All Mothers are amazing. Mothers of abled and disabled children are again, amazing. Mothers who have been tapped to care for a child with medical, emotional, developmental or other challenges are downright amazing.
So, why Autism? Why are the Mothers of autistic children just a few degrees different from the rest? What happens inside the Mothers of children diagnosed on the Spectrum – (Fathers too, but that’s another blog) that makes us who we are?
It is really difficult to explain what is is like to be the Mother of a child, a beautiful baby boy or girl, who was once well, happy, healthy and alert. The Mother, who after going to a routine medical checkup, comes home and watches the whole life they knew go up in flames.
Each of us Autism Moms are singular and distinct. Just like our child’s level of involvement on the Spectrum. Each Mom has different levels of tolerance for ignorance. Group us Moms together we form a category that is so very, very different from the rest.
We love our children. We love each of them with such an intense degree of compassion that we find the endorphins EVERYDAY to “lift the car off the child”. If you have to know, there is not official “cause” of Autism. You can’t catch it. Your child is usually identified after they are well for a couple of years and then, all of a sudden, they are not well. They are autistic. What happened? Here in this confusion, your child is diagnosed Autistic, there is no known cause, but you are supposed to understand? What HAPPENED! (Again, another blog…)
So, why are Autism Mom’s different? I will attempt to explain by what we are known to do for our children:
We humbly hand out cards on airplanes that explain our child has Autism, so even though they look “normal”, they might not act typically. We are sorry for your inconvenience. We are trying to cope with the weight of the world on our shoulders. When the plane is delayed and our child is melting down it is nothing like that spoilt toddler in the supermarket who’s pissed they aren’t getting their way. This is a full on, panicked little person who has no control over their bodies or environment and they have waited the mandatory amount of time it was supposed to take. So, right here and right now are they loosing it because the plane is late. It does not matter if the CEO of the airline apologizes, it’s already too late. Please, just get the f***ing plane in the air and get us on our way!
We might get to go out sometimes as a family, early in the afternoon, to a buffet so we can take some time helping our child learn how to scoop their own macaroni and cheese onto their plate. It is a hand over hand lesson. We are the ones you grow very impatient with having to wait for. Our children may mistakenly land their fork or fist into the bowl of food. You are disgusted, and we are just trying to keep things moving so no one looses it, throws a fit, melts down, takes off their clothes, screams bloody murder, or throws a knife in your back. We are silently celebrating this enormously tiny victory getting through the buffet line, managing the plates, finishing the meal and paying our check. We seriously don’t care that we paid for ourselves but didn’t eat – and if the wait person was understanding he/she would receive a gracious tip thanking them sincerely for their trouble.
We are the ones who don’t get your need to dig yourself. Gel toe nails, really? At certain times of our lives, we are lucky to have combed our hair and put on deodorant. Even more, we really are happy for your “typicalness” and hope you keep sharing stories about your families with us even though we don’t always possess the same type of memories with ours. But please know, most therapies are not paid for by our insurance company so we’ve paid for them ourselves. Those therapies have bankrupted us. We have to pre-pay what you are saving in retirement to regain the health of our child. We are good with it and can’t imagine being so selfish not to do so. But again, gel toe nails, really?
We are the ones who push medical professionals to the brink with our endless questions, challenges, and absolute need to research our own answers before we see you. We are just making sure you know what you are doing. We sense a doctor who graduated with a C average and will not waste time with ignorance in the exam room. Please know, you are just a tool in our pocket, period.
We have studied medical journals, dictionaries, articles, books, styles and procedures. We now know what happened and we are trying to wrap our brains around what it will take to mend our own child. We will find someone to help us and someone who can handle us knowing “too much”. Do not preach to us. It is useless because we are stronger and will prevail your opinion, every time.
We compound our own vitamins. We sneak supplements in our children’s food and drinks. They may not swallow pills, so we will mix compounds with grape juice or root beer, put additives in their bathwater, rub oils in their skin…whatever it takes to deliver the nutrients they need to be physically well.
We look at every type of healing method. Eastern, Western, Native American, Ayurvedic, Holistic, and Integrative medicine – we want to know it, understand it and maybe even utilize it with our child.
We are the ones who explained the whole phenolic sulfotransferase deficiency with the anesthesiologist who went on to STILL administer the maximum damn drug dose. That lame move landed our kid in the ICU for three days instead of the outpatient procedure we signed up for. We are super pissed and will go across the bed and think nothing of throttling Dr. “Dumbass” because we had warned that SOB. “WHAT WERE YOU THINKING!”.
We are tired and We are stressed. We are passive on the things that aren’t circling our airport, ready to land more problems in our lives. We may not get all the subtle nuances of society – mostly because we don’t have the energy to care. But seriously, did you just say “Retard”? We aren’t stupid, just absorbed in what matters to us most. We are good people. But if you say “Retard” one more time…..do you really want to be the person we have license to take our stress out on? No, you don’t. Because if we actually gave ourselves permission to take our stress out on someone so ignorant……Yikes!
So please, be kind. If you know a Mom with a child on the Spectrum, know this…..she is doing everything she can. No one is perfect, especially her. She will not forgive herself long enough to realize she doesn’t have to be perfect – and she knows she will never stop trying to be so damn …(perfect).
“Never, ever, ever give up!” Winston Churchill
~ Wendy Frye