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