I can’t sleep currently. It’s 12:30am and I have to be up to get the boys ready for school in less than 5 hours.
sigh
So for those who don’t know. My son Jonny is 15 and diagnosed with Kabuki Syndrome (a very rare muscular/skeletal condition that also affects his neurology in a similar way to autism).
My younger son Jonah is 10 and was diagnosed with severe (level 3) autism as a 3-year-old.
Both my boys deal with anxiety. Neither boy is “neurotypical.”
So I don’t like the solution I’ve taught Jonny to deal with his little brother’s anxieties and aggression, but I can’t think of anything better.
“Just pretend that you’re happy.”
When Jonny is in any kind of “mood,” Jonah reacts negatively.
You see, little brother’s anxiety is triggered by many things, but magnified by big brother’s anxiety.
And big brother’s anxiety is also triggered by any little thing.
For instance, the other day, Jonny started whining because his laundry wouldn’t fit in the washer and he needed to split the load up into two loads.
Like this was “world-ending” for him.
So while Jonny was carrying on about how life is just so unfair, Jonah came over and started screaming at him “All done Bubba (brother) is sad!! I want Bubba is happy!!! I want MAKE you happy!”
Jonah cannot handle Bubba being upset. His brother MUST be happy at all times. If Bubba so much as whines within earshot of his Jonah, it will spike Jonah’s anxiety immediately to the point where Jonah will actually physically force Bubba’s lips into a “smile” while screaming at him to be happy.
Bubba just “loves” it, as you can imagine. (As in “Not at all”)
Conversely, Jonny cannot handle Jonah being upset either.
Jonny has a visceral reaction to any outburst from Jonah to the point where Jonny will immediately move to a different room if Jonah becomes “escalated.”
He’ll lock himself in the bathroom or our bedroom or wherever he can go to get away from the “commotion.”
So with the laundry situation, when Jonah started getting upset because Jonny was whining, Jonny ran to the garage to get away from him. He likes to use his noise-cancelling headphones with his video games out there.
It would have been fine this time, except Jonah then followed Jonny into the garage, continuing to yell “NO SAD!” at him.
Jonny quickly reached the end of his patience and started screaming back at Jonah to “stop yelling” at him.
This is when I intervened.
I told Jonah that his Bubba just needed some space by himself to calm down.
Jonah understands this concept very well. One of the first tools he learned with his therapist was “I need space.” This has diffused many situations in the past.
Not this time.
Jonah reacted by turning his aggression on me. He physically pushed me back into the house, locking the door behind me and then resumed his berating of Jonny.
Fortunately for me, the door actually locks from the inside so I didn’t need to pick the lock (this time).
The boys were at a point where they were both screaming and crying so I picked up Jonah (who was at that point pretty much a 10-year-old “flailing octopus”) and dragged him back in the house so both boys had some space to decompress.
Jonah was furious at that point. Picking Jonah up while he is upset is pretty much the QUICKEST way to send him straight into a meltdown. I think it’s the anxiety combined with the loss of physical autonomy.
In any case, Jonah started in on me. He just started hitting and kicking me over and over and over. When he was younger, I could wait him out and the meltdown would eventually abate. A three, four, or 5-year-old hitting me doesn’t feel “good,” but I can ignore it easily enough while I’m waiting for him to calm down.
It’s hard to explain to other parents how I can “let him just hit me.”
He isn’t hitting from a place of “malice.” He isn’t “throwing a tantrum” because he didn’t get his way. He’s autistic. There are some emotions he simply doesn’t process the same way.
Sometimes “words” simply don’t convey the right “emotion” he is feeling in the moment adequately.
It’s like learning a second language. When a person becomes super anxious or emotional, most people revert back to their native language in times of crisis to communicate.
But suppose you are in crisis and you don’t have a “native language.” How would you communicate your fear? Your frustration? Your anger? Your anxieties?
The most BASIC form of communication is simply “behavior.”
As a parent of an autistic child, I understand that when my child feels he is in crisis, his behavior will become his primary means of communication. I can differentiate between “malice” and ” communication.”
I have been learning how to interpret Jonah’s behaviors since he was a baby. So yes… sometimes that means Jonah just hits me… and kicks me… and I don’t even react.
I will never punish my child for trying to communicate with me.
But Jonah is older now. He’s 10. I can’t continue to just “take it” indefinitely. Jonah is bigger and stronger. It actually hurts when he makes contact now.
