GOING TO COLLEGE

BY JACKIE SCHWABE

Many parents are not educated on the concept of dignity of risk when we are told our child has an intellectual or developmental disability. Our lack of education and training around dignity of risk can unwittily make us complicit in impeding our child's ability to become a contributing, valued, and respected member of society. Learning how to support prudent risk taking could be the determining factor on whether our children go to college or live in our basement for the rest of our lives.

HELICOPTER PARENT FEAR OF FALLING

It was a beautiful day. I should have brought my sunglasses, but my "baby-brain" was in full force; the little guy was expected in about four weeks. I held my two-year-old daughter on top of the baby bump as we left the applied behavior therapy clinic where I was told she was "at least" moderately autistic. After dropping my daughter off with the babysitter, I went back to the office and I mourned.

I mourned the loss of seeing her get married, watching her go to college, or helping her move into her own home. My only desire now was to protect her from the cruel world that was taking away her future. This was my entry into helicopter parenting. I already had three children and I was expecting the fourth.

The day before diagnosis day I would have been described as a laid-back parent. Yet, only 24 hours later, I was swooping in at any sign my daughter might be experiencing a challenge or discomfort. I was scared she was going to fall when she toewalked. I was afraid, somehow, that anything she tried to do was going to hurt her irrevocably.

PRACTICAL PARENTING TOO BUSY TO HOVER

All at the same time, the new baby was born in September, 40 hours a week of inhome applied behavior therapy (ABA) started and the older children started school. While at the time I was cursing the universe for giving me so much to handle at one time, it was probably the beginning of the practical parenting lessons that I needed to learn by being thrown into real life.

While I was nursing the new baby, I couldn't run after my daughter everywhere she went. Sometimes she would trip and fall right on her face. She would cry and then she would get up. I couldn't help her put on her socks the exact moment she wanted them put on, so she figured out how to do it herself. Too busy to hover, my helicopter crashed, and I was just trying to stay alive somedays.

ENTER LIMITING BELIEF MINE, NOT HERS

While I mourned what my daughter couldn't do and tried to protect her from failure, it seemed she didn't share my limiting beliefs. Day after day she did what I thought she could not, until one day I had to sit back and realize that perhaps with my well-intentioned desire to protect my daughter, I was holding her back from not only failure, but also from the possibility of success.

Thankfully my daughter didn't mourn the things she would not do, because no one told her she couldn't. Luckily, I kept my fears to myself and my mouth shut as it related to this particular topic. It was now my job to figure out how to get over my own limiting beliefs about what she could or could not do.

GETTING EDUCATED DIGNITY OF RISK

In the quest to support my daughter, as well as my other three children, I began a quest to find all the resources, tools, and support I could unearth. While I am embarrassed to admit it, it took about five years for me to stumble on to the idea of self-determination and dignity of risk.

Dignity of Risk was first articulated in 1972 in an article written by Robert Perske called "The Dignity of Risk and the Mentally Retarded." While I am not a big fan of the "R" word, I appreciated Perske's point of view. Perske advised that while we think we are being kind by protecting our children, we are really being evil. We are stripping our children of their dignity and keeping them from being all they can become.

Like Perske, Julian Wolpert wrote an article in 1980 called "The Dignity of Risk", considered by some to be seminal research on this topic. Wolpert said our patern a l i s t i c approach to disabled people that prioritizes safe guarding them over their rights as individuals to be independent decision makers is a limitation we place on their personal freedom.

RIGHT TO CHOOSE WHAT DO INDIVIDUALS WITH A DISABILITY WANT?

There was a lot of research and education about all the things that I needed to stop doing, but I wanted to know what I could do to help her be her best self. After all, the result of disallowing my daughter the freedom to fail created a high probability of developing low self-esteem and underachievement, according to Wolpert. What could I do different to make an impact?

Whenever I am at a loss for what to do or how to approach something, I tell myself to K.I.S.S – keep it simple sweetie. I needed to reframe the problem so I could find a new way to look at the solution. What was the problem? What do individuals with an intellectual or developmental disability want from life? Ah, and there it was.

