Next Stop Author Glen Finland Discusses Raising her Son with Autism

Glen Finland chatted with Jason Harris and the Jason’s Connection Team over phone about her eye-opening book Next Stop and what it’s been like as a mother raising a son with Autism. In the interview, she updates readers on what’s going on in David’s life today as well as how touring with her book has impacted her life and voice in the disability community.

Glen Finland is a National Autism Advocate who has been featured on CNN and is originally a broadcast journalist herself. Her book Next Stop was a 2012 Barnes & Noble Summer Pick and a Penguin Book Club pick for October 2012 in honor of National Disability Awareness Month.

JASON: CAN YOU TELL US A LITTLE BIT ABOUT YOUR BOOK, NEXT STOP?

GLEN: Yes, Jason, I can.  It’s about the summer that I spent teaching my son, David, who was 21 at the time, tall, dark, and autistic, to ride the Washington< D.C. Metro, solo, and in the process, he taught me how to let him go.

JASON: CAN YOU TALK ABOUT THE SEPARATION STRUGGLES YOU WENT THROUGH, THAT ALL PARENTS GO THROUGH, LETTING YOUR CHILDREN GROW UP, AND WITH DAVID, HOW IS IT SIMILAR AND DIFFERENT FROM YOUR OTHER TWO SONS, AND HOW IS IT DIFFERENT JUST WITH DAVID BEING THE YOUNGEST TOO, BECAUSE I KNOW SOMETIMES IT’S TOUGHEST TO LET YOUR YOUNGEST GO.

GLEN: Well, I would say this.  Let me see, where to begin.  First of all, autism is never the parents’ dream for a child, but we know that all parenting is hard work. Honestly, the hardest part of the job is to give kids both roots and wings to teach them how to live without us. And, of course, in the natural order of things, the day comes when we as parents will say, “go live your own life” only do it without me.  But for parents of young adults with autism that day may never come.  We may never get to the point where we can sit back and say “my work here is done.”  So, instead we stick around to advocate.  We stick around to help them with the lack of language skills to get what they need or whatever it is.

And you also asked about siblings.  That is something I’ve been thinking about and writing about a lot lately, because David has two older brothers and it seems to be that sibling neglect is one of autism’s best-kept secrets.   I mean, the thing is autism is never a story about a single child; it’s about the entire family who loves him.  And because the “squeaky wheel gets the grease,” that means that many of the needs of the neuro-typical siblings sometimes get pushed to the background.

So, I’m concerned about that because it often happens that David’s needs have sort of out shown everyone else’s life at our house.  And I had really looked back and thought about the vulnerable crew I was creating by not paying enough attention to his other brothers, his siblings.   So, I would say the one thing we did right during those teenage years, was to try and have dinner together every night at 7 o’clock.  It sounds so simple, but I’m not a doctor; I’m not a therapist, but everybody could count on a healthy meal, and it gave us time to sort of praise each one of our three sons’ triumphs or help balance their setbacks, or some nights we just argued the whole time like every messy family does.

Sometimes, once in a while, we got this sort of inkling of what it’s like to have a younger brother with autism.   We try to pay close attention to all of these conflicted feelings – talking about love and loyalty and resentment and anger and guilt and embarrassment.  But, you know, listening really carefully to their worries and acknowledging those worries without criticizing them seemed to help us realize that we were, I don’t know how to put it, sort of all in it together.  That was our sort of homemade therapy, as simple as it sounds.

JASON: YOU SPEAK OF LETTING GO, OF LETTING YOUR ADULT CHILDREN GROW UP, AND YOU SPEAK OF YOUR OWN STRUGGLES.  CAN YOU TALK ABOUT WHAT IT WAS LIKE FOR YOU AND DAVID, AND DID YOUR HUSBAND GO THROUGH THE SAME STRUGGLES?  AND DO YOU THINK YOU PROJECTED SOME OF THOSE STRUGGLES ON TO DAVID, OR YOUR WISHES, OR HOPES OR FEARS, OR VICE VERSA?

