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Monday, January 20, 2014

24 hours without sleep

Remember all those times I said we'd had the toughest night ever with Janey?  Well, forget all those.  Last night holds the new record.

It really started night before last, which I wrote about here.  She slept very little that night, and woke up for good at 5:30 in the morning.  She wasn't extra upset or screaming a lot, just awake.  And Sunday wasn't a bad day at the start.  We went to our favorite thrift store, where she was cheerful, we had a good lunch, and then I played with her a lot while Tony watched the Patriots lose.  We were a little surprised she hadn't napped at all, with the very little sleep she got, and I assumed once the second football game was on at 7, she'd been asleep for most of it.  Tony went up to watch the 2nd game with Freddy, and I worked on getting Janey to sleep.  By 10, when she was still going strong and starting to get cranky, I asked Tony to take over.  I slept a couple hours, and was woken up around midnight by Janey's screaming.  She hadn't slept at all.  Then the fun really started.  From midnight on, Janey screamed almost non-stop, the scream that is so incredibly loud and frantic and awful to hear and I am sure, awful to scream.

I can't imagine how tired Janey must have been at that point, but I know how tired I was.  I made coffee three times, in a desperate bid not to give into sleep.  She didn't even drowse off for a second---just screamed.  A few times, she put on Netflix and flipped through shows, watching them for a minute or so and then changing them.  She asked me over and over to snuggle with her, and would stay with me for a brief moment and then jump up and scream.  I took her over and over to the screaming room, got her calm enough to leave, and then had to take her right back.

Tony got up about 4.  By that time, we were both in a state that is hard to even describe.  It was bad enough we talked briefly about going to the emergency room, although we know from everything we've read and heard that would do exactly no good.  But she had been awake so long and was so frantic I just started to worry about how much of that the heart and mind can take.  We kept counting the hours she had been awake.  Finally, at 5:30 in the morning again, exactly 24 hours after she had last slept, she closed her eyes, although we could see she was still fighting it.  I don't think she really slept until about 6.  And she slept...2 hours.  Until 8.  She has been awake since then.

Today has featured a lot of screaming, with some quieter moments.  She is still edgy, still obviously in some kind of manic type mood, still upset and tough enough that I think 99% of the parents out there would call today the worst day they'd ever had with their child, but for us in the very very exclusive 1% club, which I think most of you parents reading belong to, it was just a regular bad day.

Where do we go from here?  I have no idea.  She is on medication, several kinds that are commonly prescribed for autistic kids to help them calm and sleep.  I am starting to feel like they do very little.  We are giving her melatonin, which we have not found to do much of anything.  We finally gave in last night and tried Benedryl, which our pediatrician has said is fine to give her in cases like we were in, but it also seemed to have exactly no effect.  As much as I was possibly able, I was consistent in my approach to her.  We can't let her scream it out in a room alone---she is too unpredictable and self-destructive for that.  Our friends and family are not up to taking her for a night.  The only respite we've ever found was a bust---not able to provide enough care for Janey.  I really, truly don't know what can be done to help her and help us.  I guess we just keep going.

Last night, in my desperation, I looked on Google for "autism" and "screaming".  Most of what I found said in one way or another the same thing "You need to figure out what your child is trying to communicate by the screaming".  I am trying not to swear here.  I'm not a swearer.  But @)#&%#)$(, what do they think anyone with an autistic child tries to do, day and night?  They try to figure it out.  What do the "experts" think?  That we just say "Boy, I can't stand that stupid screaming and crying.  Obviously it means nothing, so I won't try to interpret it!"  Maybe the most telling thing was that in my searching, I found several of my own blog entries from here.  It's a little scary to me to think of some other parent searching and finding something I'd written, when I have so few answers.  If you are one of those parents, I'm sorry.  I know what you are feeling, but I don't know what to do.  I don't think anyone really does, for what that is worth.


kittyrex said...

I'm sorry Suzanne. I don't have an autistic child but I do read your blog. All the good wishes of a stranger don't do squat, I know. Hoping it gets better for you very soon.

