SHH: I am Sheldon H. Horowitz, Ed.D., senior advisor of strategic innovation, research, and insights at the National Center for Learning Disabilities. And it’s my pleasure to be chatting with Alan Pesky, a former long-standing member of NCLD’s board of directors.
Alan, let me begin by saying congratulations on a wonderful book, More to Life Than More — a memoir that will undoubtedly touch the hearts of parents whose journey, like yours, was shaped by anxiety and adventure, lamenting and longing, worry and wishing, obligation and opportunity, and most of all, unbounding love.
The Not-Always-So-Smooth Runway from Early Learning to Living
SHH: Reflecting on your experience with Lee and his many transitions — from high school to postsecondary education to the workplace and to a path to an independent life — what would you say high schools can do better to support students like Lee, as well as you and Wendy and your family?
AP: Thank you, Sheldon, for the opportunity to speak with you about my experiences in parenting a child with learning disabilities (LDs) and sharing what I’ve learned since founding the Lee Pesky Learning Center (LPLC). I’m grateful for everything NCLD has done to promote understanding about the science of learning and to advocate for those who learn differently.
As you and I both know, when schools and educators recognize and accept that all kids learn a bit differently, when there’s good communication between teachers and parents, and when schools have protocols in place for supporting and accommodating kids with learning disabilities, those kids are much more likely to thrive.
In high school, planning ahead is a big part of the equation. What does a student who has learning differences want to do after high school? How is she hoping to achieve her goals? It’s helpful when schools can engage students and their families in transition planning by discussing post-graduation options and the pros and cons associated with each. And they should encourage such students to play an active role in shaping their own Individualized Education Program (IEP) by including their goals. (An IEP, for readers unfamiliar with the term, is a dynamic document that maps out the special ed support, instructions, and services that enable a student with learning disabilities to progress and thrive in school. IEPs are covered by IDEA — the Individuals with Disabilities Education Act — and are usually developed by school staff and parents based on assessments from special education professionals and others.) Participating in this process will help the student build her self-determination and self-advocacy skills — something she will need as a learner and worker.
The support of high school teams should extend to helping students and families understand the requirements of two- and four-year colleges as well as the supports that may be available to them, if this is the route the student chooses to follow. Things like contacting each college’s Office of Disability Services and asking questions related to accommodations available on campus, and working with families to research whether colleges are just “going through the motions” and complying with the most basic of federal requirements, or if they strive to be inclusive and advocate for students who learn differently.
And it’s also very important for high schools to provide accurate information about federal disability protections, like informing students and parents that the federal law related to pre-K through 12th-grade students (IDEA) is not the same federal law that applies to postsecondary education. Having the necessary, relevant information can help smooth the way as the student pursues academic goals after high school.
SHH: What should colleges know and do better?
AP: I’ve seen firsthand that some schools do a great job onboarding and supporting students with LDs. But unfortunately, large discrepancies exist across colleges. It’s my understanding that on most campuses, the professionals working in the Office of Disability Services don’t always communicate with professors working in academic departments and vice versa. It’s most often left to the students to find responsive professors and advocate with those professors to get what they need in order to enjoy academic success. This is very challenging for kids, given the power imbalance between professors and students. Those in college leadership roles (college deans, director of disability services, etc.) can always improve systems and supports for students with LDs. College is hard enough as it is under the best of circumstances. I don’t think the burden should be on the students with LDs to figure out how to navigate a system which was not designed for them.
SHH: What changes in the workplace (recruitment, hiring, managing/supervising, promoting) do you think (know!) would propel kids like Lee to finding their way in a world that is sometimes unfriendly toward and often misunderstanding of learning and attention issues?
AP: Most important, I think we should be encouraging all young people to pursue work that has value and meaning for them. When companies and organizations create strength-based positions that illuminate an individual’s unique contributions, everyone benefits. Based on my own experience in the corporate and nonprofit worlds, wherever possible, it helps to be innovative and less rigid in position definitions. And once a position has been formulated, employers should share explicit workplace expectations and review them with the employee regularly. Lastly, all employers must be educated about the requirements of the Americans with Disabilities Act and held accountable when they discriminate on the basis of disability.
Advice from The Head and The Heart
SHH: Your personal journey (with Wendy and Lee’s siblings, of course) makes you uniquely qualified to talk from the “parent” perspective about what kids like Lee need. What are some of the most important things parents need, need to know, and need to do?
AP: I get this question a lot from parents. The first thing I tell them is, you are the greatest advocate for your children. If you think your child is struggling with learning in some fashion, don’t delay in getting them evaluated and diagnosed by a qualified professional. There is nothing to be gained by denial or delay. There is nothing to be ashamed of, nothing to hide. Learning differences are a matter of information processing, not indicators of a child’s intellectual capacity or motivation. The sooner you have accurate information, the sooner your child can get the help he or she needs. Then make sure the school has that information too, so that everyone is on the same page.
