Inside Gillette Blog


Moving …. Teens ….Forward

Posted On: 04/22/2014

Gillette Lifetime helps teens and young adults who have disabilities—and their families—make the move to adulthood

Jessica Day remembers turning 15 and thinking about what adulthood would bring.

“I had a lot of mixed feelings,” says Day, now a 21-year-old graphic designer. “As a teenager, you feel you’re invincible. But I had to accept that, for the rest of my life, I was going to be dealing with having a disability.”

Becky Nelson, social worker at Gillette Lifetime Specialty Healthcare, says concerns about adulthood are common—both for young people and for their families.

“Caregivers have told me, ‘It’s almost like when we got the diagnosis,’” she recalls. “Approaching adulthood is a second phase of having a disability, and families don’t know anything about it. They wonder, what happens after high school? What about work, living arrangements and relationship challenges?”

Fortunately, transition services at Gillette Children’s Specialty Healthcare and Gillette Lifetime can help.

“Dealing With Where I Was”

During her childhood, Day had multiple surgeries to address issues related to cerebral palsy. “It was all about going through those major procedures,” she remembers. “Then, at 15, it wasn’t about having procedures anymore. It was about dealing with where I was afterward.” 

For every teen, changing from a pediatrician to a provider who sees adults is only one part of growing up. Other concerns involve continuing education or workplace choices, housing situations, legal matters and relationships.

“Transition is a process, not an event,” Nelson explains. “It’s not just handing off your health care to another doctor—it’s a philosophy of preparing for adulthood.”

Gillette’s philosophy includes introducing our patients to the topic of transition when patients turn 14. In adulthood, some patients might move to Gillette Lifetime for continuing specialty care; others might change to providers in their community. A fully accessible clinic located in St. Paul, Gillette Lifetime offers medical care, rehabilitation therapy, adapted equipment and other services tailored to adults with specific disabilities that began in childhood. When appropriate, the staff refers teens and families to community resources for legal, medical and other issues.

“Gillette Lifetime helped me through a lot of obstacles,” Day recalls. “I learned about subsidized housing and got connected to services like Metro Mobility. They have counselors to talk to. And even though I’m not planning on starting a family for a long time, I’ve talked to the doctors about it. It’s nice to know they’re there for you at different stages in life.”

One Thing at a Time

Although Day lives in her own apartment, not everyone can live independently or make life decisions without significant adult support. “That’s when we look at things like guardianship and supported living,” Nelson says. “We encourage independence or interdependence to the highest degree appropriate for someone’s level of ability. It’s a highly individual process.”

When she meets a new patient or family to discuss transition, Nelson about their most pressing concerns. Then she helps people determine what needs immediate attention and what can come later. “The key word I use is ‘we,’” she says. “I see families relax as they start to understand that they’ll have a partner in this journey, medical and otherwise.”

Day recommends Gillette as a place to begin looking toward adulthood. “In the long run,” she says, “they’re going to help you reach the goals you want to in life.”

Preparing for Adulthood: Getting Started

It’s never too early to begin developing a transition plan. Gillette offers these services—and more—for teens and young adults who have disabilities and for their family members:

  • Phone and in-person consultations (to discuss legal, medical and independent living issues)
  • Counseling sessions (to identify strengths and challenges, support decisions, and strengthen coping skills)
  • Evaluations for independent living, computer access, and school or workplace accommodations
  • Psychological and neuropsychological testing
  • Help finding primary and specialty care providers who treat adults

To learn more, email Becky Nelson or call her at 651-638-4706. Or see transition services for teens and adults.

 


CP Stands for Cool Person’s Disease

Posted On: 01/31/2013

Like many students starting high school, Riley Taborda wanted to try something new. His choice this fall ultimately sprang from an old interest—video games.

Video games led him to marching band?

“I was drawn to this style of music because it’s upbeat,” explains Riley, 15. “And the music and coordination of moves were a lot like the music and quadrants in the video games I play.”

Marching band was new for Riley, as was percussion. He began playing cello in fourth grade, then took up trumpet and, most recently, tuba. Trumpet and tuba weren’t feasible in marching band, because Riley uses crutches to walk as a result of cerebral palsy. Instead, he stood in place to play the tam-tam (a type of gong), triangle, tambourine and suspended cymbal.

The marching band practiced five days a week before school and Monday nights. “The biggest challenges for me were getting up for early morning practices, learning how to stop and start the percussion instruments—and learning how not to drop the mallets while I’m playing,” Riley says. He rides a golf cart to his place on the field but stands throughout performances and competitions. “Just like the rest of the band,” he notes. “I want people to treat me the same as anyone else. I tell them that CP doesn’t stand for cerebral palsy. It stands for Cool Person’s Disease.”

Riley says he enjoys having the band create patterns behind him—but his favorite parts of marching band have involved camaraderie as much as music. “Band camp at the beginning of summer is one of the most fun things,” he says. “So are the bus rides to different competitions—and, of course, the people.” The band did well in competition this year, winning the Wildcat Classic in Omaha, Neb., placing third in New Brighton, Minn., and coming in second in Marshall, Minn.

Although the marching band’s season ended in October, Riley continues to play in the school band. He played tuba at a recent concert and will perform trumpet in jazz band and at pep fests. Cello is on hold for now because it conflicted with other classes. “There’s not enough time to do it all,” he says. “But I want to start up on it again next year.”

