A Shining Mama


So yesterday was Autism Awareness Day and there was quite a bit of coverage in the media on this crazy, confusing, and incredibly heart breaking thing called "autism". I am so utterly perplexed by this "disease". I personally know 4 families who are in the thick of trying to figure out what is going on with their child, and who are in the trenches of doing everything they can to rescue their children. It is an incredibly personal thing for me because my daughter deals with sensory integration issues (all children who are autistic have sensory integration issues, but not all children who have sensory issues are autistic). For much of my daughter's development that "a" word has hidden in the back of my mind. I have mentioned it to my pediatrician many times, googled it MANY times, and prayed about it even more times. While she does not where the label, "autism", she deals with some of the same issues.

There is nothing like watching your child lose their mind with fear over something as simple as a trash truck. There is nothing like the exhaustion that comes from living life looking through a lense of protection for your child. I used to describe it to my husband as me feeling like "I am constantly running interference". I was like a hawk, scanning the environment, just looking for the land mines that are ready to erupt.

...the air conditioning fan in home depot...a child shouting near to her...a dog suddenly barking and startling her when she was concentrating on something...climbing up ladders on the play structure at a park...the flush of a public toilet...the hand dryer in a public restroom...the clapping after singing "Happy Birthday" at a birthday party...the smoke that rises after blowing out the candles on the birthday cake...

These were all common, everyday experiences that would reduce her to hysterics and utter meltdowns. I would feel defensive for my child, embarrassed, like a failure of a parent (I mean, what kid is really afraid of balloons?), and utterly fearful for what this meant for her life. I hated that I saw my daughter's childhood evaporating before my eyes and what I had hoped would be carefree and full of adventure, felt often like it was replaced with anxiety, fear and a look of sadness in her eyes.

I can say with such thankfulness that my sweet girl has made such incredible progress. She is learning how to cope better and is actually un-phased by many of the things that used to cause her to want to run into oncoming traffic or to crawl up my body faster than a monkey! Her nervous system is catching up and we are doing everything that we can to aid that process! It is still a struggle, though. There are still ample opportunities for melt downs and I still feel like I have to constantly prepare her for things that many other kids would not even notice.

In watching the news coverage yesterday, I happened to catch Larry King's show
which featured Jenny McCarthy (she was on his show last year too) and a whole host of doctors and experts with vast opinions on autism. I watched this show with tears in my eyes. I am absolutely moved by so many elements:

-just the statistics rock me - I mean, seriously, that autism is now effecting 1 in 150 children?! That is insane!


-I think of my friends who are in the thick of trying to recover their children from this and I am so proud of them, and so hopeful for them, and at the same time, so confused for them...what is doing this to our generation's children?

-and, truly, watching Jenny speak and hearing her take on some of these doctors with the absolute passion of a Mama Bear was so moving! I could almost see her Mama Manifesto scrolling across the screen - "my manifesto is to fight for the kids who have lost their words. to champion the cause of the families who are trying to rescue their kids, and to take on the doctors who belittle us and ignore us...etc." I am sure that her version would have a few words with some extra spice on them! :) - I could not help but say, "YES!!!" out loud when she told the one doctor that it was "the damn truth!" Go Jenny!

She is rad! Her passion is fierce! The awareness that she is raising is inspiring. And, if you have not heard her story, her
book is incredibly moving, and I strongly encourage every mother out there to read it. Even if you will never deal with any sort of "issue" with your kid, it can only stir up empathy in us as fellow moms. I just want to give her the "mama salute" and say, "well done and thank you!" It is incredible to be reminded that we all have a voice.

My two last parting thoughts on this crazy thing called autism are:

1. Just like most of the world, I do not have the answer to what is causing this, but I do believe that there is something going on environmentally to contribute to it. A big part of what we want to do on this blog is raise awareness in the area of health for our kids, and I think that autism is a huge, glaring red flag waving high above our kids heads asking us to take note of what we are exposing them to. We have to be their advocates because unfortunately we cannot trust that the government is monitoring all the food and drugs that are readily available and encouraged in our society. From one mama to another, I would encourage us all to begin to ask more questions about the status quo regarding vaccinations (question the schedule, make sure that the vaccines are mercury free - ASK TO SEE THE LABEL, separate them as much as possible, and maybe read up on whether or not you want to do them at all) and environmental toxins. There is some pretty nasty stuff in everyday places (the paint on our walls, the furniture we live on, the sippy cups and bottles that are the highest selling brands, our hygiene products, etc.). We cannot live in a cave, but we can begin to look closely at what is around us and make changes where we can (more brands of paint are starting to make low or no VOC paint,
there are sippy cups and bottles made without BPA, etc.) We will be posting more about these specific issues as time goes on... it is baby steps for all of us and if we can make little changes as we move along, we will all be in a better place. I am not saying AT ALL that vaccinations should be destroyed and removed from the medical world entirely. I, myself, do not feel comfortable vaccinating my kids at this point in time, but that is a personal decision connected to a very heated debate and I respect every mother's instincts on this one. I do think that reform is needed in the area of vaccinations and I am thankful for what Jenny is doing in this regard. Jenny's son, Evan, is living proof that environmental factors play a big part in this whole thing and she claims that changing his diet and what he is exposed to have led to him being "recovered."

2. If nothing else, I hope that Autism Awareness raised the level of empathy for our nation. I have been the mom in the grocery story who is shamefully embarrassed because my child freaked out and started screaming over something that appears silly. Actually, I think that we have all been the mom who feels overwhelmed and "less - than" as a parent and the last thing we want is a judgemental stare or loud sigh from someone standing near us. What a beautiful place this would be if rather than doing that, fellow moms offered to help us get our screaming kid and our groceries to our car. Or, if at the end of a play date gone wrong, we could hug the mommy who is about to get in her car and drive home with tears streaming down her face and say, "I think you are really doing a good job and I know you love your kid. And, I love your kid." Because at the end of the day, that is really what matters - we love our kids.

-ab


3 comments:

  1. wow! thanks for this post-i am one of those moms-trying to recover my daughter-with NO insurance coverage! thanks for doing what you do-and for your kind words on autism www.gentryrose.blogspot.com i just happened across your rockin blog-bookmarked it-LV IT! melody

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  2. When we were little, my brother had sensory issues like your daughter's. He was deathly afraid of balloons, and textures of things like grass freaked him out. He was never diagnosed with autism, or anything on the autism spectrum, but I think he has many Asperger's types of symptoms. Now he is a high functioning engineer. He lacks some socially necessary skills, but he is basically a normal, independent guy in his thirties. I hope your daughter fares well. Keep your eyes on her...

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  3. I too loved Jenny's books and they did give me a lot of empathy for parents dealing with autism. I have decided, at least for the time being, not to vacinate my 2 yo son. I did give him the whooping cough vaccine when I heard it was going around and did some research. But, definately holding off on the MMR! Maybe never on that one.

    Also, I truly believe there is an environmental/ food connection, and as a working mom I go nuts trying to balance covienience and healthfulness. I love Trader Joe's. But hey, I have to confess that once in a while, my kid will only eat un-naturally bright orange mac and cheese. Sigh.

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