Perspective

Today I was dragging Little Big and Little Bro through a long hallway in a children's wing of a large hospital.  They had been woken from naps early and were tired, cold, and grumpy.  Even grumpier was me, their seriously sleep-deprived mama (my own fault for deciding on a whim this week to paint our kitchen after bedtime), who was pissed off that we had to add yet another weekly therapy session that required me to shlup both my grumpy kids around at a really inopportune time of day.  Classy and big girl, I know.

Bottom line, it was a three car frowny train barreling down that hallway about 7 minutes late.

A man and woman stood about 3/4 of the way down the hallway fussing in agitation over a large jogging stroller that was facing away from us.  They seemed stress and unhappy and resigned, just like me.  My thought as I approached them was literally "Man, I know how you feel.  My kids are being pains, too!"

Then I reached the point where I could see their child in the stroller.

A child probably 3-5 years old with a trachea tube whose fragile looking body was having what looked like a seizure as her parents tried to keep her safe and comfortable in the moment.


Dear Me:
Shut the hell up.  You have two healthy children who have every chance in the world to live out all the dreams you had hoped for them. Children whose needs are predictable and isolated and generally not impeding daily life. Get over yourself, hug your babies, be grateful, and send a prayer for quick peace for that family who just reminded you what real strength and challenge looks like.

He's Got This

The past week or two has sucked for Little Bug and for us.  His behavior hit a low point, and it took a lot out of us all as we tried to crawl back to balance.  Luckily we managed to isolate a couple of the trigger factors and modifying those things helped Little Bug a ton in being able to regulate himself.  That makes me nearly sob with relief because as hard as it is for us to deal with, you can see the frustration and helplessness in his eyes as he loses control. He hates these periods more than any of us.

But I realized today that one of the factors I hadn't considered was definitely at play; a developmental growth spurt.

Little Bug is a plateau-er in his development.  He takes a long time to build up to a new stage in development, and then sits there for a long time until he just leaps up to the next level.  I can imagine that would take a lot of of a little mind and body.

But last week my son could only get the end letters of the ABCs down, could count to 3 and then again from 7-10, and had only a couple songs that he could sing all the way through on his own.  He could focus long enough to match five colored circles to the five colored squares only with significant help/prodding/forcing.  These feats took him a very long time to achieve, and I was so proud of him.

Tonight he can count to 10 confidently without skipping a number, he can sing the entire ABC song by himself without any help (although he hums through some of the hard-to-pronounce letters, but I know it's in his head), he sang not one, not two, but our entire five song bedtime routine on his own without help (including a song in Korean), and his new favorite game is a color matching folder with 12 colored squares that he rocks the lamination off.

Proud?  Appa and I are practically drunk on it.  I'd have him bow, but he is slumbering peacefully and will be for the next 10 hours because he does that again now, too.

The funny thing about parenting a child with developmental special needs is that although I know I am a part of his development, I can't explain why one day he didn't have it and the next day he does.  There is rarely an "ahhh!" moment when it all just clicks for him.  For nearly a year I have spent a portion of nearly every day working on color matching with him, and it usually ends with me privately freaking out that my 4 year old is never going to be able to match colors.  And then one day, poof, he does it no big deal.  Then again, I suppose that is how most kids develop; his longer times between skills just make it seem like he is developing different than other children, when really he isn't.

He's just marching to the drum beat that works best for his mind.  Which, if it was a red drum on a small laminated square, he would now totally match to the large red square. 

No big.  He's got this.  Just like he will get the next skill and the next skill and the next.

I'm lucky, so very lucky, to get to witness this sort of development.  The lows are low when parenting a child with special needs, but holy heck, the highs are high, high, high.

Mama Bear Doesn't Care About You

Today Little Bug walked up to watch a child at the children's museum play with an activity.  He gently reached out to touch the toy boat and the child, who could not have been more than 4 himself, swatted his hand away and yelled "No. You are a bad boy."

Oh hell no.

In the back of my head, my mama bear roared, but out of my mouth came a smiling, sweet, quiet mama voice that cooed "Oh, he isn't a bad boy. He is a good boy."


Because he is, and he was being a good boy.

The kid's response was an even more aggressive "NO.  He is a BAD boy."

H.E.L.L  N.O.  Did I mention his mother was sitting right.next.to.him and never so much as flinched.  What do you do with that?

