Autism Food Diary

To be the parent of a child with autism is to live a life of altered expectations. We imagine that we will share the things we treasure with our kids, but they may have different ideas. And this can be especially true if that kid has autism. Sometimes, though, it all works out. And when it does, we may find ourselves appreciating the moment in ways both different and profound. And so it was that I found myself on a Saturday night in March in the Greensboro (NC) Coliseum with my 19-year-old son, Eric, awaiting the arrival of Bruce Springsteen and the E Street Band. It had been 42 years since my first Springsteen show--a transformational experience for me at age 16. Like so many fans, I had been overwhelmed by the energy, the passion, the commitment of Bruce and the band, and it started me on a journey that continues to this day. This Greensboro show would be my 23rd. Eric loved music from the beginning. His earliest favorite was Alison Krauss (sidebar--in 5th grade it was arranged that she would come to school to meet him. She spent 45 minutes with us and could not have been more generous.). But he enjoyed other artists, too, and Bruce was certainly among them. The songs he liked were the songs he liked. There are not too many Springsteen fans that would name Human Touch as their favorite album, but it is surely Eric's! Ever the cataloguer of things, Eric worked his way through the entire Springsteen discography, and it became clear that this was one of his preferred artists. There were others--Maura O'Connell, Thomas Rhett, Kacey Musgraves, Talking Heads, Frank Sinatra--but when he had a choice to make, it was Springsteen as often as anyone else. At age four, we rolled the dice and took Eric to his first honest-to-goodness concert (Alison Krauss at Nashville's Bridgestone Arena). He was entranced. We learned that, chosen with care, concerts could be marvelous experiences for him. Others followed, and, for the most part, they were highly successful, even if infrequent. But a Springsteen show is another matter. They are longer, louder (at least than anything he'd seen), and not always nearby if you happen to live in Middle Tennessee. When, after a six-year layoff, in part because of COVID, tickets went on sale last summer for concerts this spring, I had a decision to make. Should I give it a go? Should Eric come with me to share the experience? Would this be the full-circle father-and-son moment that, if you'd have asked me, I'd have thought we'd never have had the opportunity to enjoy? With it having been so long since Bruce and the band toured, demand for tickets was as high as it had been in decades. There would be no wait-and-see. So on the July day that passcodes were applied for--those that, if granted, would merely allow the opportunity to queue online for tickets--decisions had to be made. And my decision was, yes, let's go for it. Greensboro was offered (a seven-hour drive from Nashville), so that would be the try. On sale day, the angels were smiling as a pair of seats in the first row of the second deck came up for us. I clicked in time, and our course was set. The printed confirmation page was wrapped in a box with a 2023 Tour t-shirt, and on Christmas Day, Eric learned that, three months hence, he and dad would be making a trip to see Bruce. What would this be like? Seeing a Bruce show is, truly, one of my absolute favorite things to do, and, selfishly, I would be putting this experience at risk if it didn't go well for Eric. What if, halfway through the three-hour gig, Eric said, "Dad, can we go?" Make no mistake--this would be a possibility. Several things were in my favor, though. For one, we'd be staying in a hotel ("Hotels have TVs, beds, and toilets!"). Any decent arena will have cheeseburgers ("with ketchup and mustard!"). And Eric really does like Bruce Springsteen's music. But still, you never know. Even after twenty-two of them, the opening of a Springsteen show is like no other. Whether beginning with a darkened stage, or with the band walking on one by one with all the house lights up, there is this moment when you see Bruce and the band with your own eyes and you realize that this is really happening. Would Eric feel this way? How would I know? As he stood with his phone pointed towards the stage, smiling as he started to record his first video, I had the distinct impression that, in his way, Eric got it just like I did. With a throaty, "It's good to be in GREENSBORO!! One-two-three-four!" we were into the 1980s anthem "No Surrender", and off to the races. So how was the show? It was a Bruce Springsteen show, full of grit and grandeur, of great sweeps and emotional gut-punches. But that's my experience. What about Eric's? We had one problematic moment--about seven songs in, his phone ran out of storage. At that point I realized that he'd been making a video of every song. Unprepared to deal with that in the moment, we had to have a discussion about it, but the crisis did not metastasize. For the rest of the night, Eric seemed to enjoy himself. At the very least, he paid attention. But how much? Was this all worth it to him? As we drove away, I tried to figure out just wat he'd gotten out of our night. "What was your favorite song?" "I don't know." "What songs did they play?" "Born in the USA." (They didn't) I tried a different tack--"What was the first song?" "No Surrender." (Correct!) "What was the last song?" "I'll See You in My Dreams." (Correct again!) "What songs did they play from Darkness on the Edge of Town? " "Prove it all Night, Promised Land, Candy's Room, Badlands." (Absolutely, 100%, correct!) Ok, I guess he really did get something out of this! Eric is an inveterate box-checker. Often when he has done something once, he doesn't want to do it again--even if he really liked it. "I've already did_____", he might say. On the way home, I asked him the question, "If Bruce Springsteen came to Nashville, would you want to go see him?" Without hesitation, "Yes!"

