Border Dweller.

“I want Mommy to get your….”  The last part of the sentence trails off as he opens the heavy drawer and finds what he was looking for himself.  A different Wii remote controller, in this instance.  He has become more independent as he entered the age of six.

Sometimes, there are moments he passes for neurotypical.  Is that something I strive for or am proud of?  No.  But daily, it’s something that happens.  One minute he’s any six year old boy.  The next I am reminded how he is different.  It’s like that all day, every day.  I wonder if it will ever change, or if this is it.  Not because I’d prefer one over the other.  The fact is that just as I settle into one understanding, I’m moved in a different direction.

Just a kid in class.

Add to that, when he is acting as any other six year old, I expect him to “behave” accordingly. There are limits on what is acceptable and what is not.  Where those lines in the sand are drawn depends on his abilities and disabilities, and therein lies my quandary.  Where do I set the limits when the borders keep moving?

In a moment, he is Gill Grunt, playing Skylanders, racking up points, unlocking gates, and amazing me with his ability.  In the next moment, he is toe-walking and screaming so loud he could shatter glass, as he unlocks new secrets to his video game.  Yep.  That’s definitely different.  I can see how he could make friends in one minute and freak them out the next.

No matter what a “neuro-diverse” movement wants to advocate for, in terms of acceptance for adults, my son is six.  The peers he will come in contact with, as he heads toward first grade at a new school, will be six.  Whatever they have or have not learned at home will be what they take into any potential relationship with my son.  And if there is ignorance and intolerance in their home, they will use that in interacting or not with my child.

My goal for my child is to NOT be emotionally scarred by a child who does not understand, accept, or attempt to do either, with my son.  While I can advocate for understanding and acceptance of differences through education with organizations such as A Touch of Understanding, my son still needs to learn blending, reacting, acting, and behaving in a socially acceptable manner while retaining his self-esteem -tricky.  But he’s much less likely to be emotionally abused or scarred if he learns all that.  And that is why I appreciate and use ABA as much as he can tolerate a day.

Last year, I was warned by ABA that my son was not emotionally mature enough to make it through kindergarten.  I was advised that he be held back a year.  I was having none of that.  I demanded placing my son in a neurotypical kindergarten with a full-time ABA aide.  Academically, I knew that he was ready.  And despite their misgivings, my ABA behaviorist and his team, supported me 1000 percent.

Practicing for his future valedictorian speech.

Because of this united front and his very hard work, my son graduated from kindergarten on Friday.  He was promoted to first grade.  He was consistently above standards for reading and math. He met standards in all other categories but two: “reciting chants, poems and repetitive patterns” (ironic based on his echolalia) and “observes and compares” where he received 2+ on both, 2 being making progress toward standards, out of 52 total categories of marks.

Hamming it up onstage.

The day after graduation, we were at the store, he looked at me and said, “Does your tummy hurt?”  Of course the “your” refers to him.  One of the classic tells of his autism (misplaced pronouns).  I asked if he wanted to use the restroom.  I actually know better because he always, without fail, says no.  To this he added, “Does your ear hurt?” and when I asked, he said “yes.”  And, as usual, I was left not knowing what was going on.

However, knowing my son’s sophistication in the realm of manipulation, I assumed he was trying to juke me out of the bathroom run by faking the earache.   I took him to the bathroom.  Eventually, I set my son in front of the child size sink to wash his hands and turned away to wash my own.  As soon as I did, he let out the loudest, power-filled scream.  He did this:

Ow.

The child has no peripheral vision.  Hello, sensory processing disorder.  I forgot about you.  As best as I could tell, he was getting very close to the soap dispenser to examine it and hit his head right against the edge of it.  I cleaned it off and gave him a kiss, getting him quickly back out in the store for distraction.  He forgot all about his injury.  I would call his reaction an adverted meltdown,  a reminder of what used to be, lucky, and a sign of progress.

