A look back: 2014

Looking back at 2014 it was a decent year. Not a super fantastic year, but we survived.

At the beginning of the year I was having some serious medical issues, issues that were starting to point to surgery, and not just any surgery, brain surgery. I was dizzy constantly, lightheaded, I was losing the vision in my left eye periodically, fatigue, headaches/migraines and nausea were commonplace. I was diagnosed with an Arnold Chiari Malformation - basically, my cerebellum (the part of the brain responsible for balance) has herniated 7mm into my spinal column.

I was under a tremendous amount of stress, on top of the waiting game to see if surgery was necessary, I was working full-time and I've always been the primary care-giver for the twins, who have significant needs.

My work load increased with the increasing number of open positions within my company - more and more was asked of those of us who remained. It was a bit overwhelming. My Family and Medical Leave request went through to Human Resources to cut my hours to part-time - no response. HR is located in another state, with a crazy automated system to wade through, and when I did make it through I got sent to voicemail; email went unanswered - this was in May. A verbal reprimand for my attendance in June - but what about my FMLA request? Well, why should my supervisor know about that? Please, give me the run-around some more, I really enjoy it.

By August I'd had enough. I just couldn't keep up with everything, and my job was the one thing I could easily change. I gave 3-weeks notice, rounding out my 2.5 years with an in-person interview with Scotty McCreery, whom I adore.

We figured I'd take a couple of months off work and look for something part-time. That turned into Pricklypants finding full-time work and me staying home, looking for freelance opportunities, or a work-from-home opportunity.

The twins started pre-school, receiving speech therapy. We took some time getting into our routine, but by the end of September they were having fewer issues getting into the classroom.

By the end of September my depression hit full force, by October I knew I needed to get some help for it and talked to my doctor about a specific anti-depressant I'd read about, aimed at multiple issues, rather than just the depression and anxiety. After 3 weeks of medication, right around Thanksgiving Day, it was like a switch flipped in my brain and the noise was reduced a hundred-fold.

That wasn't the end of it, though. I was manic - so keyed up that I wasn't sleeping or eating. I went back to my doctor, the sense of urgency I was feeling was overwhelming. We decided to add a mood stabilizer, as bi-polar runs pretty heavily in my family. World of difference there. Not only that, over the course of 2014, I lost 35 pounds!

The twins continued to make progress. By the end of October they were starting to understand the routine. By the time we got to Christmas break in the middle of December, they were walking themselves from the car to their classroom and starting to participate in circle time with fewer incidents. Steady progress. They've started showing signs of understanding what we were saying to them, Gage was following my pointed finger to what I wanted him to see - sometimes from across the room - not only that, he was coming to me, grabbing my hand and trying to get me to follow him to where he wanted me. Gamble is mimicking sounds of words after we say some things.

If we keep up our momentum, 2015 is bound to be an au-some year!

Finding balance: Worry and Hope

I worry. I worry every single day, about every aspect of my life, and the lives of my family. I worry about normal stuff, and I worry about autism stuff.

I worry about the boys' aggression, towards each other and everyone else. I worry about being a good enough mother. I worry about loving them enough, about showing them that I love them, when they're seemingly uninterested in anything to do with me, or anyone, for that matter. I worry about how much TV they watch, and how many hours of sleep they get.

I worry about our finances. Was it really the right choice to quit my job, the one with a steady paycheck, and stay home to take care of my family? I especially worry since the boys' dad was let go for taking time off to deal with family stuff.

I worry about my sons' futures, I worry what tomorrow will bring. I worry about how the world will accept my children, in all their unique glory, because they're not broken, they're just wired differently.

I've been using both Mac and PC my whole life, I know those operating systems like I know my own heartbeat. The boys are closer to Linux – which I've only heard about. I'm excellent at navigating new technologies, though, so maybe it's unfair to compare my boys to an operating system, because they're much more complicated to me than that.

