Sleep Loss or Why I’m Now 50% Gray

When doctors, therapists, experts, and books talk about autism, they talk a lot about communication.  They explain unusual play, stimming, repetitive behaviors, developmental delays — in short, everything they can see and maybe help with.  That makes sense. During evaluations and therapy, these are the behaviors or lack of behaviors they confront.  Most of them kindly will, at some point, also remind you to take care of yourself and to seek out support groups or activities that will strengthen you as a person.  They are aware that parenting a child with autism can be highly stressful.

Here is something that isn’t talked about enough.  Sleep loss.  Not a single individual – including the developmental pediatrician – even once mentioned sleep irregularities in spectrum kids.  Not a one.  So, for the first couple years of his life, we had no idea how common sleep irregularities are.

And it’s irregular alright.  When you bring your newborn home with you, you expect to sleep in bursts.  You are aware – not prepared, as nothing can prepare anyone for what sleep loss with a newborn entails.  But you figure on going a couple of months getting up every hour or two.  Then you somewhat reasonably (depends on how lucky you are really) expect that will taper off to getting up once or twice a night until you are eventually blessed with an all-night sleeper.

Our daughter was pretty easy.  She followed this pattern, although she woke up once a night for a lot longer than we expected.  But we knew that wasn’t unheard of, so it was no big deal.

And then came Callum.  He was the sweetest, smiliest, easiest baby in all the world.  But this child woke every 1 to 2 hours every night until he was 2 1/2.  And, for the year before that, he often refused to take a nap — happily babbling away and joyfully shouting and jumping in his crib.  This, of course, put a serious dent in his big sister’s nap time and night sleeping as well.  We’re all affected.  If you take a good look at my family of four, you might notice the circles under our eyes at any given time.

And, although he is now known to sleep through the night some nights, we run about a 50/50 chance that Callum will wake up screaming, be inconsolable, and eventually become alert enough — to stay up for, oh say, 4 to 5 hours before getting sleepy again.  This means a lot of extraordinarily early mornings.  It is quite common for me to go to work at 7:30 a.m., having been up since 1 or 2 o’clock in the morning.

There are all kinds of supplements and alternative therapies people swear by.  We’ve tried some of them.  It didn’t help.  Our lives are made of up of randomly scattered nights of rarely full, mostly interrupted sleep or only a couple of hours of it. The thing is, as any ASD parents whose children have had this sleep irregularity symptom  can attest, it’s really really bad  for one’s health, career, emotional state, marriage, friendships, and – dare I say? – driving capabilities.  Ongoing sleep loss makes you susceptible to all kinds of colds, viruses, and even things you wouldn’t think of such as muscle strain.  We find ourselves more accident prone.  I certainly have lost a lot of my enthusiasm for going the extra mile at work.  (I haven’t volunteered to chaperone a school dance in three years.)  I’m too tired to accept invitations that involve being out with friends at night.  And marriage?  We love each other and have no plans for divorce, but we have had the “No, you’ve had more sleep than me, so you get up” fight many, many a time.  Almost all of our disagreements center upon who deserves to take a nap more.  Which is not unlike people fighting for the last life raft.  There comes a point of sleep loss when civility and compromise are strained and it’s every parent for him/herself.

I have been saying for nearly three years now that the best gift anyone could give to me would be a night in a cold hotel room with light-blocking shades.  (With Sean back in school full-time and our family of four living on my teacher’s salary, that’s a luxury we won’t give ourselves.)  But, oh my, would it be nice.  Curiously, people don’t seem to believe me and are more likely to give tourist t-shirts or spa sets as gifts, but I digress.

It will come as no surprise to you, dear reader, dear fellow parent in the trenches, that I am writing this post at 1 a.m.

Listing to my baby going “ah zhoo ah zhoo ah zhoo”.  No, I have no idea what he is saying, but he has always babbled as if he’s talking (which is how we often miss the real words he surprises us with).  And I am reminded that, one day, he will likely sleep through the night all the time.  That, hopefully, he will thrive and maybe, just maybe, become a daddy sitting up with his own little sleep avoider.  That I will miss having my soft, chubby kneed baby boy in my arms  That, even in the despair of bleary-eyed exhaustion, there are simple moments of pure contentment in the quiet, dark hours of the night, passing the time with this happy little companion.

