Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘sleep

Negotiating Sleep

with 9 comments

You know how I recently said that I’m not a warrior mama?  Perhaps I just wasn’t a good one.  I’ve spent the last three years battling a lack of sleep, and losing every time.  Regular readers know that Pudding, like many children with autism and/or ADHD, has trouble sleeping through the night.  Or going to sleep by herself.  Or staying asleep beyond 5am.

I like my sleep.  Some would say that I’m a better person when I get it, but only those who have met me. With sleep I have energy and confidence, patience and determination.  All the things that might make you a good fighter, if that was what you chose to be.  Without it?  Let’s just say every day could be a battle, and nightfall brought no respite.

If there was a method, or tactic, or intervention that claimed to help with sleep, we tried it.  Dietary, sensory, homeopathic, behavioural, pharmaceutical…nothing worked.

Gradually- and this may have come around sooner if I’d had enough sleep to ever think straight- I realized we needed to stop fighting.  For the last few months, we went with a plan that looked a lot like surrender.

When Pudding woke up in the night, she would come in our room, Daddy would vacate the bed, and she would crawl in beside me.  Or one of us would lead her back to her room.  She wouldn’t go back to sleep unless we were also there with her, and when she woke again, she would repeat the same process.  If we didn’t, lets just say we’d be dealing with four people who were awake all night.

It was still a fight though.  A fight to reassure her before her crying and screaming woke up her brother.  A fight to rouse myself before Spectrummy Daddy took another night duty before having to go to work the next day.  A fight to keep going the next day after endless nights of disturbed sleep.  A fight to keep trying to find the magic trick, the cure-all, the answer to our years of insomnia.

A couple of nights ago, I decided to offer a compromise.  I asked Spectrummy Daddy to bring in the mattress from Pudding’s old bed, and we made her a little bed on the floor next to ours.  We’d unsuccessfully tried this before, but this time I explained that if she needed us in the night she could just come and get in the bed next to us.  We wouldn’t make her leave if she didn’t disturb us, or wake up her brother.  A negotiation.

And it works!  I found her there this morning, and I hadn’t heard her come in during the night.  Sure, one day, I’d like her to be able to sleep in her own bed, but right now she is too anxious, and she can’t conquer that enemy by herself yet.  After years of fighting a losing battle, this negotiation feels like a win.  And for once there are no casualties.

Written by Spectrummy Mummy

June 7, 2012 at 12:25 pm

Anxiety

with 25 comments

I’m roused from my sleep suddenly, viciously, by Pudding’s scream.  My husband rushes out of bed before I can even move.  He doesn’t come back, choosing to sleep in the chair by her bed instead.  Melatnonin doesn’t help, the weighted blanket is working, or the white noise, or anything else.  She just needs her sleep, just like the rest of us.  This is the second time he has gone to her, and I know he is too tired to do it again.  He has to work in the morning.  It is 4 am, and my heart pounds.  I try to breathe, I’m suffocating.  Amongst the noise of thoughts pushing for attention in my head, one is louder.  This is anxiety, it shouts.  I listen.  I try to breathe in and out, slowly, quickly, through my nose or mouth, anything to calm myself.

Sleep evades me.  Though I’m in a fog from headache tablets, I can’t find the peace I need.  Eventually I get up.  I’m not supposed to have anxiety.  My husband has struggled on and off all his life.  For my girl, it is the shackle of her autism.  My boy doesn’t escape it either, but this is new to me.  Now I’m in anxiety’s grip too.

I come downstairs and start to type, hoping that I can write out these thoughts that are looping around my head.  This has been building up for a couple of weeks, not just for me, but for Pudding too.  She has been struggling with sleeping alone.  Stressed and exhausting, I allowed her to sleep with me.  I know it isn’t the right approach, and by taking the path of least resistance, I’m exacerbating the problem, but I’ve just been too stressed.

Wait.  The path of least resistance has led to this stress.  These things are not happening independently.  I’m stressed, so I slack, and that exacerbates the problem which makes me….you’ve guessed it- more stressed.  And Pudding doesn’t so well surrounded by stress.  She absorbs and then reflects all the emotions around her.  It makes her anxious.  Seeing her struggle makes me more stressed, and round and round, and down and down we go.

So I must stop.  I have to be the one to stop the spiral, because she can’t.

