Redefining Disability Week 8: Family life and disability

In our experience, raising children who have special needs affects every facet of family life: family activities and recreational choices, schedule, discipline, holidays, even the type of work and ministry parents have. I don’t see living with a disability as a disadvantage, but it is different.

The “disabilities” of our children include difficulty with balance, cognitive limitations, fine motor challenges, behavioural challenges, hearing loss, and extreme near-sightedness (myopia). This means that although our children are able to participate in most activities, the activities will look different. For example, even though our twins are fourteen, they do not have the motor control necessary to participate in bowling without some help. They love the activity, but it has to be adapted for them. This means that family activities take more planning and preparation for our family than for some other families. The end result is that we don’t participate in as many activities because of time and energy limitations.

Our family schedule is also different from many families because our children seem to require more sleep. On school nights we aim to have our four younger children in bed between 8 and 9 p.m. We have discovered by trial and error that less sleep for our children affects everyone negatively. (I’ll leave the specifics to your imagination ) Our schedule also has to allow more time for most every day activities that most people don’t even think about – dressing, eating, bathing, etc.

Discipline (teaching and training children) is a challenge for all families. In our family we have to make sure we consider our children’s abilities. I’m thankful our children have the ability to learn. Sometimes they learn quickly; other times it takes hundreds of repetitions to teach them. Some skills will never be attainable due to physical and cognitive limitations. For some of our children, we can assign extra chores. For other children assigning extra chores means that one of us adults will be working right beside the child, sometimes hand-over-hand. We’ve had to assess consequences to make sure one child’s consequences do not severely impact other members of the family.

Our family has had the opportunity and pleasure of going on some holidays many people don’t experience. We have made multiple trips to the United States and a couple trips across Canada. Our children love to travel. Probably our most memorable trip was traveling through 28 states in 30 days. A feat in itself, but more of a challenge when you have a family member without bowel control. Again, pre-planning is important, and generous amounts of time and energy.

One fact I’ve had to come to grips with is that I will not be able to work away from home full time, at least not in the foreseeable future. The special needs of our children require that my schedule is flexible. I’m thankful that I’ve been able to find ways to contribute to our community and broader world through writing and other work on my computer, and also through prayer.

It’s time for me to put breakfast on the table and start a new day. Thanks for stopping by. Does your family live with disabilities? How does it affect you? If your family is not affected by disabilities, did you find this post surprising in any way? Leave a comment and let me know.

Last year Rose Fischer started a Redefining Disability Challenge. This year she is continuing to invite people to join the challenge by blogging about a set of questions she developed. I’ve decided to join this challenge and most Mondays (or Tuesdays!) will be answering one of her questions.