Autism and the Two Shades of Uncertainty
Uncertainty is a humiliating reality. Just when we begin to wrap our minds around a situation, a new question flies in out of left field to make sport of us and our silly conclusions. So we try again and it makes sense for a while, but then comes another baffling surprise to humble us. And we think, “Did we understand anything at all? Ever?”
For special needs parents, this cycle can be especially dizzying. Mystery has permeated our family life this year. Jack, our twelve year old with severe autism, had brain surgery in early January, then suffered a major regression in early February. We don’t know why it happened, but his anxiety has been more or less out of control, and it has affected the entire household. We’ve been more stressed and less patient. We’ve been more tired and confused. And we’ve been thinking more about the very uncertain future our boy faces.
I told you a bit about all this early on: how his sacred list of iTunes movie titles provided him with comfort, and how he began to rely so much on that comfort that he would suffer a meltdown when nobody recited it for him. Well, this problem persisted and expanded. He started asking new questions about his favorite movies (particularly The Good Dinosaur), and would demand a very specific response. Here’s an example.
Jack: “Good Dinosaur is number one?”
Us: “Is it?”
Jack: “Yes.”
Two seconds later.
Jack: “Good Dinosaur is number one?”
Us: “Is it?”
Jack: “Yes.”
And again, and again, the scripts would go until late in the night when our nerves were shot. We would close the door and tell him to go to sleep, but then the screaming would begin. He needed his sentences; he needed our repeated assurances that the world wasn’t going to tip over while he slept.
Jack: “Good Dinosaur deleted?”
Us: “No, Jack, it’s not deleted. It’s your favorite movie. Go to sleep.”
Jack: “GOOD DINOSAUR DELETED?!?”
His sisters started retiring to bed early without the customary game nights with mom and dad or the shared episode of The Office. And his brothers became refugees in their own home. If they stayed in their room with Jack, they would have to feed him lines all night long, and none of them would sleep.
Things turned around a bit in May, but he’s taken a dip again since Apple auto-updated some of their iTunes movie covers two days ago. The Good Dinosaur picture is different. It’s just Arlo now. Spot is gone, and Jack’s head is exploding.
Through this season, our most successful strategy has been “Super-Happy-Funny-Voices-Dad-Mode” at bedtime, in which I talk to him in the familiar voices of his favorite movie characters. Some nights, Mater and Lightning McQueen (I do a KILLER Owen Wilson, guys… very proud of it) talked about the virtues of sleep until Stoic the Vast and Hiccup warned of dragons who tickle. Sometimes I do Gru (this one’s also pretty strong, I think), and the younger boys jump in as the Minions, and we get Jack smiling and giggling before the lights go out. The overall result has been a calmer, easier to please son.
“Daaaaad?” He will call after I say goodnight. And I’ll march to the entrance of his room.
“Yeah, buddy?” I ask in the most chipper voice you can imagine. It’s nauseating, really.
“Good Dinosaur IS number one?” he says.
“Is it?”
“Yes.”
“Awesome. Okay, good night buddy!”
We have had encouraging success with this strategy. I think it’s because he’s like many of us: he hates the feeling that he might be making people upset. I think he knows when we are frustrated with him, and it tears him up inside and makes everything worse. I think he feels terrible about his meltdowns, but he can’t stop them. Thus, a calm and pleasant voice seems to be good medicine.
But now I keep wondering this: how do I ensure “Super Happy Funny Voices Dad Mode” doesn’t become like the movie list–the new thing Jack can’t live without? How do I keep the medicine from become the new obsession? I’ve never had to think about the concerns doctors and pharmacists face regarding pain and addictive medication. I think about it all the time now.
The world is so unpredictable that today’s clear solutions can, without warning, morph into tomorrow’s problems. Mystery is a bully.
But there is another side to uncertainty. A brighter side. The openness of things can, in turn, be a blessing. In the special needs parenting world, for instance, there are myriad sad pronouncements about the future:
“Your child will never speak.”
“Your child will never have friends.”
“Don’t get your hopes up, because he won’t read, let alone graduate from high school.”
Such predictions usually come from the well-meaning: the self-proclaimed realist, the overly-protective family member, or the multi-credentialed expert.
The fact remains, however, that our tomorrows are not set in stone. There are too many examples from children among our own ranks who overcame; relentless kids with tireless parents, forging a way past the curses toward breakthrough. Maybe it comes through a therapist, or a drug. Maybe it comes through a prayer. Maybe something just clicks one day.