And suddenly, I’m smiling face to face with my sweet baby boy.  My slightly-sleepy-but-craving-skin-to-skin contact little boy who, when my husband went and got him and brought him into our bed, began to pet my arms and face and snuggle and plaster himself to me, giggling in pure joy of cuddling with his mama.  Now that?  That’s love.  He has never said the words, but we know we are blessed in our assurance of Callum’s abundant love.

55 thoughts on “Sleep Loss or Why I’m Now 50% Gray

  1. Sandi

    Now that’s a bit odd, from my experience. One of the first things we were told was that sleep issues were not uncommon with autistic children. My son spent the first five years of his life not sleeping well. He was often ill (his leukocytes couldn’t replenish themselves as efficiently when he wasn’t sleeping) and I was as well (since I was up with him, of course) so it was a rough few years.

    My husband and I took turns. I lost sleep during the week (because my husband NEEDED to be alert for his job) and he lost it over the weekends. It was never a real hassle – just a division of labor.

    Our relief came eventually from a pediatric psychiatrist whose specialty was sleep disorders. If you haven’t met one, I would advise it. Remedies we had tried before worked when they were amplified by his guidance and an increase in dosage that no one would have considered without a medical opinion.

    Now, my son sleeps through the night. I am still an insomniac, but it’s my natural state. :)

    I wish you all the best as you seek your rest!

    1. Profile photo of FlappinessIsFlappinessIs Post author

      It wasn’t until I started researching it that I found a lot of information about it. But not a single person we have taken him to ever brought it up. I know now that it is common, but I wish I had known sooner. We are considering asking for a sleep study when he returns to the developmental pediatrician. But I’m dreading it, because I can’t figure out how on earth to get him to cooperate with being hooked up to wires! ?

  2. Linda

    A lovely post. Thank you for sharing. In the earlier years we too were sleep deprived. There were nights where i would have to lie down with him in order for him to even fall asleep. Trying to then move myself, get up and leave the room was pretty much a waste of time. The second I would move at all he would wake up and the dance began again. Then I came to learn more about the importance of calming routines for him and started putting them in place asap. Epsom salt baths and massages were always big on our list. They worked wonders. Now he is 12 and loves bed. He is excited when it is time to go to sleep. We have altered our bedtime rituals as he has gotten older (back scratches, Indian Head Massages, I talk to him about his day, about what tomorrow may bring) and that ritual is like blowing out a flame. He settles down so nicely and is usually asleep before I leave the room. He does wake up in the middle of the night, around 3 am, because I can hear him laughing quietly. Then he goes back to sleep on his own and I have to wake him up around 8 am to get him hustling for school. I think he has turned into the typical ” I am sleeping in” pre-teen!

    1. sunnypatchcottage

      I’ve been in those trenches. My bio son is now nearing 10 next month, and Callum sounds like an identical twin. I handled all that you’ve described while a single mom.

      I’m now married, with 2 step children on the spectrum as well. One flapped so much we expected take off at any moment. He didn’t sleep thru the night til his dad finally got medication for him…at 6 or 7. Mine started sleeping at around 8 and still gets up early, but has finally got his clock to sleep a good 8 hours.

      I’m 34, my hair is dark with graying streaks. Hubby is 43 and latino black hair with TONS of salt in it.

      We feel your pain..we’ve been there 3 times and are still in the trenches. Hubby is a psych RN and does tons better than I do…I’m aspie too…but together we work at it.

  3. Lisa

    We had told all of the “experts” about our son’s sleep issues…will go DOWN to sleep but often WAKES in the middle of the night. No one really said anything…until we got his eval done for Autism. The neuropsych told us it was quite common.
    I, too, am perpetually sleep deprived…and I try to cope with it, like you. At the very least, it is some extra time with my son….I just wish it wasn’t so prevalent. (He’s 5.5 and still struggles…)
    Hope your Callum sleeps tonight.

  4. jennifer

    I feel the pain of sleep loss from my almost 5 year old ASD son. Our dr. did talk to us about it. We use melatonin. It helps but not always. I swear I could set a record for being sleep deprived. When he sleeps, I sleep, dishes, laundry and dusting? Sleep is much more important!

