Archive for the ‘sleep deprivation’ Category

The Bed Tent Saga Update Part Five

Have I told you lately how much we LOVE Chloe’s bed??

We love Chloe’s bed SO MUCH that …. well, I can’t even describe it! The peace. The sleep. The safety. There is nothing like it. There is really nothing like it.

Every night, we zip Chloe in her cute bright pink bed that she loves (that’s a bonus! not a requirement, but a bonus!) and we know that we know that we know that she will be there safe and sound when we return in the morning. No need to go check on her ten times every night. No need to worry if she’s safe.

It. is. crazy. awesome.

And you cannot put a price on safety and peace and sleep. Period.

But TheSafetySleeper has a price. And the price at first seemed way too high. The price at first seemed like a no-go for our family. But please let me urge you to consider and research your options so that you, too, can experience this peace, safety, and sleep. It really is amazing!

First, I must say that we didn’t have the money for the bed. We loved it, and we wanted it, but we knew we couldn’t afford it right now. I am assuming that many of you who are experiencing sleepless nights and are wishing you could buy The Safety Sleeper for your child are in the same boat.¬†I’ll bet you’re thinking, “Great idea, but I will never be able to afford that bed.” So I wanted to talk about that a bit.

I know that some of you have already checked out The Safety Sleeper website and drooled over that amazing bed but have already decided you can’t buy one. I wanted to help you get past that and see if I can help you figure out a way to get one for your child … for your family.

Ultimately, my parents actually helped us a lot! They knew the need. They saw the bed. And they wanted to help us out. And they chose to give us a chunk of money for the bed. So that’s my first idea for you — is there someone who loves you or loves your child who might want to help you pay for the bed? I’m not condoning begging; nor am I encouraging you to mooch off your folks. I am saying that there are people who love you and there are people who want to help you. And those people would maybe love to have a chance to give to you. Before she found out that we had already ordered the bed, one of my best friends said that she had already started the conversation with another friend of ours about raising the money to buy the bed for us — they were planning on pitching in and seeing if other friends wanted to pitch in, too! So … seriously … don’t decide against the bed just yet because your friends and family may want to help you buy it.

Is this an uncomfortable conversation to have? It’s very weird to admit that you have a weakness –being poor! ūüėČ — and that you need help! I don’t guess I should pretend to speak for us all.¬† I should just say that for me it is hard to admit weakness and the fact that I need help.

Another thought that Paul and I had was to have a garage sale. We always have junk laying around and piled around that we are ready to get rid of. And as they say, “One man’s trash is another man’s treasure!” Or at least we hope! So a garage sale is a great way to earn some cash. Probably if you asked around and explained the cause of your garage sale, probably your friends would bring some of their junk over for you to sell, too. Depending on how long it’s been since your last sale, and depending on how much junk you have piled around, you could make a pretty little penny to put toward the purchase of The Safety Sleeper.

We even thought of doing some sort of fundraiser event. A bake sale? A silent auction? A lemonade stand? Okay, so those were my only three fundraiser events that I thought of.¬† But I’m sure there are plenty more that someone with a creative mind could think of. Great ways to make some money.

Here’s an idea that isn’t very popular: get a temporary parttime job. I know, I know — it sounds crazy. But seriously, if you got a parttime job and saved every penny that you made to put toward The Safety Sleeper, then before very long, you’d have a chunk saved up to help pay for the bed, and then you could quit your 2nd job again! Someone do the math and figure out what I’d make in a department store and figure out how many hours I’d have to work to get a chunk of change. Whether you worked enough to pay for the whole bed or just worked enough to pay for part of it, it is a great way to help out financially and to make this bed a reality for your family.

If you go to The Safety Sleeper website, you will see another amazing way of getting The Safety Sleeper (or other equipment, for that matter!) Click on the “Financial Help” button to learn about different organizations that help families buy these beds or other equipment. Fund it Forward is an organization that Rose at The Safety Sleeper works closely with. Fund it Forward and the other organizations listed are great resources for families who can’t sit down and write a check to pay for their child’s bed. Check it out!

