Wednesday, June 1, 2011

4 am ...again

So this is the inevitable sentence I haven't yet posted.

Our oldest son, Aaron, has autism.

There is literally (yup, I DO mean literally) volumes I could write about his diagnosis, our experience learning about, dealing with etc and maybe eventually I will. But tonight... this morning, I only mention it as necessary info for the other inevitable sentence:

I don't sleep very much.

NOW, please understand. I'm not posting this as an invitation for sleep solutions or advice. I don't need a bunch of people telling me about regular bedtime routines or the miracles of melatonin...we've been there done that. And we got here. A place where I have just had to ACCEPT (a very important concept when dealing with the mystery that is Autism) that for some reaosn Aaron just doesn't need as much sleep--that he propably never will. And, so as long as we live under the same roof, which coudl possibly be longer than the 18ish alloted years we'll spend with our typical kids (please other "Autism mommies" (see below) don't get after me for not beleiving enough, cuz some days, especailly at 4am, I just tend to dwell in the land of probably Vs hopfully)...even I had to reread to make it back through that means while Aaron is in our home, sleep is just gonna be a thing that doesn't always happen. and it okay. Most nights.

It's the unpredictably, that kills me. Some nights he seems to "stock -up" and acts like a teenager when we try and drag him out of bed (usually the nights my baby decides to nurse non-stop, or my toddler has night terrors....OK parents, kids totally tag-team us don't they!?!?!?)
And then other nights, like this one, he just wakes up, at 3 or 4 in the morning, for the day.

Again please understand, I'm not writing this for solutions of even sympathy, but simply cuz it's my life.

In fact, I think I actually went through the grieving process, over the loss of my sleep.
Let's see.

DENIAL: Oh for sure. This was when I did welcome any all advice I could get on the subject. Read hoards of books. Thought this or that would FIX it. Tried to tell myself it was a phase.

the hardest part about autism for me (well at least in my mind at this momemt)..and again "Autism mommies" (as I call other mothers of kids with autism, although grammatically it makes no sense) are gonna tell me "It gets better" which I don't doubt, but still it's always there. I'll always remember being at my book club, where the grandmas in our group ( who i love!), all sweetly nodding their well-meanign heads, telling me, maybe even in reponse to me sharing some of my sleeplessness, "It will all be over in a blink. It goes by so quickly and before you know it they'll be all grown up." Grown-up yes, and I totally get the whole fleeting childhood truth they were sharing. But it still hurt. Because with Aaron yes, childhood will, like with our other kids, happen in a flash,and we'll miss the little fingerprints and tickling chubby toes, but with Aaron the... watchfulllness (is that the right word?) may never end. I know paretning, with it's attendant worrying, loving, caring, stressing doesn't end for any parent, but there is just less of this is hard to describe...less of an "OK, these young years are hard, so push on through, give it all ya got, raise em right, good job, off to college with you now" feeling when raising Aaron. I feel more to pace myself, to prepare for, and set a foundation of understanding for a situation and a relationship that is going to persist in our lives, indefinitably. ( I have a problem over explaining in my writing, and have to consitantly resist the urge to state the other side of things..i will try a resist and let that last paragraph just be what it is)

Huh, his sleep is totally this microcosm metaphor for his autism in general I'm realizing. When I get bent on changing it I find frustration , hopelessness; when I see it for what it is and embrace it, things get better (not always actually but they sure seem better). Ooo but we're jumping to the end. First...

ANGER: Oh boy did I feel that one. Still do some nights. Compound that with not enough sleep and you get pretty irrational! I felt like everyone else in the world got to sleep, and it just wasn't fair. Since then I have been privileged with the friendship of lots of other moms, some who regularlly sleep less than me, somehow ( in some warped way) this makes me feel better. Now, if only we could somehow coordinate our sleepless nights so we could chat on the phone, but for some reason 4am just never feels liek a good time to call:)

BARGAINING: Oh boy did I ever. In fact, I've come to reallize there is one prayer God does not answer. "Ppppppppppplllllllleeeeeeeeeeeeeeeeeeeeeeeaaaaaaaaaaaaaassssssssssssssssseeeeeeeeeeeeeee Heavenly Father just make this kid sleep"'s obviously sincere enough, although we also continually add the vain repition of "help us all to sleep well tonight", in to our evening family prayer too. So, I've had to think a lot abou why He doesn't answer. And I've had to just decide, it's because it's not His will. His will is for us to know and be like Him.(The Lord is up ALL night listening to and answering children's... prayers:)

There's a Christian song I heard once on the radio that i rushed home to google the lyrics too

The line that hit me?

