Month: July 2017

Hitting the reset button

Here I am, on my bi-weekly trek to the laundromat.  My husband and I trade off this delightful task, making it slightly less unpleasant for each of us.  Will I be happier when we own our home and can do laundry whenever we want, one load at a time?  Perhaps, but I see it in a different light.  Once every other week, I get an hour to sit in the sunshine and write, kid-free. Not only that, but I can cram seven loads into two large-capacity washers followed by four large-capacity dryers and get it all done for around $11.50.  I don’t know yet what the costs will be once I’m running my own standard machines every single day for the rest of my natural born life, because I never bothered to calculate it when I owned my home before.

What am I trying to say?  

That’s right.  Kid-free.  Important time for all of us, regardless of our child’s needs. It’s like hitting the reset button on your brain, only you also get clean clothes and sheets at the end.  Bonus!

Isn’t this a blog about raising kids on the spectrum?  Why is she rambling on about laundry?

Because sometimes even I get sick of talking about autism.  Sometimes I want to talk about laundry pods and the fact that our laundromat now has free WiFi.  Sometimes I want to type endlessly just to see who is listening.  Sometimes daily household tasks are just that.  And sometimes kids are just kids.

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Last weekend, we enjoyed our annual respite trip.  Two nights of rest and relaxation, and we played tourists an hour from home.  We visited wineries, witnessed an elaborate and tear-inducing marriage proposal, met incredible people who just feel passion for life, hiked a gorge (my calves have finally recovered), took in countless views of Seneca and Keuka Lakes (two of the Finger Lakes), we finished our first night out with a bottle of wine on the sprawling front porch of the B&B, and we started our last morning there with our first cups of coffee.

To be able to recover and recharge has so many merits that I’m not certain I could list them all here.  What I think that I can say to summarize is that when every single day takes energy that you may not always have, these annual weekends trips are crucial.  It allows me to be a better ME.  I can be a more attentive person at home and at work, in my marriage and in my writing. I am able to be better at stepping back and recognizing what is happening as a result of autistic traits/ADHD, and what might just be natural kid behaviors.  

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Look how happy we look!

Huh.  I guess it did turn out to be a post about spectrum life after all.  

By the way, and this has nothing to do with this post other than Wonder Boy had a shining moment after a very challenging weekend, we were having a discussion yesterday as we left the house:

As I locked the front door, he said in a gravelly voice “I’m gonna lock you in the basement”.
“Sweetie, that’s not okay to say” was my reply as I hid my surprise- he doesn’t usually say things like that.  “I was kidding! I promise”. “Okay, thank you for saying that”. “I understand, mommy.  I’m sorry”.  
What? You understand?  You’ve just spent the week stomping your foot, folding your arms indignantly across your chest, and scowling at me, and you understand?  

Interesting.  Perhaps Wonder Boy found his reset button, too.  

What happens during summer break

Oh dear.

With no summer services taking place – by which I mean speech therapy, occupational therapy, and physical therapy – things have gotten…difficult.

Wonder Boy has returned to his echolalic (parroting), scripting (reciting lines from shows or movies to indicate a need) self.  Speedy struggles to control his body movements or his anger and anxiety.
This morning, in order to get WB dressed, I had to work with his script about a crested gecko shedding his old skin.  Yup.  The pajamas were the skin.  Luckily that was an easy script to work through.

If you need me, I’ll be hiding under my desk at work.  I may or may not be crying.

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In an effort to pretend as though I actually have my act together, I reinstated the use of the sensory equipment that we own.  This morning we’re using the body sock, stress ball, and color-changing lights to get calm and get sensory feedback needed.

If you are struggling with the summer therapy gap, please see my sensory room post here.  

Remember- you’re not alone.  We’re all hiding under our desks, too.

Respite time!

Respite time!

As my husband and I teeter on the brink of our annual respite weekend, the tension is palpable.  Not between us as much as between me and our kids.  Okay, between us too.

As much as our neurotypical parenting counterparts can empathize with what our daily life is like, they haven’t lived it and often I feel like they’re watching me and scratching their heads in confusion over why I am the way I am.  I cancel plans. I’m tired. I say weird things.  I drink coffee every day and wine every night.  I talk about autism a LOT.  But in all fairness, it’s kind of my entire existence.

Once a year, we take a break for two nights.  Last year that meant our first chance to sleep without having WonderBoy sleep in our bed with us.  This year it means a chance to not spend every waking moment wrangling a child who cannot seem to control his body.  It means not having to redirect him ten times just to get him to the bathroom.  It means we can breathe for two days and not have someone yammering non-stop about I don’t even know what.

I can’t pretend that this is fun.

I can’t even pretend that I’m any good at this.

While we didn’t feel certain at first with Wonder Boy, I feel utterly thrown for a loop with Speedy.  The anxiety I understand because I live with it every single day.  But the ADHD?  HOLY COW it’s utter chaos.  And I’m tired.

Thankfully we live where we do, and there is an organization that supports parents by providing one respite weekend per year.  I cannot wait to spend our time reconnecting and meeting other couples who live our life.

Autistic burnout is legit

Usually when WonderBoy shows growth in one area or another (being able to try a new food, for example), there is a backslide later.  It’s kind of a two steps forward, one step back situation, except we never know how many steps forward or back each time.

