UPDATE: Please note that we do NOT EVER use restraints. Nor do we leave my child in a ''safe, padded area to work it out himself." The photos and methods used are the least aggressive possible and have been approved by a team of specialists. He is only ever held by a therapist or parent and only in a manner that prevents self-harm and no other restraining methods are used, nor is he EVER left alone. The goal of this method is to reduce self-injury and encourage self-regulation improvement while neither isolating nor punishing.
I saw a video of an autistic child that was titled ''Meltdown.''
Said child was sitting on the floor, leaning against a couch and crying. Wiping
his own tears.
I don't want to belittle what that child was feeling. I
don’t know how else the chid behaved or what the trigger was. I don't want to
be ''that'' Mom who thinks she knows all.
But I do wanna talk about it.
I watched the video in its entirety. From crying through to
re-direction ...the child cried. Sniffed. Wiped his own tears. Looked around.
Cried some more. Then was bribed away from the meltdown to a new activity.
Now, we’ve had these moments because … well… yeah... but we
don’t even discuss them as a rule. And if you think this is what < I >
mean by ''meltdown'' then we are on different pages, you and I. I would never post a video of my boy in full on meltdown. I
wouldn't do it. There are a plethera of reasons not the least of which is that
people would begin crossing themselves when we walk by. I’m sure there’s
education to be had this way, education about autism and meltdowns and learning
what is or is not part of life with an autistic child, but my self-serving online
venting is not the place, nor do I want to share a visual of my boy that way.
It’s too hard.
I do want to shed some light on this though because after my
last post about My Boy's meltdown at the grocery store a friend asked me how I
know he isn't just being naughty. How I know it’s the autism. What's the
difference?
I'm going to start with this: He CAN be naughty. He can
be bratty, selfish, obnoxious, defiant. And there ARE times when it appears to be simply the result of his
being a 5 –year-old only child who is also a wee bit spoiled. Yeah. Spoiled. K?
K.
And there are times when it seems that he is simply
obstinate. Strong-willed. Defiant. Opinionated. Because he undoubtedly is: he’s
mine. K? K.
He can also be sweet, funny, silly, playful and obedient.
The result of his being a 5-year-old only child who is loved and cared for. K?
K.
And then there is the fact that he has autism.
And well, the kicker is that we can't always separate the
'autism' from the 'typical' in him because, for lack of a better analogy, it’s
not psoriasis. You can’t say ‘’this patch is psoriasis/this patch is typical
skin.” They aren’t distinct and separate
quite that way. And no matter what
his diagnoses (and there are tons), he's a 5-year-old boy. So outside of
language issues and comprehension issues and social issues and, and, and...
he's five. And he's a boy. And he's unique. He’s an individual. He’s a person. And
there are a myriad of thoughts and ideas and reasons in him just as there are
in any other person.
He’s not one thing; he is many.
And separating a diagnosis from his personality is often
close to impossible because it's like asking me to separate all the books I've ever
read and experiences I’ve ever had from my thoughts as an individual. They are
a part of who I am. Even the thoughts that are negative and that I am working
to improve are a part of who I am. And I can’t say ‘’I have this thought only
because I read ______ book” because one of the truths of being human is that we
don’t know if I would have had that thought eventually anyway, or if I only had
it because I read something that triggered it. It’s possible. But we don’t
really know. I can’t unexperience my
past and say “this is the essence of me minus _____”. And as much as we try, we
can't unautism him and say "this is
him minus autism.”
Is that clear as mud? MMMkay.
So here is what I do
know. With autism there are certain behaviors that are common that are not as common in neurotypical
children. Like lining up toys. Or smearing poop on the walls. Or having rigid
behaviors. Or disordered language. Behaviors
or ‘symptoms’ if you will, of autism. Behaviors that vary amongst the
spectrum but that are still associated with autism. Behaviors that you can
address with therapy and intervention and medication.
Behaviors like meltdowns.
So… what am I calling a meltdown?
Well, it’s not a fit over a lollipop at the checkout
(although that can lead to one). It’s not kicking me in the shin because I took
away the pretty knife he was inspecting (although that can lead to one) and
it’s not throwing himself on the floor and pounding it with his fists because I
interrupted his playtime (although that can certainly lead to one). Those are
what I would call ‘NT’ behaviors. Things a 2 or 3-year old would do when they
are learning boundaries and believe they are the rulers of the universe. Only
my son is 5. So he does these things (still) not unlike a 2-year old, in spite
of the fact that on a non-verbal IQ level,
he is 5 (More attempt at separating ‘this’ part of him from ‘that’ part. Yes, technically
there is a difference between verbal and non-verbal IQ).
And here’s where ‘’is it brattiness or autism’’ gets tricky;
what can start out as something we would otherwise call brattiness (aka 2 year
old behavior in a 5 year old) can turn into a meltdown.
One of the defining characteristics of autism is the absence
of, or reduced ability in the area of, emotional regulation.
I can’t say ‘’they’’ all do such-n-such but I can tell you
about my boy; he can NOT regulate his
emotions.
So it gets too cold in your house you either *turn off the
a/c or *turn on the heat. It’s the same with emotions. We’ve all known adults
who don’t know how to ‘’turn it off’’. Road rage. Abusers. They get angry and
it just builds at an uncontrollable speed until it explodes. That’s what
happens with my boy. But instead of it all being outward (like road rage) it’s
primarily inward. I might get caught in the storm, but he turns in on himself
like some kind of imploding bomb.
As he gets more and more upset he transitions from crying to
screaming to a kind of guttural bellow that gives me fantasies of holy
water-water guns; like instant ‘get thee gone’ in a pocket.
Because it’s scary.
And it’s hard to watch.