So it seems uncertainty has another name: we call him possibility.
That means we can’t despair in this season, and we aren’t despairing. True, we don’t know what might be around the next bend, and that’s a cause for fear. But that is also a reason for hope: we don’t know what might be around the next bend. Today is a new day with real openness built into it.
So how do we carry ourselves through our enigmatic lives? We pray, we endure, we love, and we keep leaning into the mystery. Breakthrough will come, but we don’t know how or when. Life is full of uncertainty, yes, but hovering over it all is the God of Possibility.
As someone else once said (something like), “Hold on, morning is coming”
I don’t know if that means anything to you, but I hope so.
Have a good one, Jason
It does. And I will. And dude, you’re fast…
I got a new computer today and am setting it up, so I was at my desk when the new post notification came in.
Anyway, as I’ve said before, I’ll keep you and yours in prayer. Please do the same.
Sam is currently pretty dysregulated and not giving me much response on why, so I could use a few minutes on your mind and in your heart.
I’m on it, my friend.
Thanks for sharing Jason. I do think sometimes it helps way more to share in the pain rather than waiting for it to pass, so I admire your courage. You have such a way of inviting us into your story, I love it. And thank you.
Thank you, friend.
Thank you so much for this post, Jason. It is so very familiar. Our scripts are
“Library maybe tomorrow?”
“Library maybe tomorrow.” (“Yes” or “OK” is not good enough)
“Library maybe tomorrow?”
“Library maybe tomorrow.”
“Library after nap?”
“Library after nap?”
“NO LIBRARY!” (screams in rage)
“OK, we don’t have to go to the library; we can just stay home.”
“Library maybe tomorrow?” (rinse & repeat)
You are so right: uncertainty is scary but it also leaves room for hope. We don’t have to succumb to believing things can never get better, because there’s always possibility.
Yeah, sounds like a lot of similarity. I read that in Jack’s voice…
Hi Jason, I’ve been following your posts and videos a bit lately, and they are truly inspiring. My 5 year old is on the mild end of the spectrum, and we’ve certainly seen good days and/or weeks and then some regression back to issues we thought were long in our past. We continue to persevere and work with him via ABA services, and ride the roller coaster of this being All gray (as in no black and white). He starts kindergarten in the fall, and while excited, we’re also scared as to how he is going to interact with such a major change, a bunch of new peers and of course the social interactions that he struggles with every day. I wish you and your family the very best and hope you get through this latest regression. And always remember to stay positive and remain an amazing advocate for your soon. Thoughts and prayers are with you! Take care. -Raj
Thank you, Raj. It really is a roller coaster. I pray your son has a smooth transition into school.
Thanks for sharing
Thanks for reading!
I pray for all of you when I am praying for my grandson Finn and his family.
God gave Finn and I two of what my mom called little miracles today. I set out for our destination but felt called to take a circuitous route. Low and behold a train just happened to be on a trestle next to a parking lot where we could watch it. Then Finn was thirsty so we took another detour to a grocery and there sat a huge hook and ladder fire truck! We walked around it and he asked if he could kiss it!! Of course I said. Just then 4 firefighters came out and became instant heroes by engaging Finn with grace and kindness. They even let him sit in the truck. But here’s the real miracle, when it was time to get out Finn got up and signed thank you! No meltdown! He even high fived each of them! It was glorious!!
I love this, Beth. What a great story. Those small blessings are so valuable! And thank you for the prayers.
Thank you for your honesty …..it is very helpful .
Thank you for reading, Linda
Praying for you, your family and Jack.
Thank you, Alan
Just wanted to tell you that as a fellow dad in this upside down ASD world……thank you. I believe us Dads who are out there have a tendency to feel all alone. I for one do feel alone quite often. I have friends and acquaintances, but none of them truly understand what it’s like to walk through these mountains and valleys. You can ask them for prayer and you can tell them what you’re feeling, but do they truly understand? Not a chance.
So I’m grateful for you. I’m grateful you can put the joys and anxieties of my heart into words. Because all too often I simply don’t know how. I’m thankful you believe in a God who IS capable of healing……..and maybe that doesn’t mean He’s gonna heal my son. maybe that means He’s still working on my heart. The bitterness, anger and frustration that it harbors far too often. The impatience of a man who is desperate for that miracle for his son. He’s got so much work left to do in me, and I’m ok admitting that.
