Attachment

The emotional attachment we feel to our babies and children is an interesting thing to contemplate.  We often see and hear in movies, TV, books, and in discussion all the varying degrees of attachment to newborns, and until/unless one has experienced it, it can be hard to really understand how it's possible to instantly fall in love with a new creature like a newborn.

I know I didn't really believe it at first either, but as Lori's pregnancy with Henry progressed and all the things we went through with it, I was ready to meet Henry.

The delivery itself was a nightmare (if you haven't heard it already, it's another long story for a different day), so when I finally saw Lori and Henry being wheeled back into the room, I was already an emotional wreck with what was going through my head.

The nurses handed Henry to me.


and almost immediately, he opened his eyes.  I saw a little Asian kid that I knew instantly was My Son.  And I completely lost it.  And of course, the nurse wanted to take a picture of that moment which was not exactly at my best, but I tried to keep it together as best as I could.  I felt like I bonded instantly with Henry.

With Evie, it was different.

I don't know if it was because her delivery wasn't as emotionally fraught as with Henry so I wasn't as bought-in to the stakes or what.  But when she came into the world and I held her, I didn't feel that instant connection like I did with Henry.

Sure, she's cute, tiny, and helpless, so naturally, I'm going to take care of her.  But it felt strange even at the time that I didn't have the immediate bond with her.

Of course, that took care of itself over time, and the phrase "daddy's little girl" is a very apt description of not just her but our relationship.
       
 

Henry was "My Buddy" since Day 1 -- hell, since Minute 1, really.  With Evie, it took a little longer to warm up.  I honestly don't recall anymore when that moment was, if there was any particularly defining moment or whether it was just a gradual build-up over time.

We didn't bond right away, but I think it's safe to say that it's not a concern anymore!

Language Development

On the one hand, it's thrilling to watch language and vocabulary developing in a kid. On the other, there's a bit of sadness to the loss of the cute baby language.

Evie's words were always very cute, but as her language skills develop, the Evienese starts fading away.

Instead of "duckfries," she can now articulate "butterflies." Her old "woppen" is now clearly "what happened?" Now her "eppepant" has clearly become "elephant."

We're thrilled for her language and speech development. We mourn the loss of her adorable baby-speak, though.

(She still has "applebus" for "octopus," however)

Thank You

While I have a few moments to spare, I'd like to thank all of our family and friends who came out to Sherwood Brewing last night for the Utica Unicorns/FXAM fundraising night.  Some of you traveled a great distance on a Thursday night to hang out with us, and that hasn't gone unnoticed (Dennis & Beverly!).  Our local friends, so many of you came out tonight and between the rush of people as well as trying to calm the kids' anxieties, it was a whirlwind.  It almost felt like a wedding reception, with the blur of activity, people, snippets of conversation, and pausing for a few seconds to take a sip or bite of something.

Adam, Bruce, & Curtis, thanks for stepping out of your comfort zone and giving Sherwood a try. :)  You guys completely made Lori's night, more than we can express in words.

FXAM crew, this evening wouldn't have happened without you.  You welcomed us into the fold, showed us that we're not alone, and even though we can't participate as frequently as we'd like, you're always in our thoughts.  We wouldn't have gotten as far as we have with the kids without your support and guidance, as well as just the occasionally well-placed "it's gonna be okay."

From pediatrician and dentist recommendations to even something that seemed as simple as melatonin, they've been completely life-changing in our house.  To be able to meet a medical professional whose first question is NOT "fragile what?"

And of course, this evening DEFINITELY wouldn't have happened without Sherwood Brewing Company and the old Alpha Team & regulars (Mary, Erica, Meridith, Rob).  Lisa, Ray, and Corey, thank you all so much for this and so much more.  We had to leave in a rush, so we weren't able to say hi & bye to everyone, or even see who came after we left.

But know that you are all loved and appreciated.  We feel beyond humbled and grateful for your love, support, patience, and friendship.

Woppen

Evie's newest word over the last two days: "woppen."

No idea what the hell she was saying or what it meant, until today when it suddenly clicked in my head: "what happened?" It must be it, because before, I'd just parrot it back to her, and she was clearly not satisfied.

Today, Lori and I both responded with "what happened? Well...." and then briefly explained what we were doing at that moment. That seemed to satisfy Evie, so by inference, that's what she meant to say.

Steps to Dealing With the Zoo

1. purchase annual membership to Detroit Zoo (because you calculated that two trips with a family of four will more than pay for the membership fee).
2. burn a vacation day on a weekday that your son has a day off from school because special-education schools need to alter their schedules and furlough days in order to continue providing services through the summer while adhering to the whole "days in session" thing (it's a K-12 thing; just follow along with me, if you're uncertain about what I'm referring).
3. pack everyone up into the van and head down to the Detroit Zoo on a Friday morning.
4. determine right away that you should have parked on Level 3 where the ramp is, because the kids freak out in elevators.
5. be thankful that you packed snacks in the backpack to stave off the hangry.
6. understand that the kids can handle about an hour at the zoo, and make your way with due haste toward the front entrance when they lose all coping ability at the back of the park.
7. be prepared for unreasonable wait times at the restaurant that you stopped at for lunch and determine that even 15 minutes is too long of a wait for a table. Leave immediately and go to a restaurant you know won't have that long of a wait for a table.
8. order your kids' lunches and a couple of extra-tall beers for Mom & Dad.
9. finish lunch, head home, dose the kids with Magic Sleepy-Time Juices.
10. Mom and Dad high-five each other. You just took the kids to the zoo and nobody had an unrecoverable meltdown.
11. think about going to the zoo again to see other things you didn't see the first time, but now armed with more information about what the kids can handle and how much time you have before having to pack it in and just GTFO.
12. use this information to plan other, longer trips elsewhere because we can't live shut in at our house for the rest of our lives.

