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!).

Sunday Confessions: First loves

I'm a lover, by nature. I love most everyone, instantly, without questions. But today, it's time for a confession: I never even met my first love face to face.

My stepdad might tell you my first true love was a boy who rode my school bus, who was my best friend and who I did love, deeply. However, he loved boys, and obviously I'm not one of those. And I know now that the way I loved Frenchfry was not physical attraction, or romantic love. I love Frenchfry like an extension of myself. He is still my best friend, and even though he's moved on to bigger and better things like the city life and a gorgeous life partner, and we don't talk nearly often enough, I still love that boy.

But that's not what this is about. This is about my first "true love", the first boy I ever got flutter-in-my-tummy crazy about. The first boy for whom I would have done anything. Sean, and I can't even remember his last name right now (I'll dwell on this for days now), I do know his birthday is July 15, though.

My first true love, the person I felt most connected to in the world, even to this day, though we haven't talked in years. I've never found someone I could talk to as easily as him, who I was so open and honest with (until recently). But the thing that my first true love and I were, before anything else, was friends.

I was an awkward teenager; I had social anxiety, I was "too smart for my own good," and even though I had a lot of friends in school, I didn't socialize much outside of school. The Internet was my venue of choice for social interactions, because I've always communicated better via writing. Well, anyway, I started talking to a boy from California in a Yahoo! chat. He was funny, quirky, a little perverted, and so easy to talk to.

I've always been on the heavy side, I was definitely insecure as a teenager, and through most of my 20's, though now I realize I'm fabulous, "every inch of [me] is perfect, from the bottom to the top," as the song goes.

But, when I was 15, that was not the case, and Sean made me feel beautiful, without ever seeing me. We did eventually exchange photos, and I talked my mom into buying a webcam so that we could video chat (which, incidentally, would later get me grounded, ahem). Neither of us were strikingly good-looking, but that wasn't at all what mattered.

We had a two-year relationship via the Internet. It was intense, and when it ended, I was crushed. I had made all these plans, I was a year away from going to college in California, and it turns out, Sean was just a boy, and he had boy needs that I couldn't meet from however many thousands of miles away. I was naive, but I was a girl in love. That was my junior year, and it was a dark, dark year for me. I failed three classes (without ever losing my spot in the top 10 of my class), tried to commit suicide, forced my mother to pay for an apartment that she wasn't living in because I couldn't stand to be around, basically, anyone. I was definitely an emo-teen. I was locked in my own shell, as I so often was as a child.

I'm happy to say that I've since moved on from Internet relationships (obviously, my hard drive didn't knock me up). I can't say that what the boys' dad and I have is "true love," not in the fairytale sense. But I do love the asshole, most days, when I'm not thinking about smothering him with his pillow.

Does autism define our lives?

There have been several posts going around about whether or not autism defines those who are on the spectrum. I can say with certainty that it helps define each and every one of them, it helps define their caregivers and those who love them, as well. It's a part of who each and every one of us has to become to love that person, to be that person. It's intrinsically associated with the ASD'ers behaviors, their mannerisms, their outlook on life.

Does autism fully define who a person is? No. There are so many other pieces that go to that puzzle. But right now, right here, autism definitely sets the parameters for most of what goes on in our lives with the twins. It completely impacts every aspect of our day, between the sensory issues, the social issues, the learning issues. It affects our schedule, our budget, our moods, every single aspect of our lives is affected by autism.

And that's not a bad thing. It certainly isn't the end of the world. My twins aren't typical 3-year-old boys, but they're so very happy so much of the time. Yes, we have meltdowns and a lack of communication, but doesn't every 3-year-old? So what if they aren't interested in going to the park, or playing with toys - they're active, those boys don't stop moving.

Yes, I absolutely would change pieces of the puzzles that are my boys. I would give them a voice, in a heartbeat. I would give them the ability to communicate their needs, their wants, their hopes and desires and dislikes, faster than I could take a breath.

But they are who they are. It is what it is, and if I can't keep moving forward, one foot in front of the other, then my whole world stops with me, and that just can't happen. I can still focus on what my boys need my help with changing, we can work on these things, but we're going to work on them at the boys' pace, not some guideline that was made for typically developing children. Keeping that in perspective is of utmost importance for me.

I was once told that I have a great personality for autism parenting, because I can go with the flow. It isn't easy for me, though. It's a coping mechanism that I've learned, it's a skill that's been acquired. If I can do that, so can my boys.

At our play date the other day, talking to another autism family, the grandma said "Wow, you have a lot on your plate," and really, it's not any more than any other special needs family. If all those other families can do it, then I can, too, I'm sure of it - at least that's what I keep telling myself.

To be honest, I never wanted kids. They just don't make sense to me. I don't get them, I'm not a patient person, I've never really been good at teaching others. But shit happens and you move on. I made my choices, and I don't regret any of them. What good is regret, anyway?