It is one of the hardest things for any of us to do--whether we are a boss, a teacher, or especially a parent. It's one of the simplest and most fundamental of behavioral principles. And yet we forget to do it, or we fail to do it enough, or we feel like we shouldn't have to. The principle: reinforce the behavior that you want to see. The application for parents: catch your kids being good, and reward them for it. It works. It works for all kinds of kids, but it is especially important for children with autism. Consider the child on the spectrum. He may struggle reading social cues. A wink or a smile from a parent might not be as meaningful to him as to his typical peer. It's all the more important for a parent to be clear (and maybe a little dramatic) in offering reinforcement. It can be praise, high fives, tickles, something tangible (an M&M, say). Whatever it is, it needs to be meaningful and rewarding to the child. In my experience, this strategy can pay its greatest dividends in seemingly the most mundane circumstances. Your kid is sitting quietly, appropriately playing with a toy. Or he's sitting and reading a book. The parent walks past and says, "Hey, John, I LOVE how you are sitting quietly and playing!" That may be reward enough, or something else may need to be included to sweeten the pot. Whatever the case, it is a certainty that if the child is explicitly and consistently reinforced for playing quietly, then he will do so more often. So why should I have to do this? Why should I have to reward my child for something he should be doing anyway? I hear this a lot, and I understand it, as I slip into that thinking myself at times. Think about the alternative--the idea of criticizing the bad instead of rewarding the good. Remember when you were a teenager? If your parents tried to shape your behavior by telling you what not to do, how did that go? What was your response? I sure didn't like it, and my 17-year-old son, who has autism, doesn't like it, either! So catch your kids being good, and let them know about it. It works, and it's worth it!

Not one of us has ever lived through a time like this. It's tough on parents, on grandparents, on spouses, on kids. And perhaps most unnerving, we don't know when it will end. When can we do what we used to? Will things ever be the same? Now suppose your child has autism. He loves his routines. He longs to go to his regular haunts. And he simply can't understand why he can't go see his grandparents. What can we parents do to make the best of this assuredly bad situation? This is the animating question for my family, and some parts of the answer are easier to find than others. Here's what we're telling ourselves: First, let's give ourselves a break! If our son has a bit more screen time than the ideal, if his schoolwork has slowed down, if he's perseverating a little more than the norm, it's ok. These are not life-changing consequences. Second, there's a temptation to feel compelled to transform ourselves into home-schooling warriors. That's fine, if it makes sense for the family. For ours, it doesn't. If we were to set goals for ourselves as parents that are unrealistic, we would virtually ensure failure. Let's find our victories where we can, let's appreciate what we can do incrementally, and, again, let's give ourselves a break. Third, we all need to understand that when the walls feel like they are closing in, there's help out there. If your family is involved with a BCBA, take advantage of that. There are so many ways that a talented professional can help shape the arc of a family's life, even if the process might look different than it would ordinarily. Finally, we must remember that we don't have to become superheroes. We already are superheroes! As the parents of children with autism, we all have done innumerable things that our friends simply cannot imagine. We don't have to be perfect, as we already are pretty darn amazing. So, I say to you, just as we say to ourselves--hang in there, better days are coming!

