Thursday, November 28, 2013

10 Months

Double digits, baby!

Yes, I'm posting without pictures.  We're all recovering from the plague around here, and no one is feeling very photogenic.  But I might as well go ahead and post this, because we're already a week late.

So, right now, you love clapping.  To paraphrase Buddy the Elf (yes, you watched Elf for the first time last weekend) "I love clapping.  Clapping is my favorite!"  You clap when you're happy, you clap when you think other people should be happy, you clap when you're proud of yourself, and you clap when you think other people should notice and be proud of you, too.

Just in the past few days you've started flopping forward from sitting onto your tummy, instead of falling backwards onto your head.  While this is an improvement, I wish you would listen to your PT and involve your arms a bit more.  Doesn't that hurt your nose when you flop over?  Oh, but you're trying so hard, it's impossible not to be proud of you when you show off your new skills.

You're getting smart enough to find ways around the skills you find challenging.  Your PT would like you to use two hand to pull a ring off of the cone-toy.  You have instead mastered the skill of knocking the toy over so that the rings come off.  And then you wave the rings in the air, proud as can be, waiting for cheers.

You're not mobile yet, but you're getting better at letting us know where you want to be.  Usually this means diving, head first, toward the person you think should be carrying you or the toy you think should be in your hands.

You're developing your own take on separation anxiety.  That is, you'll go off with just about anyone, happy to make a new friend.  But later on, when you get tired, you will not settle down for anyone outside of our family.  This means we often come back to a tired nursery worker or babysitter, and to you with red eyes and a quivering pout and an accusatory stare that asks us how we could have let-this-happen.

It's clear that you were born in Indiana.  Like all these other crazy Hoosiers, three weeks out you are still protesting the switch from Daylight Savings Time.  Dude, look, having the same clocks as the rest of the country helps us keep in touch with our friends and relatives elsewhere, and is good for the economics of the region.  Your world is bigger than Indiana.  So please, please, adjust your sleep-wake cycle accordingly, okay?

This month has gone quickly.  Since Halloween there's been no special events (and between the dwindling sunlight and my fritzy camera, very few photos), no trips, no "firsts" to add to the neglected baby book.  We're all hunkering down a bit in the colder, darker, weather, and you're happy to play at home with your family.  We're happy to have you here with us, too--and we're starting to get excited about sharing your first Christmas season with you in the coming month.

Tuesday, November 19, 2013

Baby Ears

I've been noticing other babies lately.  And, I mean no disrespect, but all the babies out there with a mere 46 chromosomes?  Y'all have ridiculously large ears.  There.  I said it.  It's not that you're not cute, you are, but I just can't stop staring at how much of your heads are dominated by ear.

Tuesday, November 5, 2013

Dear Special Needs Parent: You Are Not Special

Less than a year into this journey, I’ve already gotten the question about what I would tell someone who is facing a new diagnosis—of Down syndrome or of some other disability facing their child.  My advice to special needs parents?  You are not special.

Special needs are everywhere.  Looking around just at my group of friends here in town, pretty much everyone has dealt with some “disability” of at least one of their children.  Premature babies who spent time in the NICU.  Kids getting early intervention services.  Parents going to repeated doctors appointments—sometimes without finding answers, sometimes learning that their child has a lifelong health concern.  Kids who get labeled with sensory processing disorders or autism or speech delays.  Parents who wonder if they should be seeking professional help to figure out a label.  IEPs, changes of schools, experiments with homeschooling.

And that’s just the kids.  Even those of us adults who are usually-abled have our periods of disability.  Flues that knock us out for a week, joints that don’t behave like they used to, mental health outbursts that make daily tasks insurmountable.

Nothing about Max is unique.  Nothing about our family is unique.

These challenges sometimes suck.  I don’t mean to undermine that—especially if you are struggling through a particular challenge right now.  You deserve a pat of the back for the ways you fight for your child.  You deserve hugs when you worry about your child.  You are entitled to shake your fists at the sky when you have to watch your child go through ordeals that are unfair, damn it.

But none of that makes you special.

I’m sure someone thinks you are special.  Your partner, your family, your children—they think you are special.  Your friends can list off the ways that you are special.  And maybe some of them, in some well-meaning gesture, will tell you that this is why you have a child with Down syndrome.  They will tell you that a special person such as yourself has the patience, the skill, the compassion, the love to deal with a special child.

But your child isn’t really all that special, either.  And your child doesn’t need a special parent, they just need you.

And that reminder, more than any inspirational story, has helped me make my peace with where we are.  We can do this, not because we are special, but because we are ordinary.