What to do when things go sideways

Some mornings are just more challenging than others.  This morning was about as difficult as most, and this morning’s big fight came when WonderBoy was ticked off at me for not letting him lick the end of the toothpaste tube.  You know, the end where the toothpaste comes out and there’s always a little bit sticking out.

His response was to close the bathroom door and angrily unroll an entire roll of toilet paper.  The brand new roll.  What I imagine happened next was that he flung the toothpaste off his brush and onto the counter.  I don’t actually know, but the paste was on the counter and his toothbrush was in the sink.

I then had about 5 seconds to come up with the logical consequence.  In cases like this, it’s not hard- clean up the mess is the only logical way to go.  But our brains don’t always work like that.  As adults, we think about how we literally just bought that toilet paper and the toothpaste, and our brains flash with the thoughts of how hard we have to work to earn the money to pay for said items. But the thing is, kids don’t get that.

I stuffed the words I wanted to say back into my mouth, and asked him to clean it up.  He was…less than amenable to that decision.  But one thing I do know about him is that if I wait a few moments, he’ll come around.

Logical consequences are hard when your brain doesn’t always want to cooperate with you.  But they do serve as important moments for the kiddos, because they go a lot farther than things like “no tv for you!”

Now, with 20 teeth brushed (make that 40, with Speedy having also brushed), and the bathroom all cleaned up, there is some not-so-quiet imaginative play happening. Whew!

The Meltdown

The Meltdown

I want to share something rather personal with you.
Wait, haven’t I been doing that all along?  Well, sure, but that’s been mostly about the kids.  This one is personal-personal.

One of the things I’ve recently been able to put into words is the fact that all the components of my life (work, kids, finances, etc) occupy tabs in my brain like the tabs in your search engine.  Currently on my computer, I have five tabs open.  One for email, one for the calendar, one for my Google drive, one for Facebook, and one for this post that I’m typing.
My brain really is no different.  And just like I have trouble closing any of the actual tabs that I just listed (because they’re ALL important!), I seem unable to close the brain-tabs.

Each of my four children has their own tab. Work has a tab, but also each of my side projects at work occupy tabs.  Our bills have one, my husband has one, and our current homebuying chaos has one. That’s eleven tabs right now.  Oh!  And the Special Ed PTA has one.  Twelve.  It’s like my brain is having its own IEP meeting.  Heheh.  That’s an image.

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So.

I can’t close them.  And they’re all running videos and music and one has gifs and none of them are running an adblocker so there are ads too.

Know what happens when your computer has this much chaos?

Yup.  That.  It slows waaaaayyyyyy down. And at some point it decides it can’t do anything you want it to.

And that’s what my brain did this morning.  As my amazingly patient husband and I were talking about house shopping, I started rocking back and forth.  My heart rate increased, and all conscious thoughts flew away.  All I could feel was the steam building like in our Instant Pot, and that valve needed to release or the lid was going to blow.
I vaulted myself into our room, away from the kids, curled into a ball, and proceeded to completely fall apart.
Right on my heels, holding my hand the entire way (I think, it was all blurry) was my husband.  Reminding me to breathe.  Stroking the back of my hand.  Talking in hushed tones.  Letting me pull the pieces of myself back into myself until I started to feel whole.
Only, it doesn’t ever happen just that simply.  It comes in waves, you know, and the body-wracking sobs began again.  The hyperventilating began again.  And once more he stepped in, bringing me back.

Eventually, exhaustedly, and with a LOT of help, I was able to come back around to me.  I hope that makes sense.  It’s almost as if I’m somewhere else when this happens.  You see, with each new “thing” (a deadline, a stressor, even the happy stuff) there is a tiny, barely perceptible fracture that takes place for me.  And when there are enough of them, and I don’t take the time to acknowledge and work on them, those fractures become major fault lines.

I’m starting to feel like I have too many analogies happening here, but what I am really trying to get to is this:

Take the time.

Breathe.

Acknowledge for yourself that this is hard, and that you may need help identifying the first step.

Take that first step, and then the next.

And breathe.

Balancing inclusion and community

Balancing inclusion and community

You might think that words like “inclusive” and “community” mean the same thing, and much of the time you would be correct.
I recently began to see how important a sense of community is to our family, however it didn’t come from an inclusive program.  It actually came to us in the form of a camp specifically for kids with developmental disabilities and/or mental health diagnoses.