He gets so upset that no, you can’t distract him. You can’t
re-direct him. You can’t stick a lollipop in his mouth or toy in his hand and
pop the bubble. So the whole ‘’giving in’’ debate about fits in public does.not.apply. This isn’t just a debate
about strong will, although he has that too (yay). It’s about being out of
control. At its worst he hurts himself. He can knock himself out on the floor.
He scratches at his face. He thrashes. Sometimes he cries for me but even as I
try to hold him he’s so gone that he
is thrashing and screaming in my arms. I can’t comfort him. I can’t make it
better. I can tell him to stop but
it’s an empty and ultimately heartless response because he CAN’T stop. He is so overwhelmed by the emotions as they build that
they tear him apart.
He … melts…
There are millions of theories about tantrums.
Spanking. Time-out. Time-in. Ignore. Talk it out. Distract.
In our experience, none of them work on meltdowns.
None.
All I can do is be there and wait. Hold him to keep him from
hurting himself. Keep calm when he can’t.
At some point (vomiting or coughing maybe, but more usually
exhaustion) he will stop. He gets so exhausted that he will fall asleep still
screaming or sobbing. This leads to night terrors. He will be caught in a fit
and unable to wake himself. It’s inevitable after a meltdown. How can his
subconscious rest when he falls asleep utterly distraught? It can’t.
So what triggers a meltdown?
Ahhhhh jeez.
Sometimes it’s the lovely word ‘’no.’’ My fallback word
that, in spite of all my ‘positive re-direction’ training, I still use.
No, you cannot
have a bag of artificial corn, BHT and red food dye. No, you cannot touch that woman’s bottom. No, you cannot lick that
wall. No, you cannot punch that
4-year old just because he is breathing in your ‘space.’
But let me assure you it isn’t just the word ‘’no’’ itself.
It’s the re-direction. It’s the inability to have ‘it’ now. It’s the inability
to anticipate what will happen next if option _x_ does not happen. It’s a
change from the plan in his mind that I am not always even aware exists.
So some of that might be personality. Some of it might be
autism. Some of it might be receptive language disorder or expressive language
disorder or it might be the direction of the wind blowing. Whatever it is sucks. It’s a little boy overwhelmed
and a Momma doing her darndest (my Mom reads these posts) to help her boy
manage life.
And let’s pause right here at the eve of a helpful
oh-I-know-how-to-deal-with-your-kid outpouring: don’t recommend The Strong Willed Child to me. Again.
Have it.
Read it.
Tried it.
Nope.
Yes, tried it consistently.
Nope.
No, really. It didn’t.
Because this idea only takes into account tantrums or
defiance that are triggered by a negative or ‘control’ factor. It doesn’t account
for the meltdowns that are triggered by a siren. Or a cellphone playing some
awful pretend-music. Or a stranger making eye-contact with him. Or someone
telling him he’s cute. Or the nice greeter offering him a sticker. Or the kid
who asks him to play. Or sleeping late. Or waking earlier. Or I put
strawberry-orange juice in the blue cup instead of the red cup. Or music is
playing overhead. Or I put his right sock on before his left sock.
Or I touched his Legos immediately after washing my hands
and now his Legos are potentially contaminated with water and wet Legos
= hell on earth.
And it doesn’t consider that positive emotions and experiences can also trigger them.
He does something amazing? He gets super excited? He gets
tickled to hysteria? He plays chase until he is giddy? He enjoys something so
much that his excitement or joy exceeds his ability to regulate?
Meltdown.
From too much joy.
Yeah.
So even in play, when other kids are jumping and bouncing
and hopping along like Tigger, free to use up their boundless energy, He has
to be contained. I have to do my best to keep him level. I have to balance his
emotional state like blood sugar; never too high, never too low.
I am the keeper of boundaries; emotional, physical,
cognitive. And when I can’t manage
them, we both suffer.
Now, it is getting
better. I can anticipate him better. His language is improving so that we can
understand each other better. Our routines are fixed with all of his therapies
so for the most part we’re good.
But there is always the
unplanned.
My phone rings.
Or I get a text.
Or something spills.
Or I don’t
understand what he is saying.
Or … or …
These days we are much, much better. These days little
hiccups don’t always end in a meltdown. Right now we might go whole days
without a meltdown. A year ago we didn’t. A year ago … we were in a much
different place.
Now we have whole hours at a time when he is just floating
through the day playing with me, living in a bubble of therapeutic play in his
comfortable, predictable little world. It’s easier to get him back after a
small upset and it’s really freaking awesome. So awesome that meltdowns are no
longer the driving, maddening force they once were. They aren’t what fuels me
and keeps me going. Now, more than before, I’m fueled by hope. Hope and the
knowledge that we are making headway. That we are moving forward.
So there ya have it. And I wrote all of this because someone
said their crying child was having a ‘meltdown’ and I, in all honesty, said out
loud “If that’s a meltdown then what the hell do we have?” And I posted it for all of you to read because a friend, not
knowing what the difference is and what we really have on our plate, asked an
honest question that I gave a vague, rambling answer to, not unlike this post
which is ridiculously long and probably still doesn’t answer the question. A
question I am still trying to find a suitable answer for.
I was given more than my fair share of words in this life,
but never enough of the right ones. When I find them, I’ll share them.
So, until then…
How do I
know he’s not being a brat?
I don’t always.
How do I
know when it’s autism?
I can feel it? I can see it? I can hear it?
I am making an educated guess based on diagnoses, experience, therapies and
working with and watching and loving him every day of his little life.
How do I
know when it’s a child with autism struggling to understand a world that
doesn’t make sense to him?
It always is. Always.
Even when it’s not.
Love,
Spectrum Mom
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| Almost meltdown ... & ... recovered |
