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May 10, 2014

How to be a Mother. In case you were curious.

How to be a Mother; from the mother of 3 on the Autism spectrum

This Mother's Day weekend, I want to share my perspective on mothering by way of having 3 children on the Autism spectrum.

About 16 years ago, when I first was initiated into motherhood (i.e. by being pregnant,) I thought being a mother would be easy. You really have to love the naivete of a twenty year old girl. I had watched other girls and women effortlessly give birth to amazing, perfect children and I had no doubt that I would as well. That is exactly what I did. My newborn son was the joy of my life, my raison d'etre, the apple of my eye. Everything he did was amazing and I couldn't even remember my life before him. I still treasure those early gifts of motherhood, watching your child learn and grow and being totally amazed by what you created. It was so empowering, I felt like a god. No, I was God. Next stop, reality check.

At this point you can insert my-your-our Autism intro story. Regression, blah blah blah, search for answers, blah blah, blah, diagnosis, blah.

Here is where it gets complicated; not unlike many other Autism parents, I mourned the loss of what I didn't have. I was sorrowful, I blamed myself.
I also stopped being joyful and became an emotionless task master. I threw myself into autism research and treatments. As my 2 subsequent children were also diagnosed, I started to feel less like a mother and more like a caregiver in the most disconnected sense of the word. Did I love my babies? Of course, without a doubt, but I found it very difficult to find joy in my situation.

Unfortunately I was trapped by the idea of what I perceived I lost to Autism. Children can represent so many things for parents. They are the connection between you and your mate,  the unrealized dreams for the future and most importantly they are your legacy. My kids represented my footprint on this earth, my genetic contribution to the world narrative. They would carry my story long after I'm gone. Maybe. Maybe not.

Sound a little pitiful? I was.

I started to look for the meaning of Autism. Why me? Why them? Was there a greater spiritual purpose to being Autistic? I certainly would like to believe so. I don't think its my place to decide especially since I am not Autistic. I will never truly understand how my kids see the world and their place in it. It dawned on me that my sadness was inappropriate. I had allowed myself to become wrapped up in the identity of Autism. In my search and struggle for meaning I could now see that I needed to separate myself from the concept of autism, disability and ability all together.
I am a mother, their mother. Their only mother, no matter what. Labels and perceptions are unimportant. I don't know how it happened, but I figured it out. I am still me. Yes, I am a mother, but I am still me. I don't need my kids to carry my legacy, because I can carry my own and they can carry their own and neither has to be connected or related even though it is. The point is it doesn't have to.
Guess what, you don't have to live for your kids, be responsible, take care of them, yes, but you really need a life of your own, totally unrelated to your offspring.

Kudos to you who got it early on. I am not ashamed to say I didn't. Life is a journey, our experiences can take us so many different places. Places we may never have gone.

Am I tired? Yes. Am I overwhelmed? Hell yes. Is it worth it? What is "it?" If "it" is the experience of being on the ride of a lifetime, then yes. If "it" is some inane idea about sacrifice and oblation, than no. Raising children is not about sacrifice, its about responsibility. I always wanted children, I have never sacrificed anything about my life for my kids. I hate when people use sacrifice and children in the same sentence, it makes it sound like you are doing something different than 5 zillion other parents. I make adult decisions and sometimes I make child decisions, but sacrifice is for saviors and I am no savior. I'm no saint either.

My perspective has been forever altered, in a good way. I have met wonderful, amazing people that only exist in the autism world. I am blessed, because my kids will never be pawns and I can never live vicariously through their exploits. Not because they don't have them, but because I don't want to. Frankly my kids have some pretty amazing experiences and they get to do very cool things. Guess what? So do I and so will I.
People want to see the tragedy of our story and there is nothing to see. Sorry, no trainwreck here, keep moving no car crash to see. Yes we do have our Autism themed emergencies; wandering, meltdowns and communication difficulties. So what? What family is without blemish?

I am a damn good mother. If I do say so myself. I am proud of me. My kids adore me, despite my early doubts and confusion and my crew is awesome.


How to be a mother? Be yourself. Do you. Not in the irresponsible, unfit parent way, but in the confident, loving and healthy way. Release your expectations stand back and let your children blossom. They chose you for reason.

Happy Mother's Day.

March 27, 2014

1 in 68, So much for awareness....

Today the Center for Disease Control's (CDC) Autism and Developmental Disabilities Monitoring (ADDM) Network released a study stating that 1 in 68 children are diagnosed with Autism. Not only did the report show a 30% increase since its last estimate of 1 in 88, but it also provides a new profile of autism.

10 Things You Need To Know About CDC's Latest Report from the Autism and Developmental Disabilities Monitoring Network

I don't know what to say. How far has Autism Awareness gotten us? Awareness is great. Awareness is necessary, but at some point, we as a society need to make a decision. How are we going to deal with the increase in incidents of autism? The data used to determine the new rates was collected in 2010. Autism "awareness" was well underway. The non-profit I helped to create in 2006 was one of many other awareness organizations providing information to parents. There is something going on here that can no longer be ignored.

If its genetics, you mean to tell me that every 2 years more and more people are becoming more genetically predisposed to having children with Autism? Is that possible, does that make sense?

I don't have much to say. I would like to see a cause explored that doesn't conveniently pass the buck to genetics.

Link to the study below;
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