Before you start to question where I’m going with this, please know that I am all for inclusion. It’s the vision of the agency I am dedicated to, and it is my own personal vision.  Inclusion allows our children to learn from peers, and it allows their typically-developing peers to develop a better sense of empathy and welcoming to people who may look or act differently from them.

I do also feel that there is a lot to be said for groups where people can come together with a sense that the other people in that group totally get it.  Other parents at the camp our boys attended understood when I might show up with a tear-streaked face.  They’ve had the challenging days and have been through the battery of tests, doctor’s visits, school meetings and more.  The staff got it too, and were always incredibly caring with kids and parents alike.  To know that your children are with kids who all share similar struggles is comforting.  For once my kid’s weird wasn’t standing out. I know. Controversial thing to say.  But when you’ve been stared at for the stimming, the echolalia, the scripting of an entire nature documentary while in the shopping mall, you start to crave time with people who get it.  You just do.  And it’s okay to want that!  It’s okay to seek it out!  And it’s really good to have it help you balance out all the inclusive activities.

The most recent non-inclusive activity for the boys has been swim lessons specifically for autistic kids.  It’s a very small group with an approximate 1:1 ratio (four teachers, five kids) and they PLAY.  Speedy was really anxious, after having tried regular swim lessons for two years.

“I don’t have to put my feet down on the bottom, do I?”

“I can’t swim in the deep end, are they going to make me do that?”

“I am NOT diving off the board, that is way too scary”

“I don’t have to try to touch the bottom, do I? I can’t reach the bottom.  I don’t have to touch bottom, right?  They’re not going to make me do that, right?  I don’t…I can’t…I won’t…I’m scared.”

This went on a repeat for 24 hours prior to the lessons.  He asked quite literally every person he saw, regardless of their connection (or lack thereof) to the swim lessons themselves.

In other words, he was stuck.  Really stuck.  And even when he heard the answers, he was stuck.
But when we got there, and he got into the water and they began to teach the kids in a way that looked like play (genius tactic, btw), this child shed all fears and swam.  He swam underwater, he jumped in from the side, he got super comfortable and he stayed there for the full class.  No meltdowns, no anger, no refusals like we saw before.  Just…fun.

Wonder Boy was his usual apprehensive self. Water makes him incredibly nervous, particularly around his face.  He got through it, however, and only got out once for a bathroom break.  His teacher is a friend of ours, and the mom of a classmate, so he was at the very least in comforting hands, and he didn’t cling to her nearly as much as he has to me in the past.

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All of this leads back around to one thing- there are absolute benefits to the sense of community that happens when we can be with people who live this life, and there are totally undeniable benefits to the other sense of community that happens when the typically developing world welcomes us, gives us time to handle and process information at our speed, and takes the time to meet us where we are, that they may see the world the way that we do.

Two different forms of community, like a yin and yang, balancing each other out. They seem opposite to one another (inclusion and exclusion), yet they are related and both forms of community really need each other in order that both may be successful.  Being in a group just for us gives us a chance to recharge after being in an inclusive environment.  Being in an inclusive setting can bring us new and unexpected connections and knowledge, and lets us share a little of ourselves with people who can then learn from us.

 

Inclusive autistic traits

I love this very inclusive list of the many varied traits to be found in people who are somewhere on the autistic spectrum. That’s just it, isn’t it- it’s a spectrum! It’s definitely NOT a straight line of traits, it can be all over the place in each person and that’s what I love about it so much.
This is my first reblog, methinks.  Please read it, and then head on over to the author’s page to “like” it!

autisticality

Problems

Autism is big and messy and confusing, and no-one really understands it. It’s difficult to make a good summary and description of autistic traits, because generally no-one can agree on what autism actually is. But even taking that into account, I’ve never read a satisfactory article or leaflet summarising and describing autistic traits.  Every description I’ve ever read suffered from at least one of these problems:

  • Wrongly weighted. So many descriptions of autism written by neurotypical people focus completely on social traits. Often autism is described as an entirely social thing, and any other differences are considered incidental if they’re mentioned at all.
  • Vague. The “triad of impairments” is the worst offender here. It divides social traits arbitrarily into “interaction”, “communication”, and “imagination”, but there is absolutely no clear distinction between those categories. They’re meaningless and useless divisions that don’t remotely simplify the description, and so they serve no useful purpose…

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Uh…a little help here?

