By Julie Fackrell
This post was originally featured on the blog for the National Council on Severe Autism.
I’ve recently pondered my sleep habits as a mom to my 28-year-old son Jacob who has autism. I’ve considered how I manage to function on approximately 3-6 hours of sleep daily which would be unthinkable for many. In 2015, when my kids were 11 and 21, we would all consistently go to bed around 10:00 pm, and they would sleep until 8 am or 9 am which allowed me to wake up around 4 am. This time was the only alone-time I would get, and I would prep for the day, schedule appointments, fulfill household needs, and even research various matters relating to autism.
Waking up early also ensured that I would be available if Jacob did wake up, which happened frequently. It is very important that a trusted adult is always available when he is awake for many reasons. For example, he may decide to walk out the front door and wander off or he may want to eat or need something that requires assistance.
“I’ve woken up to the sound of dishes breaking, walls being kicked and punched, and Jacob yelling vulgarities at the top of his lungs.”
Today, I no longer go to bed at the same time as the kids because I am not able to fall asleep until I know for certain Jacob is sound asleep. His sleep cycle has changed so much, and there are times he will wake up between the hours of 12 midnight and 3 am, and this causes grief for everyone in the house, including him. In the past when this occurred and I was unaware, I’ve woken up to the sound of dishes breaking, walls being kicked and punched, and Jacob yelling vulgarities at the top of his lungs. I would jump out of bed as if the house was on fire and run to find him in this very sad and scary state of mind.
I believe that he becomes this way due to being alone with his thoughts. There is a lot of “self-talk” that he engages in, and 99% of the time it’s negative. We call these thoughts “voices” and he has received a dual dx of schizoaffective and OCD. When he was younger he would fixate on certain things like playing with his tech decks or army guys. Also, from the ages of 4-13, he had to have a daily time to “jump around”. This was an important stim because if he wasn’t able to do this, he would have a terrible meltdown. When he was 12, he said that he didn’t think he should jump around anymore because it was embarrassing, and that’s when everything changed with negative self-talk and delusions. He attempted suicide at age 13, and thankfully was unsuccessful with no physical damage, but that’s when the violent and destructive behavior began and persists to this day.
“My daughter Emma has been greatly affected by her brother’s behavior and lack of sleep. She’s in therapy, and when she was younger she would hide under the bed and call the police….”
We have tried many medications for both behaviors and sleep issues. He currently takes 7 different meds, antidepressant, anti-psychotics, anti-seizure, trazodone for sleep, and propranolol for blood pressure in addition to several supplements. My 18-year-old daughter Emma has been greatly affected by her brother’s behavior and lack of sleep. She’s in therapy, and when she was younger she would hide under the bed, call the police, and I recently learned she was so scared one night that she slept under her computer desk.
Most days I wish I didn’t need sleep because there is always more to do; things on my list that didn’t get done due to behaviors and needs that seem to never end. My Fitbit tells me that on average I get about 5 hours of sleep a night, and somehow I manage to function because for better or worse, I’m an eternal optimist. I have a vision of Jacob one day married, holding down a good job, and not suffering from the “voices”; however, if I’m practical I see him in a group home or some type of residential community, but most of all, I see him happy.
Julie Fackrell always knew that one day she was going to live in California; however, she had no idea that mental illness and a late diagnosis of autism would be the vehicle that brought her there. Julie has two kids, Jacob, 28 and Emma 18. When she is not keeping schedules on track and completing various mom duties, she finds time to work on art projects or the occasional mani/pedi, and one day hopes to return to the stage as an actor, her passion and joy.