  5. trisomy21overcomers

    Yep – Caleb, our Trisomy 21 Overcomer, who is not on the autism spectrum, and is 5 years old, still sleeps with us because we never want to miss any of those plaster himself to us and pat us on the face or the back moments. His speech is finally beginning to emerge, faster and faster, but these intimate snuggle conversations are definitely in the top 10 of the best gifts a parent can get. A full night of sleeping straight thru – – – – that, too, is in the top 10. It is a tough decision – – – sleep or snuggles – – – – I can sleep later.

  6. Lindsey

    I have not had this problem with my ASD child, but I do want to pass along a suggestion. I know, I know, it’s always the people who don’t have the problem trying to tell those who do how to fix it, but what the heck, it might help. This was my cousin and his wife’s way of managing sleep with infants in the home. She would go to bed at 6:00 in the evening (crazy, right?). He would then be on baby duty until midnight. This didn’t necessarily mean that he would stay up that late, but if the baby cried, he was on it. Then, at midnight, she took over and was on baby duty until 6 AM when they usually woke up for the day. That way, they each got at least six straight hours of sleep with hopefully some supplemental naps during their baby shift. Maybe something of this nature could help in your situation to work around Callum’s wakefulness. Hopefully, at the very least it could minimize some of the “no it’s your turn” arguments, and having longer stretches of sleep can make a huge difference in the amount of fatigue that you feel throughout the day.

  7. Katherine Gordy Levine

    Sleep deprivation is used by tyrants to break people down. Competent paid care takers should be avaialbe to take over a night or two a week so parents can get some sleep.

    Or

    Parents should have access to drop off sleep houses where their challenging child can be left safely. Same need for parents of colically infants.

    My hopeless dream is that if a parent was staying home to care for a challenging child, the government would pay that parent a living wage including benefits. All parents are raising the country’s future and should be paid.

    But I’m a dreamer.

    Maybe when one or another messiah returns to bring peace on earth. So sad we do so little when just a little more would make a difference.

  8. Sandi Carter

    Sleep issues…oh I remember them well. Melatonin was my best friend after I discovered it! Also, my hubby and I alternated “on duty” nights – so that at least every other night we were getting an “uninterrupted” night of sleep. From a mom whose 4mth old took one twenty minute nap a day! Little did I know at that time that it was one of our first signs of autism in the works.

  9. Sandi Carter

    Oh, just to add, it did improve! He slept until 10:30 am this morning! We still have the occasional night where we use melatonin at age 8, but for the most part, he can settle himself down now, and has recently started telling us that he was tired and going to bed. What 8 year old does that?? Hang in there everyone!

  10. Karen Vano

    Great post- thanks so much for sharing. My son just turned four a few days ago and I still sleep with him every night!
    One thing that changed our lives was getting him into preschool. He is in a school for kids with autism and its a long day (9-3) and then he has ABA therapy till 5pm. He is so tired at the days end that he sleeps through the night with no problem.

    One thing that I thought about with your post is that when my son has woken up in the middle of the night- and since he is totally nonverbal- I start getting the paranoia of “what if he doesn’t feel well??” and then I imagine every possible malady that could be happening that I can’t see and he can’t tell me about! Truly the absolute WORST part of a nonverbal child for me is the freak outs about their health and if they get injured.

    Thanks so much for your writings. It is so helpful to so many to follow along your story and I really appreciate you sharing your life and struggles with us.