I need to focus on calming her by providing what she needs, not what is easiest to give her.  First she needs patience, a resource that is in incredibly short supply when we don’t get sleep.  She needs positive reinforcement.  She needs her senses soothed even if she doesn’t feel like doing the things that will help her.  She needs consistency and she needs social stories to explain what is going on.  In short, she needs all the supports that I readily provide when I’m feeling at my best, but which have somehow dropped away as my anxiety took its hold.

It is not to say that I’m not allowed to feel stressed, or anxious, or just plain miserable.  I just need to make sure that when I’m feeling this way, I don’t take away all the things that she needs to prevent her from these very same feelings.  It was a revelation: I can be the beginning of the anxiety, but that also means I can end it.  It will take more effort at a time when making an effort is the last thing I feel like doing, but the results are already promising.  And she has slept through the night by herself before, so she will do it again, as always, in her own time, and with the supports she needs.

As for me, I feel better already.  Maybe this is the beginning of the end of anxiety.

……

This post was submitted for the S-O-S Best of the Best series on Anxiety, which will be published on May 15th, 2011.  You find more information and read other submissions here.

Taking part in the Mental Health Blog Party:

”Mental

May 18th, 2011

Written by Spectrummy Mummy

April 29, 2011 at 7:28 am

Making Changes

with 17 comments

You may have noticed my new look.  My birthday is next week, and Spectrummy Daddy asked what he could get for me.  All of my other suggestions were preposterous, so he granted my wish of my very own domain name.  From now on, I can be found at spectrummymummy.com like a real website!  Old links should still redirect (I hope) but please let me know if you have any problems accessing any content and I’ll do my best to find someone with the time who can fix it.

Apart from a new coat of paint, everything remains the same.  As we get closer to moving, I’m working to get as many things as I can into order.  Unfortunately, my kids are intent on creating as much disorder as they can.  Spring Break and the lack of routine has taken its toll on us.  Pudding’s sleeping gets worse, and I’m struggling to find the energy to do everything I need to at the moment.  I need to make changes there too.

Speaking of paint, one of the casualties of last week was this house we are renting.  Cubby has discovered the joy of writing on walls.  Pudding also went through this phase up until about a year ago.  She was compulsive in her need to spread her art, but eventually we convinced her to only draw on paper.  She has taken up the activity again with a passion.  We are witnessing the evolution of her lying skills, as I catch her in the act and she blames her brother.  There is no sophistication yet to her subterfuge, but she is getting plenty of practice.  I’m sure with the dedication she puts her into her efforts that she will master the art before too long.  We only buy washable crayons and markers, but between them they manage to find more permanent instruments of destruction.  It looks like painting will be our only option, if I ever can find time alone to do that.

Every single day for the next three weeks contains an appointment.  Things I couldn’t schedule with both kids around that I need to attend to now.  Spectrummy Daddy mused that they call it Spring Break because that is what it does to the parents.  As we struggle in the aftermath to restore some order, I can’t help but agree.  It might be a few more weeks before our house is back in harmony, but not all changes have to be bad.

I hope you like the new site – the only thing this control freak can get to have her way!

Written by Spectrummy Mummy

April 26, 2011 at 7:27 am

Going Cold

with 23 comments

She had joined me in bed again.  I don’t know how many nights in a row this is, too tired to count now.  Always between 3 and 4 in the morning.  I’ve tried to figure out why, but I can’t come up with anything.  It just appears that there are cycles of sleep problems, and we’re riding one right now.  She no longer calls out, or announces her presence, she just presents herself at the side of the bed, until Daddy gets out, and I wearily take her in.  Sometimes she goes right to sleep.  Sometimes she fidgets, and neither of us get our rest.  After a while, Cubby joins us.  My sweet, exhausted husband leaves me a cup of tea as he heads off to work.

I need my transition.  I urge the kids to go to their rooms, but they stay.  I sip the tea, trying not to spill as they bounce all over the bed.  Cubby is only content in my arms, making tea-drinking impossible.  In the end, I give up.  I place the cup back down on the bedside table and it goes cold while I wait for them to let me be for a moment.  I get out of bed, and the day begins.

Hours later it is time for the day to end.  I’ll have my second cup of tea once they are in bed.  My other bookend to the day.  My ritual.  Cubby is winding down, but Pudding is still active, hyperactive.  We need her to go to sleep tonight.  Her Daddy has volunteered for an overnight shift, and he needs to take a brief nap to keep him going.