For the last few months, he’s been steadily jumping through hoops- going to summer camp for the first time, trying new foods, building his speech and language development, getting better at reading, even sitting up in front of 100 donors to showcase his development as a result of the integrated preschool setting he was in.

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(All dressed up and ready to present to 100 people)

During this time, we watched as all of this amazing growth took place, but we did so knowing that at some point very soon it might all go to hell.
On a weekly basis I would check in with his behavior specialist, and we’d remark about how incredible this was to see.  He had been meltdown-free, he’d been progressing, and it was wonderful to see.
I would like to take a moment here to mention something important to me.  We do not try to “normalize” him (ew).  We give him stim time, we allow scripting, and we give him what he needs in terms of sensory down time or up time.  We love who he is, and we would never want to change him.
What we do want is for him to be able to feel comfortable navigating life, and so as such we provide him with every opportunity to try new things in whatever way makes sense for him. If he likes the opportunity, he may try again!  If he doesn’t, we don’t force it-ever.

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(Making slime- I had to mix it for him because there was no way he’d stick his hand in a bowl of glue, but once it was done this made him really happy)

After his speaking engagement (yes, my 5 year old is apparently a motivational speaker now), things started to go sideways.  It was too much, and he made it clear to us that he needed time and space to recover.

What’s important to recognize is that he was able to Do The Things (so so many things) and that he was able to advocate for himself when he was totally over doing so much.

I wish that for all people, frankly.  To be able to say “No! I’ve had enough and I need a break” is something that too many people are convinced is impolite.

Take a moment for yourself.  Make some slime.  Go stand in the woods, close your eyes, and feel the glow of the sunlight as it crashes through the leaves on the trees.  Put on headphones and play music that moves you.  Whatever you need to recover from the daily barrage of life, do that.  Advocate for yourself.

 

 

Yes, it is possible to go on vacation

Yes, it is possible to go on vacation

Ah, summer vacation.  The words elicit memories of running through sprinklers in the backyard, sitting with friends on the steps while you eat popsicles until your fingers are sticky, and late nights catching fireflies.

<screeching tires sound>

Not in this house.
In this house, summer vacation means a halt to all special ed services, early bed times, extra melatonin doses on wild days, and keeping fingers crossed that we all survive it.  It means higher anxiety levels because the routine is broken.  It means cajoling the kids into trying things like swimming.  It means that at this very moment, two wild children are yelling about bananas and Sasquatch while I attempt to focus on what I’m saying… what was I talking about?  Oh, yes.  Summer vacation.

Three years ago was the last time we had taken a trip somewhere, because frankly traveling with kids on the spectrum is my personal version of hell.  It means ripping the kids out of everything they know and hoping that they don’t totally fall apart.

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The photo above was from our last vacation to South Carolina.  We drove for two days to get there, and that alone was pretty challenging.  Being stuck in a hotel room with kids who are completely out of their element is a special kind of difficult.  But both kids were still in diapers (so there’s that- fewer potty breaks on the road trip) and they both still rode in a stroller so we could keep them secure.

Fast-forward to this year, and we decided it was time to take another trip.  Frankly, my husband and I were getting a little zany and really needed some down time.  So I hopped onto my favorite travel site to look for a cottage to rent.  The plan was stay close enough to home to be able to easily manage potential meltdowns, while being far enough away to feel really AWAY.

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Oh yeah, baby… this.  So very much this.

I found us a place on the lake, about an hour from home. Easy-peasy.  It was within budget, could accommodate our entire family (including my mom), and we could relax and do the fishing that Speedy has been asking to do.

Within minutes of our arrival, Wonder Boy was nervous.  “We’re not staying forever, right?” “No, honey, we’re staying one week.” “But we’re not staying forever, right??”

This went on until the next day, when the questions steadily increased.  Fortunately, I needed to head home to grab items that we’d forgotten, so when I was there I grabbed all of his plastic sea creatures and insects (the more realistic looking, the better) and dumped them into his backpack.  I added his beloved National Geographic for Kids magazines and when I got back I presented him with his treasures.  He sat on a towel in the yard and proceeded to script one of his nature documentaries for the next hour.

The lesson here was clear: a piece of home (or several dozen, in this case) really makes all the difference when you’re traveling with kids of any abilities, but especially kids on the spectrum.  It’s all about the routine, the familiarity, and when you take all of it away it can be scary!

And then, something truly beautiful and magical happened:

They fished.

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And fished.

And fished some more.

Speedy sat still.

Let me repeat that.

Speedy. Sat. STILL.

I am still completely taken aback by this, because while I know that combined-type ADHD includes hyperfocus, we’d not yet seen true hyperfocus in him until the vacation.  Until the fishing.  And then… well, it was just about the best gift we could have given him and ourselves.  The gift of hope.

This showed me that yet again, I was entirely focused on getting WonderBoy through the process of a vacation, and had not thought about what it could mean for Speedy.
And I can’t forget the Teens.  They spent the week relaxing, drawing, photographing, and appearing to grow closer to each other.  This brought me great joy, particularly as my first baby, my oldest son, prepares to completely break out on his own.  He’s been at college for a year, and spends each summer working at a camp.  To say that we seldom see him would be an understatement.  I hope that he knows how much I cherish the fact that he could join us on this trip.

This post is starting to look like I just wanted to share all my photos.

The truth is, I do.  Why?  Because this trip was so much more than simply a week away from our daily lives. It was a chance to reconnect, to find ourselves, to find promises of what can be. This trip helped me find…me.