Tomorrow is the first day of a brand new school year.

To say that we’re ready would be a dramatic understatement.

So what do you do when you’ve had enough, when you feel your patience slipping away, a veritable mudslide washing away the ground beneath a house?

Well, the first thing you must remember to do is to breathe.

It’s okay, we all yell once in awhile.  And while there are 24,000 articles on the internet waiting to tell us how horrible we are for losing our tempers, right here is a post telling you that you are normal.  You’re going to get stressed out.  And it’s likely going to happen on the night before the first day of school, when you have just spent 45 minutes reminding your child to eat “no, sweetie, one strand of spaghetti is not enough.  PLEEEEEEAAASSSSE could you take another big bite” and you feel your temperature rising and you are worried about the many items on your child’s school supply list and you have spent weeks preparing your child for THIS exact moment and your other son is contorting himself into pretzel-like shapes while rolling his eyes up into his head and mimicking a Saiga Antelope and disassembling a cucumber slice, one seed at a time.

You’ve packed the backpacks.
You’ve met with the teachers.
You’ve emailed the aides, the special ed teachers, the Occupational Therapists, the principal, and the head of special ed in your school district.
You’ve written social stories. (more on that in a bit)
You’ve read said social stories over and over.
You’ve visited the classroom.

So when you’re on the cusp of the beauty which is that long-awaited first day, why on earth would you get so snippy?

Well, if you’ve ever seen Ol’ Yeller, you know that the boy in the movie starts yelling at his beloved dog in an effort to make saying goodbye easier.
I would bet that the night-before-school snippiness would be for similar reasons.

Think about it- it’s never easy to put them on the bus and say goodbye for the first time.  It’s not easy to see them go regardless of their age.  When I see my 16 year old off for his first day at school, it’s not easy.  The year is full of so many unknowns for them, and all we can do is hope that we’ve done everything we can to prepare our kids for what lies ahead.

So, I say again: BREATHE.  Good!  Now do it again.  Sit down on the couch with your kids, give them lots of hugs, and remind them of all the reasons you love them so much.  It’s good practice anyway, and it may be the restart your brain needs. And then tomorrow morning, when you put them on that ginormous yellow bus, give yourself a hug and remind yourself of all the reasons that they love you.  

The second thing you need to do now is know that you’re giving them the tools they’ll use in the world.  For some kids, that means a communication device.  Others, a PECS board.  Still others yet, sign language.  You may be working with them on how to manage transitions, or you may be focused on difficulties with eating.  Some households are working on all of these and many more, all at once!

Give yourself room to understand why you may be particularly stressed.  Remember that while you’ve been teaching your children to use these tools, you’ve also been learning how to use them.  You may be figuring out that transitions are hard for you as well, and utilizing the same types of methods that your children are using.  You may have recently realized that you need substantial recovery time from major events in order to be able to attend to certain tasks. Guess what?  Your kids probably do as well.

And while we’re comparing you to your kids, keep in mind that you have spent all day at work, focusing on a million different things and interacting with a lot of people.  When you get home to the place which you’ve filled with all the comforting things, you may start to unravel.  You may start to come unglued.  You may experience some meltdown.  We see it day after day, the minute the kids walk through the front door it falls apart.  Holding it all together at school is hard- it takes energy to maintain certain accepted behaviors, and that requires time to reboot.  We as adults are really no different.  This is my theory as to why we’re far more likely to snap at loved ones than coworkers.  Some studies have indicated that it’s more to do with the quality of home life versus work life, but I suspect that for some of us it’s really that need to do a hard reset.

If some of this sounds as though I’m telling myself, you’re right.  I tell myself these things whenever I feel that mudslide pulling me down.  I hope that this has helped you to know that you are doing an AWESOME job!

It’s hard to believe that the boy in the far left photo is starting his sophomore year in college (this is him in first grade, I believe).  The boy in the middle is starting his junior year in high school (this is him in Kindergarten).  The boys on the far right you may recognize a little better, although the view is less than ideal.  This is Wonder Boy and Speedy, as WB went off to his second year of pre-K and Speedy sped off to Kindergarten.  They’re now going to first and second grades, respectively.

