Our crazy schedule

Monday: Homeschool co-op practically all day, or it saps all the energy from the rest of the day.

Tuesday: Speech therapy for Ethan

Wednesday:  Physical therapy for Henry followed by Occupational therapy for Benjamin

Thursday:  Blessed, sweet Thursday.  No appointments.

Friday:  Bi-weekly educator therapy for Henry.


And we have more coming, fortunately and unfortunately.  Insane.

I wish I had something extremely profound to say.  Maybe one day when my world stops being so incredibly busy, I'll remember to say it.  (Or just remembering it would be nice, too.)  This is a picture of Ethan running through the house chasing Benjamin, and it is one of my favorites from this month.  He's two going on five in this picture.  He's dirty from head to toe, and that is a routine situation around here.  He's constantly covered in some kind of marker, paint, glue, or left over fragments of lunch.  (Or dinner, or snack, my word that kid eats all the time.)

If you've been following the blog at all, and I'm sure you haven't because no one reads blogs anymore it seems, you'd know that over the Spring/Summer, Ethan was sent to neurodevelopmental peds, and that he "failed" several portions of the MCHAT- maybe I didn't go into that much detail in the previous posts.  At any rate, he did, and the MCHAT is a screening tool that pediatricians use in determining if your child needs to see a specialist.  So he was sent to a specialist (same ones that B goes to), and she wanted him to have a few months of speech therapy.  This wasn't a surprise at all, and we had already begun the paperwork for EI to come out and do their own assessment and therapy.  The therapists are wonderful, but it takes several months for all of that to get rolling smoothly.  So after he'd had a few months of speech, we went back to neurodevelopmental, and they're really quite lovely people there.  Honestly.  But... when they say things like, "Well, what is your biggest fear concerning Ethan?"  And, "What do you think about autism?"  ... it just makes me cringe.  I mean, honestly?  Yeah, um, it makes me want to swallow up and die a little bit.  And I know, I KNOW, it's been years since we've been through all of this, and trust me, we are professionals, but nonetheless, it doesn't always make it any easier.  So, I just half-smiled and said, well, that's just the way it goes in our house.  She hands me more paperwork, and I know the routine after that.  Years and years of therapy and life gets better at 4 or 5.  And I hate to sound depressed about it all because that is not the complete truth.  I'm not happy about it, but not depressed- it's just life, ya know?  That's the way the cookie crumbles kind of situation.  Very matter of fact, I suppose.

But still, again?  Really?  So interesting how different they are, and yet the same.  Be on the look out for something profound.  I'm sure it's coming.

Faith and compartmentalizing

Did I mention that Ethan bangs his head all the time?  Like all the time?  Like fifty times a day all the time?  Okay, fifty might be an exaggeration, but twenty five is not.  This is one of the reasons we were sent to neuro-developmental a few months ago.  One of the many reasons.  Sigh.  It's the only reason for my sake.  I don't much mind the slow talking, the not pointing to things of interest, the lack of eye contact, the extreme OCD behaviors.  (Okay, that one does drive me crazy.)  It's the head banging that holds me back.  Holds me back from friendships.  Holds me back from wanting to take him to church.  Holds me back from wanting to take him where people will be present.  Holds me back from even wanting to see my family.  Holds me back from wanting to look in the mirror.

Because you see, he has constant bruises on his forehead.  I never understood parents who medicated their children, but I do now.  It isn't always a last resort.  And I'm not even sure that he's eligible for any sort of medication, but if there were, I'd do it.  Because every time he bangs his head, my heart breaks into a thousand pieces.  It's a stepping stone to different types of self-mutilation, and it breaks my heart.  Everything that I read just says they outgrow it, but sometimes they don't.  What do you do about that other sometimes?  Do you look back ten years and wish that you had done something more proactive when they just started?  I don't see anyone writing about that.  No one ever has answers for those types of things.

So we have to have faith.  It's easy to compartmentalize faith, I think.  Faith that Ethan will turn out as intended.  Faith that Benjamin will turn out as intended.  Faith that you'll have enough money to pay your bills?  Faith that you'll always have good health?  But faith that it will all turn out?  I'm still working on that one.

