Friday, April 5, 2013

What I'm sick of...

So you're sick of hearing about autism huh?

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."

Guess what?

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 merry way. I'm sick of finding out we are on our own to help Max. I'm sick of there being no expert experts. I'm sick of pouring our time, money and energy into every treatment, all the while knowing that there are no promises. I just want someone to have the answers- all them, and the right ones.

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.


caseyp said...

Beautifully said

LauraJane said...

I don't know what else to say except it sucks. It really sucks.

Nicole said...

it is people like you who change the world, who make a difference, who strive for better-for change. You do what your do for Max because you love him. You do what you have to do for your family and that is a lot more then a lot of people do. It is your frustrations that push you harder. Thank God for people like you who dont give up and just accept it because it is what it is. Keep up your determination:)

B. Wilson @ Windy {City} Wilsons said...

Gah. I'm so sorry. This is a rotten reality and I wish Max was not plagued by it. He does not deserve it!

Kimberly said...

I started crying half way through because I can empathize with your pain. (I won't say I know what it's like, but Tiffany, I empathize)
Levi was accepted into ECI services this week. I fought back tears as they told me why and then tried to cover it up with all the great things he scored high in. I wanted to punch the lady in the face who was testing him and talking to me like I am an idiot!
Thank you for sharing your feelings. I wish I could give you a big ((HUG)).

Rachel said...

thanks for sharing a little bit of your reality with us, both the good and the bad.

SG said...

I'm so sorry, and I wish your load were lighter - or will be lighter soon. Your children (all 4 of them) lucked out when they got you as a mother, that's for sure. <3

Serena said...

I love this post. While my daughter does not have autism she does have a sensory processing disorder and many simple things like new shoes, a change in schedule, a new person at daycare, clothes, etc are soo hard and anxiety ridden for her. It is very hard to watch your child suffer and feel like they are missing out as well as grieving the life you imagined. Yes we love our special babies but there is a grief process as we realize some of the things we wanted for and wanted to do with our children will never happen. Hugs.

Tamara said...

I have never commented before, and hope you do not mind that I do so now. I'm not sure if you are aware of this blog/resource, so am sharing in hopes that perhaps you may find some information, encouragement and comfort in what she shares.

Thank you for your bravery and honesty in all that you share on your blog. Please know, that there are those of us out "there" who truly care about your family and your all are in my thoughts. <3

Caroline said...

Thanks for sharing this brutal and beautiful truth. I'm sorry and sick of it for you and with you. Sonja is right - your kids are damn lucky they have you.

Tiffanie Thibodeau said...

Hey there, if you ever want to talk and rant about it, you can message me. I just found out that Tristan has Autism but on the educational side. I know that it isn't as severe as a medical diagnosis but it was still hard to hear. I am thankful that he is receiving the help he needs at school to help him find ways that work for him to learn what he needs, and now I know how to help him at home and how to help him learn coping strategies. If you want to read my blog post on how I felt it might help us stick together and support each other. This is a life changing and hard thing to hear. my blog is
Also Jordan's brothers do have sever autism so I know a bit about it and can relate a little if you just want someone who knows about it and will listen and sympathizes. Sounds like you are a wonderful mother, doing your very best, and that speaks volumes! what a lucky boy to have you as his mother!

Catherine said...

This post is absolutely refreshing. I found your blog through a comment you made on a different blog and this post of yours speaks to me. Our family does not have a member with autism, but my youngest son has quad cerebral palsy. Just this morning, I was complaining to my mom that my life as a stay at home mom feels boiled down to appointments, phone calls about appointments & equipment, money stress, back pain from carrying a 50 pound child everywhere, and loading a wheelchair in and out of the van.

We have been dealt life situations that so many people will never understand. I love your reference to Holland. I cannot tell you how many people have sent me a link to that poem or how it makes me cry with frustration/grief every time I read it. If they aren't telling me about Holland, they are reminding me that God doesn't give us more than we can handle. Gah.

Thanks so much for not being all rainbows & sunshine. I certainly appreciate it.

Troy McGuffey said...

I agree. I am soo sick of hearing about "autisim". My step son will be 6 this year. I cant stand how he is. The SCREAMING for hours and hours. The destruction of 80% of the things he touches. We cannot go out as a family because of how he acts. He smashes his head against anything harder than concrete. He doesnt listen unless i raise my voice or grab him. I know he has some intelligence but he ALWAYS acts out when mom is around. Some days i just want to give up. I just want him in a facility so i can come home after working 10 hours a day and not have to hear screaming and banging every day, night, morning it never ends. The family doesnt really support all the much and honestly i dont blame them, but boy are they quick to offer solutions to what we should do. Im just glad to find a place to vent my frustration without non autistic parents calling me a bad dad.

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