Parenting Children With Disabilities

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Parenting children requires the wisdom of Solomon, the faith of Mary, the patience of Job, courage of Deborah, and the strength of Samson when your child moves out of the house.

When God calls on parents to raise a child with disabilities, the work takes on added challenges. Many times parents need to grieve the child they thought they were going to have as they learn to love the child that God gave them. Parents of children with disabilities often find it even more difficult to understand their child’s needs. They must navigate the social service and education bureaucracies, deal with additional stresses as a couple, learn how to appropriately discipline the child, and help siblings understand their role in the life of a brother or sister who has a disability.

My wife and really benefited from Bernard Ikeler’s book, Parenting Your Disabled Child, when we brought our first-born child, Nicole, home from the hospital after her 6 ½ month sojourn there. His experience as a person who lives with a disability himself gave helpful and sometimes funny insights into raising a child with a disability.

A new book for a new generation of parents raising children with disabilities came out late last year, Parents of Children with Disabilities: A Survival Guide for Fathers and Mothers by Press and Gena Barnhill who have both academic training in special education, raising a child with Asperger's syndrome, and experience with supporting other parents of children with disabilities. My wife, a special education teacher, and I both thought that the topics covered and insights and ideas would be very helpful for a young family today.

Mostly, the book does not delve into practical ideas for raising children since disabilities are so different from one another that the particular challenges could not possibly be covered in a short book. Instead, Parents of Children with Disabilities discusses the universal challenges that couples and single parents must deal with because their child is different from most other children. In a private email message, author Press Barnhill explains, "Our focus on the parents is based on our belief that helping the parents not only helps them but a healthy parent is perhaps the most important thing that a child with disabilities needs!"

Beginning where most parent begin, the first chapter, "Dashed Expectations," addresses the grief most parents experience when they discover their child has a disability. The Barnhills also address marriage strain that results from increased stress, friendships, self-help, and other issues. They have a number of chapters which tell the stories of specific parents including ones specifically addressing the mother's and the father's perspectives. Their chapter answering the question "What is Success?" drives away the culture's expectations for raising a wunderkind, and instead takes the long view that success is found in doing God's will and building positive relationships that build other people's lives.

The final chapter gives a brief analysis for deciding how best to allocate the "for things to use" in life: Resources, Abilities, Time, and Energy. 

This talk about parenting makes me think about one other topic to mention here: estate planning. The Wall Street Journal published a fine little article yesterday on estate planning for parents who have children with disabilities. It's another one of those things that one doesn't have to think about if one has nondisabled children, but very important if a child has a disability. It's called "Making Sure the Kids are All Right." If you have a child with a disability, and haven't made your estate plan with an attorney who understands these issues, be sure to read this article.

I salute parents who work hard at rearing their children in the way they should go, following a godly path, whether or not their kids have disabilities. May God help our children to grow in love and obedience.

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Thanks Mark for these resources! The Barnhill book sounds very interesting.

As a parent of a child with Down Syndrome, I can definitely agree with you about the challenges of raising a special needs child. My daughter just turned four today, but it already seems that she has required more attention and energy from us than from any of our other daughters. And it's in surprising ways too, for which we are thankful to God for, as she is a bundle of energy and activity.

Concerning estate planning, well, here's a resource for financial planning for parents of special needs kids in the province of Ontario in Canada: http://www.cheo.on.ca/uploads/Financial%20supports/Financial%20Resources.pdf

It does mention some Federal Tax issues though. Maybe someone else may know of similar resources for other parts of Canada.

Guide

Chong,

Thanks for sharing this resource. The Registered Disability Savings Plan is another program for people in Canada that people with disabilities and care givers need to learn about.

Mark

Thanks guys for  sharing your struggles as parents of children with disabilities. It is important that parents keep the church aware of these trials and joys. . This should be a shared commitment to all in churches. Disability is normal and has been with us since the fall of man.

Ken