We have been going through a very rough season with my 5 year old son. It’s been stressful and painful. A boy who was thriving after his diagnosis has gone through a regression again. It’s the ebb and flow of the recovery process. It’s difficult. I know this though, weeping may last for a night, but joy comes in the morning. He’s all I’ve got to hold on to. So I’ll keep white knuckling it through.
Bless you Jason and your entire family. You have an elegant and honest way of conveying your life experiences with your son. I pray our gracious Lord will heal and always give you strength and comfort.
I can relate Jason. My gorgeous boy is 10 and every night we go through the scripts of “Mum but what happens if I wake up?” ,”its ok Caleb you come and find me and ill sort it out”, “but what if i cant get back to sleep”, “its ok Caleb we can make you a bed on the couch and you can watch cartoons” ,”but what if its 2am?”…. and so on. I totally agree with your words “because he’s like many of us: he hates the feeling that he might be making people upset. I think he knows when we are frustrated with him, and it tears him up inside and makes everything worse. I think he feels terrible about his meltdowns, but he can’t stop them. Thus, a calm and pleasant voice seems to be good medicine.”…. youve got this guys. You are doing an amazing job. I know its hard at times, i get overwhelmed by thoughts of the future at times. But i just got to try ti remember to find Gods voice in the midst of it all, and ask for guidence and strength. I cant do it on my own it all comes from him and ive found in my moments i am weakest and on my kness crying Papa you promised me you would never gove me more than what I could handle, thats when my biggest miracles and breakthroughs come through. Maybe not the way I expected them but definately according to his plan and with my welfare in mind. 1 Corinthians 10:13 and Jeremiah 29:11. Im just trying to share what has really helped me in my times of struggle Shatterring your Strongholds by Liberty Savard was another really practical way that I felt helped empower me to tackle some stuff beneath the scenes. Thinking of you all. Kia kaha – stay strong, you got this!
Your post was spot on. But in the symptom description. If you’ve never heard of PANDAS or PANS, I encourage you to become familiar. The symptoms sound very much like your son’s, and my son’s. It stands for Pediatric Autoimmune Neuropsychiatric Syndrome. Good luck and know you’re not alone.
Hi Jason- Angela- teacher of the deaf and mother of child with tourette’s Syndrome here. I have started a new job as a Deaf Facility Leader in a mainstream school and have had Students with disabilities added to my role. Most of the kids have autism- not severe- they participate in regular school programs. As someone on a steep learning curve; I do a lot of researching and reading and on line short courses. Your article gave me more in five minutes of reading than most of the other stuff I have done. I advocate for special needs kids all the time and bottom line, if anyone says “these kids shouldn’t be here” I respond with: “I would hate to think that my kids teachers are saying the same thing” I love your writing, your hope and your passion for your son. Keep writing. I will absolutely keep reading and learning
Angela
Thanks for sharing Jason! I’m always impressed by how you, Sara and the kids all partner together to reach Jack where he’s at. I’m praying for a respite for you guys soon, and a progression for Jack!
I love this post! Our God of possibilities truly is in control of the uncertainties of our lives. I need this reminder today. Thank you!
Hello Jason,
I am sorry for your families difficulties. I understand the feeling of not understanding and I will pray for your son and your family. Just know by sharing you are a beacon of light for so many that are going through similar situations. I just know these kids have such strong intuitive senses, 6 senses to be exact. I was developing a program for them based on Chinese Medicine and the 6 Healing Sounds but it was interrupted when I, out of the blue, had a major heart attack. I am in recovery mode and intend to get back to the program as soon as possible. Nothing will stop me from praying for you and your family though. Blessings Christiana
Thank you so much for sharing not only the joy, but the sadness as well. Too many try to sugar coat the reality of autism. We are still at the very beginning of our journey here (our son turns 5 in 4 weeks) and we know all too well that bad days follow good days, then follow bad days and good days some more… but OH how we love them! They are our light, our angels, our reason for being… <3
Dear Jason,
Your honesty is so very appreciated, with children who have special needs some days can be very tough and dark and we proceed with a false sense of hope and yet all it takes is the smallest positive to give us a lift..I hope those positives come your way soon and you have some nice and positive times at the beach…
In hope x
Your post is beautifully written! As the parent of a 26-year-old son with autism (who still lives with us at home), I can tell you that life does get easier and better with time. Adolescence is hard on all kids (I taught middle school for many years, so I witnessed this first-hand!), but the changes are especially difficult for our kids. Keep sharing your experiences and faith through your writing because others need to hear about how to be hopeful, patient, and expectant in the midst of autism. Praying for your family as you wait on the Lord!