Posts Tagged ‘Sleep disorder’

The Bed Tent Saga — Update

This bed tent saga has been going on now for years . . . .  It is the challenge of trying to keep Chloe safely in her bed all night.  It often takes Chloe hours to fall asleep, and sometimes she awakens in the night and stays awake for hours.  She doesn’t have judgement for what are good choices and what are bad choices.  She doesn’t fear danger and doesn’t seem to care much for what’s safe or not safe.  When she is awake and milling about, she is silent so we usually don’t even know she’s on the move.  She has been known to wander out of her room . . . out of the house . . . .  And we have struggled for years on how to keep her safely contained during the night.

Our story has included several tents, several constructed bed-things, lots of duct tape and caribiners, broken zippers, ripped mesh liners . . . I could go on and on trying to catch you up on our saga.  The photo below of all the tents . . . ummm, yeah, I think we’ve tried about that many . . .

Tents at the camping site at the Lowlands fest...

Image via Wikipedia

And this whole bed tent / special needs bed / safe sleep for children with disabilities has remained the number one way that people find my blog.  It is a huge need in the disability community.  And in the past years, our options have been few.

I have not kept you updated on our bedtent saga lately because I was not at all excited about where it was and where it was headed.  Everything we have continued to try has failed miserably.  My precious girl has continued to get out of her bed, have a little party in her room, and get very little sleep.  Very. little. sleep.

Very little sleep doesn’t make for a good day at school.  Just sayin’.

I, too, have continued to lose sleep from checking on her numerous times each night and worrying about her every night.  Paul and I and our sitters have continued to try creative ways to keep Chloe safe at night.  But most nights we have failed miserably, and Chloe has gotten out and proceeded to party as mentioned above.

Thankfully, most of her middle-of-the-night parties have stayed in her room lately, which has not always been the case.  Safety has not at all been guaranteed.  And that really affects a mama’s sleep!

And very little sleep doesn’t make for a good day for a mama either.  Just sayin’.

We repaired the Nickel Bed Tent over and over and over.  The flimsy mesh of the tent continued to just rip to shreds.  I had to sew a piece of fabric over the door after Chloe completely ripped it up.  And when she tore that up, I finally had to cover the whole door in duct tape.  (I didn’t take photos of any of this because I was NOT having fun and wasn’t in the mood to talk about it.  Sorry.)  The zippers continued to break . . . .  Paul kept fixing them and rigging them.  But finally we admitted that it was time to put the Nickel to rest for good.

But now what?

Well, Paul bought a little 2 man camping tent from Walmart, and we put Chloe’s mattress on the floor of the tent.  This worked for a while.  I was never wild about the arrangement since camping tents are mostly canvas (or whatever that material is) with mesh only on the windows and doors for the most part.  I didn’t like the lack of ventilation — I was always worried that she would be hot in the tent.  Also, most nights instead of sleeping on her soft mattress, Chloe would sleep on the plasticky canvas by the door of the tent beside her mattress!  It drove me bananas.  Every night I would remind her to stay up on the soft mattress. . . . Ugh.  I did not like using the camping tent at all.  I didn’t feel that it was a very safe option for Chloe.  And the zipper broke before too long, and we found ourselves having to rig the thing up every night, hoping that the tent would contain her and keep her safe.  But most nights it did not.  She escaped and escaped and escaped.

It is very difficult to relax and sleep when you are not sure that your daughter is safe.  Don’t know if you’ve ever experienced that or not, but trust me on this one.

Knowing that so many of you experience the same. exact. scenario. every. night, I really wished I could come up with a wonderful and safe solution for our children.  But each night that Paul and I were defeated in our struggle, it got more and more frustrating.  And it is simply a terrible feeling  not being able to ensure your child’s safety.

OH, but friends!!

I have some news for you!!  For a week now, we have put Chloe to bed and then turned and walked out of her room, knowing without a doubt that she was going to be right there safe in her bed when we woke up in the morning.  For an entire week, I have not checked on her one time!  Not once!  I seriously cannot ever remember going even a night without checking on her multiple times!  I am excited to share the news with you about what we discovered!

(But if I told you about itnow, this post would be TOO LONG!  So you have to come back here and read about it tomorrow.  And I will try to be patient and not spill the beans before then!)

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