I worry that no one else is ever going to be bothered to learn with us, though. I remember growing up and hearing the derogatory things my family said about many of its own members, the “R-word” was commonplace, especially in relation to my uncle. If my grandparents said those things about their own son, what chance do my boys have at being loved and accepted?

I grew up with family dinners on Sunday, we gathered – most of my great-grandmother's 13 children and their families – nearly every weekend, and certainly every holiday. My great-grandmother was the glue that held us together, and when she passed away we drifted. I miss those times, though, that closeness that we shared.

And I'm afraid my kids aren't ever going to get to know that. I worry that their cousins, their aunts and uncles, are not going to accept them for who they are, that they'll be pushed to the backs of peoples' minds because they're different.

I worry that my family, of all people, will judge them harshly, as they've already shown they can. I mourn for the childhood that my boys won't have, but I'm hopeful, at the same time. My childhood was tumultuous, it was difficult, but I do still have many happy memories.

My favorite memories, the ones that I believe are actually my memories and not stories I've heard, revolve around time with my cousins and the rest of our family. Playing dolls together, going to the park, watching movies and having sleepovers – those are the happy pieces of my childhood, the pieces I carry with me. I don't feel my boys will ever have that – partially because my family has drifted apart, but also because they're different – not less, just different – and I don't know that my family can accept that in a positive, healthy manner.

I won't subject my children to the things my uncle, who has had an intellectual disability his whole life, was taught was acceptable behavior by people who were supposed to love him unconditionally.

I don't recall ever using derogatory terms when it came to my uncle, or any other special needs person in my life. That's not to say that I didn't, because kids can be cruel. But I feel as if I've been more accepting of different than some members of my family have been, and that's something I can say going as far back as I can remember.

I was always an accepting, loving child. I was full of love for everyone, I was entirely too trusting, too willing to sacrifice myself for those around me. I hope, as much as I worry, that my boys got a little piece of that from me.

I worry, and I hope. I have faith that things will be just fine – I've made it this far, with this many obstacles in my way, I know I can do this, and I know I can help my sons navigate those same choppy waters. And I know this because I know how much I love them, and I know (now) how much my mom has loved me my whole life. If she can do this, with everything she has faced, I can, too.

I have hope, despite how bleak things seem now, with autism taking over nearly every aspect of our lives, because in the end, all that matters is that I love my boys, and that I give it my all. I've been doing that my whole life, for people who didn't necessarily reciprocate or even deserve it – if I can do that for people who have negatively impacted my life, still have love and hope for them, then I can certainly do this for my children.

I have hope that one day they're going to make friends who will love them for who they are, while at the same time I worry that they'll encounter bullies because of their differences.

I have hope that they'll grow up and be able to do whatever it is they want to do – because I did, kind of. Having children was never in the cards, but it was okay because I'd already done many of the things I wanted to do, and I knew I could still do more, even with a baby (or two, as we would find out at my first ultrasound).

I have hope that one day, my boys will find someone who loves them for them, who accepts exactly who they are and doesn't want to change them. I have hope that my boys are the future of a family that has been broken, beaten down by its own demons – they're a fresh start, a whole new generation that can live more freely than I could as a child, even though the evils of the world are still in play.

I have hope that as much of a burden as this autism stuff is, that it's also a blessing, because my boys are the most forgiving, unconditionally loving people I've ever had the honor of meeting. I can yell at them, smack their tushies and put them in timeout, and they're still going to get a giant grin and give me a hug when I come back from my own timeout. My boys are lovers, even with their aggressive behaviors – which are probably more about their inability to communicate and their frustrations with each other than anything else.

I have hope that one day, I'll hear them call me mommy, I'll hear them say “I love you.” I hope that their father and I can do better than our parents, not that they did a horrible job, but more that we can learn from their mistakes and move forward.

So while I do worry, nearly constantly, I also hope. Life is all about balance – and while I have horrible physical balance due to a chiari malformation (herniating cerebellum), I'm hopeful that we can find that balance, given time and patience to do so.