There is also information on The Safety Sleeper website about insurance / Medicaid paying for the bed. Find this information under the FAQ section of the website. Since my parents were able to help us buy the bed, I did not go this route.¬†But I plan to start the process to see if insurance will reimburse us for part of the purchase.¬†I will keep you posted on that process. I do know that Medicaid won’t reimburse for the purchase, but our private insurance might. Compared to the fancy medical wood bed that we were trying to get Medicaid to pay for for Chloe, The Safety Sleeper costs nothing! (And it’s portable!) So I’m hoping that we’ll get approved for reimbursement for it.

Are you as uncomfortable talking about money as I am? I think it’s yucky to talk about money.¬†But I LOVE talking about saving money or being smart with money! So there ya have it.¬†I thought that since some of you probably looked at the website a couple of weeks ago and immediately decided you could never get The Safety Sleeper for your child, I wanted to give you some ideas to start your thinker!¬†We love Chloe’s bed, and I really think you’d love it, too. And I know money is tight … I can relate!

I will tell you that Chloe and I have both slept better in the last two months than either of us has in the past SEVEN YEARS!¬†Did I tell you that we love Chloe’s bed??

And now, watch this video of Rose. I told you she was darling! Here she is talking from her heart about her desire to help families get a safe bed for their children.

The Safety Sleeper‚ĄĘ from Heiko Spallek on Vimeo.

****************************************************************

*Disclaimer: Rose gave me a good deal on The Safety Sleeper and I’ll be credited a bit with every buyer who mentions me because I promised that I would talk about it on my blog. But as most of you know by now, I’m gonna tell it how it is! So you know I’m not joshing or exaggerating the truth. The truth is that the¬†bed is incredible, and I have a feeling I’ll be singing its praises for a long, long time!¬† If you visit the website or purchase a bed, be sure to let Rose know that I sent you! ūüôā

The Bed Tent Saga — Update Part Two

Continued from yesterday . . . ¬†You know, I was belly-aching about how terribly our attempts to keep Chloe safe at night have failed over the years. ¬†I may not have mentioned the hundreds of dollars we’ve spent on this whole endeavor. . . whine, whine, whine. ¬†But then I left you hangin’ with a big ol’ tease?? ¬†Remember?? ¬†About our exciting discovery and solution for keeping Chloe safe and in her bed?? ¬†Ahhh, yes, so you do remember! ¬†ūüôā

Well, . . . one day not very long ago, I received a comment on my blog.  The comment was from a mom who had the same struggles that I was having.  The comment asked if I had ever heard of a particular bed tent.  And this mom wanted to know if I had heard of this company because she wanted to know about it before they bought it.  And I was shocked when she included a link to a bed that I had never heard of.

Now, let me assure you . . . I have done lots of homework and lots of research on beds for children with disabilities, but I had somehow missed this one.¬† I immediately clicked on the link, and I immediately fell in love with what I saw! ¬†The bed was amazing! I think I said¬†outloud¬†in my empty house, “I am ordering this TODAY!”

But then I saw the price, and my heart sank. ¬†The price was steep — really steep. ¬†I’ve bought enough of these types of bed tents to know that they are not at all worth that high price. ¬†I realize maybe there’s going to be an exception now and then . . . but so far they’ve all been quite disappointing. ¬†I was very disappointed in the high price and just tried to think about something else.

But I couldn’t get the bed out of my mind.¬† It really looked awesome. ¬†And from the photos, it looked like it was a decent quality bed tent. ¬†And I was a desperate mama.¬† And I looked at the link a few more times. ¬†And then I looked at it a few more times. ¬†As soon as Paul got home, I showed him the link.¬† He was equally as excited to see something that looked so great.¬† But he was equally skeptical about the high price. ¬†<sigh>

But we couldn’t get the bedtent out of our minds. ¬†It really looked awesome. ¬†So I decided to contact the company and have a conversation about the quality and see if I could get any vibes.

