I’m often sent story pitches for what strike me as ridiculous products that in no way relate to parenting, let alone parenting children with disabilities—but which perhaps tell us something about our culture.
Case in point. This morning I got an e-mail suggesting a story about the Beebo—a rotating bottle holder you place on your chest while feeding so that your hands are free to read to your newborn (or accomplish other tasks—let’s not even go there).
A publicist suggested this would make a great story because it’s almost National Reading Month and four studies show that reading to a newborn boosts their development. For example: “According to analyses of the Program for International Student Assessment, which is given to 15-year-olds worldwide, the biggest factor influencing higher scores was whether or not a child was read to on a regular basis when they were young.”
Reading this story pitch on this particular morning made me cry. When my son was four months old, not a newborn, he loved to be read to, and he would sit in my lap and track picture books left to right, even though he had an undiagnosed and untreated hearing loss.
The reason I cried thinking about that memory was that I heard some news yesterday that I didn’t want to hear.
The information was delivered by a very kind, committed person, but the news itself was related to yet another thing my son may never do.
He’s almost 21 now, and you’d think I’d have been given the extended list of what my son “can’t” do. Goodness, it’s not like we don’t have file folders full of bulky reports detailing the myriad of everyday things—like talking, or running, or doing a handstand in the pool or writing effortlessly, or reading at his age level, or having friends—that are beyond his grasp.
Of course we also have reports on the ways in which we’ve tried to find alternate paths for these things—like a voice device to take the place of speaking—that have failed. Not always because my son “can’t” do what is needed, but sometimes because he “doesn’t want” to do it. And when a child grows up, you can’t always force them to do something in the way that you can a small child.
So in the case of a voice device, he finds them cumbersome and clunky (and as a Mama, I have to agree that they’re not intuitive and user-friendly the way mainstream business technology is).
But I digress.
Yesterday I was told that my son is likely incapable of doing something that the average person takes as a given and necessary and productive part of life.
It’s not that we, as his parents, weren’t aware that this prospect was unlikely. We may be hopeful, by we’re not stupid.
It’s more that we were hoping that there might be a different ending to this story, in the way that ever since he was born, and ever since his diagnosis, and all the way through his years of growing up, we have held onto hopes that we could “change his story” and make it what we wanted it to be for him.
At first, we wanted to give him what we felt was a “just” and “fair” starting point for a person in this life, in the same way that we were given this starting point in our own lives, one that entailed many gifts of ability—not because we deserved it or had earned it. That is why they are called gifts.
And when we couldn't give him that starting point, we thought maybe we could wrestle back some justice in the way he developed. You know, those stories about beating the odds that everyone wants to hear?
Whenever I get news like this, even though I know it’s counter-productive, I can’t help looking back and wondering what I didn’t do, what I could have done differently, and trotting out examples of other family situations that have turned out differently, even for individuals who have the same syndrome as my son.
Okay, maybe my kid was dealt a bad hand in life, but couldn’t he be one of the lucky ones amongst those kids who have been dealt the same hand?
And then I have to acknowledge that, in fact, my son has been making some nice gains recently in different areas—for him. The problem is that we will be the only ones to recognize them. He is on a completely different trajectory from other young people, an alien, if you would, on this planet. So those gains he makes don't mean anything here in this world. They will never be enough.
There isn’t any point to this post, any silver lining, other than the fact that one of our readers sent me a lovely message of compassion and encouraged me to stand back and regroup while holding on to the belief that our son’s life can still have meaning (even though it will in no way resemble that of others).
When I receive story pitches about products like the Beebo that are touted to significantly improve the abilities a kid is born with, I don't know whether to laugh or cry. Do parents need to worry about whether they’re immersing their newborn in reading? Will it make them better, more successful, parents if they’re reading to their newborn rather than cuddling and cooing to them? Will it change the course of their newborn’s life?
Cause I have followed, to the best of my ability, every instruction, every piece of stray advice and every therapy recommendation given to me to support my son since birth. And I have bought some of the craziest products and alternative therapies—at great expense—on the off-chance that a smidgeon of their marketing spin was valid. I work in a hospital, after all, it’s not like I don’t hear about the latest things. I started an international organization for families affected by my son’s syndrome. I know how to research. I know how to work hard.
And it didn’t make a difference.
So I say take your Beebo bottle holders—and your plans for raising your newborn’s IQ through reading—and shove them. If we don’t have time to hold a newborn, and his bottle, because we're too busy reading to them, something is seriously wrong with this world.