Transition Time! 2018

We’re ending 2017 and beginning 2018.  FINALLY!!  And here I am again after many months away.  Sorry for the absence – time and inspiration haven’t been coinciding for me, and I’m going to try to ratchet them back into sync.

The end of the year and start of a new one always feels a little like limbo – this year especially.  A no man’s land in which what’s behind you is gratefully left behind, there’s some optimism in looking forward, but there’s still uncertainty ahead.  It’s been a year in which several friends and loved ones have suffered losses, others have had (or are weathering) health crises, and those of us left standing feel blessed, and cautious.

None of this has been helped by the news year we’ve withstood.  I don’t care if you’re a “liberal” or a “conservative” – whatever those tired labels mean anymore.  I mean the general barrage of news, and slander, and argument, and mud-slinging = we’re doing it wrong, and the public deserves something better.  Let’s want and demand something better.  Something grown-up.

Our own family of four has had a year of transitions.  Transitions from kids to teens, elementary and middle schools to middle and high schools, from order to chaos and back again, and, well, back again.  Even my own transition from always-at-home mom to Occasional World Traveler.  Thanks again, family, for the time to go to Ireland.  It was perfect.

To return this to my usual theme, the spectrum and life, if you know anything about autism, there’s a basic tenet: Transitions Are Hard.  In our lives this isn’t always true – our boys can handle small transitions quite well, and don’t have much trouble with say, heading out to school for the day or a quick change in routine like an unexpected errand or lunch date with family.  This year, though, has been BIG transitions – new schools, for one thing, and new bodies and hormones, which is part of being their age, but has been affecting everything else in usual and unusual ways.

Because I haven’t been keeping up with this writing, BECAUSE OF ALL THE TRANSITIONS (seeing a pattern?), I will sum all this up by saying Yep, Transitions ARE Hard.  Henry’s sleep issues, Owen’s mood swings, Paul’s and my own swings between acceptance and frustration, were all tied to this theme this year.  We are hoping that transitioning to 2018 will be smoother, but of course there’s no guarantee of that.

Life makes us no promises, does it?

Here’s the good part.  Being a family, or a good friend, means we’ve made promises to each other, no matter what life throws at us.  I feel how really lucky I am to have love, honesty, respect, and – always – laughter from my own loved ones!  We will go into 2018 looking forward.  Glad to say goodbye to what has been a pretty difficult year for us and many we love, glad to have a little something new to look forward to, knowing our promises to each other mean something, and will be there no. matter. what.

Love to you, friends and family, and Happy New Year.

Out of Balance

My car and I were both laid up this week.  The car, with a bad wheel bearing that made itself heard during our trip back from San Diego with a disturbing, loud hum of metal on metal.  Somehow we got home without trouble, but we had our fingers crossed from Yuma onwards.  When we took it in, it stayed in the shop for two days while a part came in.  The best part of car repair, according to the boys, was riding home in the courtesy shuttle, a brand-spankin’ new Toyota minivan with a row of seats for each of them.  I’m afraid it has given them ideas.  We picked up fresh eggs from a local gal with a backyard flock the other day.   Henry ogled her van pretty hard, and was all for getting in.  Sorry, sons, our nice, big car with the generous back seat will have to do for now, despite the fact that you have to sit by your irritating brother.  It is all fixed, quiet, wheels back in balance and realigned.

Me, I was laid up with some sort of low-level stomach bug that kept me from doing much of anything at all except staying home, near things I might need.  Now, my boys have never been great at giving me space to do projects or read, always finding things to ask me for, or get me to do with/for them.  They’re not exactly typical tween/teens who don’t really want their parents in their business – just the opposite!!  They want me involved in, and all about their business, just about every waking minute (why Sleep, my very first post, is so important…).  When that need for attention is kept in balance, it’s something I can roll with and even enjoy.  Right now, though, I am it.  The source of all ideas, attention and food.  Most days, I have been asked approximately every five minutes (no joke) for any number of things, and if I leave one room for a while, I’m followed to the one I’ve gone to.

This may explain why I’ve had trouble writing this week.

With day camps and vacations behind us, between the constant noise, the requests, a car in the shop, the tummy bug, occasional meltdowns, and the erratic weather, we’ve all been together indoors far too much.  I’m currently a little desperate for adult conversation, or just some plain old silence.  It’s a good thing school starts soon, despite my nervousness about them both starting with new schools and new staff.  I realize how much having the boys in school helps us all keep our balance.  They have enough structured time.  I have enough time away.  It all seems easier day to day when that’s true.  I’m looking forward to my own realignment.

School starts August 3.  A very good thing, and yet – we don’t yet know who “has our back” as the wonderful, wonderful Exceptional Ed. TAs from our elementary school did.  (Hi, guys and thanks again! We love you.)  

