Sunday, January 31, 2010

2009 in Pictures

The past few days I have been feeling a little nostalgic and decided to do a slide show of 2009. I hope you enjoy it.

Saturday, January 30, 2010

Fibromyalgia and Autism Connected?

Every once in awhile I go through a phase where I find myself blaming myself for my children being autistic. Trust me, I know this is pointless and silly, but I think every parent goes through something similar when their children are either disabled, ill or otherwise "special". It's just natural human nature.

I often find myself thinking, is this something I did during my rebellious years as a teen and young adult, is this something I did wrong when I was pregnant, did I eat too much tuna fish, did I not take enough vitamins, was I too trusting in the doctors when it came time to giving them their vaccines (something I still firmly believe played a contributing factor), did I stay in my marriage too long and many other self-deprecating thoughts.

This time, however, is different. This isn't about blaming myself for something. This is simple curiosity about a link between my chronic, painful disorder and Autism and the fact that both disorders are still inundated with mystery and puzzles. Could the mystery lie in a connection?

Well, as I started to pay more attention I started to notice that it seemed like not only could I not go anywhere without meeting at least one person who had either a child or family member who was autistic, but I also couldn't go anywhere without meeting someone who either had, or knew someone who had fibromyalgia (FMS). Is it just me or are both disorders becoming more prevalent at an alarming rate?

Then I started looking at some of the similarities in physical symptoms. Now, I know I may be alone here but my children are always complaining of one ache or pain and sometimes it seems like it is more so than others. At times Justin even seems like he is oversensitive to pain and both children are over sensitive to certain textures, smells, etc. Something I also struggle with myself. In fibromyalgia there is a definite oversensitivity to pain. Children on the Autism spectrum are known to have many sensory processing problems causing many of these children to be hypersensitive to things like touch, taste, smell, etc.

Then there are the gastrointestinal problems. Many children with autism suffer from multiple gastrointestinal issues, including, but not limited to, IBS (irritable bowel syndrome). IBS is one of the most common conditions associated with Fibromyalgia as well and I am certainly one of those who suffer from this condition as are both of my children.

On top of that there is the possible oversensitivity or vulnerability to the effects of toxins and medications. I, myself, am extremely sensitive to any medication. I found out that many people with FMS are also very oversensitive and this is one of the reasons this disorder is so difficult to treat. FMS is not curable but with certain medications some sufferers have found relief from some of the symptoms. I, unfortunately, am not one of them. I cant take anything without either getting violently ill or suffering any number of strange side effects. Both of my children are the same although their side effects seem to be more with the mind (hallucinations, irritability, suicidal thoughts, etc).

In doing an online search on a connection between autism and FMS I actually found an article that discusses how one clinic in Atlanta that specializes in FMS treatment was NOT recommending the H1N1 vaccine for their patients because of this sensitivity to toxins and the fact that the H1N1 vaccine contains the preservative Thimerisol which contains mercury. Thimerisol is one of the factors that many people, myself included, blame in the HUGE increase in the prevalence of autism. Many parents of autistic children have become more careful about vaccines because of their belief that Thimerisol contributed to their child's autism. There is a whole movement based on this premise.

I found many interesting articles while doing a search for a connection between the two and I found many articles (links that I will try and post below) that talk about this connection and some that even point to the XMRV retrovirus that has recently been found to be in blood samples taken from BOTH patients who are autistic and in those with FMS or CFS (Chronic Fatigue Syndrome) and more research is being done to further investigate this connection.

So, again, I wonder, if for no other reason than simple curiosity, could there be a link? I am wondering how many other people out there have a family history of BOTH autism and Fibromyalgia and if there is any benefit to doing more research to see.

Just food for thought. Please don't read any deep, dark meaning behind this post. This isn't another crusade to FIND A CURE for my children's autism because I have jumped OFF that bandwagon a long time ago. My goal is acceptance and awareness for my children, not a CURE. But I do find this hint of a connection, at the least, interesting. Make sure you check out the poll I have in the right hand column and let me know if you have a family history of both FMS and Autism.

Here are a list of some interesting articles I found and there are many more out there:

Fibromyalgia/Chronic Fatigue Syndrome and the H1N1 Vaccine

Doc who worked for CDC theorizes relation between Fibromyalgia, chronic fatigue syndrome and Autism

Retrovirus Implicated in Chronic Fatigue Syndrome and Fibromyalgia

Is Autism Associated With a Viral Infection?

Friday, January 29, 2010

Trusting in the Kindness of Strangers

There are days when I admit, I lose faith in humanity and in the world in general. I look around and everywhere I turn there are people doing bad things. You cant turn on the news, or read a paper without reading about all the bad things that bad people do. You cant go to the store without someone trying to steal your parking space or cutting in front of you in line. You cant drive anywhere without someone speeding by you in the breakdown lane just to get one car ahead of you.

I have spent my life, from the time I was a small child, being hurt by people I put my trust in. In 43 years I can still count on only two hands (not counting my immediate family), the number of people who were truly kind and didn't hurt me in some way.

Living with children with autism has shown me many disappointments in people. Those who judge without knowing. Those who look at your children like they are numbers or annoyances. Those who lie and cheat and only care about their budget and their job rather than standing up for what they know is right, even though what they are doing or what they are watching others doing they know to be so wrong. I have had to fight against having my children stuffed in small wooden boxes, locked in closets for hours, held face down on a floor, and so many other abusive acts that day by day my faith in people has been whittled away until there was nothing left.

