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Want You to Know # 1: The Birth of CaliforniaSibs

January 19, 2018

 

 

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Want You to Know #1: I started a non-profit because of This Crime. I am action-oriented. I want to solve problems. It is the ENFP in me, the "Campaigner".

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In April of 2012, my family's world was rocked. We learned of my sister Natalie's diagnosis, which makes sense now looking back. I have met less than one handful of Adult Siblings "Sibs" whose lives have been rocked by their sibling's sexual assault, despite the alarming statistic that people with intellectual disability are 7x higher at risk for sexual assault and nearly 80% of people with disabilities are abused.

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It was late March 2012 and I remember quite vividly, while commuting to work, my mother on the phone with me and Natalie moaning in the background. Moaning is her form of communication for whatever she needs in life; to eat, to sleep or a diaper change.  But this was more than usual. 

 

My mother had said, "Natalie isn't letting me sleep again. It has been weeks and she wakes up every night moaning and sitting up." I could tell she was in despair.

 

I have had yet to have a child, as this was the year I would be getting married just 7 months later, and my brother just 3 months later. I didn't know yet what that early morning, "Baby keeps me awake" feeling was like yet.  I do know that my mother had kept Natalie home intermittently, for several months, from her Outside Caregiving Facility to nurse her back to heath from various common ailments. Natalie has a fragile immune system and can get pneumonia very easily, she does not even know how to blow her nose. 

 

The Friday of that week, I decided to check in on my mother and Natalie. Natalie loves her evening bath time; it is her escape to sit in a warm tub with music on for 30-60 minutes and just relax. It is also the time my mother, her sole caregiver in the home, takes time to take a deep breath from the day and unwind with some mindless chore. I went into the bathroom, looked into Natalie's loving eyes, then I looked at her private area noticing it was severely swollen and red. I said, "Mom, you need to take Natalie as soon as possible! This does not look good." 

 

That night my mother brought Natalie to the reputable Urgent Care Center affiliated with the local hospital. I was not there. This was not a time when I was needed, or so I thought, "Mom has this one covered." She always does. I swear the woman wears a cape. Plus, I was not yet Natalie's legal guardian or co-conservator; a term I have now learned the value of. 

 

That last weekend of March, I let my mom have some reprieve, and Natalie's female respite caregiver at the time and I decided to manage her care from Saturday to Monday, just two nights. 

 

Over the weekend Natalie had a seizure in front of me while we were feeding her. She would get them quite a bit when I was little but I hadn't witnessed one in over a decade or so thanks to Depakote Sprinkle.  When I was little, pre-Depakote, I remember seeing Natalie having convulsions. One side would go stiff, and she would lay on her side helpless for several minutes as the convulsions took over her body; her eyes would stare into space and she would drool excessively. We looked out for choking hazards. 

 

Not many siblings get this experience at a young age. This was scary. Something was up. 

 

Natalie's female respite caregiver and I decided to take to her to the Emergency Room at the local Hospital, as this was not typical behavior. Nor were her sleepless nights and her continual moaning. Something bigger was going on, but we did not know what it was. Certainly the trained medical professionals could help us. 

 

~In case you are wondering at this point where her father is, well he is out of the picture living his own life free from day to day care of my sister and offering emotional support for my mother. I am the one, along with my siblings and close maternal family members, supporting my mother.~ 

 

 

 

While lying on the gurney in the Emergency Room; photo above, the doctor and his team tried to get a urine sample to confirm a minor vaginal infection. It was useless. I remember thinking, "These people have no idea how to manage a Special Needs person". They would talk to her like she could follow instructions and I kept having to explain that she is like a 10-month old baby and does not understand. The level of empathy and understanding was not there. I was beyond frustrated. The doctor even said it was a "...comedy of errors....". I was beyond appalled at a comment like that coming from a medical professional, a Community I look up to. It was as if trying to figure out what happened to my sister was a burden and she was joke. We left with another prescription for a yeast infection. 

 

I felt so alone. I can only imagine how my mother felt. We couldn't help our loved one. We need a sign. She has no voice.

 

It was Monday now. I was commuting home from work when the Urgent Care office called me to tell me that Natalie was diagnosed with Gonorrhea and that I needed to bring her in immediately for treatment.

 

SHOCK. Thank God for the STD diagnosis. Now we know. 

 

We all know how the rest of this story goes now. My sister's story is featured in an NPR series on the sexual assault epidemic of those with intellectual disabilities. 

 

I have never felt more alone in my life. I am an extroverted person. I need a Community. Are there other Siblings out there who have had a sibling sexually assaulted? If so, where are they? How did they manage supporting their mother/father, sibling etc.? How do you deal with all this? My sister didn't ask for this. All she did was go to an Outside Caregiving Facility. That place, like a school, is our safe haven. Or so we thought. 

 

I Googled for "Sibling, Special Needs, Adult" and came up with one result for a non-profit in Europe. That was too far. I tried again with "United States" and had a result for The Sibling Leadership Network. BAM. I found it. But there was no Chapter in California, so I started one. 

 

It has been 5 years since I pursued Adult Sib support.

 

I have only met one other Sib whose sister was sexually assaulted. With the stats of "7x more likely" and nearly "80% of people with special needs are abused", I thought I would have met more by now.

 

Where are my Adult Sibs? I am here to hold your hand and be your shoulder to lean on. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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