Autism Fatigue: Self-Care is Key
Do you feel exhausted by your daily routine with your Autistic child or teenager? Do you feel overwhelmed, like it is all too much sometimes? You are not alone. We have all been there. We've all had our moments where we want to scream and bury our heads. I, myself, am sleep-deprived, frustrated and running desperately low on hope at times. I can tell you first hand that Autism Fatigue is a real issue to many families. Being a caregiver of any kind is exceptionally hard on a person physically, mentally and emotionally. It can become a monotonous task of routine and scheduling. Being a caregiver can be enough to run anyone down if you don’t take time for yourself as well. Time for yourself! If you are like me, you have no idea what that phrase means… or didn’t used too.
As my child aged as became increasingly tired of the general routine and repetitiveness I had to maintain for his sanity. I got sick of acronyms-IEP, CPSE, CSE, EI, OT, PT, ST, MT, IHP, FBA, BSP, etc. I often found myself and still find myself speaking in a verbiage that an average person wouldn't be able to follow. My common conversations are not that of a normal person's. I use terms like evals, differentials, meds, standard deviations, severe sensory seeking, safety concerns, 1:1 interaction, social deficiencies, SLP, OT, comorbids, and ABA like they are second nature. If I wanted to explain my child to someone in proper terminology it most likely wouldn’t happen. They simply wouldn’t understand.
It wasn’t that I minded it then or that I mind taking care of him now, in fact I love it. It is just that it was so hard and still is. For years he didn’t speak and had the most violent meltdowns you could imagine. When he was 18 months old he melted down and broke my eye socket. From there he just got stronger and started turning the harm on himself. It was a nightmare. At 2 he broke his arm, he blacked my eyes more times than a can count and would beat his head against everything and anything. It was a nightmare I never thought I’d wake up from. It was a nightmare I also never got a break from. You see, my son has a very severe sleeping disorder. It has been called one of the worst doctors have ever tried to treat. In a 12-hour sleep study he gave them 15 minutes of usable sleep data; and, showed no normal REM cycle.
For years he would pull all our food out of the fridge every night and line it up on the floor in circles. No child lock could keep him out. He ruined so much food and I cried so many tears. Now, at 14-years-old he is marked by the brutality of bullying in his old school. He has nightmares about what the kid(s) did to him and doesn’t understand the significance of it being a problem with them, not him.
It felt like I was all alone and sometimes still do. I also felt/feel a sort of shame in the fact that I was letting/did let my mental health and self-care go. I felt like if I admitted it that I was somehow admitting weakness. As he aged I found more coping mechanisms for my fatigue and self-care tactics for myself.
Learning to Roll with the Flow
Learning to roll with my son's needed routine was particularly hard for me, as I was an intensely spontaneous person before his diagnosis. When I learned of his need for routine and scheduling it was like adapting myself to be a whole new being. The spontaneity had to be gone. There could be no surprises with Zain (my son.) I had to learn to stop being the old Brooke and learn to ease into a roll as an Autism mother. I did this first by researching and writing. I wrote book after book and article after article until I understood what my son had. Until I understood Autism.
I secondly had to learn to set up a routine for an autistic child that included time for myself. This is something I am still perfecting. Setting up a routine is exclusive to your child. No one single routine is going to work for every family. Some kids need hourly changes, some can only focus for 20 minutes at a time, therefore needing many warnings before task changes and many task changes throughout the day. It all depends on your child’s severity and your family’s home life. We are all different. Finding time in your child’s daily schedule can be a struggle for some families, like it was for mine.
My son’s current routine is one of every thirty minutes. Every thirty minutes we change tasks so that he doesn’t have to focus on one task for too long. Then we go back to it in a cycle. It works well for my child. His morning and night routines are very structured too, as his days are. He has strict rules his brother and him must adhere to so that I can keep meltdowns to a minimum. We have a morning and a bedtime routine that takes almost 2 hours to complete. This routine is essential to his functioning. Given that schedule it is hard to find time for myself most days. Plus, I homeschool both children.
Self-Care is Key
Finding time for self-care is probably the hardest and most important part about being a caretaker. There’s a tendency to lose ourselves along the way, we all do it. It’s a matter of roping yourself back in and remembering how important you are to your child. You must have mental, emotional and physical self-care to properly care for your child and yourself. Whether it be meditating, yoga, writing, therapy or drawing… you must find your time for you. Maybe it’s just a relaxing bath with some music at the end of every day. That 10-minute refresher in the bathroom during tablet time, or that one night a week or month you get a sitter, you must have self-care to survive in this world.
Much of my self-care comes from the relationships I have formed online with parents who are going through the same thing that I am. There are a few ladies that I do not know what I would do without. Do not discount online friendships simply because you may never meet the person. If done safely, making a friend with like family issues can be the release you have been looking for. Support groups are great places to meet friends with like issues. Online and in-person support groups are things that I will always advocate for. They are so essential in staying connected to the world outside of your home.
All in all, we all have moments where it feels like it is too much. If you keep it in check and do not allow it to turn into Autism Isolation Syndrome, you should be just fine. Just relax, find sometime (any time) for yourself, and surround yourself with people who get the life you live, without you having to explain everything to them. Find your solace, your routine, your tactic of self-care and find your support team.
You got this.