GLEN: Well, you know as all of our boys grew older, we really tried to learn to value each one’s right to self determination. In time we included all three of them in developing the plans for David’s future. In very separate simple, intimate, quiet conversations. We discussed the older brothers’ concerns and their future care-giver responsibilities.  How David’s special needs trust fund could be managed to give him the life he could call his own one day.  And, I have to say, it was a daunting task, this idea of a “Plan B,” and it’s an ever-changing work in progress.  But I must say it’s deeply comforting to know that David’s brothers will be there for him when my husband and I are no longer around.

JASON: WHAT IS YOUR RELATIONSHIP LIKE BETWEEN YOU AND DAVID, YOUR HUSBAND AND DAVID, AND EVEN JUST DAVID AND HIS BROTHERS?

GLEN: Well, the middle brother is very protective of David. Even though he lives in New York City and we live in D.C., he still keeps in contact with him, the middle brother, Eric.  The older brother lives in D.C., and we see him less.  And I think I have to honor each sibling, each one of my son’s ideas and how they can live their own lives at this point in their lives.

When I was in my late twenties, I had a lot of freedom.  Perhaps they don’t have as much because they have this sort of overriding knowledge that in the future they will be caretakers not only of their own families and children, but also their younger brother.  So, that’s an important thing for them to consider, and I have to honor their choices at this time.

My relationship with David?  He’s a loner. He’s respectful.  He has a wonderful sense of humor.  He likes to be separate from me; he likes to be independent. I like to honor that. It’s a learning process.   I haven’t managed to find the answer.  There is no way to fix it or there is no magic bullet.   It’s just like everyone else.  It’s just one step at a time and one day at a time. And sometimes we get it wrong, really wrong, but, hey, what parent doesn’t?

JASON: SO, DID DAVID WANT TO LEARN TO USE THE METRO, OR WHAT MADE YOU DECIDE THAT YOU WERE GOING TO LEARN TO USE THE METRO?  WHAT WAS IT LIKE, THAT SORT OF ADVENTURE OF TRYING TO TEACH HIM THE METRO, AND HIM TRYING TO LEARN IT?  BECAUSE THAT IS TOUGH.  I LIVED IN LONDON AND IT TOOK A WHILE TO LEARN WHERE YOU WERE GOING.

GLEN: I often think about something that I heard Bob Marley say once. He said you never know how strong you are until being strong is the only choice that you have. And I have to say, letting go of David did not happen all at once. It happened in jerks, and fits, and stops, and starts – sort of just like riding the Metro.  That’s why I use the idea of the Metro throughout the book.

Frankly, there were many times when my kid got off at the wrong stop and he was lost in the city, and I never knew if I’d ever see him again.  You know, that first time the doors closed behind him and he took off.

One night I found him miles from home, about twenty-six miles from home.  He was lost and finally telephoned me from a bus stop in front of a pool hall, and I will always be grateful to the kind working girl who stood there with him that night and made sure he was safe until I drove up.  I’m telling you this story because loving David has taught me lots of things, and it has taught me there are many different ways of being human and that it takes all kinds.

JASON: HOW HAS THIS AFFECTED DAVID?  HAS HE GAINED MORE CONFIDENCE?  DOES HE FEEL MORE INDEPENDENT?

GLEN: You nailed it.  Absolutely!  He respects his own choices now. Before he was just looking to me to decide which direction he could go in. Now he knows he can take off.  From learning to use the Metro on his own, he started to pay attention to roads and signs, and all sorts of things that most of us as we mature into adult drivers, we just take intuitively, to take in.  But he never had to do that. Now, suddenly he was having to make decisions for himself.  It took us three tries, but he got his driver’s license and now he takes himself to work every day in his own little car.  So, it was huge.

JASON: AND HE JUST GOT A NEW JOB.  WHAT IS HIS NEW JOB AND DOES HE LIKE IT?

