Young Adult

 For most parents and most kids, adolescence is a time of great emotional development and differentiation. They don’t want to be around us, and at some point in the life of a teen in your house, you’re pretty ready for them to leave, too. 

It happened like clockwork with my typically developing daughter and me; first she pulled away, then we fought. Then I got so tired of her mess and attitude that I didn’t even cry (much) when she went to college in Vermont. Now that she’s 26 we’re very close, and yet we’ve managed to forge our very own, very separate lives.

Things have always been different for Caleb. My son is four years younger than his sister, and has a significant intellectual disability, epilepsy, autism, and is deaf. Differentiation with him has been all on me.  When my daughter was fourteen, she started the battle that is growing up.  She became embarrassed by my clothes and the things I said in front of her friends and let me know all about it. She defied me and talked back.  She was identifying herself as a person who was not like me – a step so important to becoming an adult.

Caleb has never cared what I wear, and at 22, has never once said no to a chance to hang out with me. I’m his favorite person all day every day.  If I would stay home from work and cook pancakes for him, he would never choose to leave my side. 

And this is great. It’s wonderful to be someone’s favorite person ever. For twenty-two years and counting.  All day every day.

Also, it has become pretty exhausting.

When Caleb was ten, I had to insist he finally potty-train. He would sit on the toilet for hours with me on the side of the tub feeding him tootsie rolls. It took about a month and not a few glycerin suppositories, but we did it.  He’s completely independent with toileting now!  It turns out, differentiation is going about the same way so far: slow, deliberate, and very late.

Caleb was 17 when we finally couldn’t care for him at home anymore and he moved into a group home. You’d think that would be a step in the right direction, but you’d be wrong.  Every weekend, I brought him home, catered to his whims, bathed him, and tucked him in at night.  Then every Sunday I would return him, showered and shiny, to his house.  It wasn’t until Caleb was 21 that I developed the emotional separation I needed to help him begin to differentiate.  It started with skipping a weekend.  Then, instead of bringing him home, I started visiting him at his house.  Sometimes, I would only stay long enough to take him to lunch or go to the park. 

There are many reasons this separation makes me incredibly nervous: the staff at the group home need a lot more training than they get, and I sometimes seem to be the only one providing it.  Caleb can’t use a phone and won’t pay attention to me on Skype, so there’s no contact with him if I don’t go visit.  I often arrive at his house to find that no one has made him shave in a week, and that his laundry is mixed with his roommate’s and the clothes he’s wearing do not fit. He has medical issues, and I’m not sure staff understands the right things to say to doctors when they take him to appointments.  I’m not sure he will be cared for adequately if I am not intimately involved.

It’s a fuzzy line we walk. I hover somewhere between over-involving myself to the point of abandoning all hope of either of us being an independent adult, and neglecting to advocate for this vulnerable person who I love. How do you avoid codependence with a person whose needs are nearly infantile?  How do you stay mentally healthy when you spend decades making sure someone else’s basic needs are met, regardless of whether yours are?  How do we grow up, Caleb and I, into an adult relationship?

Caleb recently moved into a new group home. Every Sunday I visit, help him shower and shave, and separate his laundry.  I take him to lunch, to a movie, and shopping for his favorite snacks.  I tell myself that this will change soon.  That someday, he will be independent of me, even if he’s not independent of help.  He has to be. I am mortal and very likely to die before he does.  That’s not the only reason to differentiate, but it looms large for parents of very disabled people.  It’s not healthy for them or us to be completely enmeshed forever.  While shaving my adult son’s face and brushing his teeth last weekend, I thought about how we’re doing with this growing up thing.  I guess it’s still a work in progress.

For years I have worked tirelessly to give my voice to autism, both through training providers about family-centered care and training parents to become advocates for themselves and their children.  I have always tried to capture my son Josh’s story accurately, and have struggled with feeling authentic.  Do I share my story or his? 

When Josh became a teenager he no longer wanted me to share his story, so I worked at refining mine. When I was unable to do that, I stepped away from speaking publically about autism. 

Our journey has been quite an adventure!  Many ups and downs and everything in between.

In January Josh decided to make a video about his struggles with autism.  He presented his story to the entire student body at a Martin Luther King assembly at his high school, Nathan Hale.  His voice speaks volumes more than I ever could. 

Thank you, Josh.  I’m so proud of you!   Keep talking…your voice matters!             

Ten years ago, as a new employee in the department of Psychiatry and Behavioral Medicine, I was asked by a colleague to present with her to a group of trainees.

She was to cover diagnostic evaluations and I was tasked with discussing the impact of autism on families. How on earth would I manage to accurately capture the daily challenges that often are not observed in brief clinic visits?

My hope was to help them to “get it” meaning to see just how difficult it was.Short of suggesting we hold the session in my home for a first-hand look, I decided to make a video I called, “A Day in the Life with Autism” 24 minutes representing 24 hours in our unconventional life. It was well-received and since then I have been asked to share it with many different providers and students at Seattle Children’s and the University of Washington.

So much has changed in the past decade that it felt time for an update. This time though, I wanted to capture the bigger picture of our life and the lessons learned not only for providers but for parents who walk this path too.

I’m so confused.

As the parent of someone with autism, being confused is not new to me. Autism is confounding for the best and brightest among us. Just ask the top researchers and providers in the field. And with few solid answers, questions abound.

Old questions persist about what causes autism and what the best-fitting treatment is for each child. It seems we’ve moved past some of the early controversy about what causes autism and have separated the “wheat from the chaff” when it comes to evidence-based treatment. With advances in genetics, we’re getting closer to being able to target treatment to a child’s unique profile.

With broadening of diagnostic criteria to include those “on the milder end of the spectrum” came new questions about whether autism is a disability or a personality difference. Some self-advocates declared themselves “autistics” and turned people-first language upside down while others voiced that their Read full post »

This month’s Autism 200 Series lecture “Autism 211: “If I Had Known Then What I Know Now” – A Panel of Parents of Older Children and Young Adults with ASD” will be held next Thursday, November 19th at Seattle Children’s Hospital in Wright Auditorium from 7 to 8:30 p.m. and led by Katrina Davis, family advocate, at Seattle Children’s Autism Center.

Join Seattle Children’s Autism Center’s family advocate, Katrina Davis, and a panel of veteran parents who will offer an intimate and personal look into their journey raising a child with autism. Parents will share their perspectives, experiences, challenges and joys. What helped? What did not help? What would you do differently? What advice do you have for new parents? Audience participation will be encouraged.

There is no need to register in advance to attend. These classes are designed for parents, teachers and Read full post »