Evaluating Expectations: 4 Tips for Parents with Chronically Ill, Disabled, or Mentally Ill Children
I love extreme action sports. I recently read a story and watched the YouTube videos of a young man named Aaron “Wheelz” Fotheringham. He is the first person to ever do a back flip, a double back flip, and a front flip on a wheelchair. You may be saying, “What? On a Wheel Chair?!”
Aaron Fotheringham was born with Spina Bifida, a developmental congenital disorder the effects the spinal cord and neurological system. The amazing thing about Aaron is that not only did he not let his disorder hold him back; he actually developed something that would be considered a “disability” to most people into a ground breaking, pioneering ability.
Just because a child has a specific illness or impairment does not automatically exempt him from certain achievements or abilities.
Parents joke about bubble wrapping their children to save them from all the world’s dangers. There’s a fair bit of controversy about how far we go to protect our kids. It’s hard to know where the line is between our healthy parental duty to protect and unhealthy over-sheltering. This question of what we should save our kids from and what we expect from them is doubled when we have a child with a chronic illness or disorder.
There is a fair bit of research to support the idea that high expectations and a challenging environment support higher achievement, resiliency, and self efficacy. This is only true when put in a context of healthy, strong relationships that are supportive and encouraging.
It’s important that parents don’t require a child to ride a bike or climb a tree as a measure of his strength and ability; but we must be careful not to label the boy “incapable” before we really understand his strengths and weaknesses. Just because a child has a specific illness or impairment does not automatically exempt him from certain achievements or abilities. Sometimes the very things we see as impairment can be avenues of excellence. The following four items may help parents encourage that excellence.
- Put the child before the disability.
This is a term used a lot by social workers, and in the education world. It suggests that we refer to and recognize the child first, and then the disability. For example, we might say, “He is a boy with autism,” rather than “The autistic boy.” This can seem like a strange technicality to some, but it really is an expression of an inner feeling that the issue does not define that child. It recognizes the person, instead of highlighting a label, such as “disabled,” that can be stereotyped and pigeon holed.
In the videos of Aaron Fotheringham, he often talks about being “on his wheelchair,” rather than being “in his wheelchair.” He is not defined by his disorder – and he is not his chair. His parents contributed heavily to this confidence. They encouraged him to excel and do the things he loved!
- Know your child’s limits developmentally, mentally, physically, and emotionally.
Assess your child’s abilities. Learn about your child’s disorder, and about the challenges that are associated with her disorder. When we understand the limitations, we know what may pose particularly difficult challenges. It’s not helpful to push beyond a breaking point. To accept some practical limitations, such as – in Aaron’s life – accepting he would be on a wheel chair, was an important part in freeing his ability to perform other incredible feats.
- Forget about your child's limits.
Help him forget about his limits as well. Challenge him to join others, be vulnerable, and take chances. Discipline the child when he needs to be disciplined. Hold him accountable for things he will say and do. Assist him in finding ways to express his individuality, as well as ways for him to excel and achieve.
- Give your child a life, not half a life.
Challenge her. Don’t press past what is reasonable, but expect great things as you would with any other child. Give her the means to achieve, but don’t do it for her.
There are many devices, technologies, and other accommodating services that can greatly increase independence and functioning in those with illnesses or disorders. These things may bridge some gaps between how they experience the world and how the world around them functions (a way that was not designed with their disorder in mind). Help them find these things and make the most and best from their abilities and opportunities.
Children vary in every shape, size, and ability. None are the same. Let them explore. Let them grow. When we do this, our children will grow into much more than we ever expected.