Rob W.

In 1973, Rob W. was the first infant diagnosed with FAS in the United States. Having a diagnosis at birth has been extremely helpful to both Rob and his parents. Although there were no conferences, books or videos on FAS in 1973, having the diagnosis helped his parents think and parent differently.

As Rob grew older he wanted to become part of the solution to the FASD puzzle. He has been involved in the areas of prevention as well as intervention. His bumper stickers patterned after bus signs in Seattle have found their way to Cape Town, South Africa, and Paris, France as well as all 50 states. He was also featured on the video “Students Like Me.” He was on a national committee, NAG for Justice, to help individuals with disabilities understand their rights in the criminal justice system, and he does trainings for peers, based on their project, “The Right Rules.”

He served on the planning committee of the first ever conference by and for individuals with an FASD. He has been a speaker at two FASD Center for Excellence, Building State Systems conferences as well as events in Alaska, Florida, Kentucky, Michigan, and Washington D.C.

He serves on the steering committee for the FASD Center for Excellence, and is the first consumer to be on a national committee for FASD. In 2010, he will also be presenting at the FASD conference in April.

Rob recently talked with NOFAS Program Manager Brianna Montgomery.

Brianna Montgomery: Welcome to you, Rob. Thank you for participating as the very first guest in the new NOFAS Interview series. Let’s get started. First question, how does FASD affect your life?

Rob W.: It has affected my life in several ways. I explain it this way to my friends, my body is 37 years old, but my brain is 20 years old. My cognitive age is a lot younger than my biological age. People have a hard time telling that I have FAS; they don’t believe I have FAS until I start stumbling when adding things up or remembering things. When I am given multiple tasks and verbal directions, it shows.

BM: What do you believe needs to be done to address FASD in the community and among experts in the field?

RW: I would like to have more conferences. I want the experts to work with the school and legal systems to educate them about FAS. The school systems are the ones that need it the most. I would also like employers to be educated so that they can feel comfortable hiring people with a disability and understand that things will go wrong and not to just fire them because something goes wrong, but work with the person.

BM: I understand that you are currently employed with the ARC. How do you like that job?

RW: Yes, I am. It’s great.

BM: As an individual with FASD, how important is it to you to educate others about the disorder? What have you done to educate your peers about FASD?

RW: It is very important to educate, but you have to educate the right people. They are people who are willing to learn about the disability and those who are willing to take it seriously and teach others. I tell others how my disability affects me and what supports I need in place so that I can succeed.

BM: I hear that you do a lot of speaking engagements.

RW: Yes, I have. I have also worked with Georgiana Wilton [of the Family Empowerment Network (FEN) of Wisconsin] on coming up with a brochure for employers regarding FAS. I also have bumper stickers and a video called “Students Like Me.”

BM: Next question, what skills have you adapted to overcome the challenges of having FASD that other individuals living with FASD may benefit from?

RW: I work with constant support from peers, but I have also built a group of support people, like NOFAS and people that know about FAS that can help me with getting resources that I need for school and work. If I want to live on my own, the ARC will help me pay my bills and will help me look for an apartment of my own.

BM: That’s wonderful. Those are great things for others with FASD to know. I personally receive many calls from people saying “I don’t know what to do, I am in a situation where I can’t hold down a job and I need some help.” Your advice is great.

RW: People need to know that there are services available. I suggest vocational rehabilitation. Classes on life skills would be also be helpful for people with FAS. There is a program called “Do 2 Learn” (www.dotolearn.com) that educates teachers how to design the classroom for kids with learning disabilities to help them function better.

BM: Next question, what are some of your personal interests?

RW: I like computer games, crafts, gardening, and hanging out with friends. I also like speaking at conferences. I really like being a mentor to other people that have FAS and teaching them that I have FAS too and I have some of the same problems that they do. I am also a part of a Monarch Watch Program. I tag and release monarch butterflies every year before they fly South to California and Mexico.

BM: What does that program involve?

RW: I tag the monarchs with an identification sticker that has my name and home address on it and a special computer code; so that when someone finds them they can see where the butterfly came from.

BM: What an amazing program. Do you keep the butterflies at a sanctuary or at your house?

RW: I find the caterpillars in the plants in my garden and then I bring them in the house and raise them inside. I built a cage for them that I have in my room. They have a better success rate if I bring them in the house because there are no predators inside my house to get the caterpillars.

BM: How did you get involved in this program?

RW: I learned about it when I worked at the Frederik Meijer Gardens in Grand Rapids, Michigan.

BM: One last question, what do you want others to know about FASD?

RW: I want others to know that FAS is completely preventable and that there are other people that have FAS, so they are not alone. I am trying to start a support group for adults with FAS where they can get together, talk about FAS, and work with the [FASD Center for Excellence] steering committee. I would like to have more conferences for kids with FASD, too.

BM: Thank you so much for talking with me. Your interview was great and I learned a lot about you. I know this will be very helpful to other individuals with FASD.

RW: Thank you, I am glad that I could help others with FAS.