What if a thousand sleepless nights, are what it takes to know You're near.

Yup, Heavenly Father knew for me, I needed some sleepless nights to reach out to Him. And I really have had some beautiful nights. Holding my son and feeling the Lord hold me....ACCEPTANCE.

(I skipped writing about the stage of depression...the very topic of not sleeping sounds depressing enough to me:)

And now I can just blog at 4am right?!?

To close I'd like to share a poem I wrote, on another sleepless night. It almost feels too personal, but when i think of things that I've read that have really touched me, I think what if that person hadn't shared that because it was "too personal". This blog format is an interesting one to me...we just put stuff out there. But I guess that is kinda what writing is: putting yourself down on paper, outside of yourself so others can see inside.

Muh! I'm not really that private of a person anyways:) So here it is:

(I posted the photo, cuz to get it you hafta know Aaron likes to play with my hair..A LOT!)

Thoughts on Aaron at 4 am

Through the darkness he seeks my hair

He does not pull

Still the resistance is crucial

Strands wound

bound by little fingers

bound by unknown laws

There is a must

a mysterious never yielding must

No control, no choice

but somehow controlled and chosen


but mostly just a driven need

Inexplicable, maddening

But then in another time he would be considered mad

would he not?

This perfect son of mine

Perfect—not in a striven for, sought for, fought for way

No that will be my path.

But a different more innocent perfection

One given

Granted—by mercy I suppose

Though we term it a punishment;

a prison keeping him from the elusive “normal”.

My own little Adam,

wandering, naked

apple in hand

Unaware that the rest of us live in

a fallen world,

that is still his garden.

Inexplicably, unexplused, exempt even

he remains


(get down from there)


(though the therapists try)

The rest of us exiled and him…


A cherubim and a flaming sword


Or are the unseen cherubim company enough?



Eever reaching,

ever touching

he weaves his mysterious soul

around my baffled heart,

as gently and purposefully

as he winds my hair

in and around his small deliberate hands.

And I let him

Because—he needs to?

or because I need him?

My gift.

My son.

A piece of my salvation.

My guide back to Eden—

Barefoot on our stony path

I hope it is only I that feels it.

Speaking of feeling things, I'm gonna feel this in the morning. My other two should be up in a hour...


Amy and David said...Best Blogger Tips

Chels, you are a SUPER mom. I loved your poem.

Jess said...Best Blogger Tips

Hey girl! Thought you should know that I'm becoming a regular blog stalker of yours:) I so appreciate your openness. 2 of my 3 kids were born with special medical needs. For some weird reason I feel like that creates a bond of compassion among other mothers like us. Although my situation is very different from yours, and I don't pretend to understand yours, I have compassion for you and pray that you can have the strength you need on a daily basis.

mbmcclung said...Best Blogger Tips

CHels... your amazing , your blog is amazing , your an amazing mom... AMAZING! is all i can think of! I love your blog, your have already taught me so much from it .. I always new you were a rock and an amazing example .. BUT WOW!! you blow me away! Thanks... your teaching me how to be a better mom!

PeavoyMom said...Best Blogger Tips

You were right to post your thoughts and your poem. I was deeply touched by everything you wrote, and while I have always thought that you were an amazing person, I now know that you are, and I also know that you are one that Heavenly Father is proud to call his daughter. Thank you for sharing. Thank you for being strong enough.

Crystal HW said...Best Blogger Tips

Thanks for sharing Chelsea!

You are an amazing person and mom.

Chancieoh said...Best Blogger Tips

Thanks to your blog Chelsea, I have a better understanding of what you are feeling and going through. I know what it means to the body to not have enough sleep. You have taught many that it can be done. The Lord loves you and knows you are there for your so.. I felt the love that our grgrandson has for you, through the touching of your hair. XXX

Amy said...Best Blogger Tips

What a beautiful poem Chelsea, thanks for sharing it and your thoughts.

Jennifer said...Best Blogger Tips

That poem deserves a million bucks.