You don’t know what you don’t know. And you never know what to expect.

I didn’t know what to expect.

December 20, 2007 was the day of our appointment. I didn’t know for sure what was coming, but I had a pretty good idea. After hours of testing, even re-testing to make his score better, the psychologist sat with me in the empty waiting room highlighting the border between “Moderate” and “Severe” on the very simplified scale of the Autism Spectrum Disorder according to the DSM IV at the time. She told me my son was on the border of being severely autistic. I asked her what we were supposed to do, and she compassionately shrugged her shoulders and told me to keep up with the therapy he was already in. That was it.

I don’t know what I thought would happen at the end of that appointment. But I left with a bit of relief that we finally had an answer, a twinge of guilt that I should have done this sooner, and a knot in my stomach not knowing what to expect for the life of my son.

I didn’t expect this.

It might sound strange, but I struggle a lot with guilt at this stage. Guilt that my son is in the position he is currently in, while friends with children with the same diagnosis are living a completely different life, but one that we used to know in the beginning of nonverbalness and meltdowns and confusion and grief. There was joy in the little things, but all the “little things” to everyone else were huge things to us.

Things like enjoying snow falling on his face, compared to previous years of meltdowns because water dared to grace his skin. Imagine walking from the car to the house in the rain because we didn’t have a garage with a child whose sensory system became overloaded from a light sprinkle. Let’s not discuss bathtime or hair washing.

Our saving grace? Movies.

Kids love movies. Oh, but Sam  l o v e d  movies. Movies were safe. There was a clear beginning and a clear end with occasional surprise post-credit scenes. There was fun stuff in between with sounds and music and visual effects, and lovable characters sold just down the road in Target’s toy aisle. We lived in the magical world of Disney’s Cars for years. He hates to admit it now, but he was obsessed with Frozen too. He didn’t just watch these movies. He immersed himself in them. Sam stims in a way that is called scripting. He memorizes the lines and then acts them out, imitating each character’s voice with their lines. Verbatim. He still does it to this day. It helps him process and get things out of his system.

I didn’t know what to expect.

I have a very clear, distinct memory of watching him script Cars one day, as he flew Lightning McQueen through the air, shutting one eye tightly closed to get a good look at him in the light right in front of his face while mimicking, “Kachow!” I was partly enjoying watching him delight in his imaginative play, partly fascinated by his memory as he scripted the lines perfectly, and partly grieved, wondering where he would end up one day, what he would end up doing, who he would be, and how God would use him to impact the world.

Because everyone has an impact on the world around them, seen or unseen.

I remember thinking that it would only be fitting if somehow movies played a part in his life one day. Maybe the Lord would redeem these years, these moments of immersion and perseveration, and maybe Sam would play a part in creating movies that other kids and adults alike would find themselves immersed in too. I remember thinking how cool that full circle story would be. How maybe it would somehow redeem all those years of hard.

I didn’t know what to expect. But here we are.

Sam has come so far since that first date of diagnosis. He’s fully verbal and has been mainstreamed in school. We had a brief stint of a few years where homeschooling became necessary and then he entered high school mid-year when we moved to Indiana in 2020. He was a cross-country runner from elementary school through his junior year. He is an incredible photographer. And he’s still obsessed with movies. He graduates high school in less than two months. He decided he wants to pursue cinematography and make movies. He wants to create worlds for others to get lost in. Characters they will both love and hate, and love to hate, and hate to love, and love to love. Movies provided a way for him to understand and engage with the world. We understand more about life by watching parts of it play out on a screen. We engage with others because everyone loves movies. Movies gave him a language he didn’t have on his own. It’s what he based his college essays on. They were beautiful.

I didn’t know what to expect as he pursued some of the top cinematography schools in the country.

He applied and was accepted to Savannah College of Art and Design (SCAD,) Emerson College, and Columbia College Chicago. He made a valiant effort and went through the incredibly tedious application process for NYU but was denied. Their loss.

He has made his final decision and has accepted the invitation to be in the BFA (Bachelor of Fine Arts) for Film and Television at Columbia College Chicago. The BFA is an invitation only a selected few receive. He was one of only four individuals in our state to be accepted out of over 400. He is one of only a couple hundred out of the thousands who applied for the program across the country. His GPA of 3.94 made him eligible for the honors program, and he has accepted that as well.

I don’t know what to expect.

I’ve already launched, as they say, one kid into college. His older brother Ben is currently a freshman pursuing film scoring and composition at Berklee College of Music in Boston with a full tuition scholarship. Emerson would have been a 12 minute trip between the brothers had he chosen it. But now, we’ll be launching this kid straight into the heart of Chicago, a little over 5 hours away (instead of over 15, so I’m okay with that.) He doesn’t have a full tuition scholarship, but it’s fairly close, all things considered. We are so grateful for that.

