We took Josiah bowling a few weeks ago but he refused to get out of the car. Rick opened his door and I slid in beside him, scooting closer and closer until he got out.
After walking a few steps, he dropped to the smoldering hot concrete and would not budge. We waited in the scalding sun for him to change his mind and walk inside. He didn’t. Instead, he tried to pry open random car doors in the parking lot. Thankfully they were all locked.
If you know Josiah at all, you are well aware this is very typical for him. He does not transition well nor does he do well in new environments.
That very same week both of Josiah’s weekday caregivers were on vacation. He was not himself without them here. He had no interest in leaving the house. He wouldn’t walk at the gym. Not once did he ride in his golf cart, which he normally loves. He just wanted to stay home.
Apparently, the only thing he did want to do was strip off his clothes. We redressed him more times than I can count. One day I just waved the white flag and let him be a nudist.
All this to say, Josiah has never been one to embrace change or adventure.
But guess what happened recently?
Josiah very willingly stepped out of the car, and with no hesitation entered a movie theater. He sat through 1 hour and 30 minutes of “Toy Story 5” fully clothed!
That my friends is huge!!
Full disclosure, we did take his adaptive stroller along to increase the odds he would stay seated. But had he wanted to, Josiah could have busted out of that chair in a heartbeat. He’s done it before.
He didn’t want popcorn. He didn’t want a drink. He barely even looked up at the screen. But he was listening and he was quiet… for most of the time anyway.
He stayed in that theater for all but 12 minutes of the movie! I count that as a major win.
And it gets even better. Josiah now goes to Special Strong adaptive fitness classes twice a week. He has a Spelling to Communicate lesson twice a week. He goes bowling every Friday. He attends adaptive swim class once a week and even enjoys going to Karaoke nights once a month. He’s also started walking on a treadmill at the gym.
And lest we forget, he just played every single game of Senior Challenger Baseball this season. Truly amazing!!
We are now adding things to his calendar we would have hesitated to even think about before. This week he went to a Percussion Therapy Class and to see a sensory friendly play.
I firmly believe this is in large part due to his current medications.
Keep in mind, I’m the mom that swore I would never, ever, ever medicate my child. Never say never!
When Josiah was about 5, his teacher sent me a video of him bouncing wildly on a ball chair in the classroom, along with the message, “Your son is vibrating!”
He used to rarely sleep. Most nights Josiah only slept between midnight and 3 am.
Can you imagine what it must feel like to be so anxious, hyperactive and seriously sleep deprived?
Josiah definitely needed some help.
We started with natural supplements and melatonin for sleep. We severely altered his diet. We bought him a trampoline. We adjusted many things over the years, tweaking meds and adjusting various interventions. While some were helpful, none of them made a tremendous difference.
All these years later, Josiah takes a daily dose of medications that have vastly improved his quality of life.
So while I had been vehemently opposed to medication, the improvements they have made for Josiah have been extremely favorable. He’s calmer. He’s happier and he’s definitely more willing to try new things.
This week he sat in a regular seat (not his adaptive stroller) for the entire 2 hour production of Joseph and the Amazing Technicolor Dreamcoat. Phenomenal progress!
I just watched a reel by a psychologist who has Autism. He shared this, “Invisible Ninja Fight Club is one of my favorite metaphors for explaining my experience as an autistic person. Imagine that you wake up one day and find you’ve been given a lifetime membership to the Invisible Ninja Fight Club. What this means is that 10 times a day an invisible ninja will jump out and fight you.
This makes life a lot more challenging because there are a lot of things you might want to do but you have to fight a ninja to be able to do them and even when you are not actively fighting a ninja you are still exhausted and injured from all the past ninja battles you had to go through that day.
This is basically what it feels like when you are an autistic person trying to exist in a world made for neurotypical needs. You are constantly fighting invisible ninjas of sensory overwhelm, executive functioning limitations, social challenges, all sorts of things that you have to deal with every day that a neurotypical person doesn’t.” (link to full reel posted below)
How eye-opening is that?
If medication helps Josiah sleep better, feel less anxious, and better equipped to win those relentless, invisible battles, then I say better living through pharmaceuticals. Rock on Ninja Warrior!
*Autism is like invisible ninja fight club https://www.instagram.com/reel/DaKBmMog7W-/