    Karen

  11. Nonna

    No one can find it strange that I still vividly remember this… though my boys are now 14 and almost 11. Of course, while “sleep” isn’t as big an issue as it was when they were little – it’s still an issue. My 14 year old in particular has a very hard time with sleep still. Thankfully, the teenage growing years are upon him, so even if getting to sleep at night is still hard, he tends to sleep some in the morning hours (though he might be awake for a bit in the early morning still). I am walking proof that lack of sleep over a significant period of time can contribute to health problems… but I won’t go into that now. You would think that I would resent all the years of sleep loss, but the funny thing is, I tend to treasure the memories I have (what I can remember through the fog!) :) I remember my youngest at 18 months, wide awake every night between 1 and 3ish… all he’d want to do was color. So, in order to make sure everyone else got the sleep they needed (or mostly to make sure my then 4 year old didn’t wake up after recently falling asleep), I would take him out to his high chair, give him a blank piece of typing paper, let him pick the colors of crayons that he wanted for this particular coloring session, then I would lay down on the couch and doze while he finished his new “masterpiece”. He would take those colors and fill the entire page until there wasn’t one spot of white paper left. The mix of colors was always beautiful… sometimes breath-taking… when he was done. I kept many of them for years… almost a decade later, I’m not sure where they are, but I know they’ve been saved in a box somewhere. After finishing the picture he would happily go back to bed and lay down until he fell back to sleep… and I would gratefully grab a few hours of sleep before they both woke up again (though sleeping has always been hard for me too – there are nights when after finally getting the boys to bed it still takes hours to get myself to sleep). Despite the years of working with spectrum issues, basics like eating and sleeping are still a lot more complicated than they are for most people. This is definitely a unique life, sometimes it’s nice to know I’m not the only one who knows what it’s like.

    1. jennifer

      Wow! My son colors in the same way…..beautiful mix of colors and covering the entire page….never seen anything like it…

  12. Robin

    I think sleep deprivation would be the perfect form of torture, don’t you? I have been sleep deprived for about 10 years now, and it seriously scrambles my brains! My two youngest children are autistic. Once our daughter(now 10) got to the point where I didn’t have to get up with her, we had another baby. He is now 5 and I spend many hours hanging out with him in the middle of the night. We do give them both melatonin every night – it was actually recommended by the Dr. that diagnosed our daughter. It helps them go to sleep, but doesn’t help with sleeping through the night. I’m with you, just give me a night in a hotel with light-blocking shades…that would be pure bliss!!

    A friend introduced me to your blog this week. I love it!! :0)

  13. Katie Spencer White

    It is currently 5:40 pm as I write this and my ASD son(11 years) has been asleep since 7 am. He regularly flips his sleeping hours around. I’ve had to quit work and homeschool him him in order to manage. It has such a profound impact on our lives and no one told us about it, either. My husband and I get our rest as our son is happy to read in his bed, our day to day activities can be severly resticted. And just when we get him back on a regular schedule, something happens (some change to his routine ~ like a family wedding, or some idea will occur to him) and he is up all night again. No resulution in sight, but eventually he’ll grow up, right? Lol…..sigh….

  14. Christy (Both Sides of the Coin)

    Amen, sister.

    We’re on a good stretch right now with our son’s sleep (knock on wood), but we get that stuff too- up at 2 AM, jumping on the bed, running in place, beating the walls- only to fall back asleep at 6 AM when I’m supposed to be getting up anyway.

    And you’re right about lack of sleep affecting everything. I was in my first car accident last March after an especially difficult week of no sleep. Since then I’ve invested in a few good travel mugs, strong coffee, and some peppy music for those days. Keeps us all safer. :)

  15. Autism Maven

    Both my kids are on the spectrum and have sleep issues. One did a sleep study and the other wore a wonderful thing called an Actiwatch for 2 weeks. It is a little computer that monitors light and activity levels, etc., 24 hrs. a day for 2 weeks. We found out lots of useful information and no sleep study! Turns out he has restless leg syndrome and now takes iron and vitamin C to help combat symptoms. Be sure to go to a pediatric sleep clinic and ask about the Actiwatch! Good luck…

    1. vina kent

      We are familiar with the sleep study tiy, but the study turned up negative wih mine. Boy could i share some stories though. Woke up one night to a floor full of milk in thf kitchen and my son trying to make him some cereal. I literally at one point was so scared to go to sleep, even while ge slept out of fear of him wakin up while i slept and getting hurt. It was awful. My sanity was very much reaching a breaking point for quite a while. Im so glad hes in school now. But when my older kids have friends over and make too much noise when he is sleeping, i threaten them by saying, “if you wake him up your staying up with him ” that usually quiets them down.

