Sleeping Beside my Angel

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Reza in bed with a sleeping Daddy.  Unfortunately, since I’m always the one with the camera, there are no pictures of me and him snuggling in bed!

Reza has slept every single night of his nearly 6 years beside at least one, but most usually both, of his parents.  He doesn’t always do much sleeping–I’ve written plenty about that–but when he does sleep, it’s cuddled in our bed.  (In my head I’m hearing Goldsmith crooning I don’t always sleep, but when I do, I prefer to cosleep…)

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While I think this has had an incredibly positive affect on Reza, it also has been a profound source of comfort and connection for me too over the years.  He always sleeps between my husband and me.  Occasionally he would roll to my husband’s side, so when my husband came to bed he’d sleep next to me with Reza on the far side.  In my sleep I’d reach for my son and he wasn’t there and I would panic!  So now my husband always moves him into the middle if he’s rolled too far.  It’s hard to explain, but I spent more than three years breastfeeding him through the night beside me, and now it’s been almost another three years just cuddling him.  At this point the association of sleeping next to him and a sense of peace and wellbeing is so strong.  I know he will need his own bed eventually, but I want to savor this special time while it lasts.

Gradually though, ALS has been elbowing itself in between us.  It started with little things.  It’s hard for me to grip the blanket and pull it over Reza and myself.  So he began rolling closer to his Dad, since he knew Dad could pull the blanket over him the way he likes.  My sweet husband solved that by tucking us both in under the blanket together.  Then I started using a splint to keep my fingers from curling at night.  This lost me the ability to use my left hand to rub his back or hold him.

More recently, I began needing to use a non-invasive ventilator (called a BiPAP) during the night to help me breathe while I’m lying down.  You wear a mask with it, and mine is a full face mask.  I’m mostly stuck on my back.  With the mask on it’s very hard to side-lay while wearing it.  This makes it hard to snuggle my little guy.  I also used to love laying my nose gently against his head, inhaling his sweet scent as I slept.  But now I have this big piece of silicon covering my nose and mouth.  I miss side lying with my arm across him, my nose buried in his hair.  But I still get to feel his warmth beside me, and now he reaches for me, holds my wrist gently in his little grip.

We did have one cute, funny thing with the ventilator.  One night, I was laying in bed and having trouble falling asleep.  As my husband and son drifted to sleep beside me, I noticed that both of them had synced their breaths with the ventilator breaths!  It creates a very soothing ambient noise, and it seems no one can help but sync their own breathing to it along with me!

Lately we’ve been discussing bed solutions.  Our mattress is on the floor with no frame.  Originally this was necessary because Reza would fall off a regular bed in his sleep and hurt himself.  But now it’s hard for me to get in and out of because it’s so low.  However I am not able to climb up into and down from regular bed frame heights.  I’m tiny myself, and with my weakness I can’t do it.  So one option is to eventually consider a hospital bed that would be able to go up and down as needed, and we could adjust elevation of my upper body or feet etc as needed for best positioning.  But if I go that route I will have to give up sleeping with my sweet angel, and my amazing husband.  And I don’t think I’m ready for that.

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The Notorious(ly elusive) S-L-E-E-P

Note: When you have a kid that doesn’t sleep, sleep is something to document.  So we have a bunch of sleep pictures of R.  This post will contain some of my favorites.  Enjoy. 🙂

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It’s 3am.  R is giggling and bouncing on his knees on the bed.  He pauses, throws his head back, gazes open mouthed upwards to something my eyes don’t discern, then laughs and resumes bouncing on his knees.  He has been awake since 11:30pm, after having slept just three and a half hours.  He will stay awake the rest of the night, and is still awake at the time of my writing this, 9am the next morning.  This despite taking enough prescription sleeping medication to “knock out a typically developing three year old for two days straight,” as R’s rather humorous but blunt sleep specialist put it.

