My daughter’s bedtime routine now includes locking her into a secure bed (safety bed) from which she is not supposed to be able to escape. Not only do I have a doctor’s note authorizing this practice but 4 doctors, 3 therapists and 2 teachers wrote letters of medical necessity so that insurance would pay for this pricey piece of medical equipment (manufacturer suggested retail price of $16,000).
Sometimes when I am telling people about the bed, I joke that Caroline has a nicer bed than I ever will, referring to the cost. Other times, I kid not to worry I have a doctor’s note for yet another one of my parenting techniques. And sometimes when I am being serious I share how hard it was to make a decision to fight for insurance to pay for a bed to lock my daughter into at night. When I am having a bad day I think of myself like one of those parents you read about on the news who is arrested for locking their kid in a cage for ‘his or her safety’ or these parents who locked their twin sons with in their basement.
Caroline is six years old and she still only sleeps for three or four at a time on a good night. She also has elopement tendencies and has been able to overcome many child-locks to escape the safety of our home unbeknownst to me. Caroline’s poor sleep has taken a toll on our entire family.
We tried Melatonin. It worked for a few weeks and then she grew immune to it. Caroline currently sees a doctor who specializes in sleep and she has prescribed multiple medications to help Caroline not only fall asleep but stay asleep. Some of these help for a while but Caroline quickly outgrows them.
When Caroline wakes in the middle night she tends to be both sensory seeking and destructive. I have found her sitting on the fireplace mantel, on the top of a five-foot-high dresser, surrounded by toys and games that she has pulled off the shelves, covered in fecal matter that she has smeared all over her room. There have also been times Caroline has found me and woke me up by hitting me in the head with an iPad or phone. But the scariest times are when I walk into Caroline’s room and she is not there and the trail of destruction does not lead me to her.
So it was with a heart heavy with worry and sadness that I began researching “safety beds.” Physically and emotionally, I could no longer worry about what Caroline was going to do when my husband and I could no longer keep our eyes open. We were experiencing the kind of prolonged sleep deprivation that causes every bone in your body to hurt. I would say it was like having a newborn for six years but our newborn sleeps better than Caroline.
Some of Caroline’s doctors were supportive of our desire to get a safety bed, others less so. Medicaid initially denied the bed but then our private insurance agreed to pay. The bed was installed at the same time I was having a c-section. Of course, this was not ideal timing but it took months for the bed to get approved, built and delivered – I could not postpone installation for a better time.
At first, Caroline liked the bed she thought of it as a fort. It was a great. Then she started crying and screaming at night. The cries and screams only lasted a few nights because Caroline was able to climb out within a matter of days. Yes, that is right – a bed that was designed to keep people with special needs locked in at night for their own safety was breached by my little Houdini in a matter of days.
The manufacturer has been out to make adjustments to the bed once which kept Caroline in for 3 days before she successfully escaped. We are waiting for them to come out again to make another modification. I am considering charging them a consulting fee as Caroline is helping them to identify many ways to improve their product.
There are nights when I wish the damn bed could just keep her contained but there are just as many nights that I still question my decision to have a bed capable of locking-up my daughter in my home.
Medications and safety beds were not our only attempts to ensure Caroline’s safety at night. We emptied her room of everything except a mattress and removed the doorknob from her door. The first few times I did this I worried about a fire but eventually I came to the conclusion Caroline’s chances of escaping a house fire without help were limited. Then I worried if I could be charged with child endangerment or neglect. I had several documented conversations with doctors and therapists about strategies for Caroline’s sleep issues and most of the techniques that limited Caroline’s freedom but increased her safety came directly from a medical professional.
It doesn’t change the fact that Caroline doesn’t like to be confined. She cries and kicks at the bed when she knows she will not be able to get out. And when I ask “Caroline do you like your bed?” she quickly and assertively indicates that she does not.
The morality of locking up a child with autism, even for her own safety, is questionable yet it is something I do nearly every night because I don’t know how else to keep my daughter safe. Fifty years ago, the primary treatment for autism was institutionalization. Today, very few people with autism are institutionalized – in most cases institutionalization is considered an antiquated option, at best. What if safety beds are the institutionalization of our time for people with autism? More importantly, what if Caroline doesn’t understand why we try to lock her in a safety bed? She obviously doesn’t require as much sleep as the rest of our family so I honestly don’t know if she can relate to the pure exhaustion we experience trying to keep her safe…will she think our efforts are that of laziness rather than concern and love? Is it our right as her parents and caregivers to “lock her up” for her safety? If it is, does the right change when turns 18, 21, or never because of her special needs?
I guess I am left wondering – if I cannot fully comes to grips with whether or not it acceptable to lock-up Caroline at night for her own safety, how can I expect her to?