    2. Jen

      Thanks for the info on the Actiwatch! My son has had 3 sleep studies over the last 4 years, but no one has ever mentioned this device. It sounds like something that could help figure things out, since the sleep specialist cannot, at the moment, figure out why he wakes up so much at night.

  16. Julie

    I truly feel for you and the sleep deprivation! Words can not express the effect it has on one’s mental and physical health, but bless your heart for having the ability to work with it and make the best of an exhausting situation. I LOVE your blog, even at 3 in the am as I often find myself up with a precoscious 3 year old with ASD.

  17. Teresa (Embracing the Spectrum)

    We experience regular sleep irregularities. Our little guy is 5 years old and even with medication he wakes up in the middle of the night and stays up for hours. Sometimes he wakes up the baby. So the only person who sleeps well in THIS house is my husband, who could sleep through a tornado.

  18. Jen

    I’m so glad you posted this.

    My son hasn’t officially been diagnosed with Autism (Asperger’s, I suspect), but I do have him on a waiting list. He’s been seeing OT’s, ST’s and PT’s along with behavioral therapists and sleep specialists since he was two. Most of them, including his pediatrician, have always assured me he doesn’t have it, but with all of his challenges (ADHD, SDP, OCD, anxiety, speech delay & sleep problems being the short list), I’ve been concerned for quite awhile.

    Anyway, the point I was going to make, is it’d be a relief, in a way, if autism can account for his sleep problems. He’s had his tonsils out, his adnoids are practically non-existant, he doesn’t register for sleep apnea, and still, he wakes about 5x’s as often as a “normal” person throughout the night, has frequent nightmares, and/or just wakes up for no apparent reason. As a toddler he had what I thought were night terrors, as he would wake screaming and didn’t recognize me, my parents, or anybody else, and could not be calmed for hours. If this is, in fact, a manifestation of his possible autistic tendencies, it’d be nice to have an explanation where the doctors/specialists have no answers.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      Jen, I am almost positive that I have read about some scientific research in this area. I’m going to do a little digging and see if I can’t come up with a link. If any of you know one, please share. But I think we might actually be find something on that. :)

  19. vina kent

    My son is not autistic that we know of, but we did indeed struggle with getting hm to sleep. My husband and i has many of the same “I had less sleep then you did” argument more tmes then i can possibly remember. My son got on a very odd schedule. It was, Ill sleep when im tired, kind of schedule. And he was rarely tired. It seemed like hehad way more energy then any kid should have. We ent through this cycle for years. We tried goig to the Dr abd uing medicine, but it didnt work. We tried keeping him up whole days, but ut was a struggle cuz i was exhausted and could barely keep myself awake.. or sane. Anyways, it wasnt until he started Pre-k that his sleep schedule normalizes. But i do find that if i let him get slightly off that schedule, we go backwards again. The best advice i have is get some Melatonin and give it to him. Its natural and the Dr told us very safe. As for getting a nite off for some sleep, i recommendhaving a family member or friend stay one night at your house while you getcaught up on youf sleep. Best of luck and if you have any questions just let me know.

  20. Michelle Coontz Knecht

    I love your blog! Anyone dealing with ASD knows a lot about sleep deprivation! For us, it did get better once our daughter settled into a pattern around age 6. You never know though! Still have baby gates and safety latches on everything just in case. Hope you get your hotel sleep fantasy sometime soon!

  21. jessymum

    It’s interesting to me that no-one flagged sleep issues with you … I don’t have any kids on the spectrum (at least none that have been diagnosed so) BUT even so I’m aware that some ASD kids can seem to get by on very very little sleep compared to the rest of us … just like some seem to have the ability consciously switch on & off their appetite. Thankfully, though – although I’ve been blessed with a child who was nicknamed (by medical staff) ‘Energizer Bunny’ before she even got to her due date, she does indeed have an off switch :) and gets 8-10hrs uninterrupted sleep most nights … Even so – as a single Mum – I choose to pay a carer to take my daughter off my hands for one night every month or so to give me a night off … So – what do I do on my night off? … hot date?, drinks with friends? … watch an non-G rated movie? … NO – I have an early night! … AND a sleep in :)

