I have this TOTALLY BAD ASS friend, Melissa Williams (you should follow her!) who writes beautifully poetic posts on Facebook about re-discovering her true self and reclaiming her autonomy and freedom after an abusively controlling marriage. 10 years of not being allowed to buy paper towels or tampons. And that’s just the tip of “the iceberg of darkness” she experienced and that still lives inside her. Darkness that she is healing from, and probably will be for some time. And the good news for her is that chapter of her life is OVER. She can now focus on healing and just LIVING. The fight is OVER! She can tell her ex-husband to fuck off – he will NEVER control her again – she NEVER has to return to that prison.
I LOVE reading her posts – celebrating with her and feeling right along side her the amazing freedom she feels just buying as many g*d damn paper towels as she wants. I join her in the catharsis she must feel as she writes her posts about standing in the cleaning isle of the grocery store and realizing, “HOLY SHIT! I CAN BUY WHATEVER CLEANING PRODUCTS I DAMN WELL PLEASE!” I can SOOOOO relate to these small (and also HUGE) moments of realization that freedom is REAL after years of being in a kind of prison. But I can’t really post about it. Mostly because my “captor,” the reason I was in “prison” is my child with severe Autism.
It’s not cool to rant on Facebook about how awful lifewas before I was “set free” because the source of the awfulness was – it’s hard to even type it – my child. It’s true that my thoughts and beliefs about my child and his Autism are ULTIMATELY the root cause of my suffering, but when you have a kid like mine, it’s damn near impossible to see how in holy hell you could change your thoughts and beliefs ENOUGH to be set free from the hand that you’ve been dealt.
I’ve had many small (yet huge) moments like my friend in the last couple years since I’ve found more freedom than I ever thought possible. But unlike a woman who is finally free from the control of an abusive asshole, my joyous moments of realization are tinged with guilt.
Guilt for feeling like my child created a prison in the first place.
(Although if not being able to leave the house isn’t “prison like” I don’t know what is!)
Guilt for EVEN FEELING FREEDOM AT ALL because I know there are tens of thousands – maybe hundreds of thousands of parents like me who haven’t been able to figure out the logistics or how to afford the extra support required to get even an HOUR of freedom to go to the grocery store alone. And “self-care?!?” Just don’t even.
Guilt because my freedom comes at a cost for my child. Sure his basic needs are met while I’m gone or otherwise occupied, but it’s not me. He’s not getting the extra love, patience and attention that only a mother is motivated to give. And what if the sitter forgets to give him his medicine on time, or mixes the dose wrong, or can’t soothe his tantrum, or gives him food that can set back his recovery process, or doesn’t watch him closely enough and he elopes. (If you’re not familiar with this “side effect” of Autism, here’s an article on Elopement.)
I know ALL mothers can relate to this guilt when they leave their child with a sitter, but the more disabled the child, the longer this list of worries gets – IF you’re lucky enough to find someone at all equipped to babysit for your child in the first place.
I DO make posts and share with others my stories of triumph – how changing my beliefs about my situation helped me to eventually create the circumstances to finally experience the freedom I once thought would be impossible in this lifetime. That IS healing and cathartic for sure, but unlike my friend, my freedom is temporary and tainted. Although I’ve found a practical way out of this prison so I can leave the house and work and do activities with my other children, my “captor” still holds a part of my heart and mind every moment. Turns out I didn’t really get out of prison. I just got a day pass.
Of course this beautiful child is a source of INDESCRIBABLE LOVE and JOY in my life, but at the same time a source of unimaginable stress, and talking about the stressful parts is just too much of a buzz kill on Facebook or among friends with “typical” kids. Hell, it’s even difficult to share with moms of kids with milder issues without feeling like I’m complaining and bringing everyone down.
I’ve talked about experiencing PTSD symptoms related to the extreme stress of caring for a severely disabled and sometimes violent or self-injurious child, but really in the case of severe Autism, it should just be called TSD since the P usually only comes when the unthinkable happens. There IS a small chance the P could come if we are one of the few (but
growing!) number of families who achieve recovery or independent living, but in the middle of the fight it almost feels like you are fooling yourself to even entertain that thought.
No matter how hard we work for our “miracle” of independent living, there is always, in the back of my mind, the possibility that I will never be free from the responsibility of making sure this incredible human being is safe and well taken care of. It’s a very real possibility in my awareness that I may never experience that bitter sweet “empty nest” that other parents will get to experience.
I also fear for the day when I am gone or unable to care for him and the worst part of that is: it feels unfair to ask any one person to assume that responsibility. It even feels too burdensome to ask FOUR people to share that responsibility – so how fucked up is it that SO many Autism parents shoulder THAT kind of responsibility ALONE.
My child’s existence and way of being in the world are a gift to everyone who knows him, but unlike everyone else deeply touched by my child, I might never be able to “move on” with my life the way my friend has. It’s undenaible that being his mother has enabled me to find indescribable levels of JOY that I would not have experienced with out the contrast of the tough times, but even ecstasy experienced while in prison is tainted by the bars.
I really try hard every day to keep my attention on the possibility that my child might one day be able to care for himself, but sometimes, like today I am reminded that no matter how much freedom I CAN experience right now and no matter how much progress I have made in changing my reality, this chapter of my life is FAR from being over.
I’m sorry to anyone for whom this blog post is a buzz kill. 😉 But as much as I know that “radiant living” is possible for ALL of us, I also know that ignoring or denying or glossing over our darkness is NOT the way to create more radiance. So today I “went there” to acknowledge my own dark places, to heal them a little more, and to hopefully help someone else who is still in the middle of their own battle with the darkness.
Heaps of Love to you ALL,