KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.You’ve had a baby! Congratulations! Now all the questions that were about the mom-to-be will be about the baby and you and your spouse/partner/whoever will be roundly ignored.
And there he or she is: Something like 5 or 10 pounds and a size to fit on your forearm (unless, of course, the baby is NOT that size). Out of the hospital and home to the crazed life of new parents and the constant wonder of how some creature that sleeps so much could keep you from sleeping at all.
And then…. sometime … maybe early, maybe later, you realize, something is different. Yes. Something is different about your baby. He isn’t doing what his peers are doing. Or he’s doing it differently. Or she’s doing something they are not doing. Or something. Different. Your baby.
Off to books and websites and pediatricians and friends and ….. They all say different things!
“It’s a phase” (but this phase doesn’t seem to end).
“All kids are different” (but your kid, somehow, seems more different).
“She’ll outgrow it!” (Maybe. When?)
It might be XXXXX
If only you did something different it would be fine (such helpful advice! It’s YOUR fault! Thank you so much, helpful friend!)
Time passes. And the difference doesn’t disappear. Your baby is not like other kids, in some way. And, one day, some expert, or series of experts, will give …. a diagnosis.
What to do?
Well, there will be quite a number of things, depending on what the diagnosis is. Some will be hard, some easy. Some practical, some emotional. Some of it will depend on you. But
What’s the first thing to do?
Well, as Douglas Adams said in Hitchhiker’s Guide to the Galaxy: DON’T PANIC.
But, more specifically, there is something you should realize: Your child didn’t change when you got a diagnosis. He has the same quirks and she has the same difficulties. But you changed.
You gained information.
You started along a path that may offer some help and support.
You realized there are other kids who are like yours. (even if your kid is 1 in a million, that means there are 7,000 people just like him).
Those are good things.
Later, there will be (trust me on this) lots of ups and downs. Good advice, bad advice, strange advice. But your child didn’t change. You did.