And that’s just what I did! ¬†I called and emailed (don’t remember what I did first) expressing interest in the bed and wanting to talk to someone about it. ¬†I think it was the same day that I heard back from Rose, the owner of the company. ¬†Impressive and fast!

Rose was darling. ¬†She is the mom of a child with a disability who was faced with the same issues we were facing. ¬†But she had an idea and she had a friend who had some great skill and some quality materials. ¬†And this friend agreed to make a bed for Rose’s son several years ago. ¬†I won’t attempt to tell the company’s story here (since you can read about it on their website later), but what happened is that Rose’s friend made a great bed that kept her son safe at night. ¬†And knowing what a common problem this is for families in the disability community, Rose decided to make more beds and start her own company to do so.

Rose talked about the quality of the bed. . . and it sounded awesome! ¬†I complained about the flimsy mesh of the other products I’ve tried, and she completely understood my concerns. ¬†She explained that the first mesh product they used was the mesh that is used on those big ol bounce houses. ¬†I was impressed picturing that high-quality mesh. ¬†But then she said that now they use a heavier-duty mesh than that — the mesh that they use on a tractor trailer to cover and protect his load. ¬†Wow. ¬†Now that’s heavy-duty mesh! ¬†I was getting more and more excited the more she talked!!

Another amazing thing that Rose told me that day was that her son had one of the very first beds that they made several years ago — several years ago — and it wasn’t even made correctly; it was a prototype that wasn’t really even the right size for a twin mattress. ¬†But that prototype?? ¬†Her son had been sleeping in it for several years. ¬†Years. ¬†Yes, I said years!! ¬†What?? ¬†A safe sleep solution that is going to last years??!! ¬†The cost was looking more and more reasonable all the time.

And Paul and I were beside ourselves excited!  And we had. to. have. one.

To be continued . . .

(If the suspense is too much for you, check out http://thesafetysleeper.com/.  Be forewarned:  you will fall in love! Be sure to let Rose know that I sent you.  And check back here tomorrow for the rest of the story.)

Almost Out

Our bed tent saga continues.¬†Just when we think we have Chloe safely contained in her bed, she finds a way to escape. We have used the Nickel Bed Tent for several months, repairing its holes and rips as we go.¬†Chloe is so bound and determined to fight her way out.¬†It sometimes cracks me up . . . it sometimes makes me want to cry. But it always keeps me on my toes, that’s for sure.

Here’s a funny little video of her attempted escape a while back.¬†Seems she got half way out of her tent, but couldn’t get the rest of the way out. Nor could she get herself back in. Funny stuff. But, of course, it could also have been dangerous. That’s why we are on quite the quest to find a safe sleeping solution for Chloe.

Meanwhile, enjoy a comical video at her expense! LOL!

 

Good Mama / Mean Mama

As you already know, Chloe is in love with our Christmas tree.  And after months of asking, we finally set up the tree after Thanksgiving.  She is loving it, and spends a good bit of her time lying on the chair watching the tree.  She. loves. it.

As you also know, Chloe has a hard time staying in her bed at night. 

Well, a couple of days after setting up the tree I had another brilliant parent moment.¬† A moment and an idea that would later be called “mean” by some.¬† Hehehe.

For the next month or so I have a powerful consequence to use when Chloe disobeys — mainly when she doesn’t stay in her bed.¬† You see, Chloe doesn’t like it when the Christmas tree lights are not on.

The plan?  You stay in bed, the Christmas tree lights are bright and shining in the morning before school.  You get out of your bed, the tree remains dark until after school.

Hopefully it will prove to be a powerful enough consequence to keep my little Houdini in her bed for a while while we wait for approval for her new bed.

