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.
I remember being there and am still there in some respects! Certain things will get easier as they all get older, you get more time & sleep, and are able to regroup. My son with autism is now 13 and I vividly remember the franticness that accompanied his earlier years.ReplyDelete
Amen sister.....I feel and know your pain great articleReplyDelete
I can renember feeling that way, and I still do. Last year was the most difficult for me because my son would lash out and hit me and tell me he wanted to live somewhere else. When nothing worked, I had to out him on medicine. Because of that medicine, he had failure to thrive and hadn't grown in 5 months. It killed his appetite. But luckily by chance a new provider saw this and switched a couole things around and he is back to growing. But that doesn't cure anything, it doesn't solve everything. Just makes it better for a little while. He still has sensory and frustration issues and times where he is very disrespectful to me and I just wanna cry. Especially when he cries at the drop of a hat (always has been like this). I don't wanna be Super Mom either. Just Mom. Thank you for such an amazing article. It is extremely appreciated because I thought I was the only one who felt this way. Thanks so much with my whole tired, battered, loving heart. Sincerely, Shannon R. An autism momReplyDelete
I am right there with you. My kid is 11 and strong. All those 'it gets better as she gets older' words of wisdom are not necessarily true. I'm running around getting copies of police reports and hospital admittances to convince the powers that be that I don't just want free babysitting. I really need help. Who knows if help is actually going to come.ReplyDelete
Thank you for sharing your truth, as it is the truth of so many of our families. <3ReplyDelete
Very well written and will hit home with all us autism mums.I would love nothing better than to be just mum to my two beautiful ASD girlsReplyDelete
Thank you so much for your emotional frankness and sincere words...You are surely not alone in this fight!! I was in tears as I was reading along your testimony as it represents the overwhelming struggle that many of us -mothers from all over the world- must deal with everyday with mostly nothing more than our maternal instincts and gut feelings to cope with the ongoing challenges we put up with daily... I've been to a point where I feel there's no more energy left to face anymore of it. All I know is that we can't quit, even though we're not super moms!!ReplyDelete
I think that perhaps you are taking the term Supermom wrong. I agree with you on all points. Being a mom to a child with Autism is extremely difficult. It is emotionally and physically exhausting. I am constantly overwhelmed by day to day life. I agree that I would appreciate support and help from those closest to me, over being left to "do it all." However, I think that the term Supermom is meant to lift us up. We do more within the first 5 minutes of our morning, than some typical moms do their entire day. When you add in the the fact that in addition to managing basic care, as well as medical management of our ASD children, along with running things for our families and many of us, who also hold down jobs. Regardless of the fact that we didn't have a choice in stepping up to the plate, when it comes to parenting our extraordinary children. We may not want to be Supermoms. No we aren't perfect. We all need a hand. We all are overwhelmed, scared, exhausted, feel isolated and feel like we can't manage things at times. However, we get up every day and we continue on, in spite of circumstances that would likely do in, any one who has not been placed in our same position. Supermom shouldn't be a pedestal ideal, that we feel we can never meet, and therefore, we are inadequate, because we aren't "perfect." I think that it should be viewed as recognition that we persist, we survive, we keep on, in spite of all of the challenges that we face each day. And at the end of the day, you are just your child's mom. But, you are doing the best you can for your son, and you are, no matter how much it seems that you miss the mark, at times, still the best mom for him. In my eyes, that does make you as Supermom, regardless of whether or not you want the title or not.ReplyDelete