I last wrote about technology-dependent children two years ago. The term is a broad one, but it describes those children who rely on some piece of technology, such as a mechanical ventilator, to live. They are fragile and challenging children to care for for physicians, but much, much more so for their families.
I’ve been looking for information to tell me more about how many such children there are in America, but haven’t found any nation-wide information beyond what I described last time. What I have found are some interesting and compelling descriptions of what it is like to be a parent with such a child.
This interview from last spring describes a study in which 103 mothers of technology-dependent children were interviewed and screened for indicators of psychological distress. The author found that about 25% of mothers were at risk for depression, although the study didn’t specify how many of these mothers actually were clinically depressed. It also didn’t give any important background control information; in particular, it didn’t say what the expected rates of these things would be among mothers with normal children. The author did offer some commonsensical advice about how healthcare providers can help families prevent this. Interestingly, the findings did not correlate with the particular kind of technology the child needed.
In my own experience, mothers (and families) of technology-dependent children are quite resilient psychologically, although I’ve not done a formal survey. Recently I ran across this blog by a mother of such a child. Her can-do attitude seems more along the lines of mothers I’ve met in this situation. She’s got an excellent summary of what life is like, and what she expects, in what she calls a “Bill of Rights for Special Needs Parents.” Here it is — it makes sane and inspiring reading:
We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.
We have a right to trust our instincts about our kids and realize that experts don’t always know best.
We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.
We have a right to choose alternative therapies for our kids.
We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.
We have a right to wonder “What if…” every so often.
We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.
We have a right to blast Bruce Springsteen/ Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that’s what it takes to avoid burnout.
We have a right to react to people’s ignorance in whatever way we feel necessary.
We have a right to not always have our child be the poster child for his/her disability and some days be just a child.
We have a right to go through the grieving process and realize we may never quite be “over it.”
We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.
We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.
We have a right to have yet more Pinot Grigio
We have a right to fire any doctor or therapist who’s negative, unsupportive or who generally says suck-y things.
We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.
We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”
We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.
We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.
We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our child’s disabilities.
We have a right to talk about how great our kids are when people don’t get it.
We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.
We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.
We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.
We have a right to get tired of people saying, as they give that sympathy stare, “I don’t know how you do it.”
We have a right to wish that sometimes things could be easier.
We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.
We have a right to push, push and push some more to make sure our children are treated fairly by the world.
Sachin on 