Thanks, Evie

This Winter 2016 semester is winding down to a close. I have to attend one more class tomorrow night, and then next Tuesday is the final in another class. After that, my first year of grad school is done, and I have the summer off until September, when I begin my final year of any and all college ever again.

"Ricardo"
Cordoba GK Studio classical

But I have to thank Evie for one little thing. She insists that I play my acoustic guitar, to the point where she'll pick it up and bring it to me. She'll bat away at the strings on occasion but most of the time, she just walks away after I strum a couple of chords. But she makes me play it anyway.
You might have seen my recent project to clean up Madeleine (a very heavy-metal guitar, because it has pointy bits). I wouldn't have been inspired to do that had I not started playing again, and I wouldn't have started playing again had Evie not insisted upon it.
I started saving my allowance since the beginning of this year to do what I've wanted to do for a long time: buy an honest-to-goodness Gibson Les Paul just to be able to say that I own one (kinda' fell in love when we toured the Gibson factory in Memphis in 2007).
I don't intend to join any more bands or head out to jam nights at a bar. That's not in my lifestyle anymore. But call it a bit of a status symbol. And I was calculating about the end of this year that I'd have collected the cash to buy what I was looking at (and also proud of myself for planning the purchase with cash rather than credit). This weekend, I found a "blemished" item for about $400 less than its retail price, so I moved on it after thoroughly examining the shop's purchase/return policies and also exchanging messages with them.
Had Evie not demanded that I play, the LP might have remained an unattainable dream, and I wouldn't have thought to start saving part of my allowance every week. Or sell my bagpipes in order to generate additional funds for an instrument I WOULD play (the set that has remained in its case untouched since 2008, after I made the decision to return to college; see how all of this comes together?). The sale of the pipes pushed my savings to the point where I could move on the blem guitar.
So of course, to match the rest of the arsenal, it had to be the right color.

"Madeleine"
Jackson KE3 (standard D tuning*)

"Ty"
Conklin GT-5

This is a stock photo of what's coming:

"???"
Gibson Les Paul Studio T

It's entirely possible that I name this guitar "Evelyn," because she was pretty much responsible for this happening (and I'd have to use Evie's full name because there'd be no confusion then, since she has no idea who the hell "Evelyn" is anyway).

* Because standard D tuning makes it more metal, naturally.

Things My Kid Says

Evie: French fry!  French fry!
Lori: [hands Evie a muffin]
Evie: French fry!
Lori: No, baby, that's a muffin.
Evie: Muffin fry!

The Buckethead Kid

Years ago, Lori and I went out to dinner to Joe's Crab Shack, when it still existed at the Utica Park Blvd. location (the one by Dave & Buster's, the building which is now a Red Ox Tavern).  It was a warm evening, though not hot so we were wearing light jackets.  I don't remember if it was spring or fall.

But it was a busy enough night to where we were waiting outside, along with other parties who were ahead of us.  Among one of those parties was a little girl who was keeping herself busy while her adults were preoccupied.  She was maybe 8, 10 years old.  She caught our attention because she was indeed keeping herself occupied during the wait.  She was examining the fixtures, the landscaping, and then was clearly wandering around, making up games in her own head.

I don't remember the exact circumstances anymore, but for some reason, she had a bucket.  Maybe it contained crayons or other things, but either way, she had one.  And at some point, she ended up wearing the bucket on her head while wandering around aimlessly, waiting for a table.

We thought that was awesome, because she did so without any sense of foolishness or attention-grabbing.  She just did it because she wanted to.  None of her adults paid her any heed.

Based on her actions, her body language, and the degree of self-assuredness she projected, we immediately knew this girl was a dork.  And that is meant in the highest of complimentary ways.  We chuckled and remarked to each other that one day, when we have kids, we would be blessed to have our own bucket-head girl.

That girl is Evie.

Evie is our bucket-head girl.  She has zero qualms about looking or acting silly, because quite frankly, she doesn't know of such a thing.  Granted, she's young enough to where she hasn't been broken down by the system, telling her "don't be so silly," "stop acting foolish."  But maybe that's the point.  To her, silly is fun.  Foolish is a good thing, because it makes the adults in her life laugh.

Where is the harm in playing?  What is to be negatively impacted if one is walking around with a bucket on one's head when one is harming no one, or disrupting another?  Social norms are, of course, a complicated set of circumstances and rules.  But when one is a child, why not?

Evie has put all sorts of objects on her head, and on our heads.  She checks out her reflection, and smiles.  She poses.  She admires herself, wearing a basket on her head.  She talks on a stick of cheese as if it was a cellphone.  She has conversations with her stuffed animals.

She's two. She hasn't been told that she's being silly, or foolish.

In that, we adults could learn something.  Within the social norms, we've, in one way or another, been told to stop playing.

To take the buckets off of our heads.

Stop having pretend conversations through inanimate objects.

That gap between the couch and the end-table is not a secret passage to a mysterious land.

There is no hidden world inside the bookshelf, so stop climbing in it.

Maybe this is why we're so angry with and mean to each other on the Internet.  We've been told to stop playing so often in our real lives that out of envy, we want to make sure others don't have the fun we can't have.  Because when they do, they don't seem to grasp the gravity of the horrors of reality.

But who says we have to?  Why do we have this need to memorize the horrific details of every current event, whether criminal or merely salacious?  Why are we not allowed to play?

What happened to our buckets?

