Monday, May 19, 2008


i feel guilty having written about the sleep deprivation today as if it's about me...

i appreciate the good wishes, off-blog emails, and other concern people expressed, and i get the feeling i sounded like i was in my pity party mode, eliciting concern. not what i meant to do. and, i should have said, this morning's blog wasn't really that much about autism.

the rooster had years of not sleeping for all kinds of developmental reasons, but also once we discovered melatonin several months ago (no thanks to our pediatrician; ugh) those subsided. what persists are his chronic health issues that also keep him up.

i've been so worried about autism that i guess i don't really write that much about our boy's health in comparison. but breathing, which most of us do without reflecting on it for a moment, ain't always easy for our rooster. last night he struggled. i didn't resent a moment of helping him. i hope my blog of this morning didn't sound like it did. i cuddled and reassured him, propped him up, wiped his nose, stroked his hair, and when he would sleep for a patch or two, i stayed awake longer watching him, brainstorming ways i could help. maybe a glass of water? maybe sleeping on his side?

yes, i am fried. totally fried. but the frustration i sometimes feel about it isn't there, and i didn't mean to sound hostile, just worried about how to survive this gargantuan fatigue. we really look like total crap for a very good reason (that's why they call it beauty sleep); the sleeplessness makes us physically ill sometimes. but instead of blogging about what makes me sick, i should have blogged about what makes the rooster sick. that is what is more important.

oh, sure, there are some things we could consider doing about the rooster's respiratory issues, most of which are surgical, none of which have any guarantees, all quiet painful to him. we tried that road and found no progress. and there are plenty of things we ARE doing about it... he spent two years on different kinds of nebulizers, as often as 4 or 5 times a day. he tried claritin, veramyst, benadryl, you name it. we saline his nose at least twice a day. he has a humidifier every night, cleaned with vinegar daily. he has an air purifier. we moved so we could have all wood floors. we have been to 3 allergists. we have eliminated all gluten, dairy, wheat, and soy, and i think almost all yeast, from his diet. we don't use any chemical cleansers in his room and switched to natural ones in our house. we dust. he has hypoallergenic antimicrobial covers on his pillow and bed. we don't keep stuffed animals in his room. we keep him as far from pollutants as is practical when living in socal.

our boy might have something called primary ciliary dyskenesia. huh? maybe the little hairs in his nose and chest don't filter germs and irritants as they should. but i don't plan to let him suffer through a biopsy just so i can put a fancy name to what hurts him.

there are some convoluted tangles in our story... the rooster never slept because of developmental issues, and lack of sleep impeded development, and he didn't sleep because he didn't feel well, and he didn't feel well because he wasn't rested, and...

he's four today, my little struggler. he got to wear a crown at circle time, and he got to choose boys and girls with raised hands to ask him questions. i happened to walk past his window in time to catch the whole thing, and hear a little too. no one, including me, felt really sure he could handle this birthday ritual unfolding in his classroom. he looked down sometimes, and he swung his feet furiously, but the first thing i heard him say after a little teacher prompting was, "I see G raising her hand!" And G asked, "What is your favorite food?" He called out, "MEAT!" (Too funny! Grapes are surely his favorite food, but he ate meat yesterday.) His favorite animal? GIRAFFES! (Went to an exhibit this weekend with giraffes!) His favorite toy? KITES! (You darn well better believe that one!) I don't think he coughed the whole time, either. When I picked him up from school five hours later, he ran as fast as he could toward me, crown still on, slipping over his eyes. "MOMMMMMMYY! IT'S MY BIRTHDAY! I got a crown and a card and a sticker and a popsicle! I had a good birthday!" definitely took the fine edge of the sharp fatigue for me.

but now i. am. going. to. bed.

wish us luck.


redheadmomma said...

Hi :) your blog doesn't have to be about autism, or all about the rooster, and you're most welcome to have a pity party. Lord knows I have. It's about you because you are the author - then the rooster - your family - your loving grandma. It's about your life.

I think we readers want to see if there's something we can suggest you hadn't thought of - like making sure hubby and you both took turns on the up-at-night thing, or that naps were required in your house when y'all got home from work. And you've talked before about the Peaches was the one that's up, not Rooster, so much - could you give us an update on who's awake at night currently? Sounds like the Rooster right now?

And Happy Birthday to the Rooster! He did *beautifully* at his birthday celebration in class!

Niksmom said...

Aw, that's a tough nut when your little guy has health issues. I soooo understand what you mean. And it is a hard balance to strike...writing about how WE as moms are doing while sharing how our kids are...yet honoring our children's privacy.

I completely understand, too, about not subjecting your son to invasive testing just to put a name to it if you can treat it "as if" anyway.

Sounds like he had a really wonderful birthday at school, though. THAT is priceless!

Enjoy that sleep; you'e earned it for sure!