Life On The B Side

Taking all that life throws at us one moment at a time

Not for all the money in the world June 8, 2011

I’m a big proponent of Autism research. In my next life I would like to come back as a therapist, special ed teacher or researcher and so spend most of my day trying to help people with autism.  (Instead of the 9 hrs a day I now spend doing paperwork and crunching numbers).

I love to stay abreast with autism related news and I love when people send me links with information or events to check out.  I read lots of blogs from people all over the US and the world related to autism.  Some are Moms of kids with autism.  Some are people with autism and 1 is a sibling of someone with autism.  I wanna know as much as I can from all angles so that I can be the best possible parent to both my boys.  I like that celebrities like Toni Braxton are helping to shine a light on this disorder through TV ads etc.  (Not that I’m glad that Toni’s child has autism, but you know what I mean.) 

Where am I going with this you ask?  While I do want to know as much as I can and I dream of a day when the brains working on it can figure out what causes it and then how to fix it, ease it, manage it better or prevent it in the 1st place, there can be an emotional down side to all the research.   What if the answer is not really what we want to hear?  What if it’s something we as parents should’ve done differently?  What if it’s our fault somehow because we did or did not do something?  Am I ready for that?

For a while, there was lots of talk/hype about vaccines playing a roll.  Damn it.  I thought I was being so responsible by staying on top of the boys shots.  I was religious about making sure their immunization records were up to date.  Anal even.  Now I just feel guilty about it.

Not that we’re the worst but NJ seems to have a higher than the national average rate of autism.  I believe it’s somewhere around 1 in 84 here vs the national 1 in 110.  Here comes more guilt.  I’ve had several opportunities to move out of NJ.  I’ve started to make many a plan to leave but I’m still here.  Damn it.  I should’ve left when I had the chance and then the chance of my child having autism would be a tad bit lower.

A while back there was a study that said the chance of a child being born with autism is higher if you already have 1 child and the 2nd child is a boy born shortly after the 1st one.  Damn it.  My children are only 16 mths apart and the younger one is a boy.  If I had waited longer than 7 mths to get pregnant again the chance of my child having autism would be less.  But I had so loved being a Mom and I couldn’t wait to have another.  Damn me. 

During doctors visits they ask a lot of questions about the medical history in your family.  They wanna know all about the mental health issues that other people in your family have.  Damn it.  There are a number people in my family who for sure have mental issues whether they’ve been diagnosed or not.  My husband’s family is not exempt either.  There are some people there too who clearly have something shady going on in their heads.  Damn it, damn it, damn it.  What should we have known or taken into consideration before we decided to have children?

I can’t remember where it came from but a couple months after Ace was born, we ended up with a book that supposedly held the secrets to you choosing the gender of your child.  2 things.  1) I didn’t much care whether I had a boy or a girl.  2) By the time I got around to even looking at the book I was already pregnant.  Damn it.  I should’ve read the damn book and actually tried to get a girl.  Then the chance of me having a child with autism would be less. 

I’ve felt guilty so many times that I somehow should have or could have done something to prevent Jay’s autism.  But you know what …  If I had moved, or if we had waited a longer time to have our 2nd child, or if he had been a girl, or if we had whatever … we wouldn’t have the Jay we have today and that’s 1 kid I wouldn’t trade for the world.  I love my little man.  He brings a joy and pride to my life that I can’t describe and that I would never want to live without.  I am so glad I know him.  I am so glad I have HIM.

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4 Responses to “Not for all the money in the world”

  1. rhemashope Says:

    yes! i love your perspective at the end. you are so blessed with both of your boys!

    i used to read every-autism-thing i could get my hands on. i had to cut back after a while b/c of the emotional downside, as you say.

    a passage that brings me comfort when i start to go down the ‘should-have, could-have, would-have’ road:

    “As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
    “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life.”” John 9:1-3

  2. Thanks for that passage. It fits perfectly. Faith is an amazing thing. It provides a strength and courage like nothing else can. Everyone should have that “shoulder” to lean on and those “arms” to help lift you up when you stumble.

  3. Heather Says:

    Hey J Train! Nice to find your blog and read the voice of another parent who understands this autism ride. I read your words and just nod my head in recognition at everything you have to say. Way to go on the fundraising for Autism Speaks! That is a lot of cash you guys raised! Keep your chin up, it’s all we can do.


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