by Glen Finland
Amy Einhorn Books
G.P. Putnam's Son's
The cover of Glen Finland's book announces this as Next Stop: A Memoir of Family, whereas the inside title page has something slightly different. There, the memoir's title is Next Stop: A Son With Autism Grows Up.
As it turns out, both subtitles are accurate. This memoir opens with Finland's recounting of the summer that she rode Washington D.C.'s Metro system with her 21 year old son David, in hopes that mastering the rails would lead David to his next stop in his life of getting a job and becoming independent. One expects from this opening that Finland's memoir will follow a path similar to my friend Rachel Simon's bestselling Riding the Bus with My Sister. In a way it does, but in a way it doesn't.
Like Simon's memoir, Next Stop focuses the reader's attention on a critical issue that often goes silent but which families of people with disabilities think about 24/7: what happens when people with disabilities, specifically autism, age-out of services at 21? What happens when a population of individuals with special needs enters a world without jobs, accommodations, or the necessary supports to live independently? We can argue about the reasons for the increase in autism in recent years, the causes for this epidemic - but none of that does anyone any good until we have solutions (and funding for those solutions) in order to best support what is and will be a significant number of people needing services.
"While mawkish TV shows and movies focus on beautiful, hazy-eyed toddlers and quirky adolescents who fit in somewhere along the spectrum, our very real autistic sons and daughters have grown into flesh-and-blood adults with matter-of-fact needs to be met in the communities they live in. We families get that instead of seeing autistic adults as targets for therapy, we must commit to a society in which they have equal access to jobs and the skills to succeed with the support and legal rights they deserve. But we also get that expecting empathy for those who lack it is a tough sell."Those of us with younger children on the autism spectrum (my Boo is 11) are already beginning to think long and hard about these issues. This is one of the things I love about the autism blogging community: just as we turned to those trailblazers (i.e., parents with children older than ours) for guidance, direction and inspiration in the early, dark days of getting diagnoses and therapies, now we're watching them to see the paths they're blazing for their children. And those who are coming behind us are watching us for the same answers we once so desperately sought - which is why, Glen Finland says, we must tell our stories and "tell them true."
Glen Finland writes candidly and honestly in Next Stop about her and her husband's struggles to find that next stop for David, the impact that has had on their marriage, the relationship between David and his older brothers, and what they keep hidden from their extended family.
""Where to begin with the things I wouldn't be telling my sister today? How to explain the raw sendoff from the teenagers at David's apartment? Or maybe the squelched promise of David's animal shelter job? How about ciphering the impact on David's psyche after two years at an independent living skills program with so little to show for it? No, I would not be explaining what it's like to watch time be so cavalier with a child.
To do so, I would have to unwrap the dried-up scrapbook of Hope that has toyed with me for years. Early on, Hope had me clinging to reports of edgy therapies and magic pills that promised results for my child. And Hope made me overlook the childhood milestones that weren't reached while we waited, believing he'd get there. Then one day, chin up and a bit impatient, I saw that my beautiful little boy no longer fit onto my lap. The cuddliness of his childhood had vanished and a thinned out version of all that sweetness had begun to sprout knees and elbows. In its place was a gangly weed with the unsteady vocal chords of an adolescent boy. But this child was different. Although his body had kept pace with its biological clock, his mind remained veiled in a separate time zone. From now on, social gaffes would go unforgiven and the mother-launched prompts that had worked before - "Got a handshake for the doctor, David?" - would seem domineering and turn me into a nag haunting the background. That thing called Hope had settled into the attic, boxed away.
Nor would I be explaining to my sister that David will make his lifelong journey in this state of being. That my son's present is his future. A solitary life to be lived in the right-here, right-now zone. Because what's not easy today will not be easy tomorrow or thirty years from tomorrow - and, trust me, no one wants to talk about that." (pg. 163-164)Those of us who have lived this life might recognize ourselves (or our future selves) in Finland's words. She's careful to say right up front that her family's stories are exactly that - one family's stories, different than any of those lived by any other person with autism, or any other family who loves him or her. She also makes no apologies for the honesty presented in the pages of Next Stop, because without families telling their stories as they are, then society as a whole will never understand people with autism and their needs and change will never happen.
"And this is why families must bear witness to their sons' and daughters' potential. Although there is still no known cause or cure for what huddles under the broad umbrella of autism, I believe other healing agents will come out of the telling of our stories. After all, we families live the reality that the researchers are digging ever deeper to comprehend. While we may not understand, we get it.
So, let's tell our stories - and laugh, and cry, and bang our heads on the table if we must - but let's tell them true." (pg. ix)That Finland does while also laying bare the emotions that parents of special needs share - the fear of what happens after we're gone.
"The howling dread for us and every parent of a special needs adult - the singular ache that dries the mouth and makes the heart race - is the growing isolation. Who will offer this human being a healthy touch, chaste and loving, when I am no longer there? Now, as he moves toward greater independence as an adult, who will know if he has not made it home by the end of the day? And if there is no one, will there be safe shelter for him somewhere in his aloneness?
For years we have fought side by side, battling for the right school, therapy, job coach, and, lately, housing. As we champion his quest to become his own man, we have no idea what twists this life will take. He's finding his own way in to where he wants to go, but he will be alone when he gets there. On the other hand, how many times have I put down the newspaper with a shudder after reading the latest story about a grim act of parental wrath that befalls so many children and young adults with special needs? That's when I find myself studying the power in my son's legs or the fine curve of his jaw. I feel wonder and a bit of awe for what he can do for himself, and am quietly convinced that some kind of grace permeates the everyday world." (pg. 185)4 stars out of 5.
The Barnes and Noble interview with Glen Finland is well worth the read.
copyright 2013, Melissa, The Betty and Boo Chronicles If you are reading this on a blog or website other than The Betty and Boo Chronicles or via a feedreader, this content has been stolen and used without permission.