What a difference a year can make

Not only is it the end of the year, it's also the twins' 4th birthday, Christmas and the beginning of a new life for us.

We're currently looking for a new home, and will be moving (by March at the latest). I'm hoping that a fresh start and a better set-up for the twins will help their progress.

But even without that, my boys have been steadily learning over the last four months. We have a handicap parking placard, because they couldn't be trusted before to stay by the car and not run into traffic, especially if I was by myself with them. Now, Gamble puts his hand on the door for the gas when I get Gage out of the car, and I'm a little more comfortable taking my hand off of him to get Gage out of the car.

They're also both starting to follow simple commands, and they're getting better at comprehending what we're saying to them (Go sit in your seat, don't touch the TV, etc)

[Edit: I started this post around the beginning of the month and got sidetracked, so here it is, after Christmas, and I'm coming back to finish it. Happy holidays!]

Gage is starting to follow where I'm pointing, even if I'm not standing directly over it pointing - I've gotten him to follow my finger across the room, with the word for the item (typically his cup, he's very motivated when there's a drink involved) and if there aren't too many distractions, I can get him to go get it and bring it back. Sometimes he gets distracted on the bringing it back part, because he's sucking ferociously trying to drain those last few sips...but if there's no tv, he'll go get it, and then he'll bring it back. That's huge!

The boys did regress a bit at the beginning of the month, it was a stressful time for everyone. It doesn't help that they're out of school for 3 weeks. I need to remember to arrange speech therapy, at least, for those weeks, and the summer. OT if I can get it. I have a huge list of  all the things that I need to schedule and my head is kind of swimming most of the time. Add in the stress of the holidays, and it's been an explosive end to an otherwise decent year.

Another difference going into 2015 is that I finally found the right medications for my particular situations. I don't think medication is a cure for everything that ails you, but for me, it's what works, it's the only thing I've found that works. 

I think I can say with 90% certainty that 2015 has just got to be a better year for us all. I know we'll be starting fresh, looking for a new place to live, a new job for me. I'm definitely looking forward to the start of school, because the boys need those few hours of structured social time, they get antsy at home with just each other for company. Just like all siblings, not because they're autistic. 

I often wonder how much of their behavior is autism and how much is typical 4-year-old little boy. Yes, there's the spinning and incessant jumping, there's high-pitched vocal stims, the aversion to dry, crunchy foods, the lack of interest in most of their peers, but a slight curiosity for adults and older kids (much like me when I was younger - I always wanted to know what the grownups were doing and didn't much care for people my own age, now that I'm a little older that has changed).

But they're also fascinated by musical instruments, electronic devices and the science-fiction filled Johnny Test is their latest favorite show to watch. They're thinkers, dreamers, introverts like their parents. A year ago, I probably wouldn't have been in a place to recognize that for what it was. A year ago, I wasn't doing much beyond surviving, because my brain was on overdrive, with constant streams of chatter running through it. I was exhausted just carrying my head around, let alone chasing after, cleaning up after, teaching, playing with, cuddling, tucking in, bathing two 3 year old boys with an abundance of energy. Not to mention a full-time job that falls into the 8th most stressful job for 2014 - newspaper reporter (with a skeleton crew and a plethora of responsibilities that just kept getting bigger).

Quitting my job took a huge amount of stress and made into a smaller amount of stress. It made a world of difference, noticeably in the twins' behavior. Quitting my job coincided with the start of school for them, as well, so it could be that...but I'd like to believe it's mostly me ;)

At any rate, they're making progress, and however slow and small it may seem, it's all huge for them, and most of it has come since August, so it's amazing what a difference 4 months can make, really.

The Big 4...

Four years ago (last night) I was getting ready to go to bed with the full knowledge that in the morning, my whole world would change. 

I was hugely pregnant with the twins, and I was still 3 weeks from my due date. The OB felt that it was too risky, with the boys in their yin-yang positions (Gamble on his back, facing up), to wait for me to go into labor.

