Sometimes autism just sucks!
Yep…I said it and I know I speak for parents everywhere who have to struggle with this on a daily basis with their loved ones.
Don’t get me wrong; our 14-year-old is one of the two biggest joys in my husband’s and my lives. He and his brother are our forever-loves. But, having the “autism factor” can really add difficult dynamics to life.
Our son with autism is usually a bubbly, giggly, smiling and generally very happy person. But, he can be a stinker just like any teen (or any of us, for that matter). Because he is functionally non-verbal, his iPad is his voice. Like any person, there are times you need to quiet your voice or just stop talking or daydreaming for a moment.
Heading into has last day of summer school, he decided to be very difficult with the transition. We asked him, after allowing a bit of time to wrap up his iPad enjoyment for the moment,(he was just clicking random buttons that we still acknowledged for him) to tuck it in the case and walk to his classroom.
This is where it makes my skin crawl; he behaves threateningly. He will hit his leg, bite his arm, and make somewhat of a growling sound. I just hate this! It brings up very disturbing past memories, when he was so difficult to manage. And, it makes me mad…and, it really makes me hate having autism in our lives! It also makes me feel incredibly sad for our son. And, guilty that we brought him into this life and I feel, often, that he got cheated. Wow. I really said that!
However, it is what it is. This is what we live with. Most days are just fine. Most days he is compliant and reasonable. As his teacher kindly reminds me, “We all have rough mornings”. They understand and have worked incredibly hard to effectively support him, especially when things are tough. As I said in an earlier post (in one of my Latest Fabulous Revelations), “teachers, helpers, and caregivers have my eternal admiration; they truly open doors and grow community .” I need to amend that; they make my life bearable; we can’t “do” autism all on our own.
So, I learn from his amazing teacher (who quickly answered my wondering email) that he has “remained safe” and is now is usual happy and pleasant self. He took a break and had something to eat, and life goes on.
Until the next bump in the road.
Then, like always, we will stop and deal with it and hope for the kind and continued understanding and support of our community of teachers, caregivers, friends, family and neighbors.
It really does take a community to thrive.
Which leads me to my Latest Fabulous Revelations:
- Teachers are amazing and will always be amazing; they have my eternal gratitude.
- I am one who, as uncomfortable as it can be for me, truly needs the ongoing support of an understanding community
- Having autism in your life can feel very lonely and isolating at times and miserable
- We all have good moments and bad moments where our behaviors are not our best
- Life does go on
I wonder…what do you see or think when you see someone in the community struggling to manage their loved one(s) who may have autism? Have you ever put yourself in the shoes of another when you see them having a really hard time? Do you have kind tolerance and understanding of those with autism? Do you wonder, just like I always do, how it must feel to live your life with the communication struggles and sensory/behavioral difficulties that often go with autism?
I would love to know…