Inspiring parents in our community: Jenni and Turner

Phone: (970) 984-3333

Inspiring parents in our community: Jenni and Turner

Welcome to our newest installment of conversations with inspiring caregivers in the valley! This week is something special – we got to sit down with friends Jenni and Turner about parenting, working, and creating community.

Thanks for meeting today! First off, how would you introduce yourself?

Jenni: Well, my name is Jenni Fautsko, I have been a resident of the Roaring Fork Valley since the 90s. I am the mom of the amazing Turner. I am an artist and photographer. I am also an advocate for the ARC of the Central Mountains.

And we’re here today with your son, Turner, mom, Jeanie, and husband, Matt. I have known about Turner for awhile, and about what amazing parents you are. What makes Turner so special?

Jenni: Turner was diagnosed in 2017 with KAND, or KIF1A associated neurologic disorder. But that came after five years of pushing and searching for a diagnosis.

Jeanie: Jenni is such an amazing, extreme advocate. She is always researching and looking for answers.

Jenni: At 10 months we started to notice developmental challenges. We were referred to specialists, eventually ending up at Children’s Hospital. No one told us but on his chart one day I saw that someone had diagnosed him with Cerebral Palsy — I knew that wasn’t right. The neurologist finally pushed to get genetic testing which is what finally got him a diagnosis.

That sounds like such a difficult struggle. Having to push back against the healthcare system to find the services you need.

Jenni: As of now there are 350 known cases of KAND in the world. When Turner was first diagnosed I searched and found an amazing nonprofit (kif1a.org/kand/) and there were less than 30 children with that diagnosis at the time.

Has that website provided you with a support network?

Jenni: Yes and no. I would love a support group in the valley for parents of children with special needs. It just doesn’t exist. ARC has some services, including a spanish speaking support group. But parenting a special needs child has its unique challenges. My standards of friends and support groups are very high since my time is limited. Turner is such a blessing but it is very hard to create space for other things.

Have you found a balance between work and parenting? How do you make that space for yourself?

Jenni: Haha, no. Jeanie helps so much. I have cut back a lot on photography because I want to spend more time with Turner. But we really don’t have respite besides grandma and dad.

Jeanie: Turner has his own unique needs.

Jenni: Right, and we would have to find help and train them. There is no service for that here in the valley. There is a lot to learn and know about Turner. We can’t just have anyone help us. But I definitely take time for myself to be creative to fill my cup.

You seem to have a very calm approach, who have you gotten your parenting advice from?

Jenni: Mostly modeling after my mom

Jeanie: And modeling after my mom. Try to stay calm. Be the parent your child needs you to be.

Matt: Turner chose us.

Jenni: That’s right, Turner chose us. He makes our life so full.

Jeanie: We have learned to just love love love.

Jenni: And have fun! Be silly.

And has parenting taught you anything?

Jenni: I can do more than I thought possible. I am much stronger than I think.

What should we know about you, Turner?

Jenni: Turner does Windwalkers (an equine therapy service). He loves horses! But I think more than anything Turner loves music – especially Luke Bryan!

And how can we be supportive of you, and other families with children with special needs?

Jenni: It’s hard to parent a child with special needs. If you want to reach out don’t ask what we need – just do it. Also, validation is huge. It is challenging and it is nice to be seen, to be understood for those challenges. Ask questions. Get to know Turner. Reach out for playdates!

Jeannie: We want people to talk to him. Kids, too. Don’t just stare.

Jenni: Talk and engage Turner just like you would anyone else.

Such an important teaching opportunity for us to learn and grow.

Jenni: I just want people to know that Turner made me into the person I’m supposed to be.

Jeanie: Turner’s mission is to teach love, compassion, and joy.

Thank you Jenni and Jeanie and Turner! What an amazing family and such a joy to get to know. We can take so many messages away from this conversation. First and foremost – get to know Turner and his family! Reach out at KIF1A.org. As Turner’s family writes, “Turner works five times harder than you doing everything that he does. Turner has five therapies a week, he has had eight surgeries, countless tests and procedures and take medication daily. He is a super trooper rockstar.”

Also, find love, compassion, and joy. Be the parent for your child. And find those people in the community to reach out to. Don’t ask – just do.