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Saturday, December 8, 2012

Update on the Dovi Educational Fund

Thanks to your generosity, the Dovi educational fund is now at $295.00 which is incredible. Thanks so much to all who gave, even $5.00 makes a difference.

Of course, $295.00 is but a drop in the bucket; tuition is around $8,500 a month!!!!!! But we still have time until July to help me get to the sum of that first month of tuition. The earnings from this blog and my other writing gigs will help; and that is also giving me a push to start writing more for actual publication instead of the puny pennies the blog brings.

Keep contributing, ladies... every penny helps. Thank you so much.

Click here to donate.

Friday, December 7, 2012

High Chairs, Booster Seats, and Mealtime Solutions

When Dovi was a baby, he sat in the Graco Evenflo high chair he had inherited from big brother Chaim. I loved the thing; it had two holes on the tray where we could put in toys from the Exersaucer line which kept him busy during mealtimes and playtimes. Eventually the high chair became a space annoyance and Chaim was big enough to sit on a regular kitchen chair, so Dovi inherited Chaim's Fisher Price Booster seat. I loved the booster seat. When I had first bought it for Chaim, it came with a play tray  that had a battery operated "book" with sounds and activities on it. Unfortunately that play tray spent way too much time on the porch and got wet from many years of rains and no longer worked. So now we were just left with the booster seat and a plain blue plastic tray. But it served the purpose well.

That is, until Dovi entered the "food flinging" stage. Now the tray was way too small to contain his food choices which were endless, varied, and picky. He developed an annoying and dangerous habit of pushing himself towards the table to grab and fling stuff; he would move the ENTIRE CHAIR that the booster seat was strapped to. Sometimes he pitched himself backwards out of anger and was in danger of tipping the whole thing over. It was clear we needed a safer solution.

Tuesday, December 4, 2012

Crib and Bed Tents

I wrote the post below on December 4. Since then, the amount of search words that lead casual, new readers to this blog by searching for 'crib and bed tents' and the 'ready set bloom tent' has exploded. I get at least 2-5 hits a day just from that searchword alone. Therefore, I want the new reader to know that there is a part II to this post; we finally have the perfect bed, which we obtained through a Medicaid dealer. When you are done reading this post, please go over to the 2nd post on crib and bed tents I wrote, by clicking here. I know firsthand the frustration of finding a good bed tent for a crib or a twin bed; since the TotsInMind crib tent was recalled, there is nothing really out there besides the Ready Set Bloom tent, or a plain old camping tent like we bought on amazon. The Pedicraft bed has changed our lives. 

Good luck to all.


When checking out my amazon clicks, I noticed that someone purchased the following item after reading this post. While I can't vouch for its efficacy or safety, this seems to be the only crib tent not recalled. It's pricey, but hopefully it lasts a lot longer than the $70 one I kept replacing.


One of my most frequent google searches in the past two years has been CRIB or BED TENTS FOR AUTISTIC KIDS. I've tried every solution under the sun to keep Dovi in bed and out of trouble. Some of these google searches were actually pretty valuable. And now it's my turn to return the favor to other desperate google searchers who are at their wits ends with their little Houdinis.

With Dovi, it all began in December of 2010 when he was all of 2 years and 5 months old. One cold evening as I was sitting and relaxing in front of my computer, I heard the pitter patter of little feet running out from the bedroom to the dining room. WHAT??? I couldn't believe this. Chaim had never mastered the art of climbing out of the crib, even when he had moved from a crib to a toddler bed at age 4. Apparently, Chaim had moved his toddler bed closer to Dovi's crib, which then gave Dovi a foothold when climbing out of his crib... and he was determined to utilize it. Within days, he learned how to climb out even without the toddler bed as a foothold. Thus began our little Houdini's forays from his crib into the big, wide, exciting world of escapism.