Some think it’s mean when I discipline Chloe.¬† They have a hard time seeing Chloe get any kind of consequence.¬† Isn’t it cruel to discipline such an innocent child? they wonder.

But the other day on a morning that our Christmas tree stayed dark, as we were going out to the car to drive to school, Elliot spoke up, again making me stop in wonder of his young wisdom and thoughtfulness.¬† “I think it’s good that you give Chloe consequences when she disobeys.¬† I think that most people who have a child with special needs just let them do whatever they want to do and never give them consequences.”

And I felt very validated by my 12-year-old son.¬† And I was proud of him for noticing and thinking about it. ¬†ūüôā

Good Mama / Sleepy Girl

A Sleeping moon in a cap.

Image via Wikipedia

When I went in Chloe’s room this morning to wake her up for school, I found her asleep on the floor of her room — books and toys strewn about. ¬†She had gotten out of her bed at some point and played her heart out in the dark in the middle of the night.

As I tried to wake her and get her stirring, I realized that this sleepy girl had not gotten much sleep at all. ¬†Unfortunately, the night was over, but Chloe’s sleep had only recently begun.

I struggled but got her dressed, her eyelids heavy and usually closed in sleep. ¬†I worked hard at propping her up so I could do her hair — even though her head kept bobbing in and out of sleep. ¬†I sat her in her chair for socks and shoes, but she slept through it. ¬†I went to the kitchen to make her breakfast, and found her snoring in her bedroom floor when I returned. ¬†She was one tired girl.

So then the arguing began. ¬†Not so much arguing, I guess, as debating. ¬†The silent debating in a mama’s head, trying to decide what to do. ¬†Take this sleepy child to school? ¬†Put this sleepy child back to bed? ¬†Take her tardy? ¬†Pick her up early? ¬†Splash cold water on her face? ¬†Turn up loud music? ¬†Put her in the car? ¬†Leave her in the floor?

I was pretty sure I needed to take her to school, and besides, I had to take Elliot to school regardless so Chloe had to go to the car.  I managed to wake her enough to stand her on her feet, and she walked obediently to the car.  She climbed up in her carseat, and I buckled her up.

After 1/2 mile or so, I caught a glimpse of her in my rearview mirror. ¬†She was snoozing again. ¬†Oh, sheesh! ¬†What was I supposed to do? ¬†I can’t take her to school if she can’t even stay awake for the car ride there! ¬†But would that be rewarding her for her bad middle-of -the-night choice? ¬†And besides, I’m having discussions with the principal and trying to arrange to do some observations of Chloe. ¬†How can I observe her school day if she’s at home!? ¬†Ugh. ¬†What to do?

I drove to Chloe’s school and parked. ¬†I looked at her sleeping in the back seat and wondered what to do. ¬†I decided to wake her up, take her to school, and call in a little bit and see how she’s doing. ¬†If she’s still sleepy and sleeping at 10, then I’ll pick her up and put her to bed.

I took her in and explained to her teacher how sleepy she is. ¬†I told her I’d call her in a bit to check on her. ¬†Hopefully they’ll be forthright with how she’s doing.

When I pulled up at Elliot’s school 15 minutes later, I said sorta to myself, “I wonder if a good mama would’ve taken her school, or if a good mama would have taken her home and put her to bed.”

Elliot answered without hesitation, “Well, you’re a good mama . . . so I guess a good mama would’ve taken her to school.”

And that was that.

I’ll call and check on the sleepy girl in a little bit, and I expect to be picking her up early from school today.

Again, the bed cannot get here soon enough!!!

Hoping for a Bed!

Well, if you’ve been reading long, you know we’ve been in the midst of sleep issues and bed fiascos for quite some time. ¬†If you’re new around here, you can read about our saga here, here, here, here, and here.

Chloe takes forever to fall asleep — literally hours. ¬†And she completely lacks judgement about wandering in the night. ¬†It is not unusual for her to wander right out the front door or into the garage. ¬†It is not unusual for her to get into trouble — silent trouble — while the rest of us sleep on. ¬†We have tried to keep her contained for years for her safety.