The United Nations Convention on the Rights of Persons with Disabilities' first of eight guiding principles states that persons with disabilities have the right to "respect for inherent dignity, individual autonomy including the freedom to make one's own choices and independence ..." They want what everyone wants, the freedom to choose.

FALLING OFF YOUR BIKE WHAT IS DIGNITY OF RISK?

If everyone wants the freedom to choose, how do I support allowing my daughter to make her own choices? All the same old limiting beliefs came back into my thoughts. Could she make her own choices? How could she make her own choices? What if she falls? What if she fails? What if she gets hurt?

Then I remembered the first time I rode a bike. I was already in second grade. All of my friends already had a bike. My parents told me that I should wear shoes when learning how to ride my bike, but I didn't listen. I skinned the top part of my big toe off shortly after their warning. They tried to tell me, but I got hurt anyway. I learned by natural consequences.

Natural consequences made me think of natural supports. In our community we are always talking about how we can provide our children natural supports. One of those natural supports is to let our children skin their knees even if we know better. Essentially that is dignity of risk. Many of the best achievements were achieve the hard way and they involved taking risks, falling flat on our faces sometimes, and even some suffering. Yet, we all got back up and tried again.

OUR JOB IS TO PROTECT THEM WHAT PRUDENT RISK?

This idea of allowing my daughter to fail was really hard for me to consider. I've tried to protect all my children from so many things. I made them hold my hand when we walked across a parking lot. I told them to blow on their food so they wouldn't burn their tongue. How far do we take this natural consequence thing?

Penske gave us the answer in his 1972 article: prudent risk. He even went to far as to say that healthy development requires risk taking and that there could be crippling indignity in safety. He hypothesized that prudent risk was a new skill that everyone needed to acquire for the sake of our children and our society.

What is prudent risk? I know you all want me to give you a step by step guide on how to determine what things you should allow and what you should not allow. Unfortunately, I can't do that. But I can tell you how I define prudent risk. Prudent risk is showing care and thought for the future when taking a chance.

So not, we don't throw caution to the wind. If your child is water-seeking, for heaven's sake don't just leave them to wander alone in a water park in hopes that the natural consequence of nearly drowning will teach them. You have to consider for yourself what chances are acceptable and what are not. They won't die if they skinned their toe, so perhaps if they don't heed your warning about riding their bike without shoes, you let that one be a learning experience. They may get seriously injured running into the street, so perhaps don't provide a warning in this case and hold their hand even if they don't want you do.

WHAT IF THEY DO? GOING TO COLLEGE

I have no idea what the future might bring for any of my children. There is some joy and happiness in the not knowing. My limiting beliefs will sneak in once in a while and I'll have to slow down and reconsider. Now, more often than not, I think how we will support my daughter if she wants to get married, go to college, or move into her own home. Even reading it reworded like that brings a smile to my face.

We can be the new generation of parents. Not the helicopter, or tiger, or whatever all the styles are now. We can be part of the Possibility Parent movement. We can realize that all people want the same thing, the right to choose. Learning how to support prudent risk taking will get our children to college and out of the basement. •

ABOUT THE AUTHOR:

Jackie Schwabe is CEO of Mindlight, LLC. She is a Certified Caregiving Consultant and Certified Caregiving Educator. She received her BA in Management Computer Systems from the University of Wisconsin -Whitewater and her MBA in Technology Project Management from the University of Phoenix. She has been active in the area of healthcare integration, healthcare IT, telemedicine, product development, and product management for over 20 years. She has been a cross-sector, cross-discipline leadership practitioner her entire career. Jackie wakes up motivated to help others. Her mission, to provide the tools, opportunities, and connections people need to be their best self. A mother of four children — one with autism — she often says different is not less and communication happens in more ways than verbally. She co-founded MindLight, LLC as a way to technologically help caregivers.