Second — and this is where I would have loved to have had a “do-over” with Lee — be patient with your child and sensitive to what they might be going through. Avoid judgment. Chances are your kid is already trying their hardest. Be reasonable with your expectations, and be honest with yourself about what you expect of your child: Is it for your gratification or does it reflect your child’s desires and who they are?
SHH: Same question about educators.
AP: Communication and transparency! Make sure your child’s teachers are familiar with his or her issues and the recommended remediation. Encourage them to establish a dialogue with the learning specialist who formulated the remediation plan. Ask the teachers how you can support their efforts in helping your child.
Above all, treat your child’s teachers as partners, not as adversaries. Granted, it’s an upsetting, scary thing to watch your child struggle with learning. But being combative with teachers is not going to help. I don’t know of a teacher who does not want their students to succeed.
SHH: And what about people in the community (i.e., clergy, coaches, local employers)?
AP: This is a tough one, and I don’t have a simple answer. In most situations, I believe it’s helpful to be open about the challenges your child is dealing with, and even advocate for them, when it might affect how they will be treated and the quality of the experience they’ll get out of an activity. That said, it’s important to be sensitive to your child’s desire for privacy. They might not be comfortable with you sharing certain information about them. This is a delicate line to walk. The stigma surrounding learning differences is certainly lessening. But your child may not see it that way, so talk to them. You might ask them how they feel about it and what it means to them before you talk to people in the community about it.
Making A Difference
SHH: The evolution of the Lee Pesky Learning Center seems to have been a natural fit for you as a builder and entrepreneur, from identifying the unmet needs of the marketplace, to recruiting the right people, measuring impact, and expanding a menu of deliverables that offer solutions to individuals with learning and attention issues, their families, and their communities of care.
Back in 1975, your instincts and motivation for creating a “home” for evaluation and treatment services were very personal. Did you consider other options? For example, a national media campaign to raise awareness of learning and attention issues might have been right up your alley!
AP: The idea to do something in Lee’s memory was conceived while he was sick, shortly before he passed away. Helping children who have LDs was an obvious choice. Media campaigns can be very effective at raising awareness. But when I was starting in 1995, a national media campaign would have been a mammoth undertaking, far beyond my capabilities. And it probably would have been premature because there was still relatively little understanding on the front lines of education and among the general public about learning disabilities. Even among education specialists, the expertise was not nearly where it is today.
As you mentioned in your question, I wanted whatever I did to be personal. I wanted to make a “hands-on” difference in the lives of children and their families — something I could put my heart into. And since there were so few facilities in the country that could provide diagnoses, remediation, and counseling under one roof, I felt this is where I could make the greatest impact, and it seemed doable.
SHH: And thinking about the many current LPLC programs and services (including publishing instructional guides, advising the state department of education, offering pre-service and ongoing professional development to educators, and more), what’s missing? Are there some big ideas or expanded opportunities you hope to realize at the center? Or can you envision ways that the LPLC might increase its impact through partnerships in or outside of Idaho?
AP: LPLC has always relied strongly on partnerships, as we point out in More to Life Than More. In fact, collaboration has been a cornerstone of our philosophy and approach since day one. We could have never gotten off the ground if we hadn’t worked closely with state agencies, legislators, school districts, teachers, and foundations. A partnership that gave us a big boost early on was with the Tuck School of Business at Dartmouth. They prepared a case study about the establishment of LPLC, which is still being used in their Entrepreneurship in the Social Sector curriculum. Our association with a leading business school gave us added credibility to forge new partnerships and seek support from prominent foundations.
We’ve had opportunities to expand by joining larger organizations. But bigger is not necessarily better. We’ve always been very intentional about how we choose to expand, so that 1.) We don’t stray from our core mission or get distracted by being pulled into things that are not our forte, and 2.) We don’t compromise on the science of what works. Partnerships, like the one we have with Boise State’s College of Education, have given us the ability to expand our reach, to make an impact far beyond our footprint. Other examples include a partnership with Lafayette College and Yale University on the early detection of dyslexia. Because of these collaborations, we have come far beyond what I or anyone else could have envisioned when we first opened our doors.
So, what’s missing? There’s always more for us to learn, more ways for us to improve, more people to reach. For us, the “big idea” has been, and will continue to be, leveraging our expertise for greater impact. The first big leap was taking what we learned in working one-on-one with children with learning disabilities and parlaying that expertise to advance early literacy in our state. In helping pre-K through second-grade teachers use evidence-based reading instruction in their classrooms, we can help lift the tide for all young learners, not only those with learning disabilities. The Idaho Early Literacy Project is a culmination of that effort: a three-year collaboration launched in 2018 involving seven school districts, 200 educators, and 3,000 students.