Every couple of years, I take a chunk of time and attempt to train her to stay put in her bed. ¬†But each time I have realized that she just isn’t trainable in that yet. ¬†I experienced that disappointment again this summer as I tried to train her to stay in her bed and to go to sleep when we say, “Goodnight!”

But no.  I was unsuccessful again.  I ended up hugely sleep deprived and no closer to having Chloe trained to stay safely in bed.

So our new plan is to try to get a new bed. ¬†A safe bed. ¬†A bed that hopefully insurance and Medicaid will cover; however, it is not at all a guarantee that they will. ¬†We have our eyes on Beds By George. ¬†If insurance doesn’t pick it up, then it will be impossible to get the bed since our first quote from the company is over $10,000. ¬†Yikes! ¬†But we are keeping our fingers crossed and praying that it will be approved. ¬†And maybe, just maybe by Christmastime, we’ll be pretty close to getting Chloe a nice new bed that will help her stay safe.

Chloe is also scheduled for a sleep study next week. ¬†It is something that I’ve thought about doing for years, but other things have always been more of a priority so it’s been put on the back burner in the past. ¬†But this summer after watching her fall asleep and listening to her fall asleep, I had some concerns again and finally called to schedule the sleep study.

The sleep study will show any seizure activity, sleep patterns, obstructive sleep apnea, how deeply she’s sleeping, patterns of relaxation . . . . all kinds of things. ¬†The study could show us a whole lot and be really helpful and answer a lot of questions . . . or the study could show us absolutely nothing. ¬†We’ll see.

I’ll let you know later about an update on Chloe’s sleep issues.

And the truth is, too, that Zippy should really have a sleep study done, too, probably. ¬†But let’s just take this one at a time, shall we?

Zzzzzzzzz

A more successful night. ¬†This is where we found her this morning. ¬†ūüôā

Paul put Chloe to bed between 8 and 8:30.  I checked on her every few minutes again.  But last night I realized that when she was in her bed tent, her head was usually at the opposite end of the bed than where I put her pillow.  And actually she usually was sleeping crossways like she is in the photo above.  So I put an extra blanket on the bed that was loose so she could take it wherever she wanted to.  Most times when I checked on her, her head was way on the opposite end from her pillow.

I left at about 10 to pick up Elliot from youth group at church.  While I was gone, Paul totally forgot about checking on Chloe.  When I got home, she was in the middle of her floor playing toys in the dark.  I got her back up in her bed and took away her toy.  And I checked on her every few minutes again.  Finally sometime after 11, she was on her bed asleep!  Yay!

I scooched her a little more to the middle of the bed so maybe she wouldn’t fall off during the night, and then I went to bed. ¬†Ahhhh!

And this is where she was this morning.  Yay, Chloe!

Actually, she’s STILL right in the same position except she has that blanket over her head to block the mid-morning sun! ¬†It’s 9:15! ¬†I guess I should go wake her so she’ll sleep tonight . . . .

If your fingers aren’t cramped from crossing them for us, please keep crossing them!

No youtube for You!

Chloe went to bed a little after 9 with no bed tent. ¬†She was excited, and I think she was determined to stay put in her bed — I could just tell. ¬†I checked on her every few minutes and bragged on her for staying put and reminded her of her consequences if she got up. ¬†She was doing great but was NOT going to sleep. ¬†Ugh. ¬†She literally takes hours to fall asleep most nights. ¬†Every few minutes for nearly 3 hours I checked on her.

Every few minutes until midnight, I checked on that sweet girl.  She stayed in her bed.  She did play with the blind cord a few times and got in trouble for that, but for the most part she was doing incredibly well.  But. I. had. to. go. to. bed.  I was sleepy.  So about midnight I went to bed and left her to her little self.

