Sick of hearing about how the government won't step in and help our kids. Sick of "autism awareness." Sick of hearing about this study, or that study. Sick of hearing "one in fifty."
I'm sick of it too.
Actually, I'm sick of a lot of things.
I'm sick of spending all week driving my four year old all over town Monday through Friday. And I'm sick of carting two ten month olds along to sit in every germ infested waiting room along the way.
I'm sick of scheduling appointments. I'm sick of specialists and I'm sick of paperwork. Every new doctor, therapist or specialist requires the same information but in a slightly different format. I'm tired of filling out hundreds (yes, at this point it's been hundreds) of forms that want me to detail exactly how delayed my child is. And I'm sick of arriving at the appointment only to discover that they haven't bothered to read any of the paperwork I spent hours filling out and want to instead rehash everything while my impatient and anxious child obsessively opens and closes the office door. I'm sick of loading three children in and out of the car four to six times a day.
I'm sick of being a stay at home mom that doesn't do anything with her children except for going to appointments. This isn't what I had in mind when I pictured staying at home with my children. I pictured music class, ECFE playtime, trips to the zoo and park. I didn't picture my oldest being so stressed out by music class, or new places that we are forced to stay home. I didn't picture raising my children in a waiting room with a bunch of strangers who ask too many questions and make too many judgmental faces. I never pictured autism in my life. I certainly didn't picture autism running my life...
I'm sick of spending my time online looking up new treatments, researching supplements and map questing clinics. I'm sick of finding out that the newest, best, most promising treatment isn't "covered" or not available in this area. I'm sick of hearing how autism is a "behavioral issue" or "mental health problem." It's not. It's a MEDICAL issue.
I'm sick of hearing about gluten-free, dairy-free, soy-free, dye-free, preservative-free, non-GMO, cage-free, grass fed food. I'm sick of hearing about toxins, plastics, chemicals, sulfates, formaldehyde. I'm sick of talking about vaccines, antibiotics, probiotics, cod liver oil, vitamins and inflammation markers. I'm sick of worrying that every. single. thing. my children come into contact with is further poisoning their bodies and setting them up for a lifetime of struggles.
I'm sick of the lack of support for families dealing with autism. When your child is diagnosed with autism, no one tells you what to do next. You get a pat on the back, and a "good luck with that" look before you're sent on your
I'm sick of hearing that "I just don't know how you do it!" Guess what- I don't either. I'm barely hanging on. I'm doing it at the expense of my friendships, my marriage, myself and at Levi and Addy's expense. I hardly have time for Ellie's Light. And to me, this means I don't have for Ellie. I'm sick of explaining that we can't do this or that, because we have appointments or because my child just can't handle something like that. I hate the panic attacks Max gets when I have to leave him. I'm sick of watching the neighbors sit and chat outside while their children happily play together. I'm sick of feeling like an outsider.
I'm sick of working my four year old like a dog. I'm sick of watching him struggle with life's easiest tasks. I hate that he is missing out on the simple joy of childhood friendships. I hate that he has been robbed of so much joy because his body is under attack from something we cannot identify. I'm sick of seeing his tears over things like new shoes, a simple change in routine or having to take off his socks. It kills me to watch life be so hard for him. I'm sick of waking up in the morning and wondering if it will be a day of cooperation, flexibility and focus, or one of meltdowns, rigidity or stress. I'm sick of watching my child function in a world all of his own- one that I don't always understand, and that I'm not always welcome in. It's heartbreaking.
I'm sick of our society choosing money over our children. Our government has the power and ability to drastically change the lives of our children. And they refuse. Instead, "we" allow big companies and their pocketbooks to control the way we grow and process our food, treat our livestock and manufacture toys. I'm sick of our kids- our one in fifty kids- not being acknowledged. I'm sick of everyone talking about what a problem autism is in our modern society- but NO ONE doing anything about it.
I'm sick of Holland. Screw Holland. If I wanted to go to Holland, I would have bought a damn ticket to Holland. I'm sick of people pressuring special needs parents to be all puppies, sunshine and rainbows. Yes, we love our children. I love Max more than anything. And we do find so much joy in him. Even if Max never makes any more progress towards "normal," we love him. But because I love him so much, I refuse to just accept. Max deserves more than that. All of our children deserve more than that. Because of that, we need to be honest. We don't need to be made to feel guilty about being stressed. We are not complainers. We don't always just have to accept that hand we've been given. We get to be mad. We need to let people know how hard it is and how pervasive autism is. I'm sick of empty platitudes. Don't tell me your sorry. Help us. Help us help our kids. Be sick of autism with us.
So yeah, I'm sorry your sick of our puzzle piece logos (don't even get me started on those!), and our blue lights. Do something about it. Because we're sick of it too.