Voices of Autism: ‘I Have to Keep Positive and Hopeful’
Every day throughout April–Autism Awareness Month–we will be featuring a different reader-submitted story about living with autism. Today’s story was written by Kerry Mihalik, mother of Ryan, 4:
It’s utter and sheer exhaustion at the end of each night. I am tired, sore, achy, stressed, miserable, and overwhelmed more often than is healthy. Yet bizarrely enough, some nights I just can’t fall asleep. Randomly, I will break into tears from the stress of it all. Sometimes, I feel inadequate to raise Ryan properly because I missed something–a new symptom or habit. Or then I’ll learn something new about how to help him and I wish I learned it earlier. Often a gloom cloud of desperation comes over you because so much of your life is out of your control. It just never ends; the problems, the issues, the concerns, the worries.
There are many days that I don’t get anything done because I myself am too tired or sick. I’ve got to clean, cook, shop, nap, write, run errands, job search. I’ve given up much of my social life in favor of sleep. I just don’t have time for friends. I care. I love them but I can’t listen to other people’s problems. Mine are too overwhelming. I feel bad if I share with my friends the reality of my life. Sometimes I alarm my friends with my daily stress level and I don’t want to do that. My friends love me and worry about me. Many times I make plans with friends and have to cancel at the last minute due to sheer exhaustion. I feel that many of my friendships will not endure. I can’t be the great friend that I used to be. Any free time I have is spent resting or spending time with my husband, in order to maintain my marriage, which takes effort.
Every week I’m either meeting with a social worker, teacher, or doctor, or setting appointments for one of the kids or my husband or myself. Two appointments a week is all I can manage. And although I was a professional social worker myself for years, I never realized how intrusive social workers can be. It’s their job and they do it well, but often I chafe against their questions. I’m a private, quiet person. I can write all day about my life, but talking face to face to someone asking me intensely personal questions is not easy for me. I get so defensive sometimes. I have to bite my tongue.
Ryan is improving a great deal. We are so, so blessed for this. I am grateful every day. But often at night I lay awake and I wonder what Ryan’s future is going to look like. How much will he progress? What are his limits? Sometimes, I get real deep and wonder if my belief in him is connected to his ability. So because of that, I have to keep positive and hopeful. I can’t afford negative thoughts. If somehow that negativity slips into his sensitive soul, I will never forgive myself.Add a Comment