Dyan Campbell

Interview by Mary-Minn Sirag

Photos by Dyan Campbell

Published in MOM MAGAZINE

Dyan is a single mom of Riley, a 32-year-old man with autism.

Dyan works as a case manager for Lane Developmental Disabilities Services with high-school transition students. She grew up in Salt Lake City. She and her second husband moved to Oregon in 1993 to get better services for Riley.

 

Hobbies

Hanging out with Riley: going to movies, going for bike rides and walks, going out for breakfast, having a BBQ.

I’m on the board of KindTree-Autism Rocks, a local non-profit. (www.kindtree.org) We market art by people with autism. Every year, we put on a summer family retreat for people with autism and their families. We sponsor a support group for adults with autism and other fun activities for people on the spectrum. I’m in charge of crafts at the autism camp.

I love gardening, cooking, landscaping, interior decorating, creating jewelry and sculpture of many media, fine wines, camping, SCUBA diving, snorkeling, traveling.

Vacations

Tropical paradise, here I come! I’ve been to the South Pacific, Belize, Mexico, Hawaii, Canada, and all over the U.S.

Recipes

I start out with fresh ingredients, especially vegetables, and create as I go along. I never cook the same thing twice.

When did you discover that Riley has autism? When he was 4, I knew he had autism. In nursing school, I read a little about it. As a baby, he had poor sucking reflexes. His developmental milestones were delayed. He was super-sensitive to noises, fabrics.

I took him to a teaching hospital where they told me that he didn’t have autism because he was affectionate and had good eye contact. He wasn’t formally diagnosed until he was 20.

What is Riley like? He’s a movie fanatic. He studies up on them. He gets on a kick of different movie genres--action movies, comedies. (He finds dramas boring). He watches a movie until he’s memorized the lines. He does the same with music.

He started making videos with one of his care providers. His first movie, The Riley Movie, is of him doing things he loves. He and his care providers, with soft puppets that he made, act his second movie, Beetlejuice. Blue Suede Shoes is a tribute to my late brother Randy, who had Down’s Syndrome and loved Elvis.

Riley goes for long walks and bike rides all around town. He loves poring over photo albums of his friends and family.

He writes a blog, www.rygyzcool@livejournal.com.

How did you raise Riley? I married Riley’s biological father when I was 20. I was going to nursing school when I had Riley. My husband left when we figured out that Riley had autism.

I put Riley into a private school. I was working as a nurse. (Riley did a lot of day care.) When Riley was in 5^th grade, they told me they couldn’t serve him anymore because he wanted to paint purple cows, which “don’t exist”. So he went to public school. One of his 6^th grade teachers knew about autism and told me that Oregon had excellent services for kids and adults with autism.

When Riley was 17, my second husband, Riley and I moved to Oregon in 1993. We lived too remote to take full advantage of available services. We moved to Eugene when he was 20 so that he could get into the Community Living Program. In 1996, I took over a foster home with 4 other guys with DDs. He learned a lot. These guys are still his friends.

When Riley was 24, he got extra support services and decided to try living in his own apartment. He lives independently by himself. A provider helps him 10 hours a week with independent living skills and with projects, such as making movies. Another supports him on his volunteer recycling job.

I help him with grocery shopping, cooking, budgeting. I’m his master problem-solver. I create structures and help keep his life on track.

What are your most difficult challenges as a parent of a kid with autism? Life is fluid. With his autism, he wants it predictable. Sometimes what has always worked for him stops working, and I have to come up with a whole other structure.

He has the same goals as anybody but doesn’t have all the skills. He wants relationships but doesn’t know how to maintain them outside the structured settings. There’s this girl he likes in his social group but he can’t get it together to ask her for her phone number. When he’s around her, there are too many real-time variables to sort through.

How do I put supports in place, so that when I leave this world, he can continue to be as independent as possible?

What is your profession? Mmm… I have worked as a flight attendant, a registered nurse. I have owned and managed a hair salon, a coffee shop, a deli, two food carts. I have worked as a Personal Agent at Full Access Brokerage. I am now a case manager for Lane Developmental Disability Services. I help families to begin visioning their future. Almost all the time, they just assume that they’re going to be caregivers of their adult children forever!

As a case manager, I am going to make sure no other parent has to go through what I did to find resources for my kid!

Do you have any valuable parenting advice for other moms? Believe in your kids’ abilities, especially when they don’t. Never rob them of their independence by doing everything for them. Set the bar high but give them a chance to make mistakes. On the other hand, help provide support so that they can make mistakes without it being a complete disaster.

What has Riley taught you? He is so capable. He has taught me to be flexible and to think outside the box. Just when I think I’ve got it, he empties the box and says, “Let’s start all over again.”