Evie has hers (even if it's a cheap vinyl basket).  I hope she never loses it.

The Kids' Words

Evie:

• Naan, choo, swee, DOOHHH! = one, two, three, GO!
• Ee efchee ay chai chi = E F G, H I J
• Woh woh = any four-legged animal, regardless of whether it's a dog or not
• Appo = any round red fruit or vegetable, though color is sometimes optional
• Up down = pick me up or lift me higher
• Thit thit thit thit = Lucy, sit, before Dad puts your food bowl down (she's heard me tell Lucy to sit in this situation)
• Sesedo = Super Grover
• Sti = veggie stick
• Sheee = cheese

Henry

• *headbonk* = I love you
• AI!!! = See you later, I love you
• *grab hand, drag to spot in basement, squat down, pat floor* = Please lay out this quilt, then lie down on it so that I can lie on the floor next to you and play with my plastic ball.
• *wave off with hand as someone approaches him standing at his basketball* net, then look toward the person he wants to play with him* = No, I want Dad to play basketball with me.

Henry has more pantomimes and physical actions to indicate what he wants.  

* By "basketball," I mean this thing:

See Whoa Whoa

Henry's situation has set the bar of expectations rather low for Evie, which I've mentioned before as being both a good and bad thing in my other posts.  So the fact that she's pointing at objects and clearly having conversations that only make sense to her rather than just meaningless babbling noises is significant, but also new territory.

While the words and sounds she's using are meaningless to us, they clearly have some sort of definition and structure in her mind because of how specifically she's using them.  So in other words, she's learning to speak as a typical child.

Our hearts are swelling at this prospect.

She has a few words and phrases now, and it began a while ago with her learning how to sign "more," and use it properly in context. She uses that one interchangeably between "more" and "again," but I suppose the intent is still the same.

When she hears "peekaboo," she responds with "I see...."

When she sees (and wants) either an apple or tomato, she says "appo" (she doesn't actually want to eat it.  She just wants to play with one, which makes me fearful of one day walking into a room covered in squashed tomatoes).

Occasionally, when she wants out of the high chair or bathtub, she says "awdun."

And the one that kills us is one that I just managed to interpret, although she's been saying it for at least a week.  She would say something that sounded like "see whoa whoa."  We only caught the "see" part, so we figured it was just her exploring various ways to say "I see it."

No, she's actually referring to dogs.  And here's how I made that connection.

I just happened to notice coincidentally that she was including the "whoa whoa" consistently after "see," but not all the time.  So then I was curious as to what the difference was, and then it became clear.

Lucy.

Lucy was the common connection.  Which also explains why she would say "see whoa whoa" when my mother would take the kids out for walks and they pass by the house that owns a boxer who constantly runs up and down the fence, barking.

Evie is associating Lucy (the "see" part) with barking ("whoa whoa"), because that's all Lucy ever does.

"See whoa whoa" is Evie's word for dogs, because of Lucy.

Evie has words.

Too High or Too Low

The kids are both pretty dang awesome.  Both of them just thrill me to no end, despite how exhausting it is to keep up with them and also maintain adult responsibilities.  Henry is clearly the sensitive one while Evie is the adventurous one.  She has no qualms or fears about just exploring everything in sight, whether we want her in these crevices between furniture or not.  Henry is content to play and explore the objects around him and how they work.

She's going to be the "play in the dirt" kid

Evie would be pleased as punch to destroy them.

With Henry, we were rather spoiled (special needs aside).  He slept through the night early on (though that stopped recently), he was content to lie around or sit around in one place and contemplate the universe.  Of course, part of that was due to his physical limitations that didn't start resolving until about January/February of last year when he slowly grew strong enough to be able to stand then walk on his own.  But despite that, he seemed to be satisfied just playing in one place.

Evie cannot be stopped.  Her phases of rolling, belly crawling, then full crawling, then walking took barely just over a year whereas Henry was about 19 months old when he was able to walk with confidence.  Evie learned on her own how to get up and down stairs.  If Henry is quiet, it's okay -- that meant he was playing by himself, which was a brief and rare respite.

If Evie is quiet, it's cause for worry.

So when it comes to developmental milestones, we are unprepared for Evie.  For most of them, she's not only meeting them but surpassing some.  The only one she hasn't hit yet is speech, but we'll tackle that one later.  The point is that because Henry was and is so behind in many of his milestones, we just didn't know what it was like to have a more typical child.

For the average family, think of it this way.  Your first child is growing and developing as expected.  Speech, behavior, physical and cognitive abilities are all on track.  You get used to it, so when he's 5, you have your second child.  Then that second child turns out to be a second-coming of Mozart.  At 3 years old, she's composing sonatas and then investigating methods of safe-cracking (on the Internet while using a proxy so that the NSA can't track her), all with the self-control, restraint, and social development of a toddler.

Because of the difficulties we faced and will face with Henry's growth and development, and with his diagnosis, there was that requisite period of despondency and quite frankly, mourning.  The reality is that we mourned what might never be with him.  We lived in denial for a while, but eventually, we had to come to terms with the fact that Henry will never be "normal."

I even hate typing that, but that's what it is.

We're terrified about matters of succession; if something happens to us, who can take care of him?  We don't know.  He may surprise us later in life, but we can't rely on that.  We've come to terms with the fact that it's not realistic or reasonable that he'll study astronomy at the University of Hawaii straight out of high school.

In fact, we're not even confident he'd go to a traditional high school at all.

If he can one day go grocery shopping on his own as an adult, we would be over the moon.  That's the level of hope that we've had to adjust to.

