“I try to read to her every night, but she keeps talking. She doesn’t listen. I can never get through a book.” The concerned mom looks at me over the back of the IHOP booth that separates us. I look at her bright-eyed, engaged, curious, charming four-year old daughter, who is looking first at Mama and then at me. (Yes, I start random conversation with kids and their parents at restaurants. Doesn’t everybody?)
“That’s ok. As long as what she says has something to do with the book, it means she’s engaged.”
“Huh,” says Mama skeptically. “I asked her teacher about it and that’s what she said.”
I wait as the “But…” lingers between us until she decides to go on.
“I just always pictured that when I had kids, we’d have story time, you know, where they would listen.”
And there you have it. The biggest obstacle to really enjoying and appreciating your child: that vision of the child you thought you were going to have. Louis Cozolino, psychologist, professor and author, says, “A lot of the work I do is to get parents to let go of the ideal child they imagined and appreciate the child they have.”
All expectant parents form an idealized image of the child they are about to have: she’ll love baseball like I do; he’ll share my favorite books with me; I’ll finally have someone who enjoys gardening as much as I do. When the real bundle of joy finally comes, all parents need to go through a stage of mourning that ideal child before they can fully bond with the actual one.
For parents with children with learning disabilities, handicaps, of other alphabet soups (ADHD, ASD…) the gap between idealized and actual child is generally larger, so the mourning process is more profound.
Often times, teachers are the first responders to what can be a parental crisis. As such, it behooves us to know a little bit about what to expect, and more importantly, how we can support these parents who may, for the first time, be facing this ideal/actual gap head on.
As a young teacher, I used to walk into the teacher’s lounge in frustrated confusion.
“Wouldn’t you rather know that your child has dyslexia so you could start doing something about it?” I’d demand of whomever happened to be sitting in the lounge at the time.
What I didn’t fully get is that when a parent is suddenly faced with new knowledge about their child that creates a rift between their ideal child and their actual child, they enter into a very real mourning process, just like the one Elizabeth Kübler-Ross delineated: denial, anger, bargaining, grief, and eventual acceptance. Of course, mourning isn’t linear and it can often get re-triggered at later stages of education.
This understanding brought more compassion and empathy to my interactions with parents, and a lot more sensitivity to how I broached the subject of a possible learning difference to begin with. Who wants to be the equivalent of the doctor who walks in and blurts out, “It’s cancer,” and then wonders why all his patients get so upset?
In my younger-self’s defense, I never saw learning differences as the equivalent of cancer. Acceptance! Neurodiversity! Celebrate the differences! Thank goodness I eventually got that those attitudes will come in time, once the grief of “Something is wrong with my child” has been worked through.
As first responders, what should we teachers have in our emergency kit on those days that parents are sitting across from us, digesting the words we just uttered that may or may not be shattering their image of their ideal child?
Tool #1: Support in grieving the loss of the perfect child
- a way to tell their stories
- their feelings validated, especially the ambivalent ones
- support and community
While an empathetic and compassionate teacher can start to provide the listening, validation, support and community a parent is going to need, s/he can’t provide it all. This is why it’s a really good idea to have a short list of parent support groups, real and virtual, tucked away along with your list of neuropsychologists, educational therapists and tutors.
Some really good places to start:
- Understood, a website designed by fifteen non-profits to work as a one-stop shop for information and support about learning disabilities.
- Headstrong Nation, an online community for people with dyslexia, created by Ben Foss, author of The Dyslexia Empowerment Plan.
- International Dyslexia Association, the premiere group for educators, researchers and parents involved with dyslexia. So much information, you barely know where to start.
- Yale Center for Dyslexia and Creativity, a wonderfully inspirational resource, not only with the latest news and research, but with myriad success stories and a definite strength-based approach. Try surfing it with your child and let them pick whom to read about–artists, architects, writers, scientists…
- Children and Adults with Attention Deficit/Hyperactivity Disorder (CHADD): the international community for people dealing with ADHD, including links to local support groups.
- Autism Society, a great source for information, resources and referrals.
- Learning Disabilities Association of America (LDA), a wonderful group dedicated to supporting, researching and advocating for all learning disabilities.
Tool #2: Grounded hope
- a realistic, multifaceted view of the future
One of the questions I get asked a lot is, “Is my child ever going to get over this?” It’s important to be truthful and to balance the negative (learning disabilities are lifelong) with the positive (your child will probably be fine in the long term). According to David Feldman and Lee Kravetz, authors of Supersurvivors: The Surprising Link Between Suffering and Success, the greatest factor that allows a person not only to bounce back from a tragedy or crisis, but to bounce forward, is grounded hope. People don’t need a Polyanna, rose-colored glasses view of their or their child’s learning difference–that is just going to sound hollow and invalidate the very real struggles they have faced and that are ahead of them. Nor do they need a gloomy “all is lost” attitude. (If a parent ever hears a teacher or tutor or neuropsych or anyone say anything that begins with “Your child will never be able to…” they should turn around right then and storm out of the office.) They need a realistic assessment of the challenges and difficulties they will face (that’s the grounded part of it) AND a sense that given their situation, life is what they make of it (that’s the hope part of it). Grounded hope fosters the greatest resilience.
As an example, when I am asked if a child is ever going to get over their learning difference, I say, “Well, there will be improvement with good remediation, but the learning difference will always be there. Take Gavin Newsom (former San Francisco mayor, current California Lieutenant Governor, and possible future California Governor); he has dyslexia. He confessed to the kids at a local school for kids with dyslexia that he has to get up two hours early to read the newspaper every day since he reads slowly. He confided to Quinn Bradlee in an interview that out of all the speeches he has ever given, he maybe has read two or three from text. So, did he “get over” his dyslexia? No. Is he unsuccessful because of it? Not at all.
