The Status Woe

Rising above mediocrity one mishap at a time

Dancing on the edge

on February 5, 2013

I didn’t intend for this blog to be all about autism.  But like everything else in our life, it just dominates.

Our daughter is in a treatment facility for 29 days.  Let me mention that the facility is UBER expensive at $765.00 a day.  So many friends have offered to fundraise for us.  How to explain that if everyone I knew gave $100 it wouldn’t be enough….?  I’m grateful for the 29 days.   But she will be released in a week-ish.  She has started her behavior plan.  And as expected, she is becoming more aggressive (always gets worse before it gets better).  Just in time to come home.

This is what happened to me the last time she was aggressive:

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Black eye in the EXACT same place as the previous black eye.

And a week before that

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Level 2 trauma. Closed head injury.

Here is my youtube video of a typical day:

Some background for the video: She had just hit me and pulled my hair.  She had thrown diet coke and water all over the kitchen.  I was in the process of trying to get it cleaned up and to stop crying when…..

I have talked to doctors, psychologists, lawyers, insurance companies and no one is helping us.

Let me give you a little background:

We started an ABA program with her when she was two (that’s INTENSIVE behavioral intervention).  We stopped when she was five since she was in typical school full time (yay Issy!!).  For those of you who know the lingo we did ABA, two years of GFCF (not a diet responder), DSMA, all the supplements from the Kirkman catalog.  We’ve also done auditory integration, RDI, Sensory Therapy, OT, ST, and an exorcism (the last one is a joke).

She had problem behaviors (hitting), directed mainly to me but sometimes her little sister too.  Our local CMH (community mental health) provided a behaviorist.  She worked on our case for over two years without supervision.  I did everything she said and Issy’s behavior got worse.  I begged her to consult someone.  She finally suggested I put Issy in foster care.  No, we’re not going to do that because she is OURS AND WE LOVE HER!!!

Sooooo, now I’m calling around the state looking for a behaviorist who will take our case.  She is now 10ish.  She had a huge meltdown in the car.  I pulled over and called my husband to come and help me.  I was on the highway and I didn’t want to get out of the car because I was afraid Issy would get into traffic.  My husband found me crying and I lost consciousness.  I was transferred from our local hospital to a neighboring town because my pupils were not reacting to light.

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We hired a worker to help with Issy.  She was great until she told us she was pregnant, said Issy hit her, and said Issy caused a miscarriage.  Then we sent Issy to a state mental hospital for a week thinking she killed a baby.  Only to learn that the woman had made up the pregnancy and miscarriage to get attention from her boyfriend who was living out of state.  I testified in a deposition.  We are all scarred for life.  FOR LIFE!!

Still, we continued looking for behaviorists.  Found one in Grand Rapids.  She agreed to take our case.  But she got sick and quit or was fired.

So that brings you up to current time.  You can read my past posts about how she got into residential care.

I also want to add these tidbits because I’m actually feeling a little sorry for myself.  I think I’ll just put them into bullet points

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I Googled “Refrigerator Mother” and Google did not disappoint….

  • I was accused of working too intensely with Issy when she was two by her speech therapist
  • A family member told me I didn’t read to her enough as a baby.
  • I was told by a social worker that my intensity “exacerbated her aggression” and she recommended parenting classes (she had never seen Issy and had never been to our house to see me parent)
  • I’ve been begging and searching for help for YEARS!  No one (not insurance companies, doctors, or social works) suggest anything.   NOT EVER.

And a little bit about us personally.  My husband has a good job and has great benefits.  But through loopholes and other nonsense, we can’t get help for our daughter through insurance.

We are the type of people to pay their bills. (but our credit is shot to hell because of the money it cost for early intervention, playing the credit card shuffle and re-finance game.). Our car broke down tonight.  We won’t qualify for a loan. *sigh*

I would also like to mention that we LOVE our disabled daughter very much.  But you should know that living with her is beyond horrific.  There are screaming tantrums, property destruction, hitting, biting, pulling hair, and kicking.  It’s always loud and we’re always tensed up to take a blow.

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But what about HER!?!  Our daughter deserves a chance to have a happy life!  She is completely trapped in her aggression.  She is so special and has gifts to offer the world.  But we will never be able to reach her full potential as long as she is trapped in this aggression.

I know you may not believe me, but she was the most popular kid in her school.  Everyone wanted to be her friend.  Her classmates were both friends and helpers.  We’ve had a ton of students babysit her over the years or work as therapists and they LOVE her.  And she LOVES them!!

The last straw =Friday February 1st 2013.

I was contacted by the insurance company that provides my husband’s benefits.  They wanted to look at our case.  The woman I spoke with is an advocate.  Beyond AMAZING.  She took our case straight to her superiors (time is of the essence, our little girl is scheduled to come home soon!!).  They would have the ability , the money, and the power to APPROVE HER TREATMENT.  I knew she was going into a meeting with decision-makers at 2:30.

She was going to ask for full treatment for Issy to be covered (around 3-4 months TOTAL) as a money saving opportunity because my next head injury could be far more expensive than her residential treatment.

Makes perfect sense to me!

She called me after the meeting.  She said, “Issy wasn’t denied outright.  They want more information.  You will be contacted by someone………”

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I fell apart.

I crossed the line.

It’s the last straw.

Desperate times call for desperate measures.

I’m tired of her autism robbing her of a life.  I’m tired of it taking all of our resources (time, money, energy, everything).  I’m tired of dying slowly with each traumatic brain injury.  But mainly, I’m so DAMN MAD at watching my husband, a good man, work hard and never get ahead.  He can’t keep his family safe, and he can’t fix his broken daughter.  He deserves to come home and hug his family, pay the bills, kick the dog (that’s a joke) and do what good men do.

Our other children deserve all the time they haven’t been able to get from their parents.  All of the attention they deserve.  All the help with their homework they can use.  They are AMAZING.  They deserve to have a childhood.

That poor woman who called.  She had no idea when she called me to give me the “not so good” news that I was dancing so close to the edge.

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What do you do when you’ve done all you can do?  When every decision is out of your hands?

I understand why prisoners go on hunger strikes.

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I understand why Tibetan monks resort to self immolation

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So please:

Share with any television reporters you know

Share with any newspapers

Share with any lawyers

Share with any legislatures

Share with your favorite celebrity

Please PLEASE share this with ANAOMOUS if you know how to find this group

Thank you for reading,

You can find me on Facebook here—> http://www.facebook.com/pages/Kelli-Stapleton-The-Status-Woe/441514065886958?ref=hl

Team Issy has a Facebook page if you want to keep up with the developments. You can find it here—> http://www.facebook.com/TeamIssy?ref=hl

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