She isn’t in a cooperative mood.  She demands, then refuses a story.  She gets into bed, but tosses and turns, hums, and twirls her hair.  I’m thinking of that cup of tea.  How much I need it, my wholesome vice.  Why won’t she just sleep?  Almost an hour later, I give up.  I tell her to go to sleep and head downstairs.

I start to clean the day’s mess.  Even before the kettle has boiled, she is downstairs.  I march her back up and place her back in bed.  I just want a few minutes of the day to myself.  I refuse to hear her pleas to stay, and return to pour the water onto the teabag.  It steeps, I add milk.  I’m ready to sit down.

She returns.  I lead her back up to the bedroom.  Exasperated, I ask what is wrong, but she doesn’t reply.  I ask what she wants, and she replies: Mummy.  I’m humbled by her need.  She wants me to get in bed with her, being downstairs is not enough, sitting on the chair in her room is not enough.  Only physical contact will soothe her.  I climb in beside her, and cup her cheek with my hand.  I lie still while my tea is going cold.  Her breathing slows, and I move my hand away.  Instantly alert, she grabs my arm and holds on, keeping me close.  This isn’t manipulation, this is desperation.

I submit and stay, knowing that the tea will be undrinkable.  I can only hope this will pass.  That one day she will be able to calm herself when she feels like this.  Until then, I can meet her need just by being present.  I’m grateful that I can still provide all that is needed.

I watch her chest rise and fall before I dare make another retreat.  This time she didn’t stir.

Nothing to do but come downstairs and pour away the cold tea.  I’m about to make a fresh cup.  My needs are also mercifully easily met.

Written by Spectrummy Mummy

February 25, 2011 at 6:28 am

The Mama Bear

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Cubby enjoying a mama bear hug

Remember a while ago when I had a sleep-related epiphany?  You don’t?  Well then go back here and catch up.  My challenge was to tame the monster of sleep with my very own pheromones.  So how did I succeed?

Well, I began by finding a nice soft cotton blanket to sleep on, and kept it in my bed for a week..  I then transferred it to Cubby’s bed and…..it kind of worked.  It worked for a couple of days, but it soon hit a few snags.  It would get crumpled up and lost in the bed.  Or worse, it got crumpled up and was uncomfortable underneath him.  Then somebody told me that I needed to sleep on it for 3 weeks anyway, so that was that.  Back to the beginning.

Next I slept on it for 3 weeks, and it worked better.  He napped and slept for longer.  Then, disaster.  When I washed his sheets his blanket got caught up in the laundry and washed away all trace of me.  We still had the problem of the blanket scuttling out of place anyway.  We still had to deal with putting him back to sleep when he woke up.  It needed a rethink.

One day he was playing in Pudding’s room (he is such a little brother) when he appeared to take a shine to one of her bears.  He carried it into his room, and I let him keep it because the bear isn’t Ernie, Upsy-Daisy, or Sleeping Beauty, so who cares?  Not Pudding.  It was a comical sight watching him carry the bear, which is slightly bigger than he is.  That is when it occurred to me that the bear would be big enough to wear, say, my nightgown.  Oh yes.  So we dressed her up, and called her Mama Bear.

Mama Bear doesn’t wiggle around or get lost in bed.  This Mama Bear is just right.  And if her scent starts to run out, I can switch with more night wear.  Easy-peasy.  It works for Cubby.  We are seeing bountiful nights of sleep and unprecedented 2 hour naps.  He napped so long when I was ill that I managed to take one too.  Rest my body was craving.  It is a no-tech, no-cost, no-hassle solution.  Hopefully it will be useful to somebody else out there.

You must be thinking that I would be all bright-eyed and bushy-tailed after all the sleep I’m getting, but sadly no.  We’re still fine tuning Pudding’s nighttime needs.  In her case, we can’t use the Mama Bear approach as she will only sleep with Ernie, and he has his own clothes.  I think she has outgrown the weight of her weighted blanket, which might be part of it, and there might be a behavioral component too.  She came into our bed when she was sick at the weekend, and has tried to every night since.  Now she no longer gets out of bed in the night, but we hear her talking, and we’re back to VERY early rising.

I’ll let you when we work out a solution for her.  I’m sure that sooner or later we will.  After all, necessity is the mother of invention, and sleep is definitely a necessity.  Particularly for this Mama Bear.

