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.