Why We Let No One In

This past several months our family has been judged by outsiders. As a general rule we let no one know what goes on in our home to protect our family from people who love to judge and who loves to condemn because they know nothing about what it is like living with a child like Eric.
This past August Eric had a medicine reaction that caused a violent reaction. He was then hospitalized for several days. We had no idea if he was coming home or when. We did not know if he was going to be sent to Seattle Children's Hospital or if we could continue with in home care for him. The neighbors stood outside watching the show that was being put on. They even tried recording it. I finally had enough and asked the Military Police to break up the crowd and send everyone home. Our nightmare became even worse. I sent a Red Cross message to Casey in Idaho who was doing training. I had four social workers and an ER Dr. all tell Red Cross it is urgent to send Casey home. Casey's chain of command said because we have been dealing with this for so long he did not need to come home. He stayed in Idaho for three more weeks. In the mean time we had CPS in our home and found there was no safety concerns. We had Catholic Community Services start their services. We could not get TriCare which is the military insurance to pay for the hospital or ambulance. We could not get them to pay for Catholic Community Services so Catholic Community Services went straight to medicaid and got us their services.
The neighbors all criticized Eric and told Eric he could no longer play with their children. Eric still has no idea why he can't play and what he did wrong. Eric doesn't realize that no one likes him because of his illness. Eric can't control his aggression, behaviors, or emotions especially in social environments. It is hard on Eric when parents turn him away because they don't want him around their children.
I finally called my cousin up who has two autistic daughters. She then proceeded to try to help me. We found a Children's Autism Center in Seattle. I asked for a referral from the base to take Eric there and they declined it saying there was an Autism Ranch in Reno, Nevada!! He could go there for three months or for life term!! Excuse me?? So once again I was fighting an uphill battle to keep Eric home. Thanks to Catholic Community Services we have a referral to the Children's Autism Center through medicaid.
During this time I listened to a song from Frozen. It is titled Let It Go. Here are the lyrics.

The snow glows white on the mountain tonight,
not a footprint to be seen.
A kingdom of isolation and it looks like I'm the queen.
The wind is howling like this swirling storm inside.
Couldn't keep it in, Heaven knows I tried.
Don't let them in, don't let them see.
Be the good girl you always have to be.
Conceal, don't feel, don't let them know.
Well, now they know!

Let it go, let it go!
Can't hold it back any more.
Let it go, let it go!
Turn away and slam the door.
I don't care what they're going to say.
Let the storm rage on.
The cold never bothered me anyway.

It's funny how some distance,
makes everything seem small.
And the fears that once controlled me, can't get to me at all
It's time to see what I can do,
to test the limits and break through.
No right, no wrong, no rules for me.
I'm free!

Let it go, let it go.
I am one with the wind and sky.
Let it go, let it go.
You'll never see me cry.
Here I'll stand, and here I'll stay.
Let the storm rage on.

My power flurries through the air into the ground.
My soul is spiraling in frozen fractals all around
And one thought crystallizes like an icy blast
I'm never going back; the past is in the past!

Let it go, let it go.
And I'll rise like the break of dawn.
Let it go, let it go
That perfect girl is gone
Here I stand, in the light of day.

Let the storm rage on!
The cold never bothered me anyway...

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Songwriters
ROBERT LOPEZ, KRISTEN ANDERSON-LOPEZ

 

I thought as I listened to this song how true this is for many Autistic families. They don't ask for help because they are judged. They don't where to go and what to do because they are being turned away because their children are dangerous. The school systems often treat this illness like a learning disability when there is so much more to it than this. No one fully understands what it is like to raise an Autistic child until you become a parent to one. We often find ourselves reaching out to the other parents with children on the spectrum so we don't get judged or being told we need to spank more. Once someone knows what we deal with we lose them as a friend ally and we get judged and rediculed. We stay home from parties even church so no one knows how bad it truly is.