I’m good, thank you for asking.
I guess I’m okay.
It’s been a rough couple of days, to be honest.
Yesterday I had a Zoom meeting with my son Jack’s team. Things aren’t going well at his college program. Everyone is worried.
He is having intrusive thoughts. He is talking to himself and engaging in impulsive behavior. He is making other students uncomfortable.
See, Jack is diagnosed with autism. He also has severe anxiety and obsessive compulsive disorder.
He is eighteen, but his heart and his spirit are much younger.
There is a cost when the brain races to catch up to the body. For Jack, it seems to manifests in a hyper fixation on what others consider taboo: sexuality, substance abuse, death.
These are the topics he verbally processes. He thinks he’s talking to himself, when in fact anyone in earshot can hear.
I spent the rest of the afternoon on the phone, managing this new problem. The pediatrician, a parent coach, an educational consultant.
I talked about medication, therapeutic strategies, other options for placement.
By the time my husband Joe walked in the door, I had descended into a state of despair.
Joe is a Forever Father. He wants to solve. He yearns to find the lesson within the diagnosis. He is afraid to hope too much.
I long to discover a wholeness to my son. I want to move past autism management and into discovery. I want this boy of mine to experience an ease that has been out of his grasp his whole life.
Round and round we went, debating whether we made the right choice with this program—debating if there is a place for him at all.
We accused. We pointed our fingers. We each made our own case for righteousness.
Without Jack’s ever-escalating nervous system to keep us in check, there was a jaggedness to our voices.
We hurt. Privately, separately, we hurt.
Today, I am tired. I am tired of it all.
It is difficult for me to capture the work that is life with a diagnosed child.
There is the work of teaching him how to say please and eat with a fork and cross the street safely.
Then there are meetings, the phone calls, the forms.
Then there is the work to keep the fabric of your family and your marriage intact.
Then here we stand, in the grocery store. Making small talk by the dairy section.
I’ve looked at autism from every angle I could think of to look.
I’ve looked at marriage from every angle I could think of to look.
Both confuse and delight me.
Autism. Severe anxiety. Obsessive compulsive disorder. This trifecta defines my son’s life.
We thought we’d get through puberty, and we would be done.
We thought he’d graduate from high school, and we would be done.
We’d find the right college program, and we would be done.
Autism is never done.
Like a wave crashing over the sand, this realization hits me again and again.
Sure, like a rollercoaster ride, there are peaks and valleys. There are small triumphs which light up the rocky path. Yet at times like this, I struggle to remember their glow.
What will become of this boy of mine? Where does he belong?
Who will he be at fifty? Seventy? Life beyond?
Who will make the calls, adjust the medication, connect the doctors, assemble the teams?
Who will fight for him?
There are moments when I feel very alone in all of this—isolated inside autism’s bubble.
I am lost.
Eighteen years into this journey, and I am lost.
The water is rising.
I can’t see the end.
Building a family is messy business.
I miss my husband today.
I heard his favorite song on the radio.
The dog made the silliest face.
The news said it might snow tomorrow.
I couldn’t tell him any of it, because we are in an autism standoff.
Nothing is real until I tell it to Joe.
Tonight, we’ll do what we always do.
We’ll exchange a small smile over dinner. Maybe he’ll reach for my hand or brush his foot against mine beneath the table. Our resolve will soften.
We’ll come back to one another.
After all, a wave returns to kiss the shore, matter how many times it is turned away.
Right now, it’s all I have left to believe.
Thank you for asking.
Thank you for listening.