  22. Jenna

    Sorry if other people have said this same thing, I dont have time to read the comments. What I want to say is, force your doctors to give you a sleep study. Doctors don’t offer them for some reason. Demand it, keep a sleep log, make your doctor see your son really isn’t sleeping. I think doctors just assume it is normal toddler sleep habits and blame it on the environment. Keep a log, Tell them everything you have tried, routine, melatonin, etc.
    We have had 3 sleep studies. All showing different things. First one my son had severe sleep apnea even though he didn’t snore. Then we found out he has major acid reflux, he has mini seizures at night that keep him from sleeping. After 2 years and 3 sleep studies my son still doesn’t have quality sleep. His REM time is like 2% but he now sleeps. It might take a while to get him to sleep but he will sleep 11-12 hours most nights. He still wakes up many times at night, still has night terrors etc, but he sleeps. So much more important I sleep.
    Good luck!

  23. Paula

    I just love ALL your post, inner thoughts, struggles and fears. You are so point on and thank you for sharing. I share your post often with family and friends.
    I do not have an autistic child, however, I have an Angelman daughter. Angelman Syndrome is under the autistic spectrum, often misdiagnosed as autisim, and has many many many of the same traits.
    Currently, Carmyn does not talk, just learned to walk ay 3.5, has a beautiful smile, has sensory issues, fire alarm scream when over loaded, hand flaps with excitement, sleep issues, the list goes on.

    1. Paula

      I didn’t get to finish.
      So, I say thank you for sharing and bringing to the attention what I an usually thinking. Carmyn is awesome. You would just love her. And I wish most people could see that, instead of something weird, scary, or annoying. I wish people didn’t think I was crazy for having more kids. Because I did. Glad I did. I know I am crazy busy, but it gave balance.
      Anywho, Happy New Year! Pray many blessings on your family.

  24. Sharon Horton

    I can so relate. I have that plaster baby myself. Only he is six and getting a little big. He loves to kiss my hair and rub it against his face. So hard to be upset when you see how happy it makes him. I had to explain to his therapist the other day that smelling her hair was a sign of affection and that it means he is opening up and really likes her. LOL Thankfully Jesse doesn’t really wake up anymore, he just wiggles, and talks in his sleep. So when he is in bed with me, it wakes me up but atleast half the time he is in his own bed and I dont hear him.

  25. Elisa's Spot

    Proprioceptive input helped mine to get down past the level of sleep so that he had a better chance to stay in the bed. He is/was a toucher. Careful foot and leg massage, not light and ticklish, head and ear massage, weighted blanket and socks on his feet helped. He also liked to have the blanket put up halfway up his ears. I think now, that the kids are older I am glad that I had a child that could not be touched before I had my son. I had to learn ways of soothing and calming her sensory system in ways that did not need my presence. These allowed me to bypass my son’s neeeeeeeeding me as a crutch that couldn’t be as easily undone. (ok it is never easy for the most part for any parent to begin to tell that tiny tot NO i am NOT coming in.–pardon me for suggesting it) Z did also sleepwalk but we always thought he was awake. He liked to work the slide windows and would even pull the coffee table over to the door to stand on it and to get the chain off and wander outside in the middle of the night. I put bells on the doors, he didn’t really like the sound so it woke him and alerted me. I used a progressively lighter massage technique to get him used to the removal of weight and pressure at night until he was desensitized to it. I’ve always been a single parent with no friends, relations, nor outside respite care. The answer of the docs to the sleep issue was to try to get me to give him Risperdal. Blink. It was much simpler to just do some consistent sensory input, ignore or remove things that put him on overload when it was time for him to be calm. I’ve always just been rather intuitive about it. This transfers over to other ASD affected kiddos too. Have you ever tried a somatron?

    1. sunnypatchcottage

      OOOh…that works great–and also using a small plastic surgical scrub in brush–lightly brushing the child seems to help as well. It drove my son nuts for a while, but then he liked it. He loves being held, touched, tickled, hugged, etc now.

      1. Profile photo of FlappinessIsFlappinessIs Post author

        Our son is a sensory seeker. He’ll snuggle, kiss, and just kind of writhe all over you a long time, but he hates haircuts, sensory brushing, etc. Go figure!