But with Evie, because of her developmental track, we're cautiously optimistic that she'll be the one who's going to be more okay with life than Henry.  I'm sure she'll still have her issues, but we're less worried about her future than Henry's.

And that brings me to the point of the title of this post.  Because of the crushing defeat we felt with Henry's diagnosis, we're guarded and actually somewhat pessimistic about Evie's potential as a defense mechanism.  We don't want to let ourselves get too far ahead in terms of Evie's future lest those hopes get dashed even harder against the rocks.  And that can't be a good thing.

We end up being cautious not to expect too much of Evie despite our emotions, but at the same time, we have to be careful not to expect too little of Henry, because that's not fair to him.

But it's a hard balance to strike when you're caught in the middle of uncharted territory like this.

Neither of the kids are very physically affectionate in a traditional sense.  They don't cuddle, they don't come up for hugs, or just absently hold hands.  Both of them have tactile defensiveness, which means they don't like being touched in certain ways.  Their hands are particularly bad such that trimming nails is not just an ordeal but if someone stood on the driveway outside our side door and listened, they'd wonder if we were torturing and beating them for as much as they protest (Henry more than Evie; Henry screams and thrashes while Evie merely yells and cries...."merely," he says).

But recently, Henry has come up to me and asked to be picked up (in his own non-verbal way, of course).  And when I do, he simply melts.  He lays his face down on my shoulder and absently twirls my hair around his fingers.  And of course, my heart explodes.  I don't care if I'm already 10 minutes late in leaving for work.  I'll take that for as long as I can.  Evie smiles at me when I come home from work and greets me in her own unique series of grunts, babbles, and noises.

I know they love us, in their unique ways.  So admittedly, they're both surprising us in their development.

With their play, their interactions with us and lately with each other, I'm seeing two children who are growing on their own individual paths that are intertwined with us and each other.  Maybe not necessarily to the expectations of the rest of the world, though.  And while it's cliche to say that doesn't matter, sometimes it's hard because we're still a part of the world and we do have to interact with it.

We do have to answer questions about them and other people want to interact with these kids.  Other kids want to play with them, and sometimes don't understand why they're not talking or playing in a way that's expected of them.  In that, I worry less about Evie's ability to cope and I'm probably a little over-protective of Henry.

But again lies the danger of expecting too much of Evie while expecting too little of Henry.

And then I wonder if I'm overdoing that.  In my desire to protect them from the cruelties of the world -- especially toward anyone different, toward anyone with the label "special needs" -- am I instead doing them a disservice?  This is a rhetorical question, because that's part of my homework assignment as a father.  I need to figure out not only what they need, but what my responsibilities are.

So just as kids don't come with instruction manuals for parents, there's at least some kind of Ikea-like diagrammatic guide for neuro-typical kids.  What we have for special needs kids is an instruction manual for assembling a Whirlpool refrigerator that was included in the package for a suspension system for a Ford F-150, written backwards with French words using the Greek alphabet.

Yet somehow, this suspension system is somehow keeping our beer and hamburger patties cold.  And we don't know why or how, but we'll take it.

How much room to fly do I give Evie?  How much of a cushion do I provide Henry?  Or do I reverse that?  How much of a cushion do I provide Evie and how much room do I give Henry to fly?

Or how much room do I give both of them to fly?  And what do I do with myself when/if they keep flying?  Should that "if" have even been in that sentence, and if not, how can I make myself comfortable without it?

I got this iPad for Evie because she showed an aptitude for technological devices. Yet Henry's the one who surprised me with his interest and ability with it.

It Begins

I haven't posted much recently, because there hasn't been anything major in the development of the kids beyond what we've posted on Facebook.  Most of it has been Evie growing from infant to toddler, and Henry....well, Henry's development is as kinda' expected.  He does still surprise us with what he perceives and understands, but in other ways, he's still very much delayed.

Since the last write-ups, Evie has learned to pull herself up with support, then walk, then squat to reach an object on the floor, then stand up without support.  She knows her brother's name, because at her school/therapy sessions, when another boy named "Henry" is mentioned, she looks for him.  Her PT has mentioned that, because she's now on track for typical development, she is growing out of MISD's PT services.

Henry is getting taller and taller.  When we take him to public play areas, it's simultaneously confounding and heartbreaking.  For one, there are kids older than him but obviously smaller.  Which means that they think he's an older boy.  On the other hand, his intellectual disability means that these kids who think he's older can't comprehend why Henry isn't engaging with them like they think he should.

And how do you explain an intellectual disability to a 3 or 4-year-old?

Recently, we were supposed to have a meeting with MISD to discuss Henry's future after a psych evaluation.  But of course, in the comedy of errors, we and Henry's teacher and support staff are frustrated by bureaucracy.  The psychologist who evaluated Henry a few months ago hasn't completed the psych report because she got distracted by personal matters and even Henry's teacher hasn't been successful in trying to get a response from her.

We were supposed to meet with a representative from Utica Community Schools, but that got cancelled due to the recent cold-weather closures, and when that meeting was rescheduled, UCS never showed up.  Although, really, UCS has little motivation to participate because I believe the purpose of this meeting with UCS is to get their sign-off to release Henry as a student head-count to MISD.  This means that even though we live in the UCS district, they wouldn't be receiving the per-pupil foundation allowance from the state for him.

What we could get as far as information from his evaluation was that he's categorized in a broad sense as being around the 6 month mark in intellectual development.  As such, we have an idea of what his future holds.

I'd be lying if I said that I was totally okay with this.

