“This photo is what we aim for — a happy, calm, contented Josh — the snapshot that we choose to share, but the everyday reality is far from this picture.”
By Gary Lee
(This post was originally featured on the blog from the National Council for Severe Autism (NCSA).
Here we go again, I say to myself, trying not to wake my wife Kim after 20 minutes of sleep as I leave the bed for the umpteenth time to attend to our son Josh. I work from home and often sacrifice sleep to allow Kim to get a few hours before her day begins at a special needs college.
Josh is 20 and diagnosed with autism, ADHD, profound learning difficulties, developmental delay, and minimal clear verbal language. We first fostered Josh when he turned 5 and back then he was a tiny, silent victim of his traumatic first four years of life, living with a mother who had learning difficulties and a schizophrenic father. He was taken into care at two years old when his birth father severely injured Josh’s one-year-old sister. His father held the family at knifepoint refusing to allow the paramedics to attend, and the children were immediately taken from their parents.
The violence that Josh witnessed, and was a victim of, was compounded by the trauma of being separated from his mother and sister, enduring 8 placements within 18 months, and not understanding the world around him. When he entered our lives, he was virtually silent. He flinched when we attempted to tuck him at night and exhibited behaviors around food, doors, and lights that indicated neglect and confinement. The first priority for us was for him to feel safe and then to encourage an attachment to us. This process continues to this day.
Now, this 6’1” gentle giant continues to live with us, his “Mummy and Daddy,” two of his first words and still the only people he refers to by name. Fifteen years later, Josh is no longer that scared, silent boy. Instead, he constantly makes sounds and is almost never at rest. His whole day is a commentary of jaw grinding, random shouts, and approximations of phrases from the movie Toy Story.
The photo above is what we aim for — a happy, calm, contented Josh — the snapshot that we choose to share, but the everyday reality is far from this picture. Josh struggles with sensory needs and is often overwhelmed, whether by pleasure, anger, frustration, hunger, heat, or noise. This overwhelm manifests through shouting, screaming, repeating words and phrases (sounds that are his approximation of words that we have over the years learned their meaning) and worst of all, self-hitting. He rains blows to his biceps, forearms, chest, and head or kicks his legs together and knees himself in the head. While daytime can be a challenge, the nights are usually grueling as usually he doesn’t fall asleep until around 2 am.
We have consistent routines in place, but if he has a need, he will call for Daddy, loudly and repeatedly. Or he will be up and down the stairs sounding like the Hulk as he moves around our home. He may sing, make repeated sounds, or shout and have a meltdown. Sometimes it’s because he’s fighting against the tiredness, sometimes it’s because he’s asked for something (maybe pizza at 2 am!) and has been told no, and other times we have no idea why or what has triggered him. I can often keep him fairly calm by sitting in his room and waiting for him to fall asleep, and this allows Kim to get a few hours of rest.
“Even when I do get to bed, I am ‘wired’ to every sound — hyper-vigilant, they say.”
Even when I do get to bed, I am ‘wired’ to every sound — hyper-vigilant, they say. Josh will get up to get food from the kitchen, have a shower, watch TV or try to open the doors and leave the house. Along with the physical lack of sleep, it is exhausting being ‘on’ all the time, even “on” while we sleep. We have attended training and seminars, read countless books, met with numerous ‘professionals’, and joined a number of forums to help find a magic elixir and nothing has worked.
Our best solution has been to work a shift pattern. Kim and I never go to bed at the same time and because Josh will also wake up between 5 am and 6 am, Kim will often get up when he wakes up to enable me to get a bit more rest even if it’s not sleep. On days when Josh doesn’t sleep Kim will have to take a day’s unpaid leave.
Most nights Kim and I may sit together around 9 pm to unwind with some TV; however, I’m usually closing my eyes within 5 minutes and brought back with a jolt as Josh appears and thrusts his iPad into my face. Kim usually heads to bed at around 10 pm and that’s the end of our time together. Apart from yawning or falling asleep together on the sofa, it’s not an ideal situation romantically.
I try to maintain a healthy lifestyle as tiredness often leads to poor food decisions and minor illnesses due to a lower immune system. I’ll often squeeze in a couple of fitness sessions in between the daily tasks of washing, cleaning, and shopping. It’s a Godsend that we were able to find a college provision that Josh could attend during the week so these tasks can be accomplished, and we can take a nap if needed.
“My Fitbit informs me that I get between 3.5 and 4.5 hours of sleep. “
Friends often say, “I don’t know how you do it. I couldn’t.” But it’s not about being brave or selfless because what’s the alternative? My Fitbit informs me that I get between 3.5 and 4.5 hours of sleep. Most of it is light, and as I write this at 9.30 pm, it seems to add insult to injury by suggesting that I consider getting some rest now because I know, I have a thousand more searches for Buzz, Woody, and Jessie along with another thousand screenshots, umpteenth requests for drinks, chocolate and pizza to fend off before I can even consider closing my eyes, but now it’s time for me to momentarily fall asleep next to my wife on the sofa before I awake to do it all over again tomorrow.
Gary Lee has been married to Kim for twenty years. They have a combined family of 4 adult children and 6 grandchildren. He is the founder and director of the nonprofit community organization, Serious About St Neots; a creative media and events organization. He was also a radio broadcaster for 40 years and now a podcast producer and co-host of The Scary Guy Podcast.