At the time we lived in a "railroad style" apartment; the kids' bedroom opened up from our bedroom. So when he escaped from his crib in the middle of the night, he ended up in our bedroom. And escape he did - every night. We put him back into his crib again and again, for about two weeks. We finally realized there had to be some sort of solution. The first thing we did was research crib tents. Apparently there was only one, made by Tots In Mind. The crib tent has been recalled and the company shut down; but at the time, it was widely accepted and widely used. The crib tent was our sanity-saver; it was the only way to keep Dovi contained so that we could all sleep well at night. Dovi even liked it; he felt comfortable and safe and surrounded and the mesh provided him with some excellent tactile sensory input.

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Unfortunately, the crib tent is very shoddily made and we ended up going through dozens of them. The first one actually lasted almost four months, until the zipper pull came off, and the company sent us a second one. The next one lasted less than a week; Chaim tore some kind of hole in it right in the middle of Pesach and we bought a new one right away. The third one lasted until after the summer, when Dovi kept using the tent as a jumping bag; we were upstate in the Catskills and his crib was next to a bunkbed. He liked to climb up the stairs to the bunkbed and then climb on top of the tent and sit on it. Before long it was bent out of shape and unsafe; we threw it out and bought tent #5.

I don't even know how many tents we went through the second year; we probably bought a new one every month or two. At that point Dovi decided he did not want to stay in his crib, period, and would launch his entire body out of the crib so that the tent would get bent over, but he couldn't escape. The tents were no match for his body weight and they got bent out of shape or torn every month. We knew we had to find another solution, but what?

My online friends kept coming up with suggestions, some of which were impractical or too difficult to implement. One suggestion was to empty the entire room of furniture and have him sleep on a mattress in the middle of the floor, with the door turned into a dutch door with the bottom half locked. That wouldn't work for many reasons; there was a large trampoline in the room that I couldnt dismantle myself and had tried to sell unsuccessfully for months, as well as a huge chest of drawers I couldnt move myself either and didn't really have where to move to. I also couldn't just turn the door into whatever I wanted since I live in a rental. The crib tent was being recalled and I didn't even have where to buy them anymore since almost no stores were stocking them. We had to find another solution.

Thus began my search for AUTISTIC BED TENTS... which yielded quite a few interesting results.

The first one was the Nickel Bed Tent from My Ready Set Bloom. It looked amazing and perfect for a twin bed; exactly the kind of thing Dovi would love when it was time to transition to a regular bed.

There were some other excellent beds on the market like the Noah's Bed and the Safety Sleeper, which are standalone beds that cost about $5000!!!! I tried to get it covered through my Medicaid Services Coordinator but was turned down by Medicaid because "children should not be restrained" - and they suggested instead that we have an alarm system if Dovi left the room in the middle of the night. Whoa! How on earth would that help us get any sleep? Once Dovi wakes up in the middle of the night, he stays up. He would not go back into his bed. And it wasn't even safe - suppose we didn't hear the alarm for some reason? And how would he ever go to sleep at night if there isn't some way to safely contain him?

We were stumped.

But last summer when we went to the Catskills I decided to try the Ready Set Bloom tent. Since there was a spare bed in the bungalow I decided to test Dovi's reaction to being in a big bed, and if it would work, we'd buy a big bed for the house as well. It was absolutely perfect. Dovi couldn't bleieve all the space he had, and the tent was roomy and cozy. Dovi couldnt stand up in the bed like he was able to with the crib, but he had plenty of room to sit and play. It was safe, nicely made, and at $160, almost triple the price of the crib tent but manageable.

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The joy was short-lived. Dovi managed to destroy this tent within the month. He liked to jump on top of it, and the poles became extremely bent out of shape. We ordered a second tent, and waited quite a while, but it was on backorder. When it finally arrived, it didn't last for more than 2 weeks - Dovi destroyed this one, too. We realized that this was becoming too an expensive habit to support - $160 every time! - and the company was out of replacement rods. We were stuck!