Now, don't get me wrong.  We will do everything necessary to put this boy up in as comfortable a life as we can give him.  Because, holy crap, have y'all seen this kid smile in pure and unrestrained joy?  I love this kid with every ounce of my being.  I shudder for the day when he strikes out on his own, and the people around him look at him and treat him like.....yes, a "retard."

That hurts me, knowing that I can't protect him for the rest of his life.

Those of you who know Henry, who've known him since birth, who know us, know that the R-word is a terrible word because you now know someone else to whom it's being applied by an ignorant society.  We could argue semantics all day about the connotations and denotations of the word "retard" (REE-tard vs. re-TARD) and its context (we had this discussion already on FB), but for the sake of argument, just follow me along this train of thought and believe me when I say that it's not being used in its clinical context but rather in its vernacular form.

Therefore, in that context, please understand and abide by our wishes to stop using that word, at the very least in our presence.  And if you can, strike it from your own vocabulary and put it in the same bin you hopefully put "nigger" and "fag."

Lori had an experience recently when she took Henry to Burger King to play in the play area, just to blow off some steam.  Another boy was there, one smaller than Henry but older (and neuro-typical).  The other boy expressed frustration to Lori that Henry wasn't engaging in play the way he was expected to, and what's she to do?  She doesn't know this kid, and it's none of his or his completely disengaged mother's business to understand the ramifications of genetic issues, neurological disabilities, and cognitive/intellectual disorders.

All this kid knows is that Henry isn't playing the way he wanted Henry to play.  And Henry didn't really care or engage that much anyway.

In the special-ed circles, Henry is officially SCI.  For the layperson, that stands for "severe cognitive impairment."  This means that our 2½ year old son has the mental capacity and capability of pretty much an infant (for now).  We don't know what his development path will be, when he will achieve milestones, how he will behave in the future, none of it.

He may very well be another version of that young woman who was roughed up by Livonia police at Walmart.

Which also makes the well-meaning but ultimately empty assurances from others that "it'll be okay, kids will grow out of it" that much more hollow and actually a bit hurtful, because no, no it won't.  Henry will be going to a special school in MISD's system for special needs kids, and the age range of students there is 3 to 26.

Let that sink in for a moment.

26.

That's the boundary for government aid for schools to take care of kids with disabilities.  Henry will be going to this school for the next twenty three years.

Saying that "they'll grow out of it" just feels dismissive because it comes from a perspective that just cannot be fathomed by those who've never gone through this, people who just don't know.  Who will not have to go through this.  We who have children may joke that our kids won't leave our households until they're in their 30s.

We are living that possible reality.

By the time Henry outgrows the school, I'll be in my mid-60s.  I intend to be physically vital well into my 80s.  But good intentions can't mitigate reality.  And that reality includes the possibility that Henry will be relegated to an assisted-living facility for the rest of his life, or that I'll get taken down by something I can't predict or prevent.

And then there are the costs of such care.  I have to think of financial ramifications that "normal" families don't have to consider.  I occasionally have conversations with folks who don't have special-needs children, and the most common reaction I've gotten has been surprise and a little bit of guilt because I have to think of things they don't, and didn't realize were so significant.

So I hope you can understand why it's a bit irritating to hear "oh, it'll be okay, it'll work out."

All of these are, of course, those emotionally-charged thoughts that tumble around my head when I'm by myself.  Usually on the highway driving to and from work.  They're irrational, I know.  But I need these moments to lash out and blow off steam even if it's inside my own head, just to clear the air so that I can approach what needs to be done with clearer purpose and forethought.

I've spent the majority of this post talking about Henry.  But what about Evie?

So far, Evie is on track in development.....except in speech and vocalization.  Now, one could say "don't worry about it, it'll come in due time."  But how much of that is denial?  She has the same genetic condition Henry does.  And while Fragile X affects girls differently than boys, it doesn't mean that there's no effect.

I'm not sure how much of her responsiveness is due to her condition or just the fact that she's a bit more headstrong than Henry.  I don't know if she's just ignoring me or if she's not processing communication.  I lived with that denial with Henry at around the same age, so now I'm worrying whether I'm overreacting with Evie as a result of having gone through this with Henry.

For her therapy sessions, though, she's going to be moved to the group environment pretty soon.  She doesn't have much opportunity to play with other kids so this is a better chance in a controlled situation, rather than the indoor play area at Lakeside Mall.

Evie impresses us every day.  Her physical ability, her reasoning, and her curiosity are all things that we're just not used to, because Henry never did these things at the same age.  He still doesn't go down stairs by himself (although he's getting better at it as long as one of us is holding his hand).  We can't stop Evie, short of physically picking her up.

I bought them a wind-up lobster as a tub toy, and when it runs out, Evie will pick it and give it to us so that we can wind it up again.  If we don't respond right away, she grabs our hand, puts the lobster in it, then looks at us expectantly.

She plays independently, and she's the one where, if it's quiet, we have to worry.  If Henry was quiet, that was a relief, a brief reprieve in an otherwise whirlwind of nonstop activity -- because it's Henry.  Evie, on the other hand, is probably in the middle of destroying something.

And that makes my heart fill with happiness.

I do also catch myself feeling a bit guilty because I have to worry about Evie less than I do about Henry.  So then comes the question of equity -- with Henry's needs, am I worrying about him more at Evie's expense?  Am I inadvertently ignoring her because Henry requires more attention?  Or do I shower Evie with attention as compensation and if I do, am I ignoring Henry?

I know these questions affect all parents of multiple children regardless of any special needs or conditions, so I'm not looking for answers here.  Just more rhetorical statements than anything else.

But they are the ones that tumble through my head, the things I don't talk about at the bar.

