Sleeping on the Floor

Brian has severe OCD and is on two high doses of medication to combat it.  Luvox and Paxil have been a part of Brian’s daily medication for several years and they are helping control his OCD, to a point.  The immediate image that comes to the mind of most people when they hear obsessive compulsive disorder is one of someone washing their hands over and over.  OCD manifests itself in Brian in other ways.  Brian has to have certain doors open or closed, certain lights on, objects placed in specific areas and orientated in specific positions.  If he sees trash on the ground, he can’t focus on anything else until he picks the trash up and either throws it away or gives it to someone to hold so it’s not on the ground.  He does not like napkins on the table at meals and will try to throw them away.  These are just a few of the manifestations.  Every area of his life seems to be controlled by his OCD, but these medications have definitely helped him be able to function.

Before medication he used to be extremely upset by the sun shining in through the windows and making shadows on the wall.  The stage of shadows, as I like to refer to it, was overwhelming.  Brian would start crying out, as if in pain, and try to stack any object he could get his hands on in front of the shadows on the wall to block the darkness.  I often wondered if he was seeing things I could not see, after all Brian is more prone to schizophrenia, bipolar disorder and other psychiatric illnesses due to his 16p11.2 duplication.  Watching him exhibit such fear and emotional turmoil tore at my own emotions daily.  At this point in my life I was in such a deep depression that I was just trying to keep my head above water and get through each day in one piece.  I had no idea how to help Brian deal with this invisible monster which finally led me to seek the help of a psychiatrist, for him, not for me.  My path to find my own psychiatrist would come many years later.

Brian’s psychiatrist was a breath of fresh air for me in a time of darkness.  At this point in my life I had all but barricaded me, Brian and Molly in our home while my husband went to work.  I had no friends, I barely went to any social functions and I lived in a deep depression that was trying to swallow me.  I was afraid to take Brian out in public because while we had a service dog he was tethered to to keep him from running away, I still had preschool-aged Molly to chase.  It was easier to keep them in our home where I knew they would be safe.  As any parent of a special needs child can attest to, this can lead to a lonely existence.

One of the strongest manifestations of Brian’s obsessive compulsive disorder reared it’s ugly head on a daily basis, and still does to this day, even with the help of Lovux and Paxil.  Ripping, shredding, tearing, however you would like to refer to it, is this intense and invisible fire burning inside Brian.  It’s as if he has absolutely no control over his actions and can think of nothing else.  The satisfaction I see radiating from his face as he shreds anything he can get his hands on is a power even medication can’t control.  Due to this insatiable desire to destroy things, our home has become a glass house.  We have no curtains hanging in our home except in the bedrooms, well minus Brian’s bedroom.  In our old home Brian not only shredded his curtains, sheets, clothes and stuffed animals, he also shredded his queen-sized mattress!  We had already taken the mattress off the bed frame after finding Brian in his room trying to jump off the bed and tear the ceiling fan down.  We had it lying on the floor and one day it was just too much for him.  He could control himself no more.  You can imagine my surprise to open up his bedroom door and find him laughing hysterically as he was shredding it when his teeth, hands and feet.  After that, we removed the mattress and started making a pile of blankets for Brian to sleep on at night.  The ironic thing is that even when he had a bed in his room, he would often end up sleeping on the floor every night.

Fast forward a few years until you get to present day.  Brian loves falling asleep in our bed and will sometimes ask to sleep in our room.  If he does, my husband or I will lay with him until he falls asleep to make sure he doesn’t shred our sheets and to provide comfort to him.  We will then carry him back to his room once he’s asleep.  He has been doing so well with it lately, that I decided it was time to try and get another bed for him since he seemed to enjoy lying on a mattress.  I found a bed frame at a yard sale that was raising money for special needs adults and decided it was a sign to try again.  Brian was very hesitant last weekend when we set the bed up in his room.  He kept asking us to take it out of his room, but I told him we could decorate it with vinyl train stickers and he was all on board…Choo Choo!

Brian's perfectly designed train on his bed frame.

Brian’s perfectly designed train on his bed frame.

Having a vinyl Etsy business has proved beneficial for projects such as these.  I had Brian look at different train cut files on Etsy and bought the one he selected.  I then let him design his own train to put on his bed.  He picked all the colors, placement of the cars and the letter B for Brian.  It was so much fun watching the joy radiate from him as he took pride and ownership in his creation.  I loved that he chose a hot pink color for his tank car!  As we placed the vinyl train on his bed frame, he accepted the bed into his room for good.  He has slept on the plywood board for a week now as we waited for his mattress to be delivered and has gotten quite a few scratches on his body from the wood.  We’ve tried to layer blankets down on the plywood, but for some reason he has preferred to lie on the plywood.  He has hypermobile joints, and I wonder if a hard surface is not more comfortable to him.

Last night we opened up the mattress and mattress pad cover and placed both on the bed frame.  I’m in the process of ordering trains sheets and a comforter, so we used the blankets he had in his room to cover the mattress.  I knew we were taking a risk leaving both the mattress and the mattress pad cover in his room with him last night.  I was hoping we’d have success, but when I peeked in on him at midnight, he was wrapped in the mattress pad cover with one arm pushed through it where he had tore it apart.  My heart sank for I know when my husband wakes up, “I told you so”, will escape from his mouth.  Though that may be the case, we can’t give up trying.

Brian wrapped up in his mattress pad cover this morning.

Brian wrapped up in his mattress pad cover this morning.


Leave a Reply