At that point, I was done.  I calmly repeated that he is a good boy and told Little Bug we were moving on to another activity.  I kept a calm, smiling face at all times.

And that mother had the NERVE to glare at ME as we walked away.

As I later recounted the tale to Appa, he asked if I said something to the horrible mom.  And the fact is, I didn't.  Here's why:

I try to use social interactions to teach my kids how to act, like we all do.  In this case, my only concern was for Little Bug.  I wanted him to know he was not a bad boy, and everything I said to that little boy reinforced that to Little Bug.  He isn't a bad boy, and it isn't acceptable for anyone to call him that.  But I wasn't going to say anything to the mom because I don't want Little Bug to learn that escalating a problem is a good idea.  She didn't say anything to me, so me saying something to her would have been an offensive move.  I want Little Bug to feel comfortable and calm enough to remove himself from a situation if he needs to.

But most of all, I don't give a crap about that mom or her kid.  It's not my job to teach her kid manners or to teach her how to raise a child to not grow up as an @hole that no one likes.  It is my job to teach my son how to be confident in himself and his ability to protect himself when he has to interact with said @holes.

I am his teacher and I reserve myself for him and him alone, and that is her and her son's loss.

PS: Screw you, lady.

Comedy

"Wear my socks in the bathtub."

[Cue laugh track]

Three nights ago Little Bug made what I have deemed to be his first official joke.  Sure, he's teased before, but he has never intentionally verbalized something he knew to be nonsensical with the expectation of getting a big reaction.

But 3 nights ago, as he was sitting on the toilet, naked but for his beloved electric green reindeer socks, he looked me in the eye, got this sneaky twisted smirk on his face, and told me he was going to wear his socks in the bathtub.

Of course, I acted MORTIFIED and then laughed and laughed.

And thus began Little Bug's new life as a comedian.

Nearly every hour of every day he gets that same smirk on his face and busts a line.  Because he is a 4-year-old boy, his favorite jokes all have to do with poop and pee pee.  Naturally.

"I pee pee in the bathtub"
"I pee pee in Little Bro's bed."
"I poo poo in Daddy's car."
"I poo poo in my underwear."

Why bother with new material when your routine works?

Every time he looks for it, the big reaction from us.  And we laugh and laugh and laugh, and it is clear that he feels like the smartest, most clever kid around.

I'm not a stand up comedy sort of gal, but I'll buy tickets to this show anytime.

The Frame

In 2009, I bought a "Santa&Me" frame in my expectant mother glow.  The following Christmas, that empty frame broke the dam on some emotions I had bottled up, and it wasn't pretty. 

This year I filled that frame with an epic "Santa&Me" picture of Little Bro and his BFF.  I smiled so wide it nearly hurt every time I saw those two frames proudly displayed. And today, I smiled peacefully as I packed up the rest of my Christmas stuff, because I packed away not two, but three frames.

Little Miss needs a picture frame to match her oppas, naturally.

I don't know when that frame will make it out of the wrapping, but I can guarantee it won't be this coming year or even the next.  And that timing is what is ideal for our family, so the Christmas futures where that frame will be tucked safely away don't make me sad in the slightest.

But the fact is, Little Miss is in my heart in a way she has never been before. She's not just a dream anymore, but a real future, and we are looking for her, waiting for her, hoping for her.

With Little Bug and Little Bro, we (I) made big announcements all the time.  We (I) wrote blog posts about the smallest details and the most insignificant of steps.  This time around, due to a couple of factors, the biggest being the long and completely unpredictable time frame of referral and travel in our specific situation, we (not just I) have decided to keep Little Miss' process low key. Of course, me blournaling this is hardly keeping it secret, but that isn't our intention, and everyone that should know already does.  Rather, we've done the adoption-OMG!!!! thing for so long that it's time to just live our lives and celebrate the big things when they eventually come along.  I promised Appa I would be less crazytown this time, and I intend to hold to that.

However, I really just need to acknowledge the fact that we are on our way to our daughter, and that we are so very happy and excited about it.  And someday, when she reads this amidst the pages and pages devoted to her brothers, she will know that her adoption was just as special and just as exciting and joyful.