This is what I found this morning when I snuck in to check on her:

Hmmmm. ¬†Well, certainly no youtube for you today, Chloe! ¬†Maybe tomorrow. ¬†She’s got to be exhausted — from the looks of her room, she played for HOURS! ¬†Again, wish us luck tonight! ¬†ūüôā

A “Big Girl” Experiment

Oh me.

Trying something big.

I took down the bed tent today.

Oh me.

You see, the bed was ripped up anyway. ¬†It was “fixed” with duct tape, but anytime Chloe wanted to get out, she got out by removing the duct tape. ¬†She oftentimes got up, got whatever toy she wanted, and got back in bed. ¬†So really the bed tent had completely lost its effectiveness. ¬†It had completely lost its safety element.

And one of Chloe’s sitters who loves her very much expressed concern about Chloe not being able to sit up on her bed. ¬†She tearfully explained to me that she was burdened by the fact that Chloe could not sit up in bed like you and I can. ¬†The sitter very much wanted to help fix that problem. ¬†I assured her that we would think about that.

So today I just took off the bed tent.  Just like that it was gone.

Chloe sat and played toys on her bed all afternoon.  She loved it!

But now it’s bedtime, and she’s a freebird in there. ¬†I’m crossing my fingers.

We had many “big girl” conversations during the afternoon. ¬†We talked about her “big girl bed” a lot.

Elliot threatened her that if she gets out of bed tonight that he will sing and dance really loudly all morning tomorrow!  I think the boy knows his little sister and knows what threats really get her!

And I bribed her.

If she stays in her bed tonight then she gets to watch youtube videos on my computer tomorrow.

So far, so good . . . .

Rrrrrriiiipp!

Sadness.

Chloe ripped her bed tent. ¬†I’m so, so sad.

When I put her to bed I noticed some holes near the top of the bed tent.  I cringed and worried a minute and then said a quick prayer that it would hold.

The next morning, Chloe was in the living room playing when I came out after my shower.  And she was supposed to have been zipped up in her bed tent.  My heart sank.

Sure enough, her bed had a big o rip all along the top where I had seen the small holes beginning.  She had managed to rip that delicate sheer material all along the top and slip her little Houdini body out through it.  She was a Free Bird once again!  Ugh.

That day, I did a quick repair with needle and thread — a whip stitch every 1/2 inch or so. ¬†I planned to go back and do a better job of it the next day when I had more time. ¬†Again, I said a quick prayer that it would hold.

That’s when I heard the Rrrrriiiippppp! sound come from Chloe’s bedroom. ¬†I wanted to cry. ¬†I went in her room just as her little Houdini head was slipping through the newly made hole. ¬†I surprised her like crazy and was a little loud trying to keep her startled so she wouldn’t attempt it again. ¬†Since it was past our bedtime, the quick fix was Duct Tape. ¬†And I threatened her that if she broke it again I would return and be really loud and scary. ¬†She did not want that so she stayed put for the night surprisingly.

But the next morning, she busted through the tape to freedom.

Our days of Chloe safe in her bed have again come to an end.  Sadness.

The Nickel Bed Tent lasted 3 and a half months. ¬†We paid $140 for it. ¬†That’s $40 a month to keep her safely in her bed. ¬†Hmmm.

I would turn around and order another one, but I have a feeling now that she knows how flimsy that material is she will very quickly rip another hole in the new one.  Ugh.

De ja vu. . . again.

UPDATED: ¬†The next day, I re-fixed the bed tent with the Duct Tape and while Chloe was in a different room, I turned her bed around so the ripped side door is now facing the wall. ¬†It’s not that she didn’t notice because I know she did. ¬†But so far turning the bed around had kept her in her tent. ¬†She did not immediately rip a new hole in the other side which surprised me. ¬†We’ve had 3 nights of her staying put. . . ¬†. Crossing my fingers once again!! ¬†And surprisingly pleased with The Nickel once again . . .

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