I have recently been pulled aside by my son's treating psychiatrist to tell me that in 20 years of treating patients, my son's case is one of the most complicated and severe she has ever seen and that I need to change my expectations for him. I am to relieve as much stress on him as possible and nurture whatever makes him happy. A happy brain degenerates less then a stressed brain. His mental illness is causing an extreme cognitive impairment affecting his memory. I clarify that it does not effect his intelligence but it does impair his access to his intelligence. While I have spent 15 years advocating for my son to be in an academic environment that feeds his intelligence and still makes accommodations for his autistic spectrum challenges (which is rare) for the first time in my journey parenting my boy, I needed to ask for remedial accommodations. I cried while making that request, saying it out loud was a new level of reality that was painful to bring forward and move through.
My son, who was on track to go to a U.C (University). and always dreamt of being an automotive engineer in order to create cars that are environmentally friendly and lessen the impact on global warming...now he does not care if he graduates or even continues high school. The psych doc gave it to me straight telling me to allow him to fail at school, teach him it is not the end of the world and teach him that wherever his happiness and passion guides him is where I need to nurture and feed.
My first response was, how do I let go? For over 14 years it was all he ever wanted, as his mother, do I hold on to who I knew him to be? Do I hold on to my son before the mental illness started eating his thoughts? Do I let the mental illness steal him away from me or do I fight for him to be who I knew him to be? Where do I fight? Who do I fight? Where do I grab him and hold on tight enough so that he will look inside me and find himself again? My beautiful, brilliant, quirky boy...what is happening?
As if I were holding a pile of sand in my hands, the tighter I squeeze and hold the more slips through the cracks. I have had to stop and humble myself in my parenting role. Down at the core of what a parent's job is wanting your child to find happiness. Yes, we want health and happiness but the mental illness, like a cancer of the thoughts has robbed us of the "health" aspect so I need to go to the very core, root of parenting and in that is wanting my son to find happiness. What does that look like? Is it painting, or golfing, or playing with film making, or computers. It is not what makes ME happy as his parent but what makes HIM happy as a soul in a less then ideal shell in this life.
The jury is out on whether he will be self sufficient or even fully functional as an independent adult...psych doc does not feel that the possibilities are strong on that but my son is amazing and if he really wants something, he can do amazing things. I have to not allow this adjustment to lock my son in a box of disappointments or lower standards but instead allow it to free him. MY change in perspective and expectations needs to free his spirit to go PAST the mental illness and the thought cancer and let his spirit soar. Does driving a golf cart do that for him...yes, it does. Let's go drive a damned golf cart. Does painting do that...yes...let's paint. Does making goofy videos make him laugh and smile...yes...let's make videos! If he stabilizes and one day master's his mental illness, school, college, etc will be there to try again but in the mean time I must grab on to his happiness and passion and joy like I used to hold tight to his hopes and dreams of college and automotive engineering.
Once again, my son is being my teacher. I am learning what is truly important in life. These lessons are hard and grief is involved but if I can really and honestly let go and find acceptance in who he is today, right now, then I can find great joy each time the darkness is conquered by his smile, his laughter and that one dimple that pops out when his eyes twinkle with happiness. Oh how I have loved that dimple since the day he was born. I have found my true battle. My battle is with his darkness. Some days it wins, it takes him down, it takes me down and his sister. Somedays I win, with a small army of people who care about him. I am humbled by this journey and when I am laid out flat in grief, heart ache and fear it is much easier to find the ground beneath me. It is there, on the cold hard ground that balance can be regained. This is my journey of parenting someone with autistic spectrum disorder and mental illness. This is my opportunity to learn through humility. Grace wins every time I see that dimple. I am off to schedule a ride on a golf cart.
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