Author Archives: simpleijustdo

We Miss You Already

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Doo-da-LINK! My phone screeches that I have a new text.  I roll over to see that the world is waking and the news is spreading. I realize suddenly that it wasn’t a dream, and I roll back over to try to get that last half hour of the three possible hours I could sleep that night, rather than reply to the text right away.  I couldn’t sleep the previous night and had gotten back up around midnight to jot down some new ideas for some lesson plans I was redesigning, when I received the devastating email that would keep me up for four more hours.  The email that explained the woman who had been my son’s ASD teacher for his first three years of school was dead at the age of 38.

She was shorter than me, more energetic than me, and overwhelmingly happy and bubbly.  She loved her students fiercely, and never allowed the NT students to treat the ASD students differently.  On one field trip in Kindergarten, I stood next to her as she told the fellow student who had just talked to The Boy as if he were an infant, “He’s not dumb, ya know! He’s the same age as you!” or something to that effect.

She was persistent.  If a strategy wasn’t working, we’d try something else.  She was honest to a fault, coming to me for ideas when she had run dry.  She got in trouble with her superiors more than once for trying to make sure my kid had the supports he needed, even if it was convincing her own husband to come and “hang out” with The Boy because his own dad wouldn’t step up.

And then she was transferred to a different school.  And then her husband was transferred across the country.  She made an effort to stay in touch a couple of times a year, via email or a card.  I can remember one time when The Boy was beginning to melt down, and he decided to write her a card — magically, whatever had been upsetting him was settled.

She was his first teacher in his corner.  She loved him fiercely during a turbulent time in his life.  She risked herself for my son.  And for that, we will both love her dearly always, and never forget her.

Rest in Peace, RBS.

Nurturing the “Us”

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It is much easier with two.  Two people who can give each other a break from time to time.  The Man will often take The Boy to the park on a whim, or just for a ride in his truck (often ending with a trip to DQ).  I can’t tell you how much I love that, and appreciate him and am AMAZED at just having someone like him to do that.  The three of us are together only about every six weeks, and it’s not perfect all the time (what blended family is? For that matter, what typical family is?), but I appreciate it all the more because of the time when it is just we two, and I. am. it.

Don’t get me wrong.  I love spending alone time with my son.  There aren’t words to describe the bond we have, and we are silly together and go on adventures together… We are lucky to like each other a great deal.  He is a fantastic kid, smart as a whip with an amazing sense of humor, an uncanny memory, and so many special talents.

But we have some dark times, too.  We have some days where a cloud hangs over him and just won’t let go.  We have days when I can do nothing right (in his eyes and/or my own), and it seems like tears are flowing from dawn until dusk.  My hair has been pulled, I have been punched, bitten, and kicked.  I have lost it myself, at the end of my rope, not having any inkling of what to do besides curl up and cry.

couple-hold-hands-in-silhouette-at-sunset-16no...

(Photo credit: mikebaird)

Having two of us to tag-team, as it were, prevents many (not all) of those dark times from getting that far.  If one of us is getting overwhelmed and irritated, the other will do something about it.  And THIS is how adult relationships survive around autism (and really in any family).  Brace yourself, because I’m going to say something controversial: Kids should not come first above all else.  That relationship between the adults is paramount, because if that falters, the support for the family disappears.  This is especially hard for us special needs parents to understand because our kids need us so much more than typical kids.  But then, our partners need us so much more than typical partners do, too, right?  Raising a special needs kid is hard.  We must take care of ourselves, and we must take care of our partners.  We must nurture the “us”.  If we make that a priority, we and our partners can take care of everybody else.  Together.

Thoughts?

Blindsided

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Dentist

Dentist (Photo credit: Joel Price)

I have gotten pretty good at predicting what will trigger a meltdown, and at analyzing what, in fact, actually did cause a meltdown.  There are times, like today, when I have no flippin’ clue what the hell happened.

I made a dentist appointment for The Boy.  I prepped him for weeks, and even made an appointment for me right before his, that was supposed to be quick, the way they made it sound.  I cannot make appointments during school or ESY, because if he misses school, I hear about it for years.  That’s not an exaggeration.  He must not miss school.  And I had tried twice to make this appointment before I was actually able to make it, due to the wonky office schedule.

We arrived, everything was OK.  I had my consult, and then my cleaning, which took about an hour.  During this time, The Boy was a little nervous, but OK because they let him wander around and be comfortable, which I really appreciate.  And then, near the end of my appointment, he just freaked.  Something to do with the clock striking three, and we had been there for “hours”, and couldn’t we make time go backwards?  Inconsolable crying, tears, sobbing.  And it just wouldn’t stop – he was out of reach.  We had to reschedule his appointment for a much more inconvenient time, right at back-to-school time.  Ugh.

Is an hour a long time?  I suppose, but he is usually pretty good about this kind of thing.  Should we have done his appointment first?  Probably not, because the freak out would have happened whilst I was in the chair being scraped and polished within an inch of my life, and then what? And why all the references to time??  Here’s a theory: I think sometimes he convinces himself of things that will happen and deadlines that will be met (in this case, we would be done by 2:45pm), and with that lack of “theory of mind,” he thinks everyone knows his thoughts.  And we don’t.  And when things don’t happen the way he has envisioned, and the deadlines are not met, his world falls apart a bit.

But I can’t predict that, and I can’t prepare for that.  So sometimes I get blindsided.

An hour later, and he is finally calming down, but resolved to find a remote control that can make appointments go quicker, and can make time go backwards.  You and me both, kid.  You and me both.