I actually asked if we could wait until Monday - I wasn't really in a hurry to have my first-ever surgery, and welcome these aliens to the real world...I was just getting used to having them in there, well, at least I'd be able to see and touch my feet again, and sleep (little did I know...) and maybe my back wouldn't hurt so badly...oh and the trips to the bathroom! Man I hated that part, and I chugged water like a steam engine. I guess Friday is good.

We went in, waited and waited and waited (why did I need to be there so early?!). Finally, after hours without food or drink, they prepped me for surgery. I don't remember much from my drug-induced haze, but I remember the feel of them tugging the boys out, the boys peeing on the doctors (yes, both of them! oddly, they've never really been big on peeing on people, just things...) and how it felt when they sewed me back together. 

My mom wanted to make sure I was able to at least see the boys, and I got to hold Gage long enough for a photo. I don't really remember much after that, I know I slept - and they woke me up to try to feed the boys (we tried breastfeeding to start - lasted about 2 weeks). 

Now, 4 years later, it's impossible to imagine a life without them, because they're constantly here ;) 

They aren't in the same place, educationally, socially or emotionally, as other kids their age, but that's ok. They're making progress, they're mostly happy and they're healthy!

Happy birthday to my boys - who may frustrate me, make me want to scream and rip my hair out, but who also show me the most unconditional love I've ever seen. They're forgiving (or they forget, whatever) and love to cuddle. They're problem solvers - if they can't reach something, they'll put something there to stand on so that they can, if they really want it, that is. I don't know what our future holds, but I sure hope it keeps getting better with time.

The holidays are upon us...and I don't really care

Another holiday season is upon us. It's the busiest, craziest time of the year and I don't particularly enjoy it. Thanksgiving is next week, followed closely by Pricklypants and my 5th anniversary, the twins' 4th birthday, Christmas and New Year's - those are all busy, happy celebrations...those are all celebrations the twins couldn't care less about.

They do enjoy food, but not many of their foods will be found at the Thanksgiving feasts we'll be attending - they'll eat some ham, some turkey, mashed potatoes and stuffing...if there's macaroni n cheese, they might eat some of that. Meanwhile, I'll be stuffing my face with all the foods - because I love food, as does most of my family.

They've never been interested in seeing ALL the people; they don't tear open their presents; they don't even like icing on their cake. I can't put a Christmas tree up for safety reasons, any decorations have to stay out of the terrors' reach.

It's hard to get excited about Christmas, for me, because I don't get to get excited with my kids. I don't need to worry about how to break it to them that Santa's not real, because they haven't got a clue who the fat guy in the red suit is. Just like they didn't have a clue when they were 2, or last year, when they turned 3.

I don't intend to tell my kids about Santa, the Easter Bunny or the Tooth Fairy - I don't see the magic, it's not practical to fill their heads with beliefs that won't pan out because eventually, we're going to have to go through the battle of changing those beliefs, the heartache, the meltdowns...so no, I'm not going to tell them that a magical man invades our home each year to leave behind presents. I'm not going to tell them that a magical bunny delivers eggs and candy and goodies to little ones each year.

This sounds like I'm a Scrooge, like I hate the holidays, which isn't true. I just don't have the same reasons to get excited as most people. I still love the music, the cheer, the decorations - I love all of that, and I'll keep a board on Pinterest just to see all the pretty ideas, even if I'll never actually do any of them myself. I'll start a Christmas Pandora station to get my cheesy music fix. I'll eat the baked yummies and make more peanut brittle and send virtual Christmas cheer to my friends all around the world who do get excited about the holidays.

Of course, I'll try to share the joy and all the rest of the stuff that comes with the Christmas season with my boys, but frankly, I just don't think they'll care any more this year than they did last year, despite the steps forward that they've taken (which I'll be talking about in an upcoming post - probably following parent-teacher conferences on Tuesday).

My boys are "that kid"

Wednesday, as I was dropping the twins off at school, I overheard a little boy say "I know which kid is screaming." His dad asked how he knew, and the boy replied "He's always the one who is screaming..." and I knew he was talking about my Gamble. My sweet, kind, goofy Gamble.