It’s strange business, this whole letting go thing. I’ve always managed every part of Sam’s life. Always. This isn’t to say I was completely alone as our family and friends and churches we’ve been a part of have been an army of support that we couldn’t have managed well without. But day to day? I made the appointments. I learned all the therapy things so we could continue what he learned in therapy all the rest of the hours of the week at home. I fought insurance. I lobbied for better services. I educated everyone about autism. It’s why this blog even exists. I went to every IEP meeting. I called meetings with teachers and principals. We took him out and about because he can’t live at home in his room in quiet movie-induced solitude forever. Turns out, he’s a bit of an extrovert like his mom. He needs people.

That’s something not expected of people with autism. They say the opposite. But autism is never what you expect. Sam has always surprised us.

I’m the one who suggested photography when he showed interest in a career in movies but was too overwhelmed at all the possibilities – producer? director? cameraman? visual effects? I found him teachers and mentors who taught him about the art of photography because it seemed to make sense that he would need to know the rules of photography in order to understand the rules of film. We took him wherever he wanted to go for a good photo shoot. We turned him loose in D.C. for the day because he needed to get the perfect sunset shot of the Washington Monument. (I’d show it to you, but I’m currently not allowed to share images until he edits them in order of when he took them. Maybe in a couple years I can show it to you.)

I helped him look at colleges that had both the type of program he wanted that fit the criteria of being in a big city (that was a thing he really wanted,) and also had accommodations he would need. I made phone calls and sent emails to ensure we were preparing as best we could. We filled out forms and had meetings and sent in applications for academic and single housing accommodations with official proof for why all of it is  needed.

I don’t know what to expect.

He’s not guaranteed the type of housing we are asking for. He’s had about a minute’s worth of learning how to navigate public transportation in Chicago itself, and he’ll have to do far more of it without us standing right beside him showing him how to do it. Our oldest called me one time from a bus stop in Boston asking me about what he should do and where he should go to get back to campus. I was completely helpless. I couldn’t tell him which bus to get on, or what time it would be there. It wasn’t lining up with what his information was telling him and he was confused. It was very late at night, and we were both starting to get anxious for him to get back to his dorm. But he figured it out and arrived safely about an hour later, confirmed by text I made him send me so I knew he wasn’t dead in a ditch.

I don’t know what to expect.

Will Sam call me in a meltdown because he’s lost? How will I help him? “He’ll have to learn how to help himself,” I can hear you say. Yes, I know. But this is different. What if he’s misunderstood by strangers and something happens?

What ifs can start to bleed into paralyzing fear, if I let it.

When discussing what to do about college back in the fall, I was using the metaphor of baby birds learning to fly as mama birds pushed them out of the nest. Emotions welling up, he asked me, “But mom, what if I can’t do it? What if I fall?” And I jumped on the opportunity to use the ever so trite cliche and in all seriousness with tears of my own replied, “Yes, you might fall. You’ll probably fall a lot. But Sam… what if you fly?”

I have always had high expectations of Sam, despite his autism, sometimes because of it. I knew he’d do well when he landed big roles in theatre because memorization is kind of his thing. And he was amazing. I have always pushed him harder than maybe even my other kids. I never wanted him to think or ever believe of himself that he couldn’t do something because he has autism. I never want anyone to put him in a box that says autistic people have to do things this way. I didn’t want him boxing himself in either. I’m okay with other ways, as long as it’s what is truly needed. But sometimes those other ways are just safe. Sam’s not safe, meaning he’s always taken risks. He’s always put himself out there, even if he’s afraid he’ll fail. Most of the time, he succeeds and even thrives.

The safest choice isn’t always the best choice.

It would be safe for him to just stay here and never leave. It would be safe not to teach him how to drive. It would be safe to tell him to stay in the backyard and not take walks next to busy roads (on a sidewalk. He’s not walking the shoulders or hitchhiking, I promise.) And I never wanted others to think we don’t hold him to the same standards as his brothers. We do, but sometimes it looks a little different. Autism has been a valid reason for why he has struggled with things, and will continue to struggle. There will always be challenges and there will always be progress and five steps back and two steps forward or one step back and 10 steps forward. But it’s never an excuse to get out of taking those steps anyway. We might give him some grace with some things. Everyone needs grace. But he doesn’t just get a pass. Professors and bosses and directors and producers won’t just give him a pass. He has always worked hard for everything he has achieved, and I have no doubt he will do the same in college and beyond. I’ve been there for all of it. And now for the first time, I won’t be. That’s a scary place for this mama bird to be in. But it also holds so much hope. 

So when I start down the road of negative what-ifs, I try to remember to ask myself, “Yes… but what if he flies?”

I don’t know what it will look like. But I expect that he will.