The Samuel Morris Foundation supports children that have a wide range of disability as a result of brain injuries. Living with a child with a disability has a wide range of effects on the child, parents, siblings, extended family members and extended community networks.
Most people simply have no clue about the myriad of challenges that living with a severely disabled child brings, so we will share some stories of the challenges involved.
Take for example this extract from a blog post tilted “Disability has me” by Claire a mother living with her severely disabled daughter…….
………the fact that our kids’ health turns on a dime, to use an expression from last night’s chat with a friend (that I wasn’t able to finish because I had to deal with my kid). We are stuck in this bizzare time warp where you have to take months to plan ahead for any sort of significant event in life (travel, weddings), knowing all the while that all the planning in the world won’t change the fact that your kid’s health can take a turn for the worst an hour before you execute your plan. Then the whole thing goes down the toilet. And it’s not just about travel. Consider trying to hold down a job when you have a medically fragile kid. If the helper doesn’t show up, you have to call in a sick day. If your kids gets sick and lands in hospital, you have to call in a sick day. When YOU are sick, you have to call in a sick day. You know, after a while, the old boss is looking through the resumes… Even if you have a stay-at-home spouse, you run into problems, usually those of economics. Someone has to make a boat-load of money to carry, not only the usual family expenses, but those generated by said child.
Then don’t talk to me about the emotional toll…on the various family members, on the marriage, on friendships, on extended family relationships…”
This experience is familiar to far too many families and families that the Samuel Morris Foundation is involved with. If you want to get a little bit more of an insight into the lives of families living with a child with a severe disability then I encourage you to read the rest of the disability has me post.