Interview by Shelley Bowen, Director of Family Services & Advocacy
November 4, 2019

Meet Devin

Devin's three favorite things

1. All things hockey. My favorite team is the Red Wings.  I don’t go to the games often, but I watch the games on the television when it’s on.  Dylan Larkin is my favorite player.  He plays center. 
2. All zoos I also really like zoos.  My favorite part of the zoo is the big cat section.  I love big cats.  The Lincoln Park Zoo in Chicago has a whole big cat house.  I really like that.  My favorite zoo is in Detroit.  I also liked the zoo in St. Louis.  They have a cheetah in St. Louis.  The Maryland Zoo also has a cheetah. I’d like to work with animals when I grow up.  I really like the big cats.  I want to work closely with them.  I would like to own one, but mom would have to get a license and all that. Under no circumstances do I want to work with birds.  I don’t like them.  I don’t like birds of any size.  I’m not a great fan of butterflies.  Nope, not good with butterflies either.
3. All things Halloween

Besides big cats what else might you want to do for a job?

I took a test that said I would be good in taxidermy.  The other areas the test said I would be good in was acting, social work and fashion design.  They had some cool taxidermy at Wayne State.

What other hobbies do you have?

I like dot-to-dot.  I enjoy keeping hockey stats. When friends come over, I enjoy playing street hockey. I like bowling.

Did you enjoy visiting Dr. Greenberg's lab at Wayne State?

Yes, that was great. We saw the fruit flies.  The TAZ mutants flew slower but when they were given vitamin B, they flew faster.  The mouse bit me and tried to bite everyone in our group.

Devin's mom perspective about the mouse incident.

My theory is this.  It’s a little mouse with Barth syndrome and it was just tired.  It had already been stimulated by the first group and by the time we got to it the mouse was just tired and a little moody.

Do you ever just get really tired?

Yes

What do you feel like when you get really tired?

My legs hurt, they feel broken, like they just won’t work.  It’s hard to focus.

Could you walk through an entire zoo?

It depends.  I couldn’t walk through the Detroit zoo.  Some days I can do more than others.

Devin's mom's perspective about his fatigue.

He had a busy weekend this past weekend.  When he got home from school yesterday, I could tell by looking at him that he looked hit (by fatigue).  He didn’t look sick.  He looked like he had no energy left. 

So, today when he said I don’t want to go to school, I did not argue.  I’ve learned that if we push it on a bad day like today, I’m just going to get a call from the school about behavior.  It’s just not worth it.  He has good days and he has bad days.  When he has a bad day, we just have to face it rather than trying to fight it.