We’re doing it, but not this well.

We’re Here, We’re Weird…

I began this project after a minor crisis that felt pretty major (see Last Week’s Thing: Sleep), added to a cathartic, but also extremely stressful, visit with the boys’ developmental pediatrician. As the things we discussed at that visit swirled around in my head, I found myself going back over many things I hadn’t really thought hard about for a long time.  One thought that kept coming back to me was how uncomfortable many people are when I try to tell stories about my kids.  Very often, I’ll tell a story meant to explain or illuminate our lives, and the response I get is one of discomfort, or even a sense that the person thinks I am asking them to give me some perfect answer that will solve my problems, fix my emotions, and make everything OK.  Really, truly, not the intended effect.

So more often than not, I don’t talk.  I don’t tell the stories.  I avoid making people uncomfortable, since it complicates things.  Which leaves us isolated.  We feel like an island, population four, and that we’re the only ones who understand each other.  And if there’s any hope that the world is going to be ready to accept my boys as they are, as workers, citizens, and friends, there’s a lot of work to do.  That’s what’s hard.  Starting from uncomfortable and moving towards understanding, so we aren’t on the island all the time with an irreparable hole in the Minnow and no one noticing that we’re missing.

So how do I get it across that there’s nothing to fix?  That I’m not suffering under a great burden raising my boys?  That autism has a major influence on our lives, but we’re still people, and the kids are really worth getting to know?

So here I am, friends, that’s why I’m writing.  In hopes that those of you who totally get everything I’m saying will share your own stories.  That if it’s unfamiliar to you, you’ll start seeing us more clearly, and send those ripples out into the world – a world that really needs to see people with “disabilities” (more on that later) a lot more clearly.

Sleep: A Pretty Good Night

This was originally a Facebook post, which I soon realized was going to be better in blog format (see: It’s A Blog).  For a long time I have put happy times and great pictures of the kids on Facebook, Instagram, etc, and I will continue to do that.  We do have fun, and they are really fantastic kids.  Things aren’t always easy, though, and this summer is being a really challenging one.  The challenge that made me start writing was the impact sleep, or the lack of it, has been having on all of us lately.  

Sleep and autism have a tricky relationship. The need for rest is great, but the ability to fall and stay asleep isn’t guaranteed. Our boys have always slept a bit less than a lot of kids their age. We have been lucky up till now in that, once they fell asleep, they generally stayed that way all night, with some off nights now and then. Now, we have hit the speedbump of puberty, in a very hot summer, in a year in which they are both moving up to new schools. BOOM: bedtime anxiety, insomnia, night waking, using doors and doorknobs as fidgets (BANG! BANG! BANG!) and no. sleep. for. anyone. Result: kids wound up to 11 at all times, major increase in impulsiveness and overstimulation, and parents zombielike and dead-eyed.

We tried all our usual methods to curb this problem: social stories, signs on the door, earlier bedtime, later bedtime, lavender bath soap, earlier dinner, later dinner, soothing words, yelling like fools, tears, – with no lasting effect. (FYI Social Story: a written story in the first person, detailing what to do to go to sleep, etc and the beautiful rewards of same). We tried melatonin, which helped a little, but were still having trouble. Finally, the doctor prescribed medication for Henry, who had the most trouble. He appears to be impervious to the stuff, despite trying gradually higher doses.

We’ve now gone back to melatonin, which is the best luck we’ve had so far. A melting chewable of melatonin, combined with chamomile, seems to be the best thing this hot summer. It helps Owen drift off much faster. It helps Henry sleep earlier, and more overall. He still wakes up once or twice a night, but gets quiet and back to sleep much more quickly than without, or with the prescribed pills.  

The parents are now feeling slightly less like sleepwalkers. We may still not be getting quite enough rest, but let me tell you, a pretty-good night is much better than a pretty-bad one.

UPDATE 7/16/17: Well, it works sometimes.  No one thing seems to do what he needs, every night.  Since no one here wants to play “chemistry lab” with these kinds of drugs, even OTC or “natural” things, we are wary of stronger doses or combinations.  Please keep wishing us luck.  Things ARE a bit better, but it’s an ongoing thing.  Our vacation last week was very, very good in places, but we had several nights of the same-old, same-old, and a hard time achieving restful nights.  We persevere, and we will get there.

It’s A Blog

After only two weeks on Facebook, it just felt better to admit this is a blog, despite my dislike of the word, “blog.” I’ll learn to live with it if everyone agrees to call me a writer and not a “blogger.” Thank you!!

I hope you will all come along with me, and enjoy the weekly, or whenever-I-can-manage, writings.

The next post, in a day or two, will be the two “back issues” I put only on Facebook.  Then we will move forward and see where this goes.