Wednesday, May 12, 2010

Of hard lessons learned in perspective through parasites..

"There is that of God in every man"
                                                                      George Fox

  Sunday was Mother's day. I don't make too much of a big deal out of it-I'm a mother every day. But hey, if you want to give me flowers or candy, I'm certainly not going to complain. As a family we don't really do anything too special. I acknowledge the day because my kids do. They work diligently at school to make me unique presents-which I adore more than any store bought gift. This year, Sammy gave me a drawing of his super heroes...there was monkey man, slug man, gecko man..and a few others. Lily brought me a lovely photo of herself holding a "happy mother's day sign" and a happy mother's day magnet she had made, Zoe found an old photo frame for me to put Lily's picture..and Oscar..he gave me a packet of bath salts they had made at school. The great thing about his gift wasn't the gift itself but the wrapping. Oscar didn't care about the bath salts, what he cared about was his homemade wrapping paper. "Mama! Did you see it! They asked me what your favorite color was and I said every I used lots of colors and drew flowers." He also included a little poem. Of course this was the poem that all the kids were given to write-but Oscar, he made sure his writing was perfect. This from a boy who struggles with writing and fine motor skills. A boy who does not like to write-and will avoid it whenever possible. He did this for me. They all did. Sigh... Sometimes I get overwhelmed by their love and trust. They give of themselves so readily, so completely...and I think to myself "I am so loved" and then I second guess myself and think "what did I ever do to deserve this?" When I write that I am a woman perplexed...I really mean it.

  I became a mother somewhat reluctantly. I really loved the life that Omar and I had and I wasn't too sure that I wanted to give it up. I knew that once I committed to having kids, our lives would change..would no longer be our own..and I was scared. I think that singularly we are all selfish to an extent. Motherhood is selfless. I didn't know if I could or even would be up to the task. Needless to say-four kids later,(reluctance seems to have given over to exuberance.) I think I'm doing o.k. That's not to say that I don't have my moments..times where I look back oh so fondly on my early years of irresponsibility ..of sleeping late and shooting pool-of coming and going as I pleased. They were lovely times...really...lovely. Most of the time though, I am just too busy living my life to lament the past-besides I have much joy in the here and now. There is no point in mourning what I am no longer. I'd rather celebrate what I have become. Or at least enjoy it.

  I read a lot of blogs. Most of them tend to be by parents. Of course seeing as I have autistic kids-I seek that commonality in most of what I read. I belong to a few bloglists and lately I'm having trouble with one of them. The idea of this particular list is for people in the autism community to come together to try and "solve the puzzle of autism". I admit, I was flattered to be asked to join. It is always a nice ego boost when someone that you don't know comes along to say "we want you".

  The problem I am having with this particular bloglist is that they seem to focus on the woe and the woo. Look, I get that raising a child with disabilities is hard. Getting a diagnosis of autism can be earth shattering. What parent doesn't want the world to be easy for their kids? So I can accept the "woe" posts..because there are others there to counter them. Definitely not as many..but hey at least they are there....sort of.

  It's the cure woo that really bothers me. There is a person on this bloglist who they publish frequently. He'll write a vague scientific post in the attempt to draw you to his site(also advertised on this bloglist). Where he writes all about how autism has stolen your life, your family, your special moments..and by the way, HE HAS A CURE! Although it involves a lot of money and..well worms. (among other things) Yes, he will make you want to jump out of bed happy every morning..cause he can take away that horrible autism that has ruined YOUR life! Well holy crap..pass the fishing hook..he's got worms to share! And we all know that worms are good at solving puzzles..maybe even "The puzzle of autism".

  When I write about my kids, I am in essence sharing them with my readers. Allowing them a glimpse at what holds my heart.. They are human beings..people in their own right. Why would I allow my stories to be posted on a place that doesn't respect that? I understand offering different perspectives and different points of view. But when someone is included who speaks of autistic children as if they are somehow "less than", "broken" or a "tragedy"..that goes beyond point of view..and borders on hatred. My kids deserve better. Acceptance, accommodation's, services and inclusion for everyone. What is so puzzling about that?

  This has already gone way longer than usual..and if you stuck with me-thanks. I would love to hear your opinions on can be anonymous..don't have to be a blogger or have an account to join in..I'd like to know what you think. Mother's day is every day..and even though my kids might not remember that..they count on me not to forget.

(btw-I don't have a link on this page to the bloglist I mentioned..)


Kim Wombles said...

Having waded through the wormy woo you write of, I concur. The idea of holding out the most precious part of our hearts, our children, and stories about them, to know that these stories are at the same site that hosts this celebration of woo, that in fact, caters to it, puts it front and center, well, I think we can and should say, no thanks.

Jen said...

Ugh, WORMS?? I had better not get started, suffice to say I totally agree with you and I have deleted everything else I was going to say because I was going on a bit.

My son, none of my three children in fact, are tragedies. I would run a mile from someone who touts silly unproven therapy that preys on the insecurities of parents of any child, regardless of special needs. Oooook, I will stop now!


jazzygal said...

Home made pressies do it for me too Kathleen! What extraordinary lengths Oscar went too for his mum!! Lovely kid. They all are.

I don't know the bloglist to which you refer but I think you should go with your instincts. Our posts all celebrate our kids achievements. Yes we share some of the difficult moments but that's usually in order to help others too. Most of us always try to include a possible solution that we're working on to help solve the issue and then some others will make helpful suggestions. xx Jazzy

kathleen said...

Thanks for the feedback! Yes-I have to cast aside the good old ego and do the right thing...I understand people expressing different points of view-but when it is scientifically inaccurate-or belittles someone is that helpful?