  26. sunnypatchcottage

    BTW do you have problems with the time change issues with Callum? Oh boy do we, mainly with my bio son! But they all 3 get cranky. My bio son has horrible issues when the time changes–why can’t the govt just leave it alone??

    Right now, he goes to sleep when it’s dark…if it got dark at noon, better get out of his way..he’s heading for bed. By summer he’ll be trying to stay up til at least 9 (his bedtime is 8:30 if he is not asleep by then already on his own). He loves climbing up on me (he insists I sit in the recliner and he crawl up on my side) and covering up with a blanket and “rest his eyes” and snore while he does it.

    I remember all to well the days of lack of sleep, trying to work 3 jobs (all part time) in agency nursing to take care of us, on 2 to 3 hours of sleep while he screamed all night, going to sleep just in time for me to get an hour or two and then up to get ready for work. This went on for months. I was a single mom then, after leaving his dad, and there was no break except on the every other weekend when his dad had him. Oh the precious sleep!

    When hubby and I first got together, I’d do some of the overnighters with his oldest, and then when I’d try to get hubby up in the morning, he would have a death wish in telling me he needed more sleep (while I’d been up all night with his aspie/severely adhd child). And I’d still have to tend to the kids all day–they weren’t school aged yet according to the local district, and the oldest had been kicked out of 2 daycares by then.

    I stay at home now, and it’s been a big help, tho not really financially. But I can do the overnights if need be, I can handle the day to day stuff and the kids know someone will be home. This is particularly reassuring to my bio son who freaks if I have to work outside for any reason.

    1. Profile photo of FlappinessIsFlappinessIs Post author

      You know, I’m not always so observant of patterns. I don’t know that I’ve really noticed time change issues. I’ll have to be on the lookout for that. Thanks for the suggestion.

      1. Karla A.

        My son argues that you dont go to sleep until it’s dark…so …we are so not looking foward to this Sunday…I guess we will have to explain to him the change (he is now 7 so he’ll understand better than before) and pray for the best!
        Also, when it comes to sleeping, sometimes it’s the sensory issues that wont let them sleep. My son needs to have some noise in the room…we have been using music all night in his room…but are trying to change it into a white noise machine (which he loves to hear). He also needs to feel weight on him so we are planning on making a weighted blanket…cause so far he has been using his dad for the weight LOL. Hope it gets better for you :)

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  29. Stephanie

    Once again, you took the thoughts right from my head! I <3 you. Seriously. Both of my autistic girls share a bedroom since we have 5 kids and 4 bedrooms, there's no other choice. I've been berated by the school for them not sleeping enough, I've had them give me examples of a hundred things I 'need' to do, as if I hadn't already thought of them and implemented them all a hundred times over. Anything we do works for a couple nights then it's back to the drawing board. Their most recent suggestion? Have one of the girls sleep in the living room so they're separated. Apparently they have no idea of the trouble a 4.5 year old with the capabilities of an 18 month old can get into to! Their response to that? I should sleep on the floor of the living room. How on earth would I care for my family with even less sleep than I get now. There's no easy answer, we just do the best we can. An odd observation about illness though, one of my girls catches every cold known to man. The other? RARELY gets sick, ever! She is the healthiest person I've ever met. Our entire family could be horribly ill and she's just perfectly fine. I envy her immune system!

    1. Stephanie

      Please excuse any typos or grammar errors. We’be been in a ‘no sleep period’ for 6 days now. :)

  30. Sue

    Hugs to you and prayers that you recover quickly and stay healthy afterwards. I can relate to this post all too well. I even wrote a post about it. You can go to the Best of Best on SOS tab from my home page to read it. The post is titled, “Autism Myths, Legends, and Mysteries of Sleep.”

    I want to assure you that it will get better. Miranda’s sleep patterns are still different than ours, but she does sleep now. Being older, she also can usually manage on her own during the times she has trouble sleeping now. There is not one solution to help our kids sleep. You just have to keep trying to find what works best for your son and for you. My posts has links to studies on the subject too.

