Imagine this… you are standing in your kitchen and the television in the living room is playing Trolls for the one millionth time on high volume, your son is in the other living room laughing with his friends as they play fortnight on the ipad and they are yelling and laughing in excitement, your special needs son is in the basement and you can hear the therapist working with him as he yells out in frustration and you know he just bit himself again, dinner is cooking on the stove and your mind is going a million miles a minute trying to remember that one kid still has homework, the other needs a bath and oh yeah don’t forget the laundry in the washer again… Your husband (your only real adult interaction of the day) isn’t home beacuse he had to work late and you know when he gets home he will be understandably exhausted so he will come in, eat and that will be the last of him. You get dinner finished and the children wont sit and your special needs child wont eat what you made so you fly through your meal scarfing down what you can so you can go make something he will eat even though the meal you made was his favorite last week. after cleaning the kitchen and doing the homework and bathing the kids you sit down on the couch starting at the tv noting you aren’t even watching it, exhausted, knowing you will get up tomorrow to the same challenges. And this is a good day.
I want to talk about something that is almost so taboo that its hardly ever discussed. I want to talk about the mental health of those who caretake those on the autism spectrum and really if we are honest any special needs individual. I want to talk about the daily struggle in our minds as we navigate the care of our children and the battles in our minds. There is a constant worry that we carry that never really goes away. There is fear, there is anger, there are the questions “why?” the sleepless nights, the moments where we ask ourselves “am i doing the right thing” knowing we will never really get that answer, there is endless laundry (especially for the almost 20% of us who will never have potty trained kids or those of us fighting that battle and somewhat winning so the hope keeps the pull ups in the cabinet despite the mess), the broken furniture, the door locks, the window locks, the fridge locks, the neighbors that aren’t quite sure what to say so they just look out of the corner of their eye when he is outside, the loneliness, the isolation, the loss of self, the constant placing of yourself last out of love, the jealousy and last but not least that never ceasing feeling of loss and desperation. And when you put all of these things together its a recipe for disaster.
I find it troubling that those of us in the autism community don’t talk about this more. I mean, we are all battling it some more than others of course but its all valid. As I travel from Facebook site to Facebook site I cant help but Laugh at the memes that other autism parents have made with funny sayings, you know like the ones that make light of the difficult times. Sure, they are great, they are funny and I often share them on my facebook to make light of the situation but when you really sit back and think about it the things that we are laughing at are the things that are really breaking us. What if I told you that our jokes are really our methods of survival and our attempt at remaining valid to the rest of the world? Need an example of what I am talking about? Observe.
Ok so yea, this is a picture that most parents would get even the ones with only typical children but what if i told you the precipiting behavior for this photo and its saying was what caused that parent to lose it earlier that afternoon? What if i told you that child had talked about nothing but that lego man for hours upon hours and the parent had spent most of of their week looking for it as their child screamed and melted down? Because honestly, that is the reality for most of us but we hide it. We hide the battle that got us to the point of this being funny.
There is a point of exhaustion that we, as special needs parents reach at various intervals and sometimes we are lucky enough to find someone at the same level as us and we connect for a while until we slip into different stages of emotion. But I think its time that we talked about all of this. Got this all out in the open and said, “Funny, not funny”. We need to stop saying we are okay when we aren’t. And most importantly the mental health system needs to step up and recognize that we CAN’T get help. We don’t have the time, economic resources or the availability. And for those of us that do seek out help we are so conditioned into the thinking that “they don’t get it, they don’t get me, my situation is so far fetched they wouldn’t believe me if I told them I found my son on the roof last night” that we either don’t share the realities or we are proven right in our assumptions.
I’m gonna be honest here and say from my experiences and interactions with other parents there is a high rate of substance abuse in the special needs community be it Alcohol, marijuana, sleeping medications and yes even pain medications you just don’t hear about it or see it because most of us don’t get opportunities to leave our house much and we cant get the mental health resources we need to deal with it effectively because lets face it, mental health professionals wont come to us and we can barely make it to the grocery store. (thank God for Grocery online ordering)
One could argue that with the advent of social media we have created a greater sense of community among those in the special community. Sure, there are autism support pages and the like however, It is rare for a parent to go on there and say, “I am struggling”. These pages are often filled with people asking for help in creating their child’s IEP or advice on how to fix a new behavior challenge but almost never do i see parents asking for help for themselves. Are we hiding behind the autism lingo or are we really that lost that we don’t realize we need help too? Are we trying to be super parents or are we just so conditioned to being told no when we ask for help that we think no one can help us?
This is something as a community we need to fix. we need to stop hiding the fact that we are sad, depressed, mad, can’t turn down that drink (that turns into a half bottle of wine) at 5 pm when everything is spinning around us, can’t sleep without that hit or cant relax without that vicodin that calms our physical nerves that are really caused by stress… and the mental health system needs to step in and say “this is a community we are failing and we need to do better. We need to create a platform that is both accessable and safe for these parents to get help”.
Caring for a special needs child is stressful, its hard, its isolating and it really needs to take a community effort to get them to be the best that they can be. But the community around us can’t help us if we keep hiding. I say, its time we started talking about it. Its time we approach our local autism supports and say “hey, by the way, there’s this thing and we need to talk about it”.