GLEN: His new job – it took us about six or seven years in the making to get. It really has been a huge celebration for us, quietly, in our home this summer.  He is a national parks service ranger. It is a temporary job for three months, but it is at Wolf Trap Farm Park.  If you know D.C., it is part of the National Parks Theater Under the Stars program. He is directing traffic and helping cars find parking spots in the evening when they come to see anybody from Yo-Yo Ma to Ringo Starr. It has just been great for him.  He has a uniform. He loves it, because he loves being outside and he is quite physical – he loves to be on the move. So, he is a happy ranger.

JASON: WHAT ARE SOME OF HIS INTERESTS THAT HE DOES AROUND WASHINGTON, D.C.?  DOES HE HAVE FRIENDS HE HANGS OUT WITH, RELATIONSHIPS, AND THINGS HE DOES WHEN HE IS NOT WORKING?

GLEN: To answer the first question, what does he love to do?  He is a distance runner.  That one thing that we all have that we do really well and better than anybody else?  That’s his. He’s a great distance runner. He is a member of Achilles International Team based out of New York. He runs with the Wounded Warriors and developmentally-disabled people, all kinds of runners.  It’s just been great.  He’s been doing that for about six years.  He runs long-distance runs with Achilles – including the New York City Marathon.  That is what he is training for now.

As far as friends, no, he is a loner. He’s very much to himself. I try not to worry about it, because he doesn’t seem to worry about it, and that’s the way his life is. I assume like most human beings, he would love to have someone special in his life, but it hasn’t happened yet.

JASON: TELL US ABOUT YOURSELF.  YOU ARE A FORMER T.V. REPORTER AND FREELANCE WRITER IN WASHINGTON, D.C.

GLEN: Yes.  I have a background in journalism, both broadcast and print.  Now I am a freelance writer.  I continue to write pieces.  In my business, when you are a freelancer, you pitch until you win.  I sit at home and think about great topics I want to write about.  Mostly I write about personal stories, human interest stories or a lot about autism and families and so forth.  That is what keeps me busy – just trying to raise awareness and advocate for this population that I admire and love.

JASON: WHAT HAS YOUR SON, DAVID, TAUGHT YOU ABOUT LIFE AND DIFFERENCES AND SIMILARITIES AND UNIQUENESS?

GLEN: That is the funny thing about loving an autistic child.  We set out as parents to change them, and they end up changing us.  Our kids teach us how they find their place in the world.  Eventually, we get it.  We may not understand it, but we get it. I have learned this:  I have learned the importance of sharing not only my stories but encouraging other people to share their stories. Because if we put them together our stories can become powerful tools because they diminish our differences and they mark us as human, and they’re about as close as most people will ever come to understanding autism.

JASON: I SAW IN A COUPLE OF PIECES THAT YOU SUPPORT AUTISM SPEAKS, WHICH IS, TO BE A LITTLE BIT FRANK, IS A LITTLE CONTROVERSIAL IN THE AUTISM COMMUNITY ITSELF.  WHAT ARE SOME OF YOUR THOUGHTS ABOUT THEM AND YOUR FOCUS AND OTHER THINGS YOU FEEL ABOUT THEM.

GLEN: My focus is not on cure or research – I’ll be honest with you – or prevention.  I’m so beyond all of that. I’m selfish in that what I care about is competitive employment, and finding jobs in the community for this population.  Because, you know, the face of autism is changing and five hundred thousand children who fit somewhere along the autism spectrum today are becoming adults in the next decade.  So, that is my focus. That is really what I care about.

David is just one of many young Americans who have come of age in the age of autism.  I want to change the conversation.  I want to quit talking about blessing, and blaming, and crosses, and cures. I just want to talk about the very “right now” of creating opportunities for a decent quality of life for these young adults. Because young adults with autism are entitled to private lives just like you and me.  That involves the dignity of risk.

JASON: IT DEFINITELY SEEMS MANY PARENTS ARE SCARED WITH ANY CHILDREN, BUT ESPECIALLY CHILDREN WITH DISABILITIES TO TAKE RISK.  HOW WERE YOU ABLE TO DEAL WITH THAT?  YOU WERE ABLE TO THAT AND THAT COULD BE HARD FOR ANYONE, TO TAKE RISK.