Written by Spectrummy Mummy

February 7, 2011 at 7:53 am

Puzzled

with 7 comments

So I mentioned yesterday that Pudding had gone back to sleeping badly. Not just Pudding, but the whole family.  Cubby was also waking several times in the night. One or both of the children would end up in my bed each and every night.  Spectrummy Daddy got kicked out to whichever vacant bed he could find.  I would endure a night of tossing and turning, kicking and having my hair pulled. After several nights of this, it wasn’t just Pudding’s behavior that had gone downhill.   My tolerance levels were at an all time low, which was the very reason I needed that time out.

Following yet another success with positive reinforcement, I decided that would be our only hope for fixing this problem. That is easier said than done, however, as Pudding’s rewards have to be immediate and desirable to work.   I couldn’t think of any motivator that would send her immediately to sleep.  We’d worked through various sensory strategies to no avail. She likes her bed in a certain way to sleep (lots of weight for proprioceptive input), and we played around with sound and light but it didn’t seem to make a difference.   Melatonin helped her to go to sleep, but she was still waking up several times in the night, and resisting going back to sleep when she did.

Behavioral theory dictates that there is always a reason for an action.  In the absence of all other evidence, I concluded that the reason the kids were waking was because they wanted to sleep in our bed.   I was reinforcing by allowing it to happen.  We put a gate up, and before long Cubby awoke and screamed in protest.  Seconds later Pudding was out of bed, crying and pushing at the gate. We live in a townhouse and we don’t have the most understanding of neighbors, so crying (screaming) it out is not an option we could go for in the early hours of the morning.  I took Cubby, and Daddy took Pudding.  Instead of bringing him to our bed though, I took him back to his own.  It was warm in his room.  The heating doesn’t work in his room, so we have a portable heater and I turned it right down. What is just right for him when he gets out of the bath is obviously too much in the night.  Still, there was no way he was going to sleep while he still heard his sister, so Daddy and I traded off.

The temperature in her room was just right.  I sat on the chair beside her bed, but soon she asked me to get into bed to cuddle.  I abandoned any plans to return to my bed for the night, and climbed in.  Yes, I was still reinforcing a behavior that I wanted to change, but I don’t make my best decisions while half-asleep.   She pulled up the covers and snuggled in next to me.  The two of us woke up a few more times in the night, and now I knew why.  The temperature in the room was not so comfortable underneath the two duvets and weighted blanket that she needs to sleep under.   I was hot and thirsty, and the first thing I did in the morning was drop the thermostat by 5 degrees.

The last couple of nights?   They’ve slept better.  We’ve slept better.  We’ve gone the until 5.30 with no little people in our bed.  For all I thought I’d considered every sensory aspect, I’d let this one go unnoticed until I’d actually slept in her room.  Pudding has never told me when she is too hot or cold.  Even when she has a fever, she hasn’t expressed that in words.  Food can be too hot, the weather can be too hot or cold, but never has she described her physical state.  Until she can actually interpret these sensations and communicate them to us, she relies upon us to puzzle them out for her.

Thanks(!) to the recent cold weather, Pudding and I have been doing lots of puzzles together.  She and I do them in very different ways.  I find the corners and the edges, then work my way around methodically.  She picks up pieces, looks at them closely and visualizes which go together, making the picture immediately, then working out to the edges.  There both valid ways to do a puzzle, but her way is about getting into the picture, and figuring it out immediately.  My ordered, patient way means I sometimes the miss the obvious while looking for an edge piece.  Sometimes her way is better, I need to get up close to a problem to have any hope of understanding it.

I’d love to say that our sleep problems are resolved, but while writing this, Pudding got out of bed to tell me she couldn’t sleep.  In detective mode, I returned to her room.  The noise from next door was the culprit this time, but she didn’t want her sound machine on.  Oh well, even this won’t be an issue once we move.   Eventually the neighbors became quiet.  She went to sleep by herself and didn’t wake up until after 6.  The sensory/behavior puzzle will probably always perplex me, but looking at things from a different perspective (the Pudding way) can help clear things up.  And for the puzzle I just can’t figure out?  I’ll sleep on it, given half a chance.

Written by Spectrummy Mummy

January 25, 2011 at 9:23 am

Making Scents

with 17 comments

Miniature perfume dispensers

Image by williamcho via Flickr

You have to excuse the bad pun titles, I just can’t help myself.  Now, do you remember a few weeks ago I talked about Pudding’s sleep habits?  You don’t remember?  Okay, go back and read it, I’ll be right here. Check out the comments too, while you’re there.  I’m not the only one, see.