Outside of music, Riley participates in Boy Scouts and is a member of Special Olympics teams in softball, basketball, and track and field. He goes to physical therapy regularly to help strengthen his balance and endurance. He’s also undergone multiple orthopedic surgeries, muscle-lengthening procedures, and selective dorsal rhizotomy surgery at Gillette.

“All the surgeries have helped me walk better,” he says. “I hope that pretty soon I won’t need to use my crutches anymore.”


We’re Under Construction to Serve You Better

Posted On: 01/29/2013

Gillette has upgrades in store at our St. Paul campus and west metro clinics. Maple Grove and Minnetonka are expanding, making it easier for west-metro patients to get appointments. And we’re renovating parts of our St. Paul campus!

Maple Grove
We’re expanding our clinic to add space for Child and Family Services, casting, splinting and physical therapy. We’ll also enlarge the waiting room.

Minnetonka
We’re opening Minnetonka Therapies in April. That will provide more room for therapy appointments at the new location—and more room for physician services at our existing Minnetonka Clinic! We’ll add exam rooms and complete the waiting room.

St. Paul
We’re closing the west half of our Orthopedics/Surgical Unit to remodel it into private rooms (one patient per room). The remodeled area will open in June. We’re also expanding our Dental space so our providers can see more patients there. You’ll also see new wall coverings, floors and finishing touches in the outpatient corridor.


Family Focus Edition – Upcoming Events

Posted On: 01/29/2013

Muscular Dystrophy Lab Day/Open House
Saturday, Feb. 9, 10 a.m. to 1 p.m.
Paul and Sheila Wellstone Muscular Dystrophy Center

Academic Health Center, Fourth Floor
University of Minnesota

Visit the Wellstone Muscular Dystrophy Center to tour the lab, meet the staff, and get to know the researchers who are working toward a cure for muscle diseases. Kids and families can take part in fun “research experiments.” Enjoy free parking and refreshments. For more information, call 612-626-0822 or email mdcenter@umn.edu.

Muscular Dystrophy Association: Muscle Walk
Saturday, March 9, 7:45 a.m. to 9:30 a.m.
Mall of America
Bloomington, Minn.

This event brings people together in a fundraising effort to defeat muscle disease. To register, visit www.musclewalkmda.org/2013twincities

Epilepsy – Family Education Day
Saturday, April 13, 9:30 a.m. to 2 p.m.
Wilder Center
451 Lexington Parkway North
St. Paul, Minnesota

Gillette and the Epilepsy Foundation of Minnesota invite you to learn more about a child’s stages of development and the effect of those stages on epilepsy. You’ll learn about living well with epilepsy and hear about these topics:

  • Life Stages and Epilepsy: Fostering Self-Efficacy Across the Life Span—Jen Maytum, doctor of nursing practice.
  • The Importance of Sleep in Children With Underlying Neurological Conditions—Laurel Wills, M.D.
  • Helping Children and Families Adjust to Seizures: What Parents Should Know—Katherine Buhrke, Ph.D.
  • Epilepsy Foundation of Minnesota: Resources and Report

This event is free and includes a box lunch. For more information, email Nikki Baker at nbaker@efmn.org. To register, email rsvp@efmn.org.

Light Up the Night Gala
Saturday, May 4, 6 p.m.
Minneapolis Marriott southwest
5801 Opus Parkway
Hopkins, Minn.

Enjoy dinner, silent/live auctions and entertainment—featuring composer and guitarist Billy McLaughlin—while you support people who have epilepsy. Tickets are $100 per person and sponsorships are available. To learn more or order tickets, visit the Epilepsy Foundation of Minnesota website at www.efmn.org

Parent Connect Programs
Twin Cities; Fargo, N.D.
Ongoing

For information about Parent Connect programs in the Twin Cities and Fargo, N.D., or to learn about family events throughout Minnesota, visit the Epilepsy Foundation of Minnesota website at www.efmn.org.

Rett Syndrome Caregiver Education Day
Saturday, April 20

Gillette staff, University of Minnesota researchers, and the Minnesota Rett Syndrome Research Association will hold their sixth annual conference in April. It’s devoted to the latest in supportive therapies, research and education to improve the lives of people affected by Rett syndrome. Watch for details in next month’s Family Focus Edition.

 

 


Having a SEMLS Procedure? Get Help Planning—Now!

Posted On: 01/29/2013

Single-event multilevel surgery (SEMLS) is one of the most complex procedures we perform at Gillette. If your child is having this type of orthopedic surgery, be sure to ask about our preoperative SEMLS classes.

You’ll join other families to tour the hospital and meet with rehabilitation             therapists, child life specialists, social workers and nurses. The session teaches you how to care for a child after SEMLS, with information on:

  • Bathing and toileting
  • Helping your child get in and out of bed and go up and down stairs
  • Transferring your child into and out of a car

If you have questions or want to register, call Jackie Norling, physical therapist, at 651-312-3198. Or register by email: PreopClasses@gillettechildrens.com. Next classes are March 2 and May 4.

Please note: these sessions are only for families of children undergoing SEMLS. To learn about other nonmedical resources for Gillette patients and families, call Child and Family Services at 651-229-3855.