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>Two Inevitable Objections

April 8, 2011

>Post four in a four-part series on grace-based NHA.

I want to follow up on a few a recent posts mentioning the concept that secondary disabilities may arise when there is a poor fit between a child and his environment. That’s not my own idea. I just resonated with it when I read it Diane V. Malbin’s article FASD and the Role of Family Court Judges in Improving Outcomes (p. 56).

There are two common objections to the idea of modifying the family system (i.e. reaching outside the standard, accepted box of parenting tools) to provide a “good fit environment” for kids with hidden disabilities like FASD. The objections are:

  • The child doesn’t change; the people around him just learn to accommodate his differences. The implication is that it would better if the child would change; changing the environment just enables his dysfunction.
  • The real world isn’t like that. Someday the child will grow up and face the harsh reality that life won’t accommodate his differences. It is cruel to coddle him from the truth while he is growing up.

I may have said similar things myself before God brought children with disabilities intimately into my life. I’m not casting stones. Back then my experience was limited to a world filled with typical children. So I knew no other way.

But I think it is helpful to observe how differently we treat children with visible disabilities. Consider my daughter Joy.

Her primary disability is the quadriplegic form of cerebral palsy. There is no human way to go back and fix her brain damage any more than we can go back and fix kids whose neurological damage is due to prenatal alcohol exposure.

But Joy does not have to be mobility impaired. That would be a secondary disability that might arise if we did not change our family environment to accommodate Joy’s special needs. No one else in the family needs a wheel chair or a house with ramps. But Joy does. So we are changing the whole family’s environment (we’re preparing to move) to find a house that is better fit for Joy because she is a treasured member of our family.

Because Joy’s primary disability is visible, I doubt anyone will criticize us for building ramps at our next house. No one would think we’re just being lazy, making it easier to carry in the groceries and take out the trash. No one would voice their gnawing concern that we may not be working hard enough on the right things. That we must not understand it would be in Joy’s best interest to learn to walk like people in the mainstream. That in making accommodations we are enabling her. And don’t we realize that at this rate she’s going to enter adulthood dependent on a wheelchair?

Well, yes. Joy is going to be dependent on a wheelchair. Whether we accommodate her or not.

However, if we accommodate her mobility needs from the time she’s young, if we alter our family environment to make it a good fit for her, research shows we can expect several positive differences. She will be a skilled wheelchair user, not a rookie. She will have developed a self-concept of her chair as  a natural extension of herself that enables her go where she wants to go, not of herself as “a person in a wheelchair.” She will have grown adept at navigating a world retrofitted into compliance with ADA. She will  not have to learn all of these things at the same time she’s learning to live on her own or holding down her first job or planning her wedding.

But people routinely make assumptions like these about parents’ choices in modifying the family environment to  better fit a child whose disabilities are hidden. To those people, I would love to say: “We are simply doing the parenting equivalent of building ramps and installing elevators. Even if from your perspective there is no special need in sight.”

We all need grace. It isn’t enough to affirm that God puts orphaned children in families at the time of  the adoption announcement or during a child dedication service. If we believe this is true when the child is still small and cute and their future is unknown, it is still true, and becomes even more important to affirm that it is true, as the child grows older and things begin getting rocky.

“Many are the plans in the mind of a man,
but it is the purpose of the LORD that will stand.”
Proverbs 19:21

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