One weekend when Dovi went away for weekend respite I discovered that they had a novel idea for kids who had outgrown the crib but needed the additional safety of a tent: A regular camping tent! They put mattresses down on the floor inside a camping tent. I got very excited and decided to try the same thing. After a LOT of research on amazon I finally settled for this one:

We saw right away that we had a problem. Only a crib mattress fit inside, and there was too much empty space. His regular bed mattress did not fit. Dovi didn't like it and refused to sleep in it.

So he continued sleeping in the Ready Set Bloom badly mangled tent.

Until Hurricane Sandy came to town, and Dovi went to town with his painting skills. The bed tent was trashed. We were absolutely lost. Since my husband was off from work, we pushed and shoved together until we forced his twin sized mattress into the tent. We reinforced the tent-and-mattress with a safety bar, pushed the bed towards the wall, left the bottom trundle bed halfways out for extra safety, and held our breaths.

Dovi loved it.

It seemed we had finally found our solution.

Except that  camping tents are extremely, extremely flimsy. The wooden poles were bent, broken and splintered within days. Nary two weeks had passed when the tent was completely unusable. We were back to square one!!!

So I ordered another tent. This time I made sure NOT to get a one- or two- person 6 foot by 5 foot tent; Dovi's twin mattress is exactly 6 feet by 5 feet, but since the tent slopes on all sides, it's hard to shove it in. I sat and researched and compared prices extensively and settled on this one:

Dovi likes this tent a lot because of one of the main reasons I bought it: It's completely 'see through'. Instead of all the other bed tents I've tried before which only have a little mesh for ventilation, this is entirely mesh and he can see out of his bed. I don't enjoy 'locking him up' and definitely don't want him to feel claustrophobic. The tent is very tall and he can sit and feel like he's sitting on his bed without any surroundings.

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The problem with this tent is that it's HUUUUUGE. His mattress fit in wonderfully easily, but there is too much extra fabric on all sides. We bunched them up into his bed frame on the sides and it fits in nicely, but it's still not ideal and I cannot vouch for its long-term safety. Plus, the poles are already starting to give a little. We need a permanent solution.

Enter the Pedicraft Bed. It looks perfect for what we need, and this is stocked by Medicaid medical supply houses, unlike the other 2 beds. My next step is getting a letter of need from the pediatrician, which I have not gotten around to due to recent events which have consumed my every spare moment. But that is my next step. For now, Dovi is happy in the newest tent, although I know it won't last very long.

Finding the perfect safe enclosure for a special needs child, especially a hyperactive one who cannot be trusted to stay safely in bed, is a challenge which can take over their parents' lives. But we are lucky to live in a day and age when there are so many solutions, both homemade and official ones. I do feel sorry for the parents whose special children are still in cribs, since the Tots In Mind tent recall and shutdown has left them without options.

When I was searching desperately high and low for bed tent options a year ago I came across this blog. This mom eventually settled for the Safety Sleeper; it looks like an oversized pack n play but looks like an excellent bed. This blog is what planted the first seeds in my mind for my own autism blog; as the blogger wrote, "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." One of the first posts I ever wanted to write was about the bed tents. And even though we haven't yet found a permanent solution, maybe one of the links I posted here will be helpful to one mother, somewhere.

The day I will know that my blog was a success is when my search stats will show me that someone found me by searching for bed tent solutions.

ETA: Dovi slept in the Pedicraft bed for over 4 years until he moved to a residential school. By the time he left the bed was in pretty bad shape - the company that sold me the bed didn't do a great job servicing it, and then they closed down. We managed to skate by.

For those of you who are still looking for an affordable solution for a bed tent, if your child is not super active like Dovi was, by consensus from a wonderful respite provider who had Dovi a lot these four years, her favorite tent is the pop up privacy tent. I have never used it myself, and I'm pretty sure Dovi would destroy it in a jiffy. But just putting it out there to shorten your endless searching.

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