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.

Going from Special Education to Main Stream

When Eric was going to school on Fort Knox, KY he was in partial Special Education and partial Main Stream. They were working in Preschool to get ready for Kindergarten. Things were doing great. I was only called to the school a couple of times and nothing serious was going on. When we moved to Joint Base Lewis McChord, WA he was placed in Special Education Preschool. It worked for what little he went. Then the school without my permission was sent to Main Stream without any support except for a few hours a week from Special Education. For a little while it worked very well. Then it just went down hill. Kindergarten proved he could do the work but he was above average thanks to his Preschool class teacher who taught him everything he knew. He knew his shapes, colors, how to write his alphabet and name, how to count, to add and subtract. He loved school but he had problems with too many stimulants in the class room. First grade has been in no other words HELL. Eric has been to three schools and have had four teachers. Main Stream failed him. I finally got through to the school district and they finally agreed with me that he needed to be in the special program. This blog is going to be about that program.
When I first heard of this program I really knew nothing about it. I knew that they took children like Eric and prepared them for the main streaming. They have a high success rate with their children being successful in mainstream. I had hope for the first time that Eric could be kept in public school and would not need to be homeschooled. I met with his teacher with Eric and fell in love with the program. They have a routine for every day written on a laminated piece of paper on their desk. They get a possible of 2 points per area. 1 point for participation and 1 point for behavior.
They have a total of 6 children and a teacher plus the para!! I started falling in love with this program the more I talked to his new teacher. They would still participate in music, art, physical education, library. I brought up the concern about lunch and they said they get two whole tables to themselves! So that means each child can get room to eat and not be crowded or in a crowded situation and that the teachers eat with the class. His breakfast is eaten in the classroom like the students in their classroom. So there was a major cut back in his triggers.
Then I asked about what would happen if he acted up. That is when they showed me two rooms adjoined to the classroom. The first room is the cool down room and it had pillows and he could take a nap or whatever he needed to do to calm down. The second room was inside the cool down room and it is SCARY to say the least. It is small and the door is locked and has an alarm on it. They called this room a lockdown room. It is where if the children get violent they can put the child in there and notify the parents immediately.
Eric did end up there one time and he has never ended up there again because he did not like it. The school immediately called me and I ran to the school as fast as I could. I even told the school that I was about 20 minutes away but it was rush hour. I got to the school and got Eric calmed down. When we were getting ready to leave the para told Eric see you tomorrow Buddy! I was shocked!! I thought for sure we were facing another suspension. When I asked the teacher about this she said in our program we do not suspend. Oh what wonderful words!
On Monday he goes through individual therapy and on Thursday they have group therapy. So he still got his therapy sessions. So I meet with his therapist and teacher for all conferences to hear how much progress he can make or has made or what areas he needs more help in. The one area I was concerned in was Eric was behind in reading. So I was thinking he can be behind or maybe a learning disability. So I talked to his teacher and she said he has made some progress but he is behind we need to read to him all the time and we need him to read as well. But he is making huge progress in his lessons and behavior.
Now in this program Eric will not be rushed into Main Stream it is a very slow progress. It can take a minimum of 2 years for him to compete this program. But once he is main streamed he will be successful and they can assure me that the behaviors he has had will be controlled.
Now the one thing that has brought alot of success is the fact that Eric's teachers follow the same programs we have at ABA so now we are one triangle and we all work together.Since the school has been working with us we can see huge progress both at home and at school. It has been wonderful and a gratifying experiences with this program.
As the mother of Eric there is days that are good and days that are bad. But everyday he brings home a certificate saying he has earned 19 or all 20 points. He is so proud of this little blue paper but I keep everyone! I hear what a wonder he is on the bus and how great he is. He tells me that he had a small problem but he turned it around. Just to see him go to school excited for the day and to see him excited to show me his certificate is a blessing beyond words. This program has been an answer to my prayers on what to do with Eric and school. I am so glad that he is going to this program.