No More Tears

Evie always, mostly without fail, gets up around 10-11 pm for one of her nighttime feedings.  We'd really love to wean her off of that habit, but it seems that no matter how much she eats for dinner, she will always wake up around 10 or 11, need a changing and a bottle.

Tonight, VH-1 Classic is playing an hour's worth of Ozzy Osbourne videos.  Clearly, this program is targeted at people like us, because it's a Friday night, after 11pm....and we're at home watching Ozzy videos.  Therefore, we're obviously not going out anywhere to exercise what other people may refer to as "a life."

And I'm betting that the programmers at MTV/VH-1 were also thinking "yup, this one's definitely for a diaper change" when selecting the videos to play.

So this was Evie's first experience with Ozzy.  She took down most of her bottle while watching intently the performance video of "Breakin' All the Rules."

(and now I'm listening to Lori muttering about how awful old videos were while I finish up this post)

More Cautious Optimism

Evie is now 10 months old and is bound and determined to walk on her own.  Despite the lack of balance, coordination, core strength....

No, she doesn't care.  She's gonna do it.  And she's gonna get mad when she can't quite get to where she needs to be when she needs to be there, and vertically.

At this same age, Henry was still doing the military crawl across the floor.  His FXS-related lack of tonus made 4-point crawling (hands and knees) difficult and certainly delayed his physical ability to stand.  When he finally did get up on his feet, he was still stumbling while suspended from our hands.  His PT encouraged us to help him walk by holding his hips instead of his hands, so that he'd develop both the physical and mental abilities to balance and coordinate better.  That was hard since that mean that we had to get down closer to the floor and scoot around on our knees.

Evie, however, merely uses our hands for balance.  She's learning how to use objects -- the couch, a table, her father -- to climb up onto her feet.  One day, I watched her calculate how to get from the exer-saucer over to her walker and make the determination that the distance was a bit much for her to reach over, so she instead reached for my face as an intermediary handhold.

Then, after being clawed and raked across the face by her tiny hand, I had to trim her nails.

I know every kid is different, and that we can't just think that because she's a girl and girls statistically are less affected by FXS than boys that everything's just going to be fine.  I can't compare her to Henry because that's unfair to both of them.  But there's still that hope in the back of my head, that maybe she will be okay.

There was, of course, that gut punch from my post in April about her evaluation.  We'd gotten her enrolled in EarlyOn, but apparently, she progressed significantly in physical development over the summer.  At the end of her spring sessions, we were to work on her ability to get from place to place on her own by any means necessary, whether by crawling, cruising, scooting, rolling, etc.

Within the first few weeks, she was on the move, doing the military crawl.  Maybe about a month ago, she started transitioning more toward traditional crawling (something Henry only started doing earlier this year strangely just after his ability to walk kicked in seemingly without warning).  She's transitioning from floor to seated position more frequently and on her own.  We were overjoyed when she started picking up food and eating it on her own, and that she's already started on solid "human" food (some; she still has a bit of texture issue).

It's hard to restrain the hope that she won't have as many developmental issues.

What is "Normal?"

There are several words that evolve into words that should not be used in polite society.  They may have begun innocuously in use to start but over time, grew to become unacceptable as the values of society evolve.

"Negro" was once a term to describe black people in a neutral manner (which may in and of itself not be entirely accurate, but the origin of the term is beyond the scope of this entry), but became highly charged and is no longer acceptable to use to describe African-Americans.

"Gay" was initially commonly used to mean joy or happiness, then associated with homosexuality, and then negatively to indicate something stupid or ....

"Retarded," which medically means stunted or having not reached its typical (or "normal") potential.  Negatively, it connotes an insult toward people with special needs, and is commonly portrayed as a school-yard insult, used among kids who are still trying to establish their own social pecking order.

These are some of the common examples of words that simply should not be used anymore because of their negative connotations.  However, even words that are typically interpreted as positive can also bear a little backlash of their own.  "Normal" seems to be one of those words.

What is normal?  Generally, it's the definition of the baseline of our environment, an average of sorts.  What is common.  As a baseline, there are elements or data points that can be above or below that line.  A person can have above-average athletic ability, average athletic ability, or below average athletic ability.  That average is defined by the commonly occurring traits within the sample population.  That sample population is whomever the observer chooses.

In most cases, we the observers choose the world around us.

We have ideas of what constitutes "normal," in terms of ability and behavior.  Anything that deviates from those norms become cause for concern or attention.  That concern or attention can either be helpful or harmful, regardless of the intent of the individual.  When it singles out someone as a result of that deviation, shining a spotlight on that person as if on display, that person is subject to more than regular scrutiny.

It can make a person feel different, outside of society, an outcast.  Not normal.  Not average.

Years ago, although political correctness is derided by those who typically display more selfish (or perhaps lazy) behavior by being obstinately resistant to altering their vocabulary, PC speech dictated that we should replace "handicapped" -- with its negative connotation of being inferior -- with "challenged."

"Challenged" indicated that a person was otherwise the same as you or me, but had an additional "challenge" to overcome, like that last field goal attempt or knocking down that 7-10 split in bowling.

However, even though the terminology changed, it didn't change the underlying condition it was meant to describe or that condition's connotation.  "Challenged" was still an indicator of a condition that's commonly seen as a disability or inability, in the grand scheme of things.  "Gay" is a more acceptable term for those of us who are more enlightened, but for those who cannot reconcile that homosexuality is real and deserving of equality, it's still an epithet.

"Challenged" has therefore lost its meaning as a positive alternative to "handicapped" or "disabled."  As an aside, I've even heard the term "differently abled," which even for me is going too far beyond putting positive spins on words and terms, and straight into pandering and patronizing.