Now I'm doing my best to raise them right, give them a happy home and a bright future and all of that sappy stuff. I, like most every other parent, just want what's best for those little monsters I played a part in creating. I want them to be happy, healthy and thriving.

We've got some work to do on thriving, but we're happy and healthy, and that's something.

Play date success

The twins had their first official play date this afternoon with a little boy who is also on the spectrum, D. I wasn't sure what to expect, as I'd never been to this house before. I was anxious, and when I get anxious, I sweat a little crazily. So I get to their house half an hour late, and I'm already a sweaty mess. Great.

D's parents and grandma were amazing. They were incredibly helpful, and never once hesitated to lend a hand. In fact, D's dad told me several times, "I've got this, go sit down..." It was refreshing! I hate when people ask if I need help...No, please, stand there and watch me as I struggle to decide which twin is in more imminent danger, thank you. Yes, grab that damn kid before he gets hurt!

I'm not ashamed to accept help, at all, but if you have to ask, when I'm obviously struggling, no, I don't really want your help. I loved that these parents just DID it. They helped me chase after my little twin whirlwinds, helped me keep them out of the kitty litter and the bedrooms they weren't welcome to enter.

D's dad had a blast tickling Gamble, he loved hearing that giggle, because it's infectious. D's parents enjoyed all the smiles and giggles and jumping. They got it, how important the boys' laughter and smiles are, because not all parents of ASD kids GET that type of interaction with their children. D's mom and I talked about how grateful we are that our kids are affectionate, not the type of ASD kids who don't want physical interaction. Gamble climbed up to sit with D's mom several times, and wanted D's grandma to pick him up, too. Gage isn't as affectionate with other people, but he came to mama for lovin' when he noticed his brother was getting attention from someone else.

I think it surprised D's parents that the twins express jealousy, but they most definitely do when it suits them. Don't get me wrong, there are times when they're completely indifferent to whether I'm giving one or the other attention, but they also get aggressive towards each other at times, when I'm only giving one attention. 

They commented on how well-behaved the boys were, how curious and vocal (vocal stims, not actual words). They asked questions because they were genuinely interested in learning about our experiences. We shared war stories. The kids had a great time, I assume, since there was minimal screaming and only one almost-incident.

I was so proud of my boys, not that I'm not always proud, but they were au-some today! They sat at the table to eat, even if they did make a mess. They listened when I asked them to do something, at least much better than they normally do. They made me feel like I'm not doing everything completely inadequately, and that's not something that I feel all the time. But my boys showed great progress today, and I realized that I was anxious for no reason at all.

R is an autism grandma, and she's beautifully involved with her D, so she GETS it. She joined our support group to get more involved in D's world. She's offered her back yard as a place to let the boys get out and stretch their legs and enjoy the mini-trampoline she has for D, but you know, when D's not there, because he gets a little possessive, his dad said.

Autism families have so many more things to consider when they're planning social interactions. It's a delicate dance, trying to figure out everyone's triggers, food preferences, communication style...balancing the emotions and the attitudes of the kids can be overwhelming. Keeping physical and emotional altercations to a minimum is hard work, especially with a group of kids who have a hard time communicating their frustrations.

At one point, Gamble toppled D's tower of blocks, so D shoved him. D's parents were busy chasing after Gage, so I sat down with Gamble and D, and I asked D if he thought shoving Gamble was a good choice. He explained that Gamble had knocked his tower down. I apologized, explained that Gamble didn't understand that would upset D, and talked to Gamble about it, as well. It was an interesting dynamic, a higher-functioning, verbal 5-year-old ASD child and my two lower-functioning, non-verbal 3 1/2 year-old ASD children, but they seemed to have a good time, even if they didn't do much actual "playing."

My twins don't play in the traditional sense of the word. They've got zero imaginative play. Their "playing" is carrying toys around, mouthing them, and hitting them against different surfaces to hear the sounds they make. Their "playing" is running a car along the wall to hear the noise. Gage "plays" by spinning objects. He gallops and jumps and turns himself upside down. They don't stack blocks, or line up their toys. They don't build things or put them in order. They never stop moving.


Did I mention how proud I was of the boys today? There was no biting, kicking, pinching or shoving from either of them today (at least not during the play date - Gage did bite Gamble's hand after we dropped daddy off at work earlier)! They did so great, being in a new space with new people and new toys and sounds and smells. Gage had a moment when he was told for the millionth time that no, he could not go into that room, but it was over before I really even had to intervene. They did excellent at regulating themselves today.

And then they fought their naps, hard. Which is why I drove daddy to work, today. Because a 40-minute nap is better than no nap at all, because when the twins get tired, they get vicious...kind of like their mama.

At any rate, I can't wait to have another play date with D. Hopefully we can get another child or two from the support group to join us next time!