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.