Our son, Kai, is turning eight years old next week and has nine different diagnoses. The big three are Duplicate Chromosome 16, PVL (periventricular leukomalacia, damaged white brain matter) and Autism.
Today my husband and I took Kai and his older sister Amaya, who just turned ten, to an event that was put on by the Crossfit that I attend. It was a fundraiser for one of the members, who is currently kicking cancer’s ass. It included a workout (which I opted out of, because we had the kids) as well as a lunch, live and silent auctions and sweets to buy. It also had some kid activities. Although it sounds fancy, it was put on in the afternoon at a local park. It was beautiful but also casual.
In the past we would have stayed home and not attended events like this. Or, one of us would stay home with Kai and the other would go and Amaya could choose. This was because we could never predict what would set Kai off, cause a meltdown, a tantrum, or other behavior that could be disruptive. However, in the last couple of years, we have gotten better at this as a family. And Kai is getting better at outings. So we went.
Kai travels in a wheelchair even though he has no physical need for one. What Kai needs is a safe place. And it was either a stroller that fits his body size, which starts at $1,000, or a wheelchair for $150. Since Kai is low functioning and is perfectly fine with sitting in the wheelchair, having no feelings about it whatsoever, we went with the more affordable option. He also travels with a tablet. Outings with the tablet to occupy him last way longer, go more smoothly and tend to reduce tantrums. I am aware that too much tablet time is unhealthy for him and am sorry to say that we have completely fallen into this hole that at some point we are going to have to dig ourselves out of. But, right now, he has the tablet almost all the time. In case you ever thought otherwise, we aren’t close to perfect at this gig. We also travel with a backup tablet for when the first one dies, a hotspot, a quick charger and a full backpack with diapers, wipes, food, changes of clothes, and lots, lots more.
Suffice to say that Kai did beautifully. He danced with me to the music that was playing, ate a piece of cake, allowed people to greet him (and gave some eye contact), and seemed to enjoy himself. But we also noticed that between the music, the lights that were strung up and the people, Kai was getting very stimulated. It was causing him to stim quite a bit. He was endlessly rocking, did some throat punching and got his parents to clap over and over.
When Kai began to give signs that he was starting to tire of being out (we call this running out of Kai minutes), we said our goodbyes and took our leave. We headed out to the van, got his wheelchair put away, Kai in his car seat, Amaya settled and off we went toward home.
And then Kai’s tablet died. Kai started to fuss and I switched the dead tablet out for a fully charged one.
All hell broke loose. Kai had a complete meltdown including crying, screaming, throwing down the new tablet, rocking, turning sideways and more. We weren’t sure why but we did know he was overstimulated and probably tired. We were about five minutes from home and tried to talk him down the whole way, to no avail.
When we pulled into our driveway, Kai refused to get out of the van. He was screaming and crying, his hands were over his ears and he was sideways. I reached in and picked up all seventy pounds of him (Thank you Crossfit! I didn’t get hurt. This is why I do it!) and carried his squirming, screaming body into the house and set him down on the couch. Daddy tried to soothe him, tried turning on the television, fought with him because Kai wanted to use a tablet that was dead, sang to him and more as I changed him out of his clothes, changed his diaper and put him in cozy, clean pajamas, with him wriggling and screaming all the while. Then I carried him into the bedroom.
Amaya waited it out in the other room while Mommy, Daddy and Kai worked to soothe Kai. We let him try to calm himself, talked softly to him, wrapped him in a favorite blanket and both Mommy and Daddy took turns singing with him. For about an hour. Until finally, Kai returned to us. And after all of this, Daddy went off and found a different tablet that had been sitting in the cabinet in the kitchen.
Want to know what set off this epic meltdown? The tablet that I had handed Kai in the car had a case around it that was an orangey-red color.
Kai wanted blue.
Had he not already been overstimulated and tired, Kai may have been able to signal the problem to me but he wasn’t capable of it at that point. So he did what he was able to do. He showed us, by melting down and having a tantrum, that there was a problem.
And then, it is up to Mommy and Daddy to figure out what that problem is.
Some of you reading this are thinking- what a hard, stressful situation! And some of you are thinking- wow, the tantrum lasted for only an hour? YOU GOT OFF EASY. MY KID CAN GO FOR DAYS.
Both of these perspectives are true.
After all of this, even though I am tired, I am grateful. We MADE SO MUCH PROGRESS. Yes, it is two steps forward and one step back. And yes, the epic meltdown/tantrum is exhausting and difficult (especially for Kai, who I feel so badly for when he is going through it – it can’t possibly feel good). But we were able to go out as a family! We weren’t able to do that for years.
If you are at the stage where you feel overwhelmed and exhausted, where you can’t imagine ever being a part of society again, please know that you aren’t alone. As you and your child grow,change and evolve together, it will get easier. You’ll find ways to make it happen.
I am so proud of you for everything that you are doing to be the best caregiver you can, even if today that only means that you showed up. Showing up is everything.
Two steps forward, and sometimes, one step back. You are still progressing. Focus on the progress and, as you are able, let the rest go. You’ve got this.
P.S. – Kai just started up again. Time for another round of rub the booty! And, pat the booty! Sigh.
Be well.
Want more? I have released a book! It is written especially for you to uplift you as a caregiver, soothe you, help you navigate and, most importantly, help you to be OK. Take a look!