LASCI Family: Bert Burns’ Advice for Parents of Disabled Children

LASCI founder Bert Burns is a trained clinician, disability advocate and proud father of twins. As a C6-7 quadriplegic,  Bert often shares his personal story with audiences at LASCI events to help other individuals with their journey in life after spinal cord injury. Below, Bert offers advice to parents who want the best for their children who have disabilities.

Bert's children, Will and Emma, don't mind one bit that their dad uses a wheelchair.

Bert’s children, Will and Emma, don’t mind one bit that their dad uses a wheelchair.

Q: Bert, what makes you qualified to give advice on this subject?

I’m not a professional counselor, so please don’t view the information below as medical advice or counseling advice.  This is simply my own perspective on child-raising as a father who has a disability, as a family member who was raised with a sibling who had a disability and also as a recreation therapist who has worked with hundreds of people who use wheelchairs.

Few people know that I grew up with a younger brother who was born deaf and brain damaged.  Long before my own accident, I was very comfortable around people who had disabilities.  Growing up, I watched my parents center their attention on my brother Brad due to his disability.  We spent our life always trying to “fix” Brad and life revolved around him. It wasn’t fair for the rest of the children in our family. Even though my parents loved all of us, their attention was always fixated on Brad.

Being in a wheelchair for 32 years myself, I’ve seen plenty of younger kids have the same thing happen to them when they have a sibling who is disabled.  Their parents’ lives revolve around the other child.  So to parents, I would say don’t just focus on your child with a disability. Have a fair balance between all of your children in terms of the time and attention that you share.

Parents never want anything to happen to their children, especially to their child who has struggled with a disability.

Parents never want anything to happen to their children, especially to their child who has struggled with a disability.

Q: As a clinician working in a rehab, what mistakes do you see parents making when it comes to caring for their children who use wheelchairs?

Parents make decisions sometimes out of fear. They are simply petrified of letting anything else happen to their child who has already been through so much.  That causes the parent to not let go of them soon enough, meaning not allowing their disabled child to try things that they would allow their able-bodied child to do.

For example, a few years ago I was visiting with families at a rehabilitation facility and I met some parents who had an 18-year-old daughter who had a C7 spinal cord injury.  The mother refused to allow her daughter to learn how to drive using hand controls and other devices even though the young lady was perfectly capable of handling a vehicle in a safe manner.  Her daughter felt trapped and resentful as a young adult who couldn’t go to the places that her friends were going.  So while a co-worker talked with her parents, I quietly took the daughter out to the parking lot and showed her how to transfer into my car and how hand controls worked.

Before Mom even realized it, the young lady was easily moving back and forth between her wheelchair and the driver’s seat, and her confidence was starting to grow.  Eventually, the parents came outside and her mother was shocked to see that her daughter was not only able to get herself into a car, but she could easily put her wheelchair in the car by herself too. It really opened that mother’s eyes as to the limitations she was causing for her daughter.

Encourage your child to explore sports that are adapted for their ability level!

Encourage your child to explore sports that are adapted for their ability level!

Just because your child has a disability doesn’t mean they can’t explore or try new things. Take a deep breath and let your child be a child and do things that his friends are trying as long as those things are healthy and age-appropriate.

Q: Why do you think parents become so overprotective with children who have disabilities?

Obviously, parents love their children very much, and having a child who struggles sometimes can be emotionally challenging. Sometimes parents feel guilty about the child’s disability even if it’s not their fault. Parents naturally want to fix things, and make things perfect for their child.  So being overprotective is overcompensating in a way. Parents do it out of love but they don’t realize it’s hurting their child’s development overall.

Q: How does being overprotective hurt children in the long run?

When parents overdo it, their child fails to develop a sense of independence and the appropriate maturity level for their age. You see the same behavior in able-bodied kids who have “helicopter” moms and dads. If a parent is overprotective, it hurts their child later in life.  You think you’re showing your love, but in the long run, it hurts them more than it helps.