So now we come back to "normal."  In the special-needs world, we don't like to call our kids "normal" or "not normal," whether it's in what they do, how they behave, what they comprehend, what they can do or say.  It implies that our children are deficient in some way, which is the same theory behind the R-Word movement.

We use "typical."  It described the situation in more statistical terms, rather than in terms of acceptability.  Going back to the introductory scenes in the movie 300, Spartan children who were found to be deficient in some way were discarded and left to die.  Despite its dramatization, it served as a clear delineation between such warrior cultures and ours.

Henry was not left to die at the bottom of a canyon.  Despite the fact that, and not to mince words anymore, he's not "normal."

Henry is a 2-year-old who is the physical size of a small 4-year-old.  His cognitive abilities, perceptions, and reactions are akin to a 6-12-month-old.  An impolite society might label him retarded, intellectually disabled, mentally handicapped, and so on, as a result of Fragile X Syndrome.

And yes, it did churn my guts to commit all of that to writing, even if it was to make a point.

So to rephrase it, Henry is not a typical kid.  He's in a different place, and he does have special needs as compared to other children his age.  And that variation from typicality is indeed a challenge, not just for him but for us as parents as we try to balance his needs given his physical and intellectual stages with the need to get him out into the world and not just closeted away inside our protective home behind intangible barriers.

We have to pick our battles when talking about our kids to strangers or passing acquaintances.  Most people aren't interested in Henry's development stage, so they may see what they think is a 4-year-old...then wonder why he's still in diapers and doesn't speak.  3- and 4-year-olds at parks and playgrounds want to play with him because he's the same size as they are, but they don't understand that Henry is much younger and doesn't have the social mechanisms in place to comprehend them.  Other parents and grandparents may provide well-meaning advice that simply doesn't apply, and I have to quell the urge to correct them or engage in explanation that would ultimately become uncomfortable for them (and again, picking my battles).

But then there's Evie.

Evie seems to be more on track in her cognitive and intellectual development than Henry was at her age.  When she was about 7 months old, she was already picking up small bits of food in her hands and putting them in her mouth.  Henry didn't start feeding himself until this year -- early this year, in fact. He was about a year and a half old by this point.  We'd actually been worried that because he was so far back in self-feeding, we had panicked paranoid visions of this kid never being able to feed himself (and then he surprised us by starting without any warning or lead-up).

Evie's desire to crawl and the comprehension of the mechanics of crawling is far ahead of Henry's equivalent stage in development.  She's eating solid foods much earlier then Henry did.  We had transitioned Henry to "adult food" fairly recently.  He began crawling on his hands and knees recently.  Evie is already slowly working up the strength and coordination to get onto her knees and support herself with her hands.

In other words, she seems more "normal" than Henry and that's where I find more traps.  First, I have no idea what a "normal" kid is or does.  So I have no frame of reference other than on-line resources and innumerable baby books, pamphlets, and brochures.  Second, I cannot jump too far ahead in assumptions that Evie is "typical," because that can be one foot into the pool of denial.  It can also lead to a tendency to focus more attention on Henry than on Evie because we'll think that Evie needs less of our help.

Words can hurt.  That cliche about sticks and stones is a nice theory and all, taught to children with the goal to toughen up and pick battles rather than getting upset at everything that comes along.  But that's not true.  Words can indeed hurt (and don't even get me started on that "I'm rubber, you're glue" nonsense), especially when used carelessly or without regard for context, environment, and even tolerance of your audience.

I struggle with the word "normal," because its use implies that my children aren't, or that they're deficient in some way.  And maybe in the eyes of society, they are.  Maybe we are fortunate that we don't live in Frank Miller's Sparta.  But for us, this is normal.

It's hard, yes.  But that's what we have, and that's what our baseline is.  It's often reaffirming and comforting because we get so caught up in our own world of special needs, FXS, possibly autism, when we find out that our kids' behavior is actually exhibited by countless other children their age (thus, "normal" or "typical" in a greater perspective).  We feel like we're constantly doing something wrong....but then we find out that every parent feels that way.

This seems to be our "normal."

Research Study

This week, we met with a research scientist and her graduate assistant who traveled up to Michigan from South Carolina to observe the kids and interview us.  They have been conducting research into Fragile X Syndrome and have a need for volunteer subject families.  We found out about the project through our local Fragile X support group, so a few months ago, we made contact with them.

The first thing I suppose I should mention is that there is no actual treatment for the kids to be had here.  This wasn't a medical evaluation or a "check-up."  This was pure science.  We're not going to receive a prescription or a magic pill to make their FXS go away (wouldn't that be awesome?).

What this does enable, though, is more research, data collection, and analysis so that future treatments can be made possible.  While we may not benefit immediately or even in the near term, this aids in the effort for long-term results and conclusions.  And who knows?  Maybe our kids are the trigger or that last piece of the puzzle to help make that pill that makes FXS go away. :)

The experience was similar to the kids' evaluations at MISD for their early-intervention programs -- lots of questions and evaluations to determine a baseline for their development and abilities.  That was rather emotionally draining, because it shined that spotlight again on where the kids are versus where kids who don't have developmental or cognitive disabilities are at their respective ages.  But, they needed to know where the kids are in order to gather data and conduct observations, so we had to just buckle down and do it.

What was interesting was that their research apparently has a shortage of girls in their studies that fall within the age brackets that they need, and Evie was the perfect subject.  Near the end of the year or next year, they want to do a follow-up with her, and we're not sure yet whether that means they're coming back up to Michigan or whether they're going to fly us down to South Carolina (depends on their grant funding).

