I am angry that Autism is the single biggest influence on my family. It is all encompassing and as much as I try to not make it so, it is. It impacts The Hub's job, where we live, our marriage, our relationship with friends and family, our financial security and most importantly it impacts the most important things in our world, our children.
I am angry that I've been spreading awareness now for 10 years. I've marched, walked, written, mailed, donated and spoken. Has it made a difference? It seems to me that the people in Washington DC aren't listening to an over-educated housewife/mother, neither are the pharmaceutical companies, the environmental agencies, the medical community or the school board. "They" aren't listening to us, we are talking, advocating, yelling and there's no response. We are giving time we don't have, resources we need and putting ourselves out there for public inspection all to share our story, to spread awareness and to help. That after all my work for awareness, I still hear these things (thank you Single Mothers Who Have Children With Autism):
I am angry that it doesn't get easier. Every regression, every new issue, every new diagnosis is like starting all over again. Research, educate yourself so that you can advocate for your children. It's up to you to fight the fight, to get what they need to SURVIVE to THRIVE.
I'm angry at what I am hearing coming out of the Republican party (and some Democrats as well) who see my children as a burden on the economy, who consider their education, their therapies and their insurance an "entitlement". Who want to reduce early intervention, special education and therapeutic services and still expect my kids to grow up and contribute to society in a meaningful manner. How will that be possible without resources now?
I am angry that high functioning special education students slip through the cracks in the public school system. They are bullied. They are bright kids who cannot learn in the way the school teaches.
I am angry that every achievement for my kids is "in spite of Autism" when some things are theirs and theirs alone.
I am angry that I have to advocate (read: fight) for everything, multiple times a year. I am so tired of fighting.
I am angry that I have heard "my brain doesn't work", "I can't think", "I hate Autism! I don't want to have it!" from my 8 year old.
I am angry that I have had to do a restraint on my child. That he will fight against me with everything he has and yet when I look in his eyes, he isn't "there". That I am afraid every time he won't come back.
I am angry that Biomedical Doctors and standard Medical Doctors refuse to take into consideration each other's research and methodology. That they refuse to work together. That parents are treated like idiots for listening or considering a biomedical treatment when discussing it with a medical doctor and vice versa. That I read and educate myself for days, weeks even before an appointment and have my questions dismissed as "without medical merit" and "thats not a proven therapy".
I am angry that at one point or another I have had to question every single food item, cleaning product, vaccine, and supplement I've ever given my children.
I am angry at people and families who take for granted the ability to go on vacation, to run an errand, to go for a walk. This is what I hate the most because it tears me in two. I am happy that not every family has to deal with Autism, its just that there are times I wish we could be one of them.
I am angry at the new 1 in 50 statistic, I was angry at 1 in 88, 1 in 110... I am angry at these numbers, they represent a CHILD and a FAMILY. Ignore them, debate them, I don't care... 1 in any number is too many, 1 in 50 should scare every single person who reads it. Thats 2% and I don't even earn 2% on my checking account because that would be "ridiculous".
I am angry that I have to live forever. That my child may need my help forever. That he may never have a family of his own, that I may never have grandchildren. That I have to wish every single day that I will out-live my own children even though losing them is my own personal nightmare. My only way out of this is to fight now, every single day, to help them NOW so that they may have a chance later. I am so tired of fighting.
I am angry at so many things, more things than I can even put into one blog post. I try not to be angry, it doesn't serve a purpose but it happens. I have my own Autism Sucks days just like my kids do. I'm allowed to get mad and so are they.
I think that more than anything else, what it the most unfair of any of it is...
What I am the most angry at is something I cannot yell at, I cannot hit it, I can't fight it, sue it, shoot it or kill it, it's AUTISM. It's not a person, it's not an institution it's not a thing and no matter how mad I get, rationally or irrationally it is as solid as air. On days like today when I am angry, mad, pissed off and hurt at what it has done to my children and my family there is no one and nothing I can fight. So I make another blog post, I pick up another research book, I make the calls I need to make and I hope that at some point the anger turns into strength and keeps me going.