The internet is filled with stories like his. They can be encouraging and inspiring to kids and parents alike. Are the cards you were given tough? Heck yeah. Does that mean you can’t succeed at whatever you want to do? Nope! Grounded hope.
Tool #3: The 30,000-foot view
- a reminder that school is not the end all or be all
- a long-term vision for their child
I was walking out of an IEP with two parents where they just heard that in addition to dyslexia, they now had to consider the possibility that their child also has ADHD. (Who on earth thought up the term co-morbid anyway? Did they want parents to feel as terrible as possible?) The father let out a shaky, overwhelmed sigh on the way to the parking lot. I said, “Ok, big picture. Your kid is amazing. He has a golden-heart, he is bright as all get out, curious, excited about the world, loving, funny…” Both parents visibly relaxed and Dad said, “And I wouldn’t trade him for the world.”
It is so easy as the test results and grades and report comments roll in to become fixated on academic success. Who doesn’t want their child to do well in school? Those A’s are awfully reassuring. But the truth is, they really don’t mean that much. (Sorry, fellow teachers, but we need to keep this in mind.)
According to one long-term study by Sir Richard Layard of the London School of Economics, the top childhood predictor of adult
life-satisfaction is the child’s emotional health. He continues, “The least powerful predictor is the child’s intellectual development.” In agreement is George Vaillant, psychologist in charge of the Grant Study, one of the longest of the long-term studies around. The Grant study started in 1938 by following 267 Harvard undergrads who were considered “normal and well-adjusted.” The study continues to follow the surviving participants, most of whom are now in their 80s and 90’s. Talk about a 30,000-foot view! Vaillant writes, “It was a history of warm intimate relationships—and the ability to foster them in maturity” that best predicted emotional, physical and financial success. “And by far the most important influence on a flourishing life is love.”
Tool #4: A view of the future
- a way to overcome the black box they see as their child’s future
Dr. Ann Gordon, psychologist and board-certified educational therapist, says, “We can only imagine a future that is based on our own experience. When we can’t picture our child doing what we do, [their future] looks like a black box. We don’t know what will happen with our kids and that’s what is hard to live with…
But the reality of the world is that there is an infinite number of niches and we can’t predict them.” The unknown of the future may be particularly frightening for parents of kids with learning disabilities, but the truth is that none of us knows what the future may hold. Don’t believe me? Check out this list from Clarius:
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Not only do parents need to remember that no parent, even of the most neurotypical or academically gifted kid in the world, can accurately predict what their child will do as an adult. They need to understand that grades are not only a terrible predictor of life success, they don’t even predict success in the first year of college, according to James Parker, Canada Research Chair in emotion and health at Trent University. Finally, they need to realize that, while schools want children to be good at EVERYTHING, their child only needs to find one niche post-school in order to be happy, successful and gainfully employed. Dr. Mel Levine put it this way: “When they grow up, they will be able to practice their brain’s specialties; in childhood they will be evaluated ruthlessly on how well they do everything.” Dr. Deborah Waber agrees: “In childhood, we expect everyone to be the same. As you have more choices and as you can find your niche, the learning disability fades.”
Think of Temple Grandin becoming an animal husbandry expert because her autism allowed her to picture what a cow would see as it went into a corral. Or the men and women with autism that the Israeli Defense Forces are using to study aerial photographs to look for minute changes day to day, a task beyond their neurotypical compatriots. Or David Neeleman, the billionaire founder and CEO of JetBlue who couldn’t stand waiting in line at airports because of his ADHD, and so invented the now ubiquitous self-check-in kiosk.
Or Kasey Studdard, offensive guard of The Houston Texans, who was teased mercilessly in school for going to special education classes, until a growth spurt made him formidable on the sports field. He writes, “Sports became my salvation. When I stepped inside the white lines, all my insecurities and fears melted away…I just needed to let my God-given talent take over. There, my classmates and friends still looked at me as “special,” only not because I couldn’t keep up, but because they were having trouble keeping up with me.”
I could go on and on, but the point is that just because you can’t predict where a child will find their success, doesn’t mean they won’t.
Tool #5: What parents really can do
- help letting go of what they can’t control
- information on what they can do to help their child
So that brings us to the final tool teachers need to have in their emergency crisis kit to help support parents of kids with learning differences: information on what they really can do for their child. No, they won’t be able to magically “cure” their child. (Ben Foss aptly reminds us, “There will be no cure because there is no disease!”). They won’t be able to control the future or even predict it for their child. But they can help them be ready for whatever the future may hold.
Dr. Ann Gordon says, “The more we can see [the children] for who they are, the more they will have the confidence to go forth.” Remember that Sir Richard Layard found that the number one predictor of adult life-satisfaction was a child’s emotional health? What better way to nurture and support a child’s emotional health than by seeing–and appreciating–her or him for who he or she really is. Dr. Mel Levine writes, “Parents have a special responsibility and joy as they get to know well and to cultivate their children’s individual minds.” I’ll allow the parent of a child with Down’s syndrome to have the last word of advice.
Grace Tevlin’s daughter Madison loved to sing. This is particularly difficult for a person with Down’s because it takes 2-3 times the effort for them to get air out of their vocal cords than it does for neurotypical folk. Nonetheless, the Tevlin’s hired a vocal coach for Madison, whose recent video singing her favorite John Legend song went viral. (John Legend himself even re-tweeted it!) When asked what she would say to her younger self who had just discovered she was going to have a daughter with Down’s syndrome, Grace said, “Love them unconditionally. They will show you what they’ve got, and their abilities will shine. I promise.”