Sometimes in the midst of my crazy day (who am I kidding, it's morning, noon, midday....etc), epiphanies emerge.  I think that answers lie within the crazy moments because our lives are crazy.  We're some crazy, messed up people.  But concerning Ethan specifically, I left off with wondering why things happen.  And even more specific, why Ethan, with whom I had such great expectations, is who he is.  Or rather, why is he turning out to be the way he is?  I only wrestled with that for a few days, or moments within the days, and it finally hit me. 

It doesn't matter. 

God is bigger than our questions, our whys.  God is bigger than us knowing the answers.



God is bigger than us. 

Ethan. Oh, sweet, Ethan.

When E was 18 months old, we went to see the pediatrician for a well-baby exam.  The doctor seemed to think that Ethan was a typical boy, and was slow to talk as all of his other milestones were delayed as well.  (walking late, sitting up late)  He was a tiny bit temperamental, but it wasn't too obvious.  He was a typical toddler in all other aspects.  Then... we started to lose him.  Every passing month I could see it more and more, and while it worried me, I suppressed every bit of that down as Henry was coming soon and I knew I'd have a whole new set of responsibilities to add to my pile.  One of those situations where if you choose not to think about it, maybe it won't exist.  Or even thinking about it somehow gives it power to manifest itself into something real.  I remember shaking my head at parents like that. 

And even as I sit here and write about it, I'm not even quite sure how I feel, and what I should say.  I've spoken it aloud a few times to people who have asked me, but I really don't think that it's hit me yet.  So there we were, back in the neurodevelopmental pediatrian's office.  Pretty sure that I was having some sort of weird flashback.  Asking me the same questions that I've already answered once before.  Whereas some of the answers were different, most of them were the same.  Could I possibly be going through this again?  Say it isn't so.  Is it wrong of me to say that we had such high hopes this time around?  Not that we haven't accepted Benjamin as being perfect in every way, shape, and form- it's just that I was hoping for an easier ride this time.  I know it's normal to want your child to be normal...

And there is something about the second time around that makes it harder speaking it because it seems to be a reflection of us.  That the first time wasn't a fluke.  That it's something that comes from us that makes our children the way they are.  Sort of as if why can't we produce normal children?  In my heart I know that our children are made exactly the way they're supposed to be made, but this is of little comfort to me most of the time these days.  And as much as I know about psychology and how the mind works in grieving (so fascinated by that sort of thing), I know that this is a genuine part of the grieving process.  I'm just in the why phase.  Why do things happen the way they do?  I think if I could wrap my mind around the why, I could process the tackling phase and move on from there.  And now I'm chuckling at the thought of life being something that you could tackle.

So we were sent home with directions of speech therapy.  And of course a return visit in a few months where the inevitable awaits. 

I could write a post, or upload a video every single day on the funny things that Benjamin says.  Really, I could.  He's one of those kids that is just so funny, but yet doesn't realize it because he is so serious.  He has the most tenderhearted spirit that I simply adore.  So last week, we were up before the babies and it was absolutely beautiful here for June.  (This week has made up for the beautiful weather, I'm afraid.)  He was standing on one of the columns on the porch and telling me how it was okay that he didn't have on his shoes because the cement felt nice and cold on his feet.  He then talks about trying new things, and why it is important to try new things even if you're scared.  (What?  I suppose some things do get through their brains!)  So he's very quiet and he says, "Mama, you just close your eyes, and you jump."  And that's what he did.  I wish that I had a phone that had video (ahem, old iphone, forgive me) but I suppose I'll just have to keep that memory inside for it was too precious to forget.  Now, the funny part is that he has jumped off this platform about 3,000 times.  I didn't really understand why it was so scary for him until I looked at the picture- his shoes.  He's not a barefoot in the yard kid for the most part.  He's definitely a yard kid, but barefoot, well, not so much.  The moment was gone before I knew it and he was off doing something else completely random, but I am happy to have had shared the moment with him. 

Silence?

Have you ever wanted to say something, but didn't know how?  Or maybe you didn't want to say something just in case it came true?  As if speaking something gave a hypothetical situation a certain amount of power?  Or maybe it's not a hypothetical situation, and you're increasingly aware of it. 

Maybe one day you will have to say to people, "Yes, two of my children are on the spectrum."  Or maybe you won't, but we all have our own situations in which we don't want to talk about, or to share with anyone because the moment we do, our lives fall apart and we can't stop crying or grieving. 

Sometimes people make the awful assumption that I am quiet, or that I have nothing to say, but know that silence does not mean the absence of words.  It's just that I'm choosing mine carefully.