Thursday, January 28, 2010

What is an Autism Warrior Mom?

Well, I guess that can mean something different to everyone but for me, being an autism warrior mom means that I am not content to just sit back and let things just happen whether right or wrong. It means doing everything I can to make sure that my children have the best chance possible of living a healthy, happy and successful life and that they aren't discriminated against, abused, forgotten or judged not by who they are and what they are capable of, but what disorder they have or how much they can or can't do. It means fighting for my children's rights and for their education and helping to make the world a better, more accepting place for them.

That doesn't mean that in order to be a warrior mom you have to be relentless every second of every day banging down doors of politicians and running all sorts of groups and making sure that everyone knows your name and who you are. You can be a warrior mom and still be quiet and unknown. Maybe you aren't beating down the doors of the politicians up at the capital but you are storming into the school and demanding that your child never be put in another restraint again. Maybe you are online talking to friends and supporting them and offering advice to them about what has worked for you and doing what little you can to spread the news about how prevalent autism is and what changes need to be made to make our community a safer place for our children. You don't have to be in every newspaper and on every TV show and have your name known by every state representative and senator in order to be a warrior mom. You just have to be a mom fighting for your kids against the wrongs and injustices that our kids face on a daily basis. That's what it means to me, but you might disagree.

Let me just clarify something. I am not talking about the same WARRIOR MOM that Jenny McCarthy talks about. The mom that tries anything and everything out there to help their child, which trust me, I have no problems with or want to offend in any way. I am talking about a different kind of warrior mom. A mom who loves her child just as much and will be a warrior when it comes to fighting for her children's rights. And for the record, I have tried just about everything, including the diets and maybe, someday, I will talk about that. So I hope I don't offend anyone or break any rules by calling my blog Life of an Autism Warrior Mom because that isnt my intent. I am not comparing myself to anyone else and I am not trying to steal anything.

Let me introduce myself. My name is Phyllis Parmelee and I am a mom to two wonderful, loving, extremely smart boys who just happen to also be autistic. They are Justin, age 15, and Tyler, age 10 and while they have many similarities they are also completely different. The saying goes, "if you have met one child with autism, you have met one child with autism." Everyone is different with different strength's, weaknesses and needs. My children are no different.

I am a stay at home mom who also happens to have fibromyalgia, a non-curable, chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain. I also am recently a single mom, an Avon representative, and an autism warrior mom.

I don't think there is an administrator in our school district who hasn't heard my name, most likely with the terms hysterical, over-protective or some other negative term attached to it but that's good because they know, I am not one of those mom's who just sit back, accept whatever they tell me and let them do whatever they want if it isn't what's best for my child. They know that they need to stop, sit back and think about how I am going to react to something that may or may not be in my child's best interest.

For example, having your child in 39 restraints in one school year is not what is best for my child. Having a behavior plan that utilizes the child's strength's and interests and rewards rather than punishes is best for my child. Making changes to my child's program and behavior plans without informing me first is not what is best for my child. Discussing those changes with me and allowing me to have some input into the plan since I am the one who knows my child best, is what's best for my child. See? A warrior mom. Not someone who is quiet and doesn't want to know because I don't want to deal or because I just accept that the professionals know more than I do. Someone who learns, who acts and who fights when a fight needs to be fought. Anyone can do it. Give it a try.

What do I hope to accomplish by creating this blog? Absolutely nothing. It's one more tool for me to reach my goal of being an autism warrior mom. Its a way for me to record my thoughts to help me deal with the stresses of being a mom to two autistic children, while going through a divorce, dealing with a chronic illness and being an Avon representative. Maybe in the process I will jot something down that might help someone else and that would be awesome. But mostly, this is for me.

And while the title is "Life of an Autism Warrior Mom" that doesn't mean that all of my posts will be about being an autism warrior mom. I will post about whatever I feel like posting that day whether its autism, fibromyalgia, my kids accomplishments that day, my avon business, being a single mom or the weather or anything else that comes to mind. It's just a title.

I don't mind peekers, lurkers, or anyone else who wants to share in my trials and tribulations. All are welcome to take a trip with me through this thing called life and while mine might be more hectic and stressful than most, I know there are always people out there who have it harder so this isn't about bragging about how hard my life is. This is just my life. I hope you will stay tuned and find something helpful but if not, that's cool too.

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