Saturday, June 30, 2012

Autism Rant for Moms

 

So something very disturbing is going on in the “Special Needs Kids” circles, which are beginning to piss me off.  It’s actually been brewing for a while, and now a celebrity and her irritating shrillness has taken it to level that I want to respond to.

There is a lot of tension between moms and groups of moms in the autism community, and I think it’s just because everyone is missing the point.  Our kids are sick for crying out loud. We all want help and answers, and a cure and peace of mind that what we are doing is the right thing for them, nothing more, nothing less.

But my point is, does it really fucking matter anymore?  There are new parents and families entering this community of autism and special needs arena daily.  The number is 1 in 88.  Parents are coming in with that same deer in the headlights look that I still have and that many had years ago.  Do you know what these people need???? They need compassion and a hug, and an ear.  They don’t need the militant person telling them what caused autism and how it’s their way will recover them.  They don’t need anyone telling them anything, unless they ask, and when they ask, the answers should be polite, and caring, and just share your experience, strength and hope. 

I have 2 boys with Autism, one child is vaccinated, and one isn’t – so in my world the vaccination injury thing isn’t necessarily the end all be all of my life.  But in your world it may be the thing that caused autism and injured your child, and I don’t judge either way, your family, your kid, your autism.  In my life and my circumstances, I’m just not sure.  But because I’m not sure, and haven’t made a concrete decision on weather or not I can do the diet, or not do the diet, and do or not do bio-med – doesn’t make me a shitty parent. 

 My boys both have autism, and they are both completely different.  One is non-verbal, one is allergic to everything (practically), one has sensory issues, one has feeding issues, one has social deficits that are heartbreaking, one has tantrums, one has sleeping problems… and the issues go on and on.  But each one of them has their own autism, and their own issues, and each is treated and behaves completely differently, and I have to treat them as such. 

Because I still have questions and am not convinced that I caused autism by vaccinating him, or that my lifestyle choices caused it, or that a mitochondrial abnormality is the cause.  I just plain don’t know, and I am doing the best I can to help navigate these kids through this field of minutia that has been laid in front of us.

Jenny McCarthy recently spoke at an Autism One conference, and part of her speech went like this,

During her address, she found it necessary to state the following about moms who have children with autism but reject her own methods that supposedly helped her child "recover."

"They fall into this victim role and they like it. It's almost as if they didn't get attention in their lives ... and now this incredible door opens where all of these people come over and say, 'Suzy, oh, Suzy, I'm so sorry, is there anything I can do for you?' There's all this attention. And they're looooving it. They're loving having people feel sorry for them. They get extra, you know, home-cooked meals from their neighbors. Ya know, oh ... So to me, I can't stand that. Like when people do that I'm like shut the [expletive] up and get away from me. I don't want your sympathy. I'm over here. On this train. This warrior train."


So sorry Jenny to disappoint you, but let me tell you, ‘eff you and your warrior train.  There is no one that I allow to feel sorry for me.  Those that stuck it out with our family have helped us out and done what they could and what I asked for are in our lives for the long haul, and we for them, those that didn’t – well bummer for them it’s their loss.  They don’t get the amazing gift of having my AWESOME kids teach them unconditional love and acceptance.  Is this stupid blonde bitch aware of the animosity that she is creating among parents and families that are devastated??  Is she aware how hurtful she is?  Is she aware that some of these families have financially ruined themselves for her methods and have no recovery from autism? Is she aware that the “real” people she is forcing back into a bubble because her delivery is so violent to the emotionally vulernable?  Probably not, and its just another testimonial to how out of touch Hollywood is with real people.

Moms group’s are already a hard circle to navigate, because there is that whole women cattiness thing going on.  Some women have the maturity of a nine-year-old spoiled Beverly Hills kid on Ritalin.  So here is just a little tid bit of advice, to keep the peace and not cause new parents and families to crawl back into the prison of their homes for fear of being judged and attacked.  Just be nice, and share your experience, your strength and hope.  That is much more comforting and appealing that a militant psycho pontificating what someone should or shouldn’t do. (Especially if it isn’t about autism or special needs)  Parent’s groups are there to help each other, not judge.  I stayed away from a group of parents for more than a year because a crazy mom accosted me and told me all the things I had done wrong with my first son while I was holding my 8 week old infant in my hand, and if I did it her way my 2nd son wouldn’t get autism – well guess what crazy bitch? – HE GOT AUTISM.  Now what do you have to say?  But in the end this group has helped me get a better hold of autism and the treatment I seek out for my kids.  I could have gotten in the group earlier had the delivery of the message not pissed me off and scared the crap out of me 3 weeks into our diagnosis of autism. I was kicked out of and ASD moms group basically because one mom didn't like that I didn't like Barack Obama (no shit).   But it's all good, I got what I needed from that group and moved on to a healthier group of women, that is a better fit for me.

Parents and families in the special needs community need to come into a group and feel comfort.  They are in a fragile emotional state and don’t need a lot of extra bullshit on their shoulders.  We are all in the same war, the battle may be different from kid to kid but the war is the same. 

If you are a new parent or family with a dx, find yourself a group of strong parents, and take the information and knowledge from them that you need, and LEAVE all the rest of the nonsense, or stuff that doesn’t feel good or right in your gut.  Knowledge is power, take all the knowledge that you can, and leave all the other bullshit in the group.  Just take the stuff that helps YOUR FAMILY.   This is a long road to trudge, we need each other, like it or not.  Take what you need and leave the rest.  Don’t listen to celebrity or hype or snake oil salesmen, use your mommy gut and you will never be wrong. Because in the end this whole road that we are all trudging is for the kids.  Let's not lose sight of that.

Rebecca

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