Nonetheless, it's both exciting and scary.  It's exciting that we get to help with Fragile X research in the hopes that future children and families can benefit.  It's scary too because it also means that it's all the more real.  Then again, I suppose one wouldn't know it to just look at these guys:

A Big Kid

Today, after torturing our poor boy with a visit to the otolaryngologist to check on his tubes and then subjecting him to a haircut, we took Henry over to the play area at Lakeside Mall to chill him out.

Though in reality, as soon as we left the haircut place, he was fine.  However, we'd never seen him rage THAT hard before, to the point of clenching his fists and trembling in pure and utter emotional meltdown.  Anyway...

There was an older boy who was playing with whom I presume was his younger brother.  The younger boy was interested in playing with Henry, who was having a ball walking between Lori and me.  Henry also occasionally veered from his path between us to go exploring on his own (!!!! MILESTONE !!!!!).

On those explorations was when the younger boy would approach Henry to get him to play with them.  But Henry being who he is just walked away and continued on his own path.  No big deal.

What I did notice, though, was that younger boy -- whom I estimated to be about 3 or 4 years old -- was maybe only a half an inch to an inch taller than Henry.  That was quite a shock to me, but it also probably explained why the younger boy was hoping the Henry would be amenable to playing with them.

He likely thought Henry was the same age.  And that's not even getting into the whole "developmental vs. physical age" topic in my own head.

Today was also Evie's 6-month check-up at the pediatrician (and on a side note, we found out that the doctor we really like at this office is leaving in July...hopefully, she's staying in the area and not, say, opening her own practice in Tennessee.  But she has a unique name, so I'm sure the Internets will help us in tracking her down).  Evie is still in the 75th percentile in height and weight.  Henry was in the 95th for height while between 50-75th for weight, so Evie may be big for her age but she's proportional whereas Henry is tall and skinny.

And yeah, just grasping his little noodle arms while he's walking, I'm harboring some secret fears that I'm going to just accidentally snap them like kindling.

Our 2-year-old is the size of a kindergartener.

Two Minutes

Two minutes of Evie and me wandering around in her carrier while she tests out her face and her voice.

Knew It Was Coming, But...

...it doesn't make it any easier to hear confirmation.

I have to admit that I've been deluding myself.  Deluding myself into thinking that Evie would be okay, that she'd beat the genetic odds and have nothing to worry about...maybe a bit of shyness and difficulty in math, but otherwise totally typical and average.

She went for an evaluation today, and the analysis was that, at five months old, she's at about three months in cognitive and physical development.  That was a bit of a gut punch, I have to admit.  I was really, really hoping that it would come back with a near-dismissive "pheh, she's FINE!  Why are you even here?!"

I really wanted to hear that (I wasn't there personally; I only got the message afterwards).

The optimistic view would be to fall back on the "all children develop at their own pace" cliche.  But we lived through that with Henry already.  And denial can be a powerful defense mechanism to protect oneself against news one doesn't want to accept or acknowledge.  Henry needed help and he's getting it, but it's a slow battle and it certainly hasn't been easy by any stretch of the imagination.

The prospect of repeating it with Evie seems daunting right now.  It was that reason that made me wish and hope that Evie would be the one we didn't have to worry about.

But then that brings on another issue in that if Evie was the one we didn't have to worry about, would we inadvertently neglect her in favor of caring for Henry so much?  I often find myself getting hauled off by the boy in his next quest to ramble face first through the kitchen and front room, while Evie lays by herself on the floor or in her bouncer seat.

There are times when two of us adults are wrangling Henry while the third is preparing dinner....and Evie is left alone.  And I feel a crushing guilt when I see that.  I think that may be a contributing reason to why I've gotten so attached to the carrier harness thing that I stick her in so that we can walk around together while my hands remain free (I've eaten sandwiches above her head while wearing it...I used a plate!).  Henry complained quickly when he was put in it, so I only used it once with him.  Evie doesn't complain so she goes in it as often as possible.

And of course, then comes the snowball effect of "if I start paying more attention to her now, is it because of equity or because she needs the extra care now as well?" and round and round I go in my head in a self-defeating circle of rhetoric.

So, Evie's therapy sessions begin next week and like Henry's, they'll go up to the end of the school year.  I won't get to see her awake today because it's nearly the end of this winter semester for me. The guys in my group project wanted to meet early before class to finalize our presentation, so I'm off to school without stopping at home.  That makes me sad, but it's all for the greater good, right?  All to improve my future employment prospects and chances, right?

Quick Drops

Not a long, poignant novella this time.  Just a few quick hits.

Last weekend, Lori and I took the kids out to Somerset Collection just to get out of the house for a bit.  Evie ended up falling asleep in her car seat, and Henry did well in the different environment.

While Lori and I stopped briefly for a late lunch, we gave Henry some small pieces of chicken from Lori's order.  And to our great surprise and delight, he didn't choke or gag on any of them.  He actually ate Real Food!

When it was time to leave, I had him stand on his own while I put his jacket on him.  Lori began walking away with the stroller, and Henry, instead of raising his arms to be picked up, started toddling off after her.  Not just that, but walking without holding my hand.  Lori kept looking at his reflection in the store windows and there he was, just following behind her while I walked behind him to catch him if he stumbled.

We tried to put him back in the stroller when we got to the exit, but he wanted to keep being held.  So I indulged him there, but we gave him lots of hugs and praise.

Yesterday was some more tummy time for Evie.  She actually managed to stay in that position for about 3 minutes before she started complaining.  Not just that, but she did her best to lift her head to look ahead of her.  Still no "mini push-ups" yet, though.