something was different about them, and I wasn't the only one who noticed it - one of my sisters kept them overnight, just once, and said something to my mom when they were about 7 or 8 months old.

They could watch a full-length movie and not notice another thing in the world by the time they were 6 months old. If we turned the television off, screaming ensued that was uncontrollable, and quite frankly, I didn't have much patience for it, so I would turn the damned thing back on.

And the bouncing never stopped. They were late crawlers, slightly late walkers, but those boys could bounce their own seats from the time they were about 4 months old. Constantly bouncing. They loved to be on the move - car rides, stroller walks, battery-operated swings - if they were moving, they were happy (or asleep, same thing in my mind).

They didn't seek much affection. They didn't mind it, but it was never the problem when they were crying - they were hungry, wet, tired. They were fine with being alone. They do seek affection now, though.

They didn't start making eye contact, it just never came, at least not for more than a few fleeting seconds, and you could tell they were getting nervous about it while it was happening.

As they got older, they didn't stop chewing on inappropriate things, mostly toys, their clothes, shoes - I couldn't leave flip-flops in the living room with them, it seriously looked like we had a puppy, and we didn't. They still put everything in their mouths, even with chew tubes attached to their clothing.

They had sensory issues when it came to food as soon as they switched from baby foods - nothing crunchy, not animal crackers, cookies, french fries - if it required too much chewing, they weren't into it. If it required them to bite it, they weren't going to do it.

They loved fruits, they loved carrots and spaghetti and meat loaf. They still love those things, but we are adding more things along the way, thankfully. They ate french fries for the first time a few months ago; not that they'd never been offered, they were just always immediately discarded.

I'm certainly not complaining because my kids don't like potato chips or candy or much in the way of junk food, that part is fantastic and I will take it! But I feel like we're stuck in a rut, eating the same things over and over. I'm constantly experimenting, trying to find foods with similar textures that I can feed them...and I'd like to think I do a pretty good job of it, they're certainly close to where they should be for their age in height and weight, though they've always been big boys (7 pounds each when they were born, 3 weeks early).

They've never been very interested in other people, including each other. I kept my cousin's little girl, who is less than a year older than the twins, for New Year's Eve the year they turned 2 - she was able to get them to do a little bit of turn-taking, use their cars appropriately to go down the the ramp, and they generally had a decent time with her, but they weren't all that interested in her. Same with the children in Early Head Start, when we got them enrolled there for some socialization. They still don't want to play with their cousin, and while she is younger than them, she certainly notices their differences - and she's completely, unabashedly honest about them because, well, she's 3. That's a little rough for me.

They started crawling a little late (a month or two after most kids, not much of a delay there.)
They started walking at 14 and 16 months. No big deal. But they didn't seem to notice the things around them, they'd walk right into them. Even though he's been mobile for a while, Gamble still walks on his tip-toes (common in ASD kids) and Gage can spin for quite some time without getting dizzy. They both still love to spin, flap, bounce and jump. They're balls of energy, constantly on the move.

These things all kind of sound like normal child development, a big reason we didn't get a referral for a diagnosis until they were 2, it's just so hard to tell.

After they turned 2, they started getting aggressive towards each other and towards other people. Gage was a biter. It was usually noise that would set them off, but sometimes it seemed to be nothing at all. They're still aggressive with their triggers, such as transitioning into the classroom/home, taking their focus off of the television and onto getting their diapers changed, going from the kitchen after dinner. It feels like everything is a fight. But they're also lovers - they'll crawl right into a stranger's lap, or grab hold of a stranger's hand, without a moment's hesitation. I was the same way as a child, I never met a stranger, just new "friends" (I actually got into a "friend's" van when I was younger, luckily they actually did know my family and they returned me...).

They didn't answer to their names, though some thought maybe that was just because they were twins...but they just never paid attention to anyone when they were talking, at least they didn't show signs that they were. They're getting better at this, but it's still a work in progress.

So we got their hearing checked, because, well, they'll make you do that for developmental evaluations, anyway. Their hearing is perfect. They don't listen.