GLEN: Yes, exactly.  Independence involves the dignity of risk, and that means letting go.  And, no, it is not easy, but I have found that failure has been a great lesson, an empowering lesson. My son’s life, especially when it comes with a do-over.  Sometimes we fail; sometimes we have a tiny little success that we can sit at the kitchen table and toast each other with.

JASON: IT SOUNDS LIKE NOT WHAT YOU THOUGHT ABOUT FOR DAVID, BUT YOU’VE DONE A GOOD JOB ACCEPTING WHAT HE MAKES OF HIS OWN LIFE AND AT LEAST IT SOUNDS FROM EVERYTHING I’VE HEARD THAT HE IS MAKING HIS OWN LIFE.  IT IS AMAZING FOR ANY OF US.

GLEN: I really am looking to David’s future and it means making room for the autistic worker in the cubicle beside the next guy – making room for the quirky employee who jostles your arm, spills your coffee, and then walks on by without saying “sorry.”  It’s this awareness that we have to realize it takes all kinds of people and a sense of humor helps un-ruffle everybody’s feathers.

JASON: IT SEEMS SOME JOBS ARE STEREO-TYPICAL NOW, PEOPLE TYPICALLY THINK PEOPLE WHO ARE NOT NEURO-TYPICAL, IT SEEMS LIKE IT IS BREAKING THAT MOLD.  THERE ARE A LOT OF OTHER OPPORTUNITIES THEY PEOPLE SHOULD BE ABLE TO HAVE AND COULD SUCCEED WITH UNDERSTANDING OF WHO THEY ARE.

GLEN: It is really for any of us, not just my autistic son but for all three of my sons.  Life is about all of the choices you make together and not just the early ones.  And whether I protect David from some horrible school bully or fight for the right for a really good, meaningful job, the choices that I hope he makes going forward are going to create the map to a life he can call his own.  So, again, I go back to this idea of roots and wings.  It’s the best we can do.

JASON: IT SEEMS FOR MORE THAN THE PEOPLE, IT AFFECTS EVERYBODY IN CERTAIN WAY.  IT HAS BIGGER EFFECT THAN JUST, HEY, WE’RE GIVING THIS PERSON A JOB.

GLEN:  It’s the entire fabric of a community that we have to make room for all different kinds of folks, all different kinds of folks. I mean, you know, from childhood we seem to understand ourselves and our identities through the stories we are told.  And if we hear stories about other kinds of people, you know, if the stories we hear are mostly negative, we might just start to believe them.  So, I’ve always felt that when you have an opportunity to do something important for someone you love, you have a responsibility to do it.  Because outsiders can only see what we insiders know.

JASON: THANK YOU.  WHAT DO YOU HOPE PEOPLE RECOGNIZE OR WALK AWAY WITH FROM YOUR FAMILY STORY OR THIS INTERVIEW?

GLEN: Well, I think there are lots of universal lessons that any parent can take away from Next Stop.  We can all relate to the idea of giving our kids roots and wings, because that is nature’s way.  But, you know, there is also something else going here.  From the responses I’ve had to Next Stop, after I do a reading – almost every time – or I do a public speaking thing, people come up to me to tell me their own stories.  So I’m starting to see that I am passing the torch. I find that I am becoming the listener and I like it very much because people are aching to share their stories with people who understand what it’s like from the inside.  My husband calls me the “big ear,”– and it’s a pleasure and an honor to be able to facilitate sharing stories that other people have.

JASON:  ARE THERE ANY LAST WORDS THAT YOU WISH TO SHARE OR LEAVE WITH THE READERS?

GLEN: Well, I guess I would just have to say that there is no one right way to do it.  That we just do the best we can. You can’t feel guilty about your emotions, because it doesn’t make you weak; it just makes you human.  We just have to put one foot in front of the other and keep on going.  It’s a worthwhile fight, and be sure and keep your sense of humor in your right back pocket.  You’re going to need it.

This is an original interview from Jason Harris, co-founder and spokesman for Jason’s Connection.