In reality, let's face it, any parent of a special needs child, battling a disorder, fighting illness or overcoming the odds, can tell you how often they look longingly at their peers wishing for a taste of that greener grass. We watch with slight pangs in our chests as other parents talk to each other on one side of the playground while their children play on the other; meanwhile we're unable to veer more than a foot or two from our special little ones.
But why not focus for a few minutes on some unexpected benefits of raising a kid with special needs? There are obstacles we haven't had to face, even though we've been saddled with so many others. I heard parents of special needs children say this a million times but I never truly believed it until I had one of my own: I wouldn't trade Aleck for a million healthy children, not in a million years.
I threw a couple of outlet covers into the wall and called it a day.
While pregnant with Aleck this was one of
my biggest worries. As entrepreneurs we
fell victim to the economic crash in 2008 and knew having a baby was going
to be almost unbearable on our finances. I would sit in my living room and look around at all the wires hanging
from behind the TV and all the sharp edges to our furniture, knowing that truly
"baby-proofing" our house would either be impossible or cost a small fortune—and we weren't prepared for either. But
I figured I'd simply never let the baby out of my sight once he or she started
to crawl. No biggie, right?
And then Aleck was born. They told us he'd never use his arms or walk, let alone
crawl. His neuromuscular condition would limit his movement for life. With a lot of hard work and determination we
overcame his prognosis. At 2.5 he started to walk, but he never
crawled. He would roll from room to room
but was unable to reach much with his arms and his hands. I threw a couple of outlet covers into the
wall and called it a day. Despite the
huge challenges we faced, this was an everyday parenting challenge we could put
aside. Crisis averted.
2. Choking Fears Eliminated
Part of Aleck's disorder, arthrogryposis multiplex congenita, is characterized by three or more contractures in the
joints. Aleck is affected in the knees,
ankles, hips, elbows, wrists, fingers and shoulders. Even after four years of constant therapy
he's still unable to get his hands to his mouth. We are working on a new form of treatment
right now, serial casting to get more bend in his elbows, and are hopeful he'll
be able to get his hands to his face in the future so he can live a more
As a baby this meant
he didn't put anything in his mouth. Hell, I could barely get him to take down 6 ounces of milk or formula in his
bottle. He wasn't interested in pacifiers and couldn't care less about the
array of teething toys I tried to tempt him with. So it certainly wasn't a big
deal in our house when my sister bought him a jar of marbles for his 2nd
birthday (it's still one of his favorite gifts). He loved dumping them out and
watching them scatter all over the floor and had no interest in getting a
single one into his mouth, though we still don't let him play with
them without adult supervision. After
all, our friends' 5 year-old downed one of those puppies at preschool last year
and they were on poop patrol for an entire week to see if it had passed. Suckers.
3. Poop-Free Walls
I was never fearful of what I was facing when I went in to get him after a good nap.
Friends of mine had twins and I'll never
forget the day they posted the infamous picture on Facebook: brown smear stains all over the walls. I almost vomited on my keyboard. Not only was I aghast that babies could do
something like this, I was floored that they were so eager to spread the love
to friends and family. Yuck. Since Aleck couldn't reach the back of his
diaper or get his pants down, a skill he's just starting to pick up in the last
month, I was never fearful of what I was facing when I went in to get him after
a good nap. Whew.
4. Time-Outs Work
During my pregnancy I watched a lot of
episodes of "Supernanny" and eventually learned these parenting lessons: Be
consistent, keep to a schedule, it's important to enforce a time-out. While watching I'd see these
parents have to grab their children and put them in their time-out positions
over and over again until they sat still the same number of minutes as their years
in life. To me this looked like the
definition of insanity. If I had a kid born with a similar energy
level as my very hyperactive little sister, I would have ended up spending most of my
life trying to keep this toddler in time-out.
But Aleck can't get from a sitting
position to a standing position. We
started time-outs at 24 months when he started yelling, "no, no, no" repeatedly
like a good little 2-year-old. Now he
can scoot his tush over the floor but he doesn't get very far that way, and since
we started doing them at such a young age he's conditioned to pretty much stay
put otherwise risking additional time-outs. Both of us get the break that the
time-out provides and I rarely have to do them over again. Score.
5. Rockstar Parking
After Aleck had hip surgery we checked ourselves into an inpatient rehabilitation hospital on his first birthday. It was one of the most difficult days of my life. We
shared a room with an 18-year-old girl who had been hit by a car and was
practically a vegetable, except for the one thumb she could raise after months
of therapy to communicate with the nurses.
Parking at the hospital was an upside I'm grateful for. The hospital outfitted all of the
families with handicap placards, and since it was submitted by the hospital we
were able to renew it for the next four years. But I'll admit, when it's Snowmaggedon in Chicago and I need to run out for toilet
paper, yes I will pull into the closest handicap spot I can get to, even if Aleck
is at home. I might feel a little
guilty but it's a little perk we've gotten with what has been a very difficult
and tireless journey. (Please don't judge me too
We don't have to worry about him scaling the back of the booths and winding up in someone's pasta primavera.
I won't forget when my girlfriend declared to an entire group of us that she's done taking her youngest daughter (who turned 2) to restaurants indefinitely. Her little
one would let out loud shrieks of joy at the top of her lungs and start
running around the restaurant whenever the urge struck her.
In our family, restaurants aren't a problem.
Since Aleck can't get up from the table by himself, we don't have to worry
about him scaling the back of the booths and winding up in someone's pasta
primavera. Now that doesn't mean he
doesn't know how to cause a scene or that he's eating his food,
but we can force him to sit through an entire meal without having to hog tie
him to the chair. When we dine with
friends they look at us in awe and remark that maybe they should try whatever we're doing with their kids before they get
too old to retrain them. My husband and I
just exchange knowing glances since only a percentage of it is due to our
parenting skills, the rest to Aleck's physical limitations. If that makes us look like really in-control
parents in front of our friends … well … bonus.