When we first began to see sleep difficulty with R, his Developmental Pediatrician at the autism clinic where he is followed told us that Autistic brains appear to simply not require as much sleep as neurotypical ones.  But even given that reduced requirement, around his 2nd birthday, R began sleeping drastically less than is safe or healthy for a young child.

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It started innocently enough.  A bedtime that crept gradually later and later, lulling us with a sense of normalcy.  Until one day it occurred to me that he was going to bed no earlier than midnight, and that we didn’t know any other children that slept that late and had already dropped their naps as he had!  Then came the night waking.  He would wake in the middle of the night full of energy as if it were morning.  He would play for a while, and eventually fall back asleep.  When we first began to have concerns about his sleep, he was getting a total of about 9 broken hours per night.  At his age at the time, it was recommended that children sleep at least 12 hours.  We shared our concerns with his DP, who gave us the tidbit about Autistic brains, and advised trying Melatonin, an over-the-counter sleep aid that helps with falling asleep, but she was not overly concerned.  From where I sit now, I can see why.  I would LOVE to see R get 9 hours a night at this point.

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We did begin Melatonin, which helped with the length of time it took him to fall asleep, but it didn’t help him stay asleep.  As time passed, his sleep grew progressively worse.  He was sleeping from midnight to 2am, then staying awake from 2-6am, then sleeping 6-8am.  He was getting a total of 4-5 broken hours of sleep, and still not napping during the day.   He was two, and supposed to be getting 11-14 hours of sleep per 24 hour period.  After a few months of this his DP agreed that he needed medication for sleep.  We were referred to a sleep specialist and R was started on Clonidine, a blood pressure medication used off label to treat ADHD and sleep disorders in children.

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At first, Clonidine was amazing.  He was sleeping about 9 hours per night while on it, about double what he would get off of it.  We also found that it reduced some of his compulsive sensory seeking.  Prior to Clonidine, R had a compulsive need to run constantly.  He would run circuits around our block, over and over, throughout the day.  One day we decided to calculate his mileage, and discovered that at 2 years old, he was running more than 2 miles every day!  After starting Clonidine this reduced dramatically, down to 1/4 mile or less per day.  Yet his mood and energy level remained high.  He was not tired or slowed down, he just didn’t need to compulsively run anymore.

About a month after starting Clonidine, his sleep began to decline again.  The doctor upped his dose.  Two months later it began to decline again, and his dose was increased again.  This would go on to happen 3 more times over the next year.  Now at age 3, his dose is about 8x higher than it was when we started Clonidine (he was started on 1/4 of a tablet, and now takes 1.5 to 2 tablets per night).  During his most recent sleep regression, about 2 months ago, the doctor not only increased his Clonidine dosage to what he takes now, but also added a prescription for Trazodone.  With his Melatonin, Clonidine, and Trazodone, we were administering 5 pills total each night…to a 3 year old.  Have you ever tried getting a 3 year old to take PILLS, not liquid medicine, but actual pills?  Now imagine that he has special needs, cannot understand what is said to him, and due to his feeding disorder cannot tolerate any of the things usually used to disguise medication for children (applesauce, chocolate pudding, chocolate milk, juice, etc).  It is no easy task..

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Trazodone did not go well for R.  We would find that it worked great for about 3 days, and then seemed to accumulate in his system to where by day 4 we were starting to see moodiness and exhaustion during the day, like a hangover.  Days 5 and 6 would be absolutely miserable.  By day 7 my husband and I would both agree we just couldn’t give it to him that night.  So then he wouldn’t sleep well because he wasn’t getting the additional medication, but at least he was happy.  For a while we tried cycling the Trazodone- 3 days on, 3 days off.  But that had inconsistent results.  We finally decided it wasn’t worth whatever extra sleep he was getting and stopped giving it to him.  Sleep isn’t perfect right now, he has his all-nighters like last night, but he also has several good nights per week, and for now this is what’s working best for him.

Ahh sleep.. Beautiful, elusive, sleep.  One day we will catch you. 🙂