“Even one voice can be heard loudly all over the world in this day and age.”
Little Bird turned 8 – months – in July. Other than my weird obsession with the Number 8, there’s nothing significant about that anniversary.
However, this is the last time I get to do the “baby-thing”; it’s already passing in the blink of an eye. I recently paused to think back on the last 8 months.
For new dads of children with Down Syndrome, here are 8 tools that should be in your “tool-kit” as you embark on your first year.
The single best piece of advice that Momma Bird and I were given came from the NICU nurse (a 30-year veteran of the NICU):
If you do one thing, start him in physical and speech therapy immediately.
We did — within the first month after Little Bird came home. I don’t know how much Little Bird gained from those early days, but Momma Bird and I learned some valuable stuff.
We didn’t get a pre-natal “heads-up” on Down Syndrome, so we had to scramble for information when Little Bird was born.
(In retrospect, nothing I have learned about Down Syndrome in the last 8 months would have justified the risk of an amnio or CVS solely to get a pre-natal diagnosis of Down Syndrome).
Our local Down Syndrome Guild is a great resource. While I’ve learned a lot about Down Syndrome from “The Google” and some other bloggers, my best learning comes at Down Syndrome Guild events.
From unique financial planning seminars, to speech therapy classes with a variety of therapists, to new parent meet-and-greets, to Summer BBQ’s and Pool Parties – your local Down Syndrome Guild should be a “go-to” tool.
A lot of people ask me if Momma Bird is Asian (she’s from Arkansas, which is TOTALLY different). I think it’s just his Down-Syndrome facial markers that lead folks to this assessment.
I suppose I should take offense, but I don’t. We all say goofy shit from time to time, and I hope folks cut me some slack when I shoot off at the mouth – because I do it a LOT.
Taking offense is a quick way to prevent a “learning moment”. Laugh it off, and try to have a chat about Down Syndrome that is relaxed and free from judgment. (Believe me, there is enough in the DS world to take offense at – don’t worry about complete strangers).
Education is the key to eliminating the belief that Down’s Syndrome is bad.
In the past, when I used the word “retarded“, I rarely meant it in the context of its definition; it was almost a sort of hyperbolic flourish to whatever point I was trying to make. In reality, I was too lazy to use the actual word I meant.
That said, I’m not going to be the “Word Police”. Here’s my approach; can I persuade you to use that approach?
Use the word “retarded” if you must - and only if you must. How do you know when you must use the word? Here’s my measure: the use of the word will add more value to the world than it takes away.
My thoughts in this area are evolving, and I hope to post later this week about an individual who has plans to take the word back.
My kid’s giggle is better than your kid’s anything.
Not because he has Down’s Syndrome and is a special gift from Jesus sent to us because He knows we can handle the load and will reward us with fluffy bright days of giggles and hugs, Downsie specialness, unicorns and butterfly poop.
My kid is better because he’s my kid, and my kid is cooler than your kid. And some of y’all have some freakin’ COOL kids.
I watch and hear other parents of children with Down Syndrome struggle with the diagnosis. They talk of how Down Syndrome shattered expectations of the perfect child, the perfect life, etc.
So much of the “doom and gloom” of a diagnosis of Down Syndrome is centered on the parent’s acceptance of the diagnosis, and the parents’ struggles with the condition. The higher a parent’s expectations of the unborn child, the harder they seem to crash when they learn of Down Syndrome.
I am frequently reminded of a line from an old Gin Blossoms song: “If you don’t expect too much from me, you might not be let down”.
I used to think I understood what that line meant – I thought it was about lowering the bar of what we expect from other people so we aren’t hurt.
Now, I have a very different understanding: Let go of whatever you expect your child to be. As a Dad focus your energy on giving them the tools to become whatever they want to be.
There is a Big Myth about Down Syndrome - a black cloud of shame, disappointment, self-pity and negativity.
I’m generally fine with people having whatever feelings they have – who am I to judge what someone feels inside?
But some folks “jump-the-shark” on Down Syndrome Gloom and Doom. Why? For a clue, listen to the words of this parent that almost committed suicide over the diagnosis (frankly, that seems a bit melodramatic, even for the Doom and Gloom crowd). Pay attention to where (melo)Drama Daddy says “I believed every negative thing I heard about Down Syndrome.”
You know what? There’s nothing negative about your child – Down Syndrome or not. Nothing.
Your child may be healthy and strong and shoot out of the vagina speaking fluent Mandarin. He might spend his first week of life in the NICU – for any number of reasons. She may have heart surgery in the first days or weeks of her life. He might even have to fight for his life in the first weeks and months.
So here’s the deal, Dads:
Your child is a living human being that needs a father to support them, provide a safe environment for them to reach their potential, and to teach them how to push their shoulders back and hold their head high when the chips are down.
Please, don’t be “that guy” who buys into the “Woe-is-Me-my-child-has-Down-Syndrome” motif. Act like a man and get on with the business of raising your child.
I always knew my wife “rocked” raising kids, but watching her these last 8 months has reminded me that I couldn’t have found a better woman in the world.
You are a bad-ass, V! ;)
I could sum all of this up by saying that over the last 8 months, I’ve learned this lesson:
I just had a healthy baby with a woman I love very much.
My baby is awesome.
That Down Syndrome thing? It Just Doesn’t Matter.