It goes by quickly, y’all.  Too quickly.

Do we have to “people”? Yes. Yes we do.

Okay, I’ll confess:  I am NOT a Playdate Parent.  I vowed early on in my parenting career (gack, nearly 19 years ago!) that I would not schedule the abomination known as The Playdate.

So, um, we had three playdates this week.

Yeah.  I also swore I’d never be in the PTA, and now I’m the secretary of the SEPTA (Special Education PTA) in our district.  My husband finds great amusement in seeing me do the Things I Said I’d Never Do.  Hey, maybe that should be my book title!

The point is, as we get older and wiser, we discover that by avoiding certain things we might just be missing out.  I’m not all that good at social settings unless I know someone, but on the flip side I’m LONELY.  I want friends.  My kids need friends. And like the vegans in our lives, I’ve spent an abundant amount of time talking exclusively about the subject that is the focus of my life (autism and ADHD, in case you’re new here).  And like the vegans in our lives, many of my acquaintances have just stopped listening.  I am not saying this to slight vegans, I know and love many people who have made this decision for themselves and I admire it.  What I am saying is that when we have a specific focus in our lives, whether it’s diet, a new favorite sport, or our children’s neurological differences, we tend to talk about it.  A lot.  A whole lot.

A friend recently published his book about making the incredible transition from avid carnivore to vegan, and he talks about this early on in the book.  I related to much of what he said, and it helped me to see that for me, having a focus like this has been fairly isolating.  It’s also been rather freeing.  I mean, I’m in a still relatively new job and I have an opportunity to reinvent myself somewhat.

So there we were, finding ourselves scheduling playdates and putting parties on the calendar.

Parties.

With people.

My husband and I joke a lot about not wanting to “people” (as a verb).  But the fact is, I’m aching for interaction.  Don’t get me wrong, he and I have an incredibly witty banter, and frankly should take our show on the road. But when we’ve become the sole audience for each other, I worry that the isolation has been caused by my own stubbornness.

So, I’m putting it out to the universe.  I have a colleague who says that every time I put something out to the universe it comes true.  So I will put this out there- I am making a conscious decision to be more active, to get closer to people, and to do what I’ve tried to teach the boys- talk about what other people want to talk about rather than fixate on my own topics of interest.

Which leads me to this- if you haven’t read this book yet, and need help teaching conversation skills, I highly recommend it.

The Conversation Train by Joel Shaul 51cq7lHl0OL._SY385_BO1,204,203,200_

How do we start?

My intentions this week were to sit down and write a long-awaited and much needed post about ABA (Applied Behavior Analysis). It was going to require research and thought and careful attention to detail.

And then this week happened.

The world, and our country for sure, has been thrown deeper into turmoil.  People I love are scared and I am scared for and with them. More than ever, we need love and strength.

With that in mind, I have to talk about how to be together.  How to teach love.  And this is something that is vital for all humans- regardless of race, gender identity, ability, sexual preference, socio-economic status, and personal history.  First and foremost, we are human, and humans need to be loved.

To my left is a cube given to my youngest son by the Executive Director of the agency where I work.  It shows photos of people of different ages. It shows people from countries all over the globe.  It shows people in wheelchairs and people who are standing. It shows them together.  Smiling. Being part of something bigger than themselves.

To my right is my youngest son.  This child to whom we are to impart all our wisdom, chaos, silliness, and love. This child who, like all children, was not born with hate in his heart. This child who we already have taught and will continue to teach that people deserve love, and that people have differences and similarities.  This child who is fortunate to live in a place where he has friends who don’t look just like him.  This child who already knows that it’s okay that people look different or act differently, and that those same people are indeed his friends.

I do not say all this to puff myself up and pat myself on the back.  I say all of this to you now because it is truly our duty as people, regardless of whether we have children, to teach children that the world is a diverse and amazing place.  To teach children that we must reach out and get to know those who have walked a different path.  To teach them that if they see someone in a wheelchair or someone who doesn’t (or can’t) speak or hear or see or someone whose skin looks different that this is not a moment to turn away because of differences.  This is a moment to say hello.

Say Hello, by Lisa Loeb… watch and enjoy!