When a Parent Has ALS

by Amy Madsen on Sat, 2008-03-01 14:34

Tips for helping children cope

Skager Family
Gae and Lauren Skager with their golden retriever puppy, Dakota, encourage people across the nation to organize ALS support groups for children and youth.

"ALS affects my life, too!” says 13-year-old Lauren Skager of Minneapolis.

Lauren’s mom, Gae, has ALS. Lauren sometimes translates for her, but more and more Gae uses her DynaVox communication device to speak. Lauren worries people will become impatient waiting for her mom to type out what she wants to say.

“I wish they could understand her like me,” Lauren says, noting that she feels “relieved” when her mom finishes typing her message and “an embarrassing incident is averted.”

Lauren’s worry is but a small example of the myriad ways ALS affects not only the individual but the entire family. To help children live full lives despite ALS worries, check out the following tips from the Skagers and other families touched by the disease.

Participate in a youth support group

Don’t overlook one-on-one or family counseling, but consider looking for a child/youth support group as well.

Gae, who worked as a registered nurse prior to receiving her diagnosis, says children can gain significant benefit and support from talking with peers.

“Because this disease is so rare and devastating in its progression, children often feel isolated and alone in their emotional struggles,” she notes.

breanna justin jessica
Justin Alderman with sisters Jessica, left, and Breanna, says “it’s OK to be a little worried” about a parent with ALS. “But don’t let it control you.”

Peers who also have a parent living with ALS (or other chronic conditions like cancer or multiple sclerosis) can provide insight to each other in coping with family changes.

Lauren participates in MDA’s Support Group for Children/Youth of ALS Patients in Minneapolis. Facilitated by a pediatric neurologist and attended by approximately nine children ages 10 to 17, the group meets bimonthly for 90 minutes.

Lauren says she enjoys going to the meetings and finds the sessions “interesting and very informational. It helps to know that other kids are coping with the same situation.”

Find support online

Support doesn’t have to be face-to-face; you can find it from the comfort of your living room with a click of the mouse.

As a teenager, Sarah Butler (now 21) of Tucson, Ariz., frequented Yahoo’s Living with ALS group. There she posted questions and stories, vented frustrations and made supportive friendships that helped her deal with her father’s ALS.

MDA offers several ALS-specific chats each week; go to www.mda.org/chat/calendar.html to see the schedule and sign up. The ALS Chat by ALS Forums can be found at www.alsforums.com.

Stay busy; have fun

Pat and Sean Dwyer
Sean Dwyer, left, with father, Pat, and Brenna Dwyer, below, find numerous ways to enjoy the present and focus on the positive things in their lives.
Brenna Dwyer

School activities, hobbies, pets and part-time jobs all serve as outlets and touchstones for kids and teens.

Brenna Dwyer, 18, and Sean Dwyer, 16, of Kenmore, Wash., say their activities have helped them deal with their father Pat’s ALS.

Brenna, a high-school senior, particularly enjoys horseback riding. She says her horse, Bailey, always has been her “shrink” and that when she rides she’s unable to think of anything else.

“Whenever my mind does wander off, she’s smart and sensitive enough to let me know that she’s the one I need to be paying attention to,” Brenna says.

Sean, a sophomore, plays drums in a band, plays basketball, skis and makes movies of his friends skiing. He also enjoys spending time with his dad rebuilding a vintage Triumph TR-6 convertible.

“What I do to not worry as much is to just live life in the present and take advantage of every moment that I have with my dad,” Sean says. “I just try to have so much fun and to be so content that I just forget about all the bad things.”

Learn and teach about ALS

Knowledge often inspires a sense of empowerment, and children who learn about ALS find themselves in the unique position of being able to educate others about the disease, both by sharing what they’ve learned and by demonstrating it’s nothing to be embarrassed about.

Breanna Alderman, 17, of South Jordan, Utah, won a trophy in an essay contest when she was in the sixth grade, after writing an essay about her father Alan’s courage in facing ALS.

She says at first, however, she was ashamed of ALS and what it was doing to her dad.

“After awhile I realized that there was nothing we could do about it, so I might as well learn from it,” Breanna says. “So, I try and teach other people about the disability and other [disabilities] like it.”

When her friends come over, Breanna tells them it’s OK to talk to her dad and explains to them about the disease.

Alan says Breanna and her younger brother and sister, Justin, 15, and Jessica, 11, are quick to stick up for him and for others with disabilities. Most of all, though, he says they show others that ALS is nothing to be embarrassed or ashamed about by continuing to “excel and go on with their lives.”

Communicate and engage

Open all lines of communication and stay involved.

Alan Alderman and his wife, Shaun, find support in their extended family and church group, and Alan notes, “When I was first diagnosed we also met with all of our children’s teachers, coaches, dance and music instructors, and others that associated with our children to make them aware of the situation and to ask for their help in watching out for our kids.”

The Aldermans also have family meetings to discuss Alan’s condition, where he says they openly discuss what’s going to happen and “encourage their questions.”

Alan advises parents, “Don’t let ALS be the reason for doing, or not doing, things.

“Continue to be engaged and involved in their lives as much and as long as you can. And love them!

Amy Madsen
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