My kid is "that kid" - and as I stood there, trying to listen and not make it obvious that they were talking about my kid, I wanted to speak up, to explain that Gamble has autism, and transitions are hard for him to process. But I didn't, because like every other parent (except for me, apparently), he was in a hurry and I didn't want to slow him down explaining about "that kid."

Gage is to the point where he takes himself into his classroom and goes straight to the mini-trampoline. No crying, no screaming, no fuss. Gamble's not there, he makes his entrance heard, as he stomps over to the teacher's computer to watch the screensaver and calm down, screaming all the way.

Unlike most parents, I do not stop my boys to give them a hug and kiss and tell them to have a good day - I've noticed that makes the transition much harder than letting them take themselves into the classroom with no interruption.

It's easier to do with Gage, because his classroom is first, but I have to stop Gamble to make sure Gage gets into his room, and then take Gamble's coat off - and then Gamble sees the doors to the playground, wants to go there, and gets upset when I re-direct him to his classroom. I think this has a lot to do with Gage having a better transition into the classroom. I don't know how to make Gamble's transition smoother, though his teacher and aide are good at getting him calmed down once he's in the room, besides, him running in screaming lets them know he's there. I often don't even enter their classroom, just put their belongings in their cubby and go about my business - this is what the teachers have asked me to do. It's easier to transition Gamble and Gage into the classroom if we don't also have to transition them into letting me leave...








The transition at pick-up time is a little easier, but the boys get so distracted when I have to get them from the playground or their classroom - they're not done playing! It used to be a problem to take Gage into Gamble's classroom to get Gamble, but now Gage just goes off and plays with the pretend sink, trying to turn on water that isn't coming. Gamble wants to check out all of the art along the way out, and Gage must stop at the fish tank to look. The hallways of the school are so busy, between the other kids and parents, the artwork...and then sometimes we have to stop and let others pass because the hallways are so narrow.

Pick-up today was nice - both teachers told me the boys did well today, and that they're beginning to sit at circle time on their own, as well as having better transitions between activities. Gage's teacher put a mini-trampoline in the classroom to help give Gage breaks when he needs them, but said the rest of the class, of course, is excited to have it there, as well. Parent-teacher conferences are coming up next week, and I've been prepping some questions, but there's already a good amount of communication (verbal and written) so I'm hoping the 30 minutes we've got will be enough time to go over some of the things I have concerns with - like why occupational therapy isn't in their IEP and what we can do about that.

....Back to "that kid."

I've been thinking about this more and more, as we've been told that Gage is having too many incidents at school, sending kids home with scratches...and then I saw a post from another mom-page on Facebook, about how her kid came home with claw marks, crying, and how that mom was furious, sending pictures and a letter to the school - and I thought "Am I always going to be the parent on the other end of that? Are my kids going to be perceived as bullies, even though they're not being malicious?"

Parents: I get that your babies are precious gems, I get that you want to protect them - but you don't always know the whole story, and the educational system can't tell you the whole story.

They can't tell you that Gage is trying to communicate with the other children, trying to do "dots and squeezies" to help calm them so they can stop hurting his ears with their crying. They can't tell you that Gamble screams to help calm himself after transitioning from home to the car to the school and finally to his classroom. Both of the boys scream as they run into our house - Gamble opening the screen door and Gage opening the front door - teamwork, even if it's not intentional.

I'm pretty sure the school can't tell you anything to make it okay, because it's not...but the school also can't tell you that we have behavioral therapy, occupational therapy and speech therapy to try to make these things better. We're working on it, one day at a time. My thought, though, is yes, I am very sorry that my son hurt your kid - you have no idea how much I wish that we could figure it all out. He's not hurting your child because he's mean or a bully, he's hurting your child because he doesn't understand him, the situation, the action or how to communicate what he's feeling...and we're trying, every day, to help him understand all of these things.

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.