And then there was Jack. Jack is an older gentleman in his 70's who visits the woman who lives next door to me. He is there almost on a daily basis doing jobs around her house. I have lived in this house for 5 years and in all those years I had never talked to Jack until a couple of months ago. We would wave to each other, and I remember occasionally getting letters in my mailbox from him offering his services for lawn care, but I had never really stopped to say hi.

Two months ago was the first time I talked to Jack. I was outside cleaning out my garage and he was next door doing some late fall cleanup. It started with a wave. Then he asked how I was. One of those questions that people ask just because they feel like they need to say something but didn't really care what the answer was, so I just replied "good, and you" and then started to walk away not really expecting an answer. But instead, he started talking. I admit, at first, I was kind of annoyed. I really had alot of work to do and I wasn't comfortable talking to this complete stranger but I didn't want to be rude so I kind of stood there, nodding my head and smiling while my mind wandered around thinking about everything I still needed to do.

I am not sure when it happened, but suddenly I realized I was listening to him. Not only was I listening but I was talking about myself too. Soon, I was telling him about my recent separation and trying to raise my two difficult children and he was telling me about his wife dying and how he and Diane (my neighbors) have been life long friends and an hour later I was still standing there listening to the life adventures of this man that for the past five years I only waved to. He asked me if I knew what family meant, where the word came from and when I said no he said that Family stands for "Father And Mother I Love You" and that it symbolizes the love a mother and father have for their children. He also told me about trips to Italy and Venice and England and the Vatican. He made me laugh with his stories of antics he and his friends got into and made me tear up when he talked about losing his wife and finding Diane again after all these years. Time just flew by.

Finally it was time to get back to work and we said goodbye and he looked at me and he said, "I know its hard to ask people for help, but if you ever need anything, even just a friend to talk to, let me know". He also warned me to be careful when I decided I was ready to start going out because the world is a scary place now and I never know who I am going to meet and where they have been or what they have done. Now, being the person I am, and finding it hard to really trust in the kindness of strangers, I just nodded okay, and thought to myself, "nobody does anything without wanting something" and "what did I get myself into" and "what is he going to want from me".

For the next couple of months, whenever I came home and saw him outside, I would wave but then quickly duck into my house. I really didn't want to risk getting into another conversation only to see what I was expecting from my messed up way of thinking. Someone who was only being nice to me because they wanted something back. So I ran.

Well, yesterday it snowed. It didn't just snow, it was freezing out and very windy. School closed early, afternoon activities were canceled and because of the cold my fibromyalgia was really flaring up. I could barely walk without a great deal of pain and I kept looking out the window at the snow piling up and thinking there was no way that I could get out there and shovel. I kept telling myself that there really wasn't enough out there to shovel anyway. Later in the afternoon I heard a noise outside my front door. I went to look out the window and my entire driveway was shoveled and there was Jack shoveling off the steps of my front porch.

I couldn't believe it. My husband has been gone since June and not once has a single one of my neighbors come over to see if I needed help even though it is very obvious that I am alone now. Even when they were standing outside watching me struggle with the lawnmower (something I never learned how to even turn on, never mind operate) not one person came over to see if I needed help. And here was this stranger, someone who doesn't even live here, trying to sneak and get my whole driveway done without me even knowing.

I stood there for a minute struggling to decide what to do. Finally I opened up the door and he looked at me and said, "I was bored". He had been over Diane's finishing up some painting and then realized he had time on his hands and not only did he shovel her driveway and mine but he did the driveway of the man on the other side of Diane's house as well, even though that man has a snow blower and was very capable of doing it himself. I didn't know what to say. Should I offer him money? Should I just say thank you? What do I do?

Finally I settled on saying thank you and mentioned to him that I had been thinking of hiring someone to do the shoveling for me this winter and if he was interested I could hire him. He looked at me like I had offended him and immediately I felt really bad. He told me that the winter was really hard time for him because he really missed his wife. Not only that, but his son just recently moved out and his house is empty. He cant stand to sit still and do nothing because it makes him miss his wife even more so from about 4:00 in the morning until 11:00 at night he is going around to all his friends houses doing work for them just to keep busy.

He said, it's not about the money. He doesn't want money. He doesn't want anything. He just likes to help people. He started talking about how he sees that I am a good mom (which, by the way, he told me spells WOW upside down) to my kids and that I have alot to deal with and my only priority right now should be taking care of my kids and myself. He told me that he is leaving in a week to go to South Carolina, but when he comes back, if he notices my driveway needs to be done and he has time he will come do it for me.

He told me to take care of myself and to be careful out there now that I am all alone and again he said that if I needed anything to let him know. He then turned and walked away. That was it.

Now I know there are people out there like me who think, this old man was probably hitting on me or he is wanting something and I have spent my life being one of those people who would think the same thing. I have a choice here. I can keep going through life expecting everyone I meet to hurt me or let me down in someway, or I can find a way, once more, to trust in the kindness of strangers. Yes, I know that doing that opens me up to more hurt, and a part of me is really not ready to do that. But a bigger part of me, the part that looks at my children and realizes that someday I wont be there for them and they will need to rely on the kindness of strangers, feels that its time to start letting go of all that pain and hurt. It's time to at least open up a little part of myself to hope. I choose to trust in Jack. To trust that there really are some people in this world who just want to be kind and don't want anything in return. Maybe I'll get hurt. And maybe I will find a part of me that has been missing for so long and find that I really can let go once in awhile and trust that things will be okay and that there really are people out there who are just kind.

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.