Our mission will always be to help children find a pathway to learning. But how we view that continuously evolves and broadens, as we learn to look at challenges in education from different angles. For example, LPLC’s partnership with Boise State’s College of Education has, according to the former dean, led the college to invest more in research, which, in turn, strengthens its ability to contribute to advancements in the field of education. We also move the needle by preparing the next generation of special ed professionals through internships at the center. And in expanding our definition of obstacles to learning to include inequities in our educational system, we are finding ways to support Latinx students to pursue careers in education. Literacy affects us all. The more approaches we can use, however small, to make sustainable, systemic improvements, the better.
Inside and Out, Stigma Hurts
SHH: The book is filled with examples of how hard it was for Lee to be true to himself when others saw him as different, not connecting the dots in predictable ways (or, more likely, having a different set of dots to connect!) compared to others. Unfortunately, being different, needing something different, and coming to terms with those differences is a hard and lonely road, one that is often complicated by feelings of shame and low self-worth. I get the impression that over time, Lee embraced who he was, knew what made him happy, and knew what he needed to succeed, in no small part because of the support and encouragement he received at home and through a tight community of friends.
Can you share some examples of how Lee struggled with and overcame these feelings? What was it like for you to watch these struggles unfold, and were there ways that you helped Lee feel good about himself even during the most difficult of times?
AP: Remember that when Lee was in school and even a young adult, awareness and understanding about learning disabilities were still very rudimentary. Since we as parents had no knowledge of LDs, we weren’t able to understand what he was struggling with. The impact on kids like Lee was devastating because schools and parents had expectations that were misaligned with how these kids learned. It was a perfect storm for screwing up a child.
I think Wendy and I did all we could with the information we had. The biggest problem we had was a lack of understanding. It wasn’t until Lee graduated from college, started his own business, and found a woman he loved, that he blossomed. Once he was out of an environment that placed unreasonable and restrictive expectations on him, he thrived. As I watched him during those years, I started to see a “different” Lee, one whom I had not allowed myself to see. Our relationship improved once I put aside my expectations and trusted the decisions he was making for himself. I have often wondered what might have been, how he would have continued to evolve based on what we were seeing. What a cruel twist of fate that cancer took him just as he was coming into his own.
Changing Minds with Words
SHH: In the more than two decades we’ve known each other, I’ve always been a little envious: Your every day at work involved “word play,” and it’s clear from your narrative that you enjoyed the challenge of shaping messages that impacted public perceptions and behaviors in powerful ways. Generations of consumers have been influenced by slogans such as “It takes a tough man to make a tender chicken” and “We have to answer to a higher authority.”
What might you offer as a few public-facing slogans that could move the needle for individuals with learning and attention issues? And if that’s an unreasonable lift without first pulling together your creative dream team, what are some of the words or phrases that would drive the creative process?
AP: Here are phrases I find myself using most often:
- The problem with a child who has learning disabilities is not the child. It’s everyone around the child who doesn’t understand why he isn’t performing to his apparent abilities.
- Love the child you have, rather than the child you want.
- Your dreams for your child are not necessarily your child’s dreams.
- Leave your ego out of it. Use trust instead.
- Think with the other person’s head, feel with the other person’s heart.
If The Sea and The Seal Could Talk
SHH: In May 2006, you gave me a copy of The Sea and the Seal, inscribed with worlds of friendship, and it’s been cherished, nestled among the dozens of children’s books that I have collected over the years. When you shared your manuscript with me, I remembered those words and drawings and how deeply I was touched, imagining what Lee might say if he could share words of reflection and encouragement.
Having spent countless hours immersed in reflection and contemplation about Lee’s “inner voice,” what advice do you think Lee would offer to young people who have learning and attention issues as they find their way to “more”?
AP: I think this is what Lee would say to another young person: Talk to your parents. “Try and understand that I’m doing my best but it’s not happening the way the school or you want it to happen. Let’s figure this out together, figure out a way to help me. Here’s what I really love doing. It may not be what you or my school is looking for. I know that you want me to be happy and successful, but your version and my version of happiness and success may not be the same. And that’s OK.”
SHH: Alan, thank you for the opportunity to share this time with you and learn even more about the magic that was Lee and the gifts that he brought to you, your family, and to us all.
Alan Pesky is the founder of Lee Pesky Learning Center (LPLC), a nonprofit working with families, schools, and communities to overcome obstacles to learning. In its 25 years, LPLC has become a nationally known force for early literacy. Alan was a founding partner of the advertising agency Scali, McCabe, Sloves. He and his wife, Wendy, are ardent supporters of education and humanitarian causes. Now residing in Ketchum, Idaho, they were honored in 2005 as Outstanding Philanthropists of the Year in Idaho. Alan has served as trustee of his alma maters, the Tuck School of Business at Dartmouth and Lafayette College, and is a former member of NCLD’s Board of Directors.