The SuperMom I Don't Want to Be
First of all, for the last few years I have felt like anything but a supermom. I have felt defeated, overwhelmed, sometimes cautiously optimistic, drained, but never super. I've seen the shirt and heard the mantra that "God found the strongest women and made them Autism Moms"...pfff. Or how about regular women get handed an extraordinary parenting challenge and are doing their best everyday to rise to that challenge. Some days we don't get there and there is no switch that flips on magical parenting powers when your kid gets an autism diagnosis. This shit is hard and you hope everyday that your best is going to be enough.
Secondly, I don't know of one autism mom that wouldn't turn in her cape to get some real support and assistance from professionals, educators, doctors, friends and family. When someone says "I don't know how you do it all..." most of us think to ourselves, "Well, we have to do it all. There isn't a choice." No one is going to hold our hands while we navigate and often fight the school system for proper placement and the right supports. No therapist is going to be there while he goes into a downward spiral over the weekends and spends hours raging. No doctor is going to tell us which therapies, when to give up on therapies, which diets, what's medical versus neurological, when to turn to medication, when to give up on a medication, what will insurance cover, what is the responsibility of the school versus private therapies or how to put all of that together and get a holistic picture moving forward. So we, as parents, do the best we can with the bits and pieces we gather from research, from our kids' teacher, from our doctors, from our online autism community and we map out some semblance of a plan. And all of that does take a colossal effort, but it shouldn't all fall on us. We would love to have more direction. We would love to have someone hold our hand. We would love for someone to get the 10 professionals who work with our kid in one room with us all at once and discuss our ultimate goals and methods going forward. But that isn't how it works, even with 1 in 68 kids now on the spectrum autism parents can't just be parents, we have to be case managers and IEP managers and insurance experts because right now there isn't a better way. If we simply choose not to do any of that, our kid, our families, our life falls apart.
Lastly, autism parents already feel incredibly isolated. The SuperMom Autism Mom complex sets up the unrealistic expectation that we are supposed to put on a happy face, have unabated optimism and carry our autism awareness torch through it all. Unlike other parents who have a child with a disability, mental or physical illness, we are torn apart when we vent about the hardships autism presents to our children and to our families. We all love our children, but are told we have to love their autism too. While other parents openly discuss hating watching what anxiety, or Sensory Processing Disorder, or OCD, or bipolar disorder does to their child, our autistic children are facing many of the same symptoms and disorders and, yet, I am expected to bury all of that and only talk about my son's amazing memory, unique perspective on the world and his excitement for life.
Don't get me wrong, I love those things and I will celebrate his successes and him as a person until the day I die, but right now our challenges outweigh our celebrations. Right now I'm wearing long sleeved sweatshirts everyday to avoid his teeth breaking through my skin. Right now I'm frustrated that he's crumbling inside and not a single professional on our team has the solution to stop the fall. Right now I'm exhausted from dodging and taking blows and I'm devastated that my other two children are looking on while it happens. Right now I'm in tears that my baby just had to have a prescription written for an immediate sedative because we've had too many recurrent rages go on for hours. Right now I'm terrified that as this beautiful boy gets bigger onlookers will misinterpret his sensory overload or short circuiting and will call the police. Right now I'm scared that during meltdowns he's screaming phrases he doesn't even understand; phrases that had the doctor on the other end of the phone wanting to call a squad and have him admitted.
Right now this is where we are. And it sucks. I don't want to put every ounce of energy I have into finding the solutions to get us to a more manageable place. I don't want to spend all of my time advocating for better treatment. I don't want to try a new medicine and hope the good outweighs the bad. I don't want to put up a facade of strength when all I want to do is cry. But there is no alternative.
I don't want to be SuperMom. I just want to be his mom.