Buying that frame when I knew full well that it wouldn't be used for years was my attempt to put that out into the universe.  I won't have a closet filled with dresses and bows for quite some time, but in my crawl space a frame will be waiting to be filled.  When I packed it away, I packed it away with a smile and a wish in my heart.  It won't be filled for many years, and I am okay with that.  The fact that it will be filled is the most important thing.

Little Miss, when you someday read this, know that you've been loved and hoped for from the beginning...just more in our hearts.

The Evolution of a Number

A little over 3 years ago I sat in a cold therapy clinic with my precious Little Bug and was handed a number that was meant to define him.  And in a lot of ways, it defined both of us for a long time.  That first number really cut deeply, and that experience has always stuck with me as one of the lowest points in my journey as a special needs mama.

Over a year ago I got another number for Little Bug.  There must have been more in between these two, but these are the two numbers that I remember.  Again, it cut deeply.  But unlike the first number, I didn't let it define me as much; in fact, I think it actually spurred me into bigger, bolder action.

Today I clutched my Little Bug's hand as we marched back into that first clinic room for a new number.  I admit, my eyes went immediately to that mat where we first started this number game and I got a bit panicky.  I didn't want my amazing son in this room.  I didn't want this to be the place his development and progress would depend on.  I didn't want to have this woman (who I can't be sure, but very possibly was the same woman who evaluated him 3 years ago) look me in the eye and give me a number meant to define my son.

But if my son has taught me anything over the last 3 years, it's to be brave, suck it up, and jump into the hard stuff with a smile.  So I did.  And he brought me to near tears over and over today as she put him through the physical evaluation because he ROCKED it.  Every skill he had was busted out in fine form and at the end of our eval, I knew no matter what number she gave me, it wouldn't matter.

This kid is a fighter.  And no matter what number she threw at us, the knowledge that he was going to continue to progress and make strides and hit milestones was going to be way more important than the number on his assessment.

For the record, it was 30 months.  Little Bug is 49 months old.

She gave me the number and paused, waiting perhaps for some sort of reaction that she didn't get.

"This isn't anything new to you, is it?"

No.  It isn't.  But unlike the last couple numbers, this one didn't cut deeply.  It stung for a moment, but then rolled right off.  Because this time, the number isn't going to define anything about any of us.  Little Bug has proven that he won't let anything stop him, and I have total faith in him.

I have faith in him.  Something that only recently I have come to see is a huge part of this journey for all of us.

I don't see a child 18 months delayed.  I see a child who battled his way up ladders until it became easy for him.  I see a child who regularly threw up on himself and then with tears in his eyes went back for more sit ups.  I see a child who trips over his own feet a couple times an hour and always, ALWAYS gets right back up and starts running again.  I see a child who wasn't strong enough to grasp a toy in his hand who climbed up a tube slide today before scaling a rock wall.

The number has evolved for me.  It's really no longer relevant.  They can write 30 months on paper and throw it around in meetings all they want, but for Appa and I, it's clear the number game has changed.

Thirty months means nothing to me.  I have a 4 year old, and he is a strong, positive kid who is working hard at reaching his max potential.

Tonight, I am proud.

WWTD

It seems like a no-brainer: teach you kids by example.

But sometimes I forget that it extends past the basic "please and thank you" or sharing to those more abstract (and bigger) life lessons, like how to deal with stress or anger.

I am working--hard--on patience.  I used to think I had a ton of it, but since I started staying home, that patience has worn thin.  I'm still trying to process why this is, but the fact remains that I am more apt to raise my voice or immediately punish than I was a year ago.  Although I don't think there is anything wrong with raising your voice at a 4 or 2 year old who is beating on their brother, trying to ride their push car down the stairs, or continuously trying to unscrew a lite light bulb from a lamp, there are other times when I can tone it down, and I know it.

I'm trying to focus this week on thinking about how I want my SONS to react in situations of frustration and anger.  When their little buddy knocks down their block tower, do I want them to automatically scream "NO."  Do I want them to glare at someone who talks flippantly to them?

What Would THEY Do?

If I continue on my current status quo, what will my boys do when faced with similar emotional stimulants?  If they see their mother going for the "NO" or no-mercy time out right away, they are going to learn to behave that way themselves with their friends/family/future spouses.

And when I play back my behavior sometimes, it definitely isn't behavior I would wish to see come out of my precious, tender-hearted sons.

My mantra for the week: WWTD