Bethany said...

I feel almost ridiculous in asking but I've not seen you mention trying it anywhere. Have you ever tried a true weighted blanket? I really thought it would do nothing to help Braden but was at the point I was ready to try anything! It had an immediate effect. He went from being up for hours in the middle of the night 5/7 of the nights to only struggling about once a month. It was a dramatic and immediate change. They are not cheap - ours cost $200 from Amazon but our county board of DD purchased it for him.

I know you have tried so many different things and I don't want to insult you in any way in implying there is an easy fix - I just didn't want to keep what remotely could help to myself. I wish for you and yours rest, peace, and happiness.

Antti said...

The way you described the repetitious snuggling made me think that she maybe tried to stop the screaming herself but couldn't, I don't know.
Incidentally, how do you dose the melatonin? Ville gets 3mg regularly and sometimes 4.5mg, or occasionally, when he wakes up early in the night, another 3mg. If I take it, I need 4.5-5mg, 3mg has no effect. I've heard that even 9 mg is used to produce the sleep for a nap EEG in the afternoon with restless autistic children. Of course it*s not a sedative and the bright light of course takes away the effect.
Anyway, although we nowadays have a sort of equilibrium with the sleep issues, I know how it feels to be tired, too tired to even care how tired you are.

Suzanne said...

We have been giving her 3mg of the melatonin---that is very interesting about the higher dose. I might try more with Janey. I tried it for myself and found 3mg puts me right out, but as we know with our kids, the dosages are sometimes very different for them! Bethany, several people mentioned a weighed blanket to me! I think I might try a form of that tonight. A friend sent me a weighted vest. Janey won't wear it yet, but the weights can be taken out, and I might quickly sew some pockets in a blanket and try that. Thanks for the ideas! And thank you, kittyrex, for your good wishes. They DO do squat! It is so amazing and wonderful to me to have people thinking of us.

Unknown said...

I'm going to try the melatonin I haven't tried any medication yet. I gave her benedryl and it really hyped her up. Thanks for this wonderful forum.

Bethany said...

Suzanne, our OT that helps with Braden's sensory issues helped us determine the weight needed in his weighted blanket. He weighs 75 pounds and uses a 12 pound weighted blanket that is 42x54. So I'm not sure if the weights from the vest would be enough to give a similar experience. I am actually quite surprised at the heft of the blanket that Braden uses. It does have an area cut out that is by the neck area to keep the weight off his neck. We ordered ours from Amazon but I know a lot of others that have made their own - they are ridiculously expensive to purchase! I'm sure there is probably a site that could help you figure out the weight Janey would need based on her weight, maybe even her OT from school could help. Hope this helps your girl! ❤

Suzanne said...

I'm going to talk to Janey's OT about the blanket---thanks! I put the vest on top of her the other night, and it seemed to calm her down quite a bit. I also upped the melatonin some that night, and that also seemed to help, thanks also! Shajuan, I hope the melatonin helps you too! Benedryl doesn't hype Janey up, but it just doesn't do much, but we gave our older son Benedryl just once when he was a toddler (for an allergic reaction we thought he was having) and WOW---he jumped up and down in his crib all night long! So I get the hyped up!

Unknown said...

Suzanne did you get a rx from her pediatrician forJaney's melatonin? I really want to try it for Lauryn. She only slept 3hours last night and she is up now. How was janey's day today? Hope all is well with your entire family. Goodnight.

Suzanne said...

Shajuan, the melatonin is over the counter. Her psychiatrist approved it---I was nervous to try it before that as I am sort of slow to try "alternative" type drugs. Janey can't take pills, so we have to crush up anything she takes in water, and at first, we couldn't find it that was easily crushable, but then I found Nature Made Vitamelts, chocolate mint flavor. They dissolve easily and they really do taste good! I found them at the Riteaid near us. I hope you can find some and it works for you!

Unknown said...

Thanks so much Suzanne I will contact her doctor and give them a try.