Bedtime Bedlam

"Mum, he’s ripped the bed tent again and is climbing out”.

These are words I dreaded hearing. With an LGS child, the challenges continue from day to night. You are already familiar with the night time scenarios: a) co-sleep with your child; b) spend the night returning him/her to bed; c) put them in some kind of enclosure. Some of our kids need enclosed, padded beds to protect them from seizure injuries, others need an enclosure to keep them from wandering at night or climbing up the walls! Here are some of our night time experiences, and the solution that worked for us.

For our family, living in a small NYC apartment, the bed situation has been difficult. When small, my LGS kid E shared a tiny bedroom with his twin brother. Initially, he slept in a crib, with a crib tent attached. This worked well until he was about 5. I cried inside when he became too big to safely use the crib and tent. While my typical son was doing well on a toddler bed, it quickly became clear that E would not stay in an open bed and would fight going to sleep.

So we tried the Nickel bed tent from Ready, Set, Bloom, on top of a twin bed, which worked OK for a while. As E got bigger, he started to explore how to escape. He leaned on the sides of the tent converting it into a hammock, which resulted in the bending and destruction of the tent poles that kept the structure standing. He also enjoyed ripping holes in the mesh, with the goal to climb through - no amount of glue or thread would keep it sealed! My son went through a lot of these: expensive at almost $200 a pop. I am not sure that these Nickel tents are really LGS-approved, but its moot, as the business has closed.

When E got too big for the Nickel, we used the SansBug tent, and continue to use this when traveling. At least he is safe from mosquitoes! Often, the tents were held up by velcro, ropes, pulleys and other creative engineering hacks. By this time, we had moved to bunks for the boys, with E's tent squashed into the lower space. We needed a better solution. I looked for contained beds, but other than incredibly expensive special needs beds or medical beds, for which we didn't have space, I didn't find anything I could use. I decided to put bars and a gate across the open side of our bunk bed, creating a larger, secure and wonderful sleeping space.

I did find that some handy parents had adapted bunk beds and built their own solution, and this gave me inspiration.

Creating wood bars across an opening is not rocket science, but finding a carpenter who would do it was a challenge. After some false starts, I was lucky enough to come across a talented carpenter and amazing human being, Andrew Barbaro, of LumberLovin on Etsy. He creates custom carpentry, and we came up with a smart design, with wonderful child-friendly coloured windows. The gate is made up of three panels and a frame screwed to the top and bottom of the bunk. The two side panels sit in a groove in the bottom frame and are attached with bolts to the top frame. The door is in the center and is joined to one of the side panels with lift-off hinges. Bolts on three sides keep the door firmly closed. All of the panels are easily removed from the frame when access is needed to change the bed sheets. And to prevent my son climbing out through the side opening, a matching panel was made to fit in that space.

After destroying his way through multiple bed tents, E finally has a set of wooden gates to enclose his bunk bed to keep him safe at night. No more sewing up holes in tent mesh! No more super-gluing my fingers to the bed tent! No more bent tent poles. No more destroyed zippers. We've been through a special needs edition of The Three Little Pigs: every structure we erect has been blown down. But finally we have the brick version! My son loves his new bed. Finally, peace and safety at night for the whole family. We recently moved apartments: you will all understand that this bed was flagged as our most precious item and I supervised the dismantling and rebuilding personally!

How do you keep your precious one safe in bed at night? Do you have a medical bed covered by Medicaid? Have you come up with a creative solution? Please share and post pictures below.

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