So this last time, after several minutes of just “taking it,” I grabbed Jonah’s hands and yelled at him to “STOP HITTING ME!!”
And bless his heart, he did.
He also let out the loudest, ear-piercing scream ever and held it for an impressive amount of time, which caused Jonny (who is sound-aversive) to become escalated again.
It was Jonah who ran into the bathroom and locked himself in this time.
There are a lot of places in our house I probably don’t want Jonah during a meltdown.
The first place is the kitchen. Too many hot and sharp things to get hurt with.
The second place would have to be the bathroom.
Jonah has flooded this particular bathroom on prior occasions by clogging the drain and letting the sink run. I have also had to fish out entire blocks of play-doh from the toilet once or twice thanks to Jojo.
So it’s not an ideal place for Jonah to be by himself while he’s escalated, but at least it’s not where he went the day before…
…right out the front door…
Yes, the day before, I was explaining to Jonah that the internet was down for EVERYONE locally and nobody in our neighborhood was able to play Roblox or Minecraft. It wasn’t just him. His tablet wasn’t dead or broken. It was fine.
But there also wasn’t any way I could “fix it.” And that immediately spiked Jonah’s anxiety.
He had a meltdown right then and there and again started hitting and kicking me. And after a few minutes of “ignoring” the behaviors, I started yelling back at him to STOP.
He screamed as loud and as long as he could, and bolted out the front door, barefoot, wearing shorts and a t-shirt, with the weather just a few degrees above FREEZING.
That’s the stuff right there that makes nightmare scenarios for parents.
But fortunately, Jonah just climbed into a package receptacle by the front door and shut himself in. I say “fortunately” because Jonah has eloped on us 4 times in the past where he was completely out of anyone’s care for a long while.
So, yeah. He was barely clothed and outside in the freezing cold but at least I knew where he was this time.
#smALLVICTORIES right?
Anyway, after 20 minutes or so, Jonah calmed down and came back inside.
He just needed some time and space to regulate his emotions.
So it was the same routine with Jonny and the laundry.
Eventually, Jonah calmed down enough to come out of the bathroom once he knew I wasn’t upset with him.
I apologized to him for yelling at him and he apologized to me for hitting me.
I tried to give him a hug but he didn’t want it. He just wanted “Daddy is happy.” He wanted “Bubba is happy.”
I didn’t feel happy in that moment. I felt exhausted. Defeated. Frustrated. Anxious.
But to keep Jonah’s anxiety at bay, I “put on a happy face” and told Jonah that “Daddy is happy!” and Jonah was happy enough with that knowledge. He could carry on, free from that particular anxiety.
When I talked to Jonny about it, I made sure he knew that sometimes HIS attitude can affect those around him. It’s like a bad smell or “The Cheese Touch” from “Diary of a Wimpy Kid” (IYKYK).
His whiny attitude about his laundry caused Jonah to have a behavioral reaction, which eventually resulted in a meltdown and made it much more stressful for ALL of us.
He asked what he could do when he gets upset to keep Jonah from getting upset and I didn’t like my answer but I can’t think of a better one to give him.
“Just put on a ‘happy face.’ Convince Jonah that ‘Bubba is happy’ even when you aren’t and Jonah will be fine. I mean, that’s what I do.”
That’s it.
The best advice I can come up with for Jonny in dealing with his little brother is to is to just “mask” his true emotions.
I hate that.
Because in that moment, Jonny was also anxious and needed to be accommodated… and I told him that the best way to feel accommodated is to MAKE MORE accommodations for his little brother.
I mean, what kind of precedent does that set? “Your brother’s happiness is more important than your own?”
That’s not fair at all.
But it’s the example I’ve set as a parent. Jonah’s needs have ALWAYS come before my own.
Because sometimes “Life ain’t fair.” And that’s fine for me.
But how do I ask MY CHILD to sacrifice his own happiness for his brother’s?
Is that what “accommodation” has become?
There will always be some things that set Jonah off, and other things will set Jonny off.
But while Jonny is developmentally more “equipped” to make accommodations for his brother, most times, Jonah is not able to reciprocate.
So how do I navigate this issue as a parent?
“Life ain’t fair? Deal with it?”
😔
Thoughts?
#ausome #autism #kabukisyndrome #severeautism #nonverbal