  31. Storm Dweller

    My daughter has difficulty going to sleep at night. Although it’s gotten to a point where she will at least go to her bed and stay there… realtively quietly. Some nights I have to yell at her to quit talking to herself. I have a habit of rehearsing and practicing conversations that are a bit difficult for me because I am generally a conflict avoiderf. She has learned to rehearse for interactions at school, the same behavior, but more because it allows her to control the uncontraollable in a safe environment, and to plan for every possible outcome in the ensuing conversations. She gets to set her expectations for social interactions that she would normally rather avoid. She’s a bright child. She is also prone to stay up and engage in stimming behaviors. Right now she has a tendency to pick at her scalp, and we are trying to find an alternative sensory behavior to replace that, as we are worried about secondary infections. Unfortunately we haven’t yet found a solution that works for her. The result is that her older sister that shares a room sometimes loses sleep because of her sister’s late hours. Where I as a single parent can generally get to bed at a decent hour, the challenge comes in getting her up and getting her ready to get out the door on work days. Her doctor prescribed Hydroxazine for the itchiness that goes with the climate here, and with the scabs that are trying to heal, and because it’s supposed to be drowsy-making. It’s not helping either as far as I can see. She also recommended Melatonin for both my son and daughter, and I saw an increase in hyperactivity and irritability. The doc doesn’t believe me, citing that it’s a chemical we naturally produce. But the month I had them on it was the worst month for behaviors I have ever experienced.

    I remember well though when my daughter was younger. Getting her to sleep apart from me was a nightmare. Her sister was so easy, waking every couple of hours to nurse and then going right back to her bed. But she would not sleep unless she was near me, not in her crib, not in a swing, not with white noise… She had to have full body contact with mom, or she was awake and crying. I had no clue what sensory issues were when she was born, and it was 18 months of constant physical contact and sleep deprivation. Putting her in a crib and letting her cry it out was the hardest thing I ever did with her, and now, knowing what I know I wonder if it might have been a cruel mistake to do that.

  32. Elizabeth

    I’m wishing you much health and more sleep in the coming year. My autistic son also woke every hour and a half until he was almost three and it was incredibly hard. Because he lost eye contact after his first vaccination at 20 months old, we never gave him another. We found that an all natural whole food diet with no pharmaceutical medicine or artificial anything, and lots of time in nature, helped him tremendously in all aspects of life. He’s managing incredibly well in a regular classroom and rarely wakes at night. On a pure diet, it is easy to see how horribly MSG, artificial colors, and preservatives affect his behavior. I’m beginning to think it’s the “poisons” that account for most of his difficult behaviors, not the autism, as my “normal” children are much more troublesome. Do you have any thoughts or observations on this?

  33. Twilah

    I have a 14 year old son on the spectrum and he used to suffer from sleep issues. I knew all about the sleep issues that you describe so prior to diagnosis every time I was asked about sleep issues I responded with a no. My son would sleep soundly, but only from 10 or 11 pm to 5 or 6 am. That was it! This was a blessing in disguise. Thankfully he learned to read early and had always loved looking at books so he went to bed at a normal time and “read” “quietly” until he fell asleep. The first number he ever learned to read was 7 and we had a digital clock in his room from the age of 18 months. Every morning I would go into his room and remind him numerous times that we don’t make noise or leave the room until the first number is a 7. Those 2 things kept us sane.

    Now he still goes to bed at a normal time, but he does continue to read until he falls asleep. As the teenage years are increasing he is finding that this routine is helping him to fall asleep easier. Also he is sometimes sleeping until 8 or 9 am.

    Hoping that you can find a solution that can work for you for now and the long term!

  34. Alana

    Well, I know I never have slept through the night (and I stopped napping when I was 1.5, I’m sure my parents loved that) and I still don’t sleep through the night. At some point, my parents just managed to teach me that it was fine not to sleep, but I just had to stay in bed and not wake up my sisters (probably around 6 or so). (but I think before then, I still had the general idea to not get our of bed most of the time I woke up, but I don’t really have all that clear of memories then)

    It actually worked out pretty well, since even though I don’t sleep through the night still, my insomnia doesn’t seem to really bother me (unlike a lot of other people, who seem to get really stressed out when they don’t manage to fall asleep), since I’ve been told its my normal sleeping patterns/habits and I’m generally not tired, so it must work for me.

    I’m not sure how helpful this is, admittedly.

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