It’s been a while since I’d made an entry in my “Beautiful Boy” series, chronicling parts of our journey navigating Henry’s autism diagnosis and support. I figure I’m well overdue, and I’ve also been thinking about it in the past few days because we have really been seeing some excellent progress with Henry recently. And as in all things, you can’t really recognize the peak unless you can also recognize the valley. And today I’m going to talk a little about the valley.
In part one of this series, I talked about what led up to getting Henry’s diagnosis. Part two was about the early days and coming up with the course of action. Part three was about getting started with therapy for Henry. In this installment, I’m going to talk about some of the tough times we experienced in in August and September.
When we started therapy in July, we had a few weeks of what felt like good progress, and then struggled with the fact that Henry was being overwhelmed with more than 30 hours of therapy each week. I think I ended the last of these posts on our decision to scale back his ABA (Applied Behavioral Analysis) therapy from 30 to 20 hours per week.
That immediately proved to be a good idea, and Henry had more energy, was more engaged, and overall did better for a period of time. In most ways, therapy seemed to be going better, so we thought we were on a good track. But as can so often happen with this kind of thing, sometimes ups are quickly followed by downs.
We started to notice Henry was becoming more prone to meltdowns and was becoming increasingly inflexible. The inflexibility has always been one of the biggest challenges with Henry, and he can really get upset and impossible to communicate with when he doesn’t get what he wants.
In working with ABA, we were given lots of strategies and frameworks to try to de-escalate those situations. We even took Henry to the Autism Store in Denver, where we got some cool sensory toys like squeeze balls and other things that can help him calm himself. His OT worked with Henry to build a cool glitter bottle that is kind of like looking at a lava lamp. We found that could also be effective in calming Henry.
We would see those strategies work, but there was still this slow escalation in his behavior. We really noticed it spike back in August when we made a trip to Vail with Erin’s parents. It was our fist getaway in a while, and it was a beautiful weekend in the mountains, but Henry was volcanic the whole time. He would try to randomly run off, and fight with us at every turn.
The weekend was capped off with what would have been a nice stroll through Beaver Creek, if Henry hadn’t been in complete meltdown and trying to elope (run off) the entire time we were there. It was really exhausting and it was easy to understand why some parents just don’t bother traveling with their kids. It can be really challenging, frustrating and tiring.
But we don’t want to live that way, so we went back to work trying to help Henry better deal with different kinds of situations and environments. And we had a big one coming up on the horizon…the wedding of my brother David and now-sister-in-law, Jess.
Regular readers may recall that traveled back to Wisconsin in September to take part in Dave and Jess’s wedding. They had to postpone their big day from earlier this year to Labor Day weekend, due to COVID. And the pandemic forced them to make changes up to the very end.
Talk about challenges, those guys had to navigate so much to get to where they were going. We really, really wanted to be there to be a part of it. I was going to be standing up in the wedding, so we worked really hard with Henry for weeks to try to help coach him to get through the trip and event with us.
He seemed to be doing really well. We had a number of sensory toys, including that glitter bottle I mentioned, and he got really good at responding to them and even asking for them when he needed help settling down. We actually practiced the procession and ceremony in our backyard, so Henry could see me up in front, and made a video so he could watch it. We felt as prepared as we could possibly be.
So we made the trip to Wisconsin, and he seemed to be doing well. He is generally a good traveler, and was this time too. He was in a good mood the day we got there, and did well interacting with grandparents, aunts, uncles and cousins when we arrived.
The day of the wedding arrived and we went over everything with him again. Erin had a bag with treats and sensory toys all ready for him. We were feeling pretty good about things. There was just one tell that gave us pause when we drove over to the venue. He rubbed his eyes when we got out of the car. OK, he might be a little tired, but the ceremony is short and we should be OK.
It was a pretty small group and Erin and the kids took their seats when it was time to go. Henry was doing fine, watching his pad. The venue was beautiful and everything looked perfect. We started the procession and Henry saw me and wanted to come over to me. That’s where things started to go really wrong.
Erin tried all the treats, toys and everything else to settle him down, but he was fixated on running over to me. He at least held it together long enough for Jess to make it down the aisle, but shortly after he erupted into what would be one of the worst meltdowns he’s ever had. Literally kicking and screaming, Erin and had to grab him up and rush him out of the room as quickly as she could.
Amelia stayed behind and sat perfectly through the rest of the ceremony. I felt awful that I couldn’t help, and we all felt embarrassed for the interruption. The ceremony was beautiful, and Dave and Jess were wonderful. Poor Erin had to miss the entire thing, because she was in the bathroom with Henry, who was having an epic meltdown, screaming and thrashing, for almost a half an hour.
I saw them come out shortly after the ceremony ended, and we made a brief attempt to get Henry in with us in pictures, but that was just n0t happening. He started melting down again, and in the end Erin wound up driving around with him for a while and we eventually took him back to the hotel to rest and calm down, while Amelia went to spend time with her grandparents.
We were all frazzled and upset. We had looked forward to this and worked so hard for so many weeks and months to make it through that half-hour ceremony, and in the end it went about as badly as we could ever have drawn it up. I’ll admit, it was completely dispiriting. It felt so much like all the effort, all the work, all the struggle we had put into this was for nothing. And maybe this was just how it was going to be with Henry all the time.
He did level out and we were able to go back to the reception. He seemed to have genuine remorse, and as he often does after having an episode like that, he seemed truly tired and shaken. I know he doesn’t like it when these meltdowns happen, either. He was overjoyed to see his sister.
He did pretty well the rest of the night and we were able to enjoy the time with family, but the whole experience definitely took a peg out of us.
The next day we headed back home, laden with questions for our support team. In the end, we were of course glad we could be there for Dave and Jess, and the wedding was wonderful, but we found ourselves deeply questioning everything we were doing to help Henry. Was it even helping? What was the point of all this therapy when in so many ways it felt like he had actually gotten worse, not better?
Back home in Colorado, I could feel the sadness and confusion from our therapy team, as well. We had all put a lot into this, and I know they were disappointed. But what was next?
This, in many ways, is how it has been with Henry for his entire life. There are times he does so well and lulls us into thinking things are looking good, and then moments like this happen and call everything into question. We wondered whether ABA was the right thing. We wondered whether he was just too inflexible to be able to handle any different environments, and worried that travel with him was just going to be impossible.
That was the depth of the valley. Along with writing things like this blog, I also like to write a little fiction and screenplays here and there, so I’m pretty well studied up on story structure. The three act structure is the backbone of most stories, and in that setup, the end of act two ends with the main character’s low point. The point where all seems dark, hope seems lost, and the main character has to decide whether and how to fight on.
So I knew enough from all the stories I’ve read and written that hope is never lost. The low point is where the hero or heroine learns who they are, what they’re made of, and digs deap to fight on. And that is what our family did. It was a hard few weeks, I won’t lie. Discouraging, difficult and exhausting. But spoiler alert: things DID get better.
I’ll write more about that in the next post in this series. Quick preview, we took what happened, processed it, and got back to work. Our team helped us develop new strategies and strengthen old ones, and I can honestly say that we are at a place with Henry right now that I never could have imagined we’d ever get to. We have all worked so hard, Henry most of all, and we couldn’t be prouder of him.
More on all of that the next time, but the thought I’ll leave you with is never despair. The fight is never done until you say it’s done. I’ve written before that Henry has my favorite Vince Lombardi quote framed in his bedroom, and I think it very much applies here. “It’s not whether you get knocked down, it’s whether you get up.”
