LJ Goes of the Thinking Mom’s Revolution
posted an amazing status today. Some one
told her, "You know, what's hard LJ, is,
it's just so hard for the mainstream to understand where you are coming from.
Don't get me wrong. I think you are a good writer, I really do, lots of
powerful stuff you put out there. Really. It's good. But, I mean, it's too much.
From the vaccine court, to the food contamination you talk about...it's a lot
to take in. People want to help you I think, they just...well they just feel overwhelmed by, well--guess the word is
"darkness" of it all, you know? People just do not live like this.
Not saying they don't, that's not what I meant, I mean...I believe you...it's
just most people do not have this sort of desperation about them. Maybe
brainstorm on how you could simplify it. Maybe...really drill down and then let
me know how I can help you with that one issue. You know?"
As Ed and I sat eating lunch today, I was telling him about
this post and how I recently was told by another autism parent that I was “more
intense” then most. Ed commented on how
many realities I do not post, and how lucky all my Facebook friends are that
when we really went through “shit” literally and figuratively there was no
Facebook. There was no Facebook when our
lives were lived in shifts so that there was someone up with the boy who only
slept for 2 hours a night. That was the “intense” time when life was very “intense”;
unlike now when the intensity only shows up every other month. We then
continued on to how so many times when Austin was young we did not know we
might be some version of “normal”. Somehow via the internet, yahoo groups, and
then Facebook we were clued into the knowledge that we were NOT ALONE. We may not be normal but we are definitely not
ALONE. The difference is most people in
our position do not speak of it. I guess I could take away from hearing the
fact that I am more intense them most, that maybe I post too much about the bad
and not about the good. Let me just put
it this way: there is a song by Meatloaf that Ed listens to quite often that
states “it was long ago and it was far away and it was so much better than it
is today!”. Well that is not our life today. As intense as it may seem today, “it
is so much better than it was yesterday”!!!!
All I know is
that when I write about autism, I do it from the perspective of a new mom or
dad who thinks that their kid is the only one like this and that their reality
is much like the land that Alice found herself in when she went through the
looking glass. I want there to be a voice that shouts: you’re not alone; you’re
not without hope and that things can and will get better!! I am also superstitious
and every time I post Austin sleeps he’s up in the middle of the night. Know if I do not mention him not sleeping, he
probably did. Today was a great example.
As soon as I said at 3 am he was asleep, and I was going to my bed, he
was awake at 5 am.
This also leads us to the subject of missing kids and how things go wrong quickly. Another Facebook friend posted how they did not understand how kids with autism get out. I think most people know that our family is hypersensitive about the chance that Austin will run off. But, like most of our kids, Austin can be gone in the blink of an eye. Both Ed and I, and the 3 older kids, have had our “track meets” running after a very cute, but very swift little blonde boy. We have both had to become much faster than anyone might believe by looking at us. No matter how much attention that we pay to this possibility, just last Monday, some how the front door was not alarmed, and Austin went out the front door, he's new mo is to go to the car so I headed their first, when I realized he was not there, I shouted to Emily to secure the house and to tell her dad to run to Lake Blvd, A VERY BUSY STREET, as I ran to the complex park. Fortunately he had ran to the park. Literally all of this took place faster than you could hear the door shut. These moments are becoming less and less, but every time Austin has an infraction, meaning he has eaten something he can’t tolerate the chances go up, significantly that this will happen.
So let us all understand that the parents of children who
elope are not necessarily neglectful, our children are very attentive and will
take advantage of any opportunity. Let us just be grateful that it didn’t
happen to us today and say an earnest prayer for the parents of the children
who have left the safety of their home, especially Michael Kingbury’s family
who was found dead while we wrote this: May God keep our kids safe and may his
Spirit be able to comfort the parents of
Terry Smith, who are at this moment the terrified parents of a child with
autism who has gotten out!!!!!!
This blog was a team effort of both Ed and Shannon Primer and
with a lot of tears shed because it hits way to close to home.
The NAA and TACA have also teamed up to help with wandering
and given great advice on how to help your local first responders. Please read this as it gives a small amount
of the NAA’s information on the subject.
http://pitaup.blogspot.com/2013/06/autism-and-wandering.html