LASCI founder Bert Burns travels the country speaking with friends who use wheelchairs during LASCI's motivational programs. He often shares examples from his personal life during those presentations.

LASCI founder Bert Burns travels the country speaking with friends who use wheelchairs during LASCI’s motivational programs. He often shares examples from his personal life during those presentations.

In my personal case, after I was paralyzed in my early 20s by a drunk driver, I had a hard time getting back into the swing of things after I came home from rehab.  My dad told me that in the mornings when I first came home from the hospital, it would take me 30 minutes to get dressed after getting out of the shower. He wanted so badly to stop what he was doing and help me, but he knew I had to do it myself.

My father would literally go into the living room of our house and cry where I couldn’t hear him. It was all he could do to let me take care of getting dressed.  I never knew he struggled with that until years later, but I’m so thankful he let me do it myself. It’s the only way I got to where I am today.  I was 20 years old at the time, but at that moment, I was a child as far as quad life goes.

Q: What advice would you give young adults in talking to their parents who are being overprotective?

Listen, it’s hard to break away from your parents when they just want to love and protect you. But look at what your friends are doing and where they are going with their lives. If they are visiting colleges out of state, you can too. You need to be doing activities that friends your same age are doing.  So when you talk with your parents, start by saying something like, “I know that you love me and this is why you’re doing this, but it’s not helping me in the long run.”

Be patient, be honest. If you want to be treated like a grown-up, talk to them like a grown-up about it — don’t throw a fit.

Q: What else would you encourage parents and children with disabilities to try?

Communication is key.  Get involved. Your able-bodied child may play football. Your disabled child may be able to do track events like wheelchair racing.  In that case, spend one weekend at one child’s football game.  The next weekend, everyone should go to the 5K where your other child is racing.

When Bert goes on vacation with his family, they seek out events that everyone can enjoy and participate in!

When Bert goes on vacation with his family, they seek out events that everyone can enjoy and participate in!

Support and encourage all of your children to find a sport that works for them.  Go skiing together, letting one use regular skis and the other using adaptive skis. Find ways to do group activities together.  You can do things as a family and you should.

As a parent, you need to research what’s out there and get them all involved!  I believe sports are so important because it allows opportunities for confidence-building, making friends with similar interests, it shows them what they can do, etc.

And, there are long-lasting health benefits when you encourage your disabled child to participate in sports. For me, my lungs are half-paralyzed, but the better shape I’m in, the easier things are for me so the rest of my body won’t be as compromised.

Stay tuned for the next article in this series:  Advice for Disabled Parents Who Are Raising Children

About LASCI’s Motivational Programs

lascilogoThrough LASCI, Bert Burns devotes considerable time as a motivational speaker for children with disabilities, rehabilitation programs, medical education seminars and other community events. Bert explains his reason for reaching out is, “I hope to convince patients in wheelchairs that they can still do all the things they want to do and more. They will just have to do them differently.”  Bert is a C6-7 quadriplegic himself. He was paralyzed in his 20s when a drunk driver hit his vehicle.

Learn more about LASCI here.   If you’d like to invite Bert Burns to speak at your upcoming event, please contact us.

 

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2 Responses to LASCI Family: Bert Burns’ Advice for Parents of Disabled Children

  1. Tracey says:

    We have a 13 year old boy who is in a wheelchair from birth injury. (level T-1 SCI) We also have a 15 year old able bodied son and to be honest, we are probably way more overprotective of him because of already having one child with a disability. Our biggest fear is “what if something happens to him too”!!!

  2. Sallie Tuscai says:

    This is a great article. As a parent of a 20 year old C6-C7 quadriplegic daughter, I can say that I am guilty of a lot of this. She was 17 when she was in a car accident 1,000 miles away from home and I definitely do worry about her getting hurt again. I have been trying desperately to not help when I shouldn’t but boy is it hard! I unconsciously help and don’t always realize that I am. I am definitely working on allowing her to be more independent. Thanks for the great advice!!

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