My son is the purest soul I have ever met. He is honest, funny, intelligent, handsome. He was diagnosed with Autism Spectrum Disorder at the age of four. This is our normal; this is my reality.
I wake up, take a shower, get dressed and head downstairs to make my son’s breakfast while he sleeps.
Oatmeal with a glass of milk or cereal and a Flintstone vitamin.
I head upstairs to wake him and feed his pet fish, Mr. D. Fish. He groans as I open the curtains and whines as I instruct him to take off his pajamas. I help him get dressed. Underwear. Undershirt. Socks. T-shirt. Sweat pants/shorts.
I help him brush his teeth and hair, and wash his face. I then tell him to go downstairs for breakfast. He sits at his little table and spends most of the allotted time rocking back and forth and humming. I remind him to finish his food before the alarm on my phones sounds at 6:50 AM. He responds with a dramatic, yet predictable audible resistance. He continues to eat until…
He gets up and places his bowl and cup in the sink. I help him put on his shoes. I put his lunch in his backpack. We then head for the door in tandem.
I help him unfasten his seat belt in the school drop-off line. I place his backpack on his back and kiss his cheek. “Have a wonderful day! I love you.” He tip toes to the school entrance. I drive away and head to work.
We perform this ritual every school day with very little deviation. Why? Because it helps my son avoid meltdowns and anxiety. If we are out of milk, cereal or oatmeal, I tell him when he wakes up that his breakfast is toast or waffles instead that day. I tell him what is in his lunch when I place this lunch bag in his backpack. Every moment of his day is planned. His teachers use visual schedules, timers and verbal reminders to keep him on task. He gets Occupational and Speech Therapies at school several times a week. There are provisions in place at the after school program he attends. Every time some aspect of his routine changes, a recovery plan has to be formulated by the adults in his life. I anticipate his possible regression and anxiety with every developmental and environmental change.
While I have been fortunate enough to be able to provide necessities and privileges for him, I have concerns about being able to maintain those things. Living in a good public school zone is necessary to ensure he gets the kind of Individualized Education Program (IEP) he needs to be successful. The gluten-free, low sugar, minimally processed food diet is vital in aiding to his digestive, allergenic and behavioral issues. His clothes are soft and free of tags, zippers, laces and buttons whenever possible. All of these things require constant planning, time off work, doctor’s appointments, and resources.
While I know that most parents worry about their children, that does not bring me much comfort. To add even more nuance, I discovered my son’s developmental issues as I was pulling us out of poverty. I have been working to maintain stability in both of our lives since I struck out on my own as a single mom. Most times, I think I am not doing enough. At times, I still feel like that 28 year old, trying to figure out how I’m going to buy diapers or put gas in my tank to get to my job at Dollar General. We have come so far in the past few years, having relocated to a different state four years ago. I am establishing a career in automotive manufacturing. We laugh and dance everyday. Life is better now. At home, we can exist in our bubble, free from neurotypical people and their expectations.
I worry that the outside world won’t accept my son the way I do. When his compulsive behaviors are no longer seen as endearing, how will he cope? Will his resistance to being touched and inability to follow multi-step directions be misinterpreted as non-compliance by the police? Will his inappropriate responses to questions and eye contact avoidance be seen as signs of dishonesty or defiance? People often forget that children with disabilities grow up to be adults with disabilities. Will he be able to live alone or hold a job? Will he always need me to help him? Will I be able to give him the support he needs as we both grow older?
I suppress my anxiety while we dance to soul music in the living room or while I watch him during karate class. I do my best to not treat my son based on my feelings. If I am having a bad day, he gets the same greeting and hug when I come home. I still ask how his day went at school, review the teacher’s notes and look at all of his assignments and drawings. When I would rather be alone to process my own mental health issues, we still cuddle up in bed, as he ignores me while he plays on his tablet until his bedtime. I never ignore his cries. I never negate his feelings. I do my best to make time for me, even if it just a bubble bath in a locked bathroom. I know I am a good mother. I know I am doing the best I know how, but…
Sometimes, I get tired.
If you know a mom who always seems to have it together, she doesn’t.