Checking out surfboards one minute  to asking daddy to carry him the next

It’s been a lot of strange days.  Minutes of playing quietly, changing tires on toy cars with questions of whether I want to help him.  Then, he grabs a toy with a siren and lets out siren noises so loud, I think he’d qualify as a siren himself.  Of course, that is his new stim, sirens.  It could not be lullabies, could it?  Or brushing his mom’s hair?  Or cleaning his room?

The next minute he wants to cuddle on the bed and read a book.

I know he’s fortunate in a lot of ways.  But living with this kind of border dweller has given me the “pleasure” of dealing with those who don’t live it, question what our autism is and whether he “really” has it or whether I’m just a lousy mom “using” an excuse.

My son is regularly monitored by an awesome neurologist who specializes in autism.  My child takes seven medications a day (2 are for asthma), engages in 40 hours a week of ABA, an hour of speech and an hour of occupational therapy per week, and practices reading, writing and math for, on average, an hour every night.

I must be lazy, looking for excuses, spoiling him or doing something wrong.  There’s gotta be at least an hour in there where I’m wasting time with grooming myself, blogging, or cleaning house.  I guess I’ll have to try harder.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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17 Responses to Border Dweller.

  1. blogginglily says:

    So you’re saying you LIKE your doctor? This is all news to me. . . 😉

    Sirens?? That’s his stim? Nice.

  2. Hello fellow border-dweller. I know you all too well.

    There are so many time where *I* second-guess the diagnosis… still. One minute, she’s playing chase on the playground with friends — she looks so typical as she runs and laughs on the playground. The next? She’s screaming and crying full volume because one of her friends has touched the wrong thing in her sand table. It’s so difficult — never knowing whether to expect Dr. Jekyl or Mr. Hyde.

    I too worry for her future — what happens when she gets to the age where mommy can’t be around to help her communicate? Who’s going to help her find her voice? Interpret for her? Protect her from those too ignorant to try to understand? I don’t want to go there. Not yet. But the future is a frightening place indeed.

    • solodialogue says:

      Jekyl or Hyde crosses my mind now and then… A lot of the time though, it’s just that he crosses over and I’m looking for him on the wrong side, you know?

      I know it can be frightening but the little bit I’ve learned is that, as they grow, they gain strength and power and with it comes confidence. It’s that confidence we must protect. The rest will come.

  3. Tessa says:

    Wow, this border is getting really crowded. We live here too, on the border between autism and typical. It’s a difficult life, but so worth the struggles.

  4. Lisa says:

    The first neuropsych we saw for Tate told us he was “blurry”. He is definitely autistic in ways…and yet, he acts and looks like a neurotypical kid in others. So I guess we straddle the border at times, too.

    Um, you are so not a lazy mom using it as an excuse. Puh-lease!! Because of all you do, he is doing all HE can do. Keep on keeping on, my friend.

    • solodialogue says:

      “Blurry”. That’s probably what our pediatrician would’ve said if she’d thought of it. I can understand it. Thanks for the encouragement – my words were just a tad sarcastic… 😉

  5. We live here a lot too. At nearly six we are still sorting out what areas he is truly different and needs to learn another way (this seems to be social cues) and what areas he is simply delayed in and it will happen in a typically developing pattern but just later than neuro -typical peers (this has been things like pretend play for him). But, there are so many things I just don’t know where they will fall. it’s all about patience sometimes, I suppose.

    • solodialogue says:

      I knew you would be wandering around these parts too. The social is difficult – it’s still difficult for me! And like your son, mine is developing too, just at a different pace. Don’t forget, it was the tortoise that won the race. 🙂

  6. Really powerful post. The part about not wanting your son to be emotionally wounded, the kindergarten success despite experts opinions, the pronoun examples, the processing disorder….wow….that’s a whole lot in one post….you do know that…..this screams of what a wonderful mother you are!!! 🙂 Hugs, Sam

  7. I have a boarder dweller too. It’s always interesting, those moving boarders. Glad your guy is okay after the soap dispenser run in.

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