Okay, hello again.  Yes, sleep.  Ask my friend Alysia about it.  It is a rare commodity indeed.  Solving this issue would mean big business, I’m sure.  Cubby, being our last and final child gets the benefit of our exhaustive attempts at dealing with this.  We know that we can’t train him to sleep, so instead we just gave him what he wanted.  For a long time that was to sleep next to me, and nurse whenever he chose.  Then he weaned himself (I know, I didn’t think kids did that either!) at 14 months, and he sleeps by himself, as long as a few conditions are met.  Those conditions being that he is not expected to go to sleep by himself, it is your job to do that.  He also is not expected to sleep in a crib (cot).  I suppose those are for babies.  He doesn’t care what all the books/articles/doctors/well-intentioned but deeply annoying advice-givers say.  There shall be a bath, a story, and cuddles/hair-pulling until he is snoozing.  Not drowsy, not on the verge of sleep.  Actually gone.  If you try to leave before this, he will be up before you make your move, and you will have to start all over again.  Your call.  Personally, I’m okay with his rules.

Now Cubby is 18 months old.  Do you remember what I said happened to Pudding’s naps at this age?  They stopped.  They wouldn’t return, those glory days of yore were gone.  Cubby not only suffers from not being the first-born, but he is also sibling to a spectrummy child who has to be schlepped to speech and occupational therapy sessions all the time.  And he has special needs too.  Needs that don’t have a name yet, but look very familiar to my eye.  I also have to add in playgroups, and play dates, and doctors appointments.  I just can’t create a consistent schedule for him.  A couple of days a week, he just has to nap in the car.  Those other days though, when we have the luxury of time, I was still struggling to get him to take a nap for longer than 20 minutes.  He’d wake up, be mad at me for not being there, then require me to get him to sleep again.  Or to take him downstairs, where he’d be miserable and demanding for the rest of the afternoon.

I’d be miserable too.  Because that time he should have been napping is the only time I get to write on my blog, or read other blogs, reply to emails, or catch-up on Facebook.  Oh, and I suppose there is housework to be done too, but I’m not a huge fan of doing that anyway.  Sadly, nobody in my household is.  I could see the naps getting shorter and shorter, and then just ending, like Pudding’s did.

One day last week I was particularly tired.  Pudding had been having bad nights, and her crying had woken him up too.  Everybody in the house was exhausted.  I decided I needed a nap too, and instead of going to his room, I took Cubby into my bed.  He was asleep within minutes, and I fell asleep not long after.  I woke up over an hour later, and Cubby was still asleep.  I crept downstairs, and he stayed there for a further 2 hours.  I got things done!  A lot of things done.  I marveled at how easy life must be as a stay at home mother to regular kids who take naps.

When he woke up, it was like a whole new child.  He was happy and smiley.  Instead of having to engage him in interactive pursuits, he was coming to me for play.  He is a pretty good (but atypical) talker for his age, but he was busting out new words.  It was incredible.  If only we could have this every day, was my wistful thought.  Spectrummy Daddy noticed the change too.  And here is another weird thing- he went to sleep just as easily as usual.  The extra time napping didn’t affect his night sleep at all.  I don’t mean to imply that with enough sleep our kids would be off the spectrum, but I do think that being sleep-deprived makes it way harder to cope in this world if you have sensory processing difficulties.  Just like how I find it harder to cope when I don’t have enough sleep.  It isn’t a pleasant luxury, it is absolutely essential to both children and their caregivers.

The next day we were back to Pudding on a half-day of school and driving to appointments.  We were also back to crabby Cubby.  When I was next able to put him down for a nap, I took him into our bed again.  Same thing- 2 hours this time.  I’m convinced that my scent on the sheets tricks him into thinking I’m still there with him.  Or it calms the part of the brain that is primed for flight or fight.  Smell is the only piece of the sensory puzzle we’ve never really tried with our kids, but I’m now convinced of its worth.  Over the course of this week, I’m going to let him nap in our bed whenever possible.  I’m also going to try to sleep with a blanket or pillowcase to make a mummy-scented item to keep in his bed.  And if that works, I’ll do it for Pudding too.  And if that works, well, perhaps I’ll have made sense of one of the things that has most puzzled and eluded me these past 2 years.  Expect eau de Spectrummy Mummy to be selling in all good retail stores this holiday season!

Written by Spectrummy Mummy

October 4, 2010 at 7:13 am