Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘Sleep disorder

Straightforward

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Nothing is ever straightforward for us, but I’m really hoping tomorrow will be.

As part of our ongoing investigations into Pudding’s sleeping problems (which are, of course, also our sleeping problems) we went last week to visit an ENT.

After observing her scarred and over-sized tonsils, the doctor recommended removing her tonsils and adenoids, as soon as possible.  He could fit us in for tomorrow, so we went ahead and booked her in.

Seems pretty straight forward, doesn’t it?

It wasn’t.  I mentioned to the doctor my ongoing bleeding problems, and he recommended we do some pre-op testing just to be on the safe side.  The tests revealed abnormalities, indicating more tests, and ultimately leaving us with more questions than answers.

It seems our lot in life is to be in this position.  Never knowing if we are doing right from wrong, because the data is so inconclusive.  Would this surgery help Pudding?  Or will we do more harm than good?

I’ve said before that I’m glad there is no guide book to raising a child like Pudding.  Sometimes I think that we do our best learning together, often by trying the wrong thing.  Still, on days like these, I wish we had some kind of cheat sheet.  It is a simple procedure, on a complex human being.

Usually, when I’m mulling something over, I find some peace in the quiet of the night, after the children are in bed.  But Pudding doesn’t sleep soundly, even when she does sleep.  So tomorrow we try surgery.  We’ll keep on asking questions, and maybe we’ll get some answers.  

I just don’t expect them to be straightforward.  But maybe, if we’re very lucky, tomorrow will be.

Written by Spectrummy Mummy

August 6, 2013 at 7:12 pm

Negotiating Sleep

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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

Making Scents

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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