School is important. Kind of goes without saying. When your child has autism, the school experience is really, really important on many different levels. Parents have questions: Will my child be safe? Will my child learn? Will my child have friends? Will my child experience bullying? Will my child be taught things that are relevant and will help him grow towards as independent a life as possible? And how will I know if any of this is happening or not? The first and most important principle that defines the relationship between parents and educators is that must be one of collaboration. School personnel must understand that these parents are often hurting, scared, heartbroken, and sometimes they will speak in ways that are less than diplomatic. Parents, in turn, must know that the people sitting across the table from them are not miracle workers, but that the vast majority are called and committed to do their best to help make each child's life better. They are, for the most part, highly-trained professionals. So what can a parent do to build a collaborative relationship with teachers and support staff? 1) Communicate --give these people information that will help them help your child. Is there a new behavior that's emerging at home? Is there a new circumstance that presents a particular challenge? Let them know. And encourage teachers to do the same about happenings at school. 2) Be there and build relationships --whether it's volunteering as a room parent, writing a thank-you note (and delivering to the classroom by hand), or simply coming into the building to pick up your child early for an appointment (as opposed to having him brought out), find ways to have non-hostile, face-to-face interactions with the people in your child's life. 3) Empathize --understand that while schools are compelled by law to provide certain levels of service and accommodation, their resources are not unlimited. Also understand that teachers and support staff are used to dealing with angry and hurting parents--use kind words and a respectful tone even if disagreeing. 4) Prioritize --is the accommodation you seek vital and fundamental to your child's progress? Then do what it takes to get it. Is what you're asking for more marginal? Something that would be nice to have but won't make that much of a difference over time? Then don't make that a hill you die on. If the people at your child's school feel that you are a partner and not an adversary, your child will benefit. There may be times you have to fight, and then fight you must. But even then, relationships can be maintained, and your child's experience will be enhanced over the long run.

We swore we'd travel, darlin' side by side We'd help each other stay in stride But each lover's steps fall so differently But I'll wait for you And if I should fall behind Wait for me. ---"If I Should Fall Behind", Bruce Springsteen For parents, there are few challenges greater than a child with autism. It impacts everything. Marriage. Siblings. Friendships. Retirement planning. Mental and physical health. There is, quite literally, no part of a parent's life that is not in some way affected by one of these special children. And just like everything else between married people, spouses do not process a child's autism diagnosis in exactly the same way. One parent may embrace the challenge immediately, and one may take longer to absorb the new reality. One may attempt a hyper-organized approach to "curing" the problem, while one may fall back on intuitive habits and preferences. That does not mean, however, that one parent is "right" and the other "wrong". The fact is that both parents have unique strengths and perspectives to offer as they raise their child; and this is true whether this child has a diagnosis or not. For both parents to be most effective, they have to acknowledge, accept, and value that fact. This means compromise, this means accommodation, this means, quite simply, being married like anyone else. In the life of my own family, I am the planner, the scheduler, the organized one. I am the one who most naturally gravitates toward the structure that a child with autism craves. My wife is intuitive, reactive, more apt to embrace joy (or sorrow) in the moment that it occurs, rather than incorporate it into a "rational" process, as I might. And how is our son impacted by having parents with different perspectives? With me, there's no doubt he appreciates the structure and routine that is my predisposition. And with his mom, his face lights up in a way that it never does for me. And that's OK. He gets the best of both worlds--the best of his parents, and he is on his way to being the best he can be.

Our son has to be integrated into the world in which he lives. We cannot hide him. Or ourselves. If the price we pay is a frown or a snide remark from time to time, so be it.