When You Are the Parent of a Child Living a Unique Life

An interview with Karen Kain, CEO of Lorrin’s World, by Sarah Galbraith Laucks, Abilities Expo Education & Events Director

BuzzIn 1994 Karen Kain gave birth to a healthy baby girl named Lorrin. Two months later at her regular check-up, Lorrin received her first and only DPT (diphtheria pertussis tetanus) vaccination. Lorrin had a severe reaction to the vaccine, leaving her vaccine-injured—a medically fragile child with significant disabilities. She could not walk, talk or hear, and had very limited vision. Karen and Lorrin’s lives changed in an instant. As Karen describes it, she joined a club that no parent wants to be a part of.

Lorrin passed away in late 2009, a few months shy of her 16th birthday. One of the things Karen talked about was her experience being Lorrin’s parent. Karen discussed how once you’ve been down this path, the path of parenting a child with disabilities, then you understand everything. But when you are going through it, everything is brand new. She remembers all too well how overwhelmed she was in the early years. Finding a therapist. Being in the hospital for days on end. Multiple surgeries. Having a medically fragile child living at home.

Today, as CEO of Lorrin’s World, Karen works to improve the support systems for parents. Below she shares a few of the tips that helped her and changed her life. She hopes that other parents will gain ideas for their own unique life experiences.

The most important thing is connecting.
With other parents, with other children, and with the entire disability community. “As a parent, I felt so alone, so isolated from my family and my partner because I didn’t connect with anyone.” Coming to Abilities Expo each year helped Karen and Lorrin to build connections that improved every area of their lives.

Buzz“It’s very hard to get out of the house when you’re a parent of a child with disabilities.” Karen stresses this point. “You get rejected, stared at, something embarrassing may happen. You are the white elephant in the room. People get up and leave, they change seats at the movie theater.”

Many parents don’t have the opportunity to discuss these experiences, but it’s a very real part of every day for them. Even so, Karen encourages parents to get out of the house in spite of how other people may react. And coming to an event like Abilities Expo can change everything for you. Karen explains, “It’s a place where you can meet one person, then another, then another. You can have fun. You can meet other people with disabilities doing the things that all people want to do. It’s inspiring.”

Set goals.
Maybe it’s just one goal; it doesn’t need to be a long list. Hold family meetings and learn what’s important to each member of the family. Your list may include things like feeding and toileting. Or it could be a computer. Or building friendships. Abide by the old adage—write your goals down to make sure they happen.

Have regular experiences.
“It sure helps you feel like you’re having a regular life.” For Karen and Lorrin, one of their regular experiences was camping, medical equipment and all. Karen encourages parents to give themselves permission to take their child’s medical situation and find a way to bridge the gap to a regular experience. Another regular experience for Lorrin was school recess. What’s recess for? It’s for fun and for socializing. It’s not a time for therapy. Early on Lorrin was taken outside in her wheelchair and all she could do was sit by herself. No one would talk to her. Karen pushed the aides and teachers to move Lorrin to her bike (a custom bike designed for Lorrin). Immediately another girl came up to Lorrin, placed a ball on the bike and said, “I think she wants to play ball.” It was the beginning of friends. A regular experience.

Learn how to talk to your doctor.
And the therapists, and any other medical person on your support team. Remember that they work for you and building a team with them is one of the best things you can do for you and your child. Karen’s tips:

  • Write EVERYTHING down. Document as much as possible, everything from what your child eats to the details of a seizure. At an appointment, you’ll probably be tired and having these notes will help you remember the important details.
  • Photos and videos are also great. A doctor can look at a video and immediately understand what’s happening.
  • Be on time.
  • Bring an objective person with you to appointments. They may hear things that you don’t because they’re not as emotionally tied to your child as you are.
  • Ask questions. Write them down in advance. And if you don’t understand something, please ask them to explain it to you.
  • Keep a detailed list of medications and keep a written medical history with you. Provide these to everyone working with you.

BuzzBe age appropriate with your child.
This is one of Karen’s real pet peeves! She feels that we must respect our children, their souls, and where they are in their lives. A 13-year-old with a disability is still a 13-year-old. With Lorrin, Karen strived to be age appropriate with everything—clothes, makeup, music, movies, reading. She talked with Lorrin normally. Lorrin’s room was a teenager’s room—complete with Twilight movie posters on the wall—even though it was the room of a medically fragile child.

Karen stresses children will shut down when we talk over top of them, when they are not included. As she says, “the kids [with disabilities] are okay! It’s the people around them. Lorrin was really happy. She was proud of herself, proud of her body. She loved growing up and she loved being a girl.” It was so important to let Lorrin experience life as much as any other child would.

Take care of your spirit.
Take care of you first and then your family. You are the glue that holds everything together, and finding ways to keep yourself strong will help your child. Karen talks about how parents get so isolated. She remembers how angry she was, at Lorrin, at her life. No one has a child because they want to be a parent of a disabled child. It’s not a club you want to join. It is devastating at the beginning. But your child has great things to share and do. You can have fun and learn through this experience.

Karen says, “I encourage parents to find the coping skills that help. Meditation was critical to my survival. A very simple start is to learn how to use breath work to balance and ground yourself. Take a deep breath to a count of seven, holding it for a count of seven and exhaling to a count of seven. This is a basic tip and it helps.”

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