Okay, I know that title is totally politically incorrect, but it is exactly what I meant to say.
See, in the past five years, I’ve read a TON about Down syndrome and what I can expect from our son, Noah, who is 5 and has Down syndrome.
But it’s just not all panning out like they said it would. Some of it is, but not all of it.
For instance, I’ve been told people with Down syndrome are meticulous and have to have things ordered a certain way.
Um, excuse me, but Noah’s happy spot is in the middle of his bed surrounded by all the books off his bookshelf and all the clothes extracted from his brother’s drawers.
Simian crease – that single line that runs across their palm instead of the neurotypical double line – my guy has the double line. And get this – the last Down syndrome conference I went to, two men in one of the workshops had the Simian crease, and they didn’t even have Down syndrome.
That extra space between the big toe and the next toe? That was one of Noah’s early Down syndrome tipoffs – something I tried so hard to ignore. And now it’s one of the cutest things about him. But come to think of it, there are a few other members of our family who have it too.
Almond-shaped eyes – oh, does my guy have some beautiful almond-shaped eyes!
Inability to be breast fed? Noah definitely had some feeding issues. Poor little guy couldn’t keep his tongue from slipping down while he tried to nurse. With a LOT of effort and persistence (I’m very stubborn, and I guess he was too), he did breast feed with only a few days of supplementation early on.
And how about his ears? Chronic ear infections in children with Down syndrome seem to be a given. Noah has had one, and that one wasn’t even definite. Granted, he doesn’t go to daycare or school, and his exposure to children outside our family is very limited, but one ear infection in 5 years?
And I’ve read all the books about sensory integration disorder and pinned a million pins for sensory boxes and sensory-based activities. Out of all my children, Noah is one of the least sensory-sensitive ones. But I’m really glad I read the books, because they seem to have been written about another two of my kiddos.
Speech – expect that child of yours to be speech delayed, but he should be starting to form some words at age 2. Ummm, try age 4, and let’s not even talk about his rate of progress.
There are some qualities attributed to Down syndrome that I thought Noah didn’t have, but as the years roll by they are starting to show up. Things like being overly affectionate. Oh, well, cancel that, all my kids are overly affectionate. One of the men at the church we’ve been going to commented about it, wondering if Seth (2) had mistaken him for someone else, and I said, “No, all my kids were like that. I guess they’re so starved for affection at home, they get it anywhere they can.” I think he thought I was serious. Sigh.
When Noah was initially diagnosed, his pediatrician commented that if they could isolate the love gene that kids with Down syndrome have, they’d bottle it and make a million. He was right.
And the way those kids with Down syndrome manipulate their teachers and caregivers with their affection and smiles? Bingo.
Easily frustrated? Yes, that would be Noah.
Picky eater? Well, he tried that for a few weeks, but he got awfully hungry, and now he even eats his veggies. Okay, seriously, he did flat out refuse to eat most veggies and all salad until the last six months or so.
Poor muscle tone? For the first several years of Noah’s life, his pediatrician often commented on what good muscle tone he had (relatively for Down syndrome, I’m sure). I think that as Noah has grown, his poor muscle tone has gotten more noticeable, although I doubt it has gotten worse. I’ve met a man with Down syndrome who works out regularly and is more muscular than most neurotypical men his age.
I’m glad Noah keeps me guessing, because it forces me to look into his heart and not some Down syndrome textbook to relate to him. It’s so easy to set goals for our kids and form our expectations while we mold them to fit into our design and life plan. Can’t do that with Noah, and it’s really stretching me. It’s a challenge for me to pour my love and teaching into him and not always know if it’s sticking or not. It’s a challenge to not have a test or a milestone to judge my parenting and homeschool skills by.
Don’t get me wrong, I give God the glory for the good things in my kids, but realistically, if my kids grow up to be hard workers, to be confident enough to pursue their passions, to be able to sustain themselves and their families, to be loving spouses and parents, to be articulate and gracious and love others more than themselves, and if every now and then they come home for dinner, I’ll consider that I did a good job in raising them and that my time was well spent.
But Noah? What will the litmus test be for whether I did enough for him as his parent?
And then I remember Proverbs 22:6 – “Train up a child in the way he should go, Even when he is old he will not depart from it.”
And 3 John 1:4 – I have no greater joy than to hear that my children walk in truth.
Those verses simplify things quite a bit. And I do think that when people truly are walking in the truth, all those good things, fruits of the spirit, follow: Love, peace, patience, faith, long-suffering, kindness, goodness, gentleness and self-control.
But it couldn’t hurt if I teach him to read and count, ya think?