And still, some of this sounds just like every other kid in the world. But it's pervasive, it affects every minute of our lives. The boys will be 4 in a few months and for the most part, they've got no words. They don't follow simple instructions. They can't walk into a room without a small meltdown, the transition is tough for them and always has been - even if they're not coming/going, someone else doing so is distressing. Though, they are able to regulate themselves fairly quickly (not usually more than a 5-minute meltdown).

I'm lucky that I've gotten smiles since they were a couple of months old, I'm lucky that we have a house that's not just filled with meltdowns and vocal stims (humming, beat boxing-type sounds, monkey sounds, etc), but with laughter and tickles. I'm so very lucky that my boys are affectionate (when they want to be) and that while the going may be slow, they are capable of learning, they are capable of loving and they are capable of being kids.

We still watch TV a good majority of the time that we're home, but sometimes I can engage them in other activities - usually something to do with the iPad. We've tried sensory activities, we've tried games and drawing and imaginative play - they want nothing to do with it. It's very discouraging, especially for someone who loves learning, to not be able to engage your children. It's upsetting to not be able to get them to sit down with you with a physical book in your hands, though the iPad has really been a great thing for us.

I'll keep the hope that some day, I might get to hear my boys say a full sentence, but until then, all I need are hugs and tickles, and the sound of their giggles. Occasionally Gage will grab my face and look into my eyes, and those few seconds are precious to me, they give me hope.

ASD in the Darke - the birth of a support group

Even before my twins were officially diagnosed as being on the spectrum, I knew I wanted to start a support group in my county, simply because there wasn't anything here - no support, no services, barely any knowledge that this group of disorders existed.

The boys were doing Help Me Grow, at home early intervention services, from the time they were about 18 months old, but I'd known since they were six months old that something was off, and I deeply suspected autism. It was still a blow to learn that was indeed what was going on with my precious, beautiful boys.

Their diagnosis solidified my need to begin a support group. Living in a rural area, there aren't many services, though there have been a few attempts at support groups that have petered out over the years.

I mentioned this to a friend whose son had recently been diagnosed, as well. She talked to another friend, who is working on diagnosis for her son. They had already been talking about this, as well.

And so we began, researching how to start, what to do, finding a space. It took us a little while to get started, it was bad timing, trying to start right before the string of holidays at the end of the year, so we decided to start fresh in January.

We met a few times, just the three of us, to go over things. We held our first meeting in March, with no one else in attendance. We'd forgotten to advertise the meeting! I worked at a newspaper, for crying out loud. So I wrote something for our BCMH (Bureau of Children's Medical Handicaps) April newsletter about mothering twins on the spectrum, as well as a press release for the local news outlets for Autism Awareness Month. We got two new moms in April, so it was something, at least.

It feels like such slow work, but now that I'm not working full-time it's easier to do the publicity. We had a record number in attendance at August's meeting (9) and I'm looking forward to September's meeting, because we're having our first speakers, and I'm excited to learn how to use essential oils to help my kids.

Tonight, while the twins and I were out walking, I got a phone call. The neighbor took over walking the twins so that I could take it. It was a dad, wanting to know more about the group, because he has a "special, awesome daughter", and he already uses essential oils, but he's been looking for a support group in our area for some time. It's parents like this that I want to reach out to, because I know what it's like to feel like you're utterly alone in this.

I explained our desire to take ASD in the Darke from a community autism support group to a non-profit organization, bringing in services to our area so that families don't have to drive hours to get the therapies and services they need, the care they deserve. That's not something that's going to happen immediately, obviously, but it's a long-term goal that we have agreed is needed in our area.

We also don't limit the group to just parents of ASD'ers, everyone is welcome, whether they're directly connected to the community or not, because how can we hope to spread awareness and gain acceptance if we, ourselves, cannot let everyone in?

So all this is to say that I'm so excited about the future of this effort, I'm thrilled to be making a difference already, in such a short time, and I can't wait to see where this goes, and how it helps my family, and other families in our area.

If you're from Darke County, or surrounding areas, we'd love to have you! We meet the fourth Wednesday of each month at the Greenville Public Library, 520 Sycamore St., Greenville, Ohio, from 6 to 8 p.m. in the third floor community room. If you need more information, visit facebook.com/asdindarke, email asdinthedarke@gmail.com or check out asdinthedarke.blogspot.com (We haven't actually started updating that blog yet, but we'll get there, I promise!).