What I’ve been asked to write.

I’ve been asked to write our story to present to the public.  That terrifies me.  You’ll read why.

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I woke up covered in feces.

 

It was not mine.

 

Beside me sat my 10 year old son, naked, also covered in feces.  

 

On the white wall next to my bed were several separate artworks, all created in feces.

 

My sheets, blankets and pajamas were soaked in feces as was my hair and face.  

 

It’s 4:30 AM and the only other person in the house is my 17 year old, the full time student/full time actor who is essentially working from 6 AM to 10 PM most days.  They need their sleep.

 

Cleaning up the room and bed wasn’t the hard part.  I’m still not able to process the emotions from it.  

 

Take 10 seconds right now to think about what you would do in that situation.  What are you feeling?  

 

This is daily life for me CJ and me.    If it’s not Feces, it’s spit, vomit, food, liquid, paint, marker.  Whatever is handy.  We’ve stopped eating anything dark brown in our house.  You never can be too sure.

 

CJ is a 10 year old incontinent nonverbal boy with autism.  Until he was 9 years old, the only services and help I had was what Tacoma Public School offered.   He behaved like a feral 2 year old, showing no interest in anything or anyone.  The only words out of his mouth were repeated songs and lines from TV shows.  He still requires 24 hour supervision because he has no sense of personal safety.  He runs away at any opportunity – into traffic – out a 3rd story window – into other people’s houses.  If left alone, he finds ways to open windows and doors. He becomes quickly overloaded by normal sounds and other people.  Because of his incontinence, he is not able to participate in any camps or activities geared for Autistic children.  Because his need for 24 hour care, I cannot work outside the home.  We are blessed that we have the survivor benefits from my late husband’s social security.  That pays for rent on a cheap house in a bad neighborhood and utilities and food.  Unfortunately, the amount we get puts us just out of the limit for any other assistance – no “Welfare” or “food stamps” or “TANF” or whatever they’re calling it these days, no HUD or housing, no child support, no family or church or group.  We will have to switch to actual “Social Security Disability” before he is 18 – at that time our income will drop from “just above food stamp threshold by 30 dollars”  to around $700 a month – with which I will have to provide for our basic living needs and STILL provide full time care to him.  Consider that our rent alone is $800 a month.    Consider that we have no family to take us in or help with care.  Consider that I still will not be able to hold a job with a living wage.   We go to food banks, but CJ’s sensory issues mean he has a very specific diet and food banks don’t carry much that he will eat.  Beans, rice, and day old salads don’t help us much.

 

Take 10 seconds right now to think about all the places you could go if you were hungry or needed a place to sleep.  

 

Before the Affordable Healthcare Act, I tried to work to get Health Insurance, as we receive just a few dollars over the threshold to qualify for medicaid.  During that time, my son was barred or banned from most daycares in the city because he required one on one supervision, and they were not equipped to provide that.  He eloped from every daycare that would take him.  Finally, I did find one daycare center who would take him, and they tried very hard to keep him safe, but he even eloped from there a few times.  Eventually, I was paying as much in daycare as I was in rent for 12.5 hours a week of care.  The paycheck I was earning was all going to healthcare and taxes.  I was also working full time, then staying up all night with CJ so he wouldn’t elope.   He now wears a GPS tracker whenever he leaves the house.  It’s not to keep him from running, just makes it easier to find him.  I pay for it out of pocket.  

 

Take 10 seconds right now to think about all the safe places you can leave your child for an hour or two and not have to worry.  Think about the last time you could relax for 5 minutes and just turn off your brain.  

 

In mid 2012, I went to the doctor for a required check up.  I didn’t have the sick leave to be sick.   Of course I looked tired.  I sleep no more than 2 hours at a time for the last 8 years, and I get no sick days or vacations.  My iron level was very, very low so he asked about my monthly cycles.  I explained that my cycles lasted 6 months at a time, with maybe a week or two break.  After a few more tests, I was diagnosed with Ovarian Cancer.  I had to spend one night in the hospital after the complete hysterectomy, but I was home the next day, caring for my children by myself.  No one helping me with meals or housework.  No one helping with the kids.  

 

Take 10 seconds right now to think about who would take care of your kids and you if you were ill or injured.  

 

We’ve made phenomenal progress in the short time we’ve been clients at the Children’s Therapy Unit in Puyallup.  We have greater mobility due to a stroller/wheelchair and greater peace of mind for me when we go places.  CJ and I can both relax and enjoy outings.   He even asks to take it along sometimes.  He’s also learned to be calmer and we even have started doing the weekly shopping together sometimes.  He’s less eager to elope and more willing to trust that he can get his needs met by just asking.  He’s more verbal, and with small prompts can state his needs in full sentences and appropriate language.  

 

Our Autism is unlike any other autism you know.  You all see the cute YouTube videos and news stories about the Autistic child who sang the National Anthem, made the winning goal, skipped a grade in school.  We watched Rainman.  CJ will never do any of those things.  What is even more sad is CJ and I aren’t some rare  severe case. THERE ARE MANY CHILDREN LIKE CJ RIGHT HERE IN MY TOWN.   We make people uncomfortable, because we aren’t a neat tidy package.  So we slip through the cracks.  There isn’t support for us because no one knows what to do.  Personally, I think too much is wasted on studies of how to cure or prevent it, and arguing about causes, and not nearly enough on how to support the more than 1 in 65 children with Autism today.   Currently, the only perk to getting a “diagnosis” is the cute T-shirts.  

 

I’d like to think my son will grow up to have a job, meet a life partner, vote, raise children, pay taxes, and even be President if he wanted to.  But then I have mornings like the other day, and I have to be realistic and accept that this may be the best he ever is.  Wouldn’t it be nice if someone could hear our story, and maybe start trying to find some help for us and the other families like us.   Of course we’re on the waiting lists!  But Psychotherapy for his anxiety and depression can’t happen until he can have some sort of conversation, which requires speech therapy, which cannot happen until he can sit still and focus for 5 minutes at a time which is impossible with his anxiety.  The waiting list for the “top therapy for autism” in my area is 5 years for an initial intake appointment.  Our OT and I and the school are working as hard as we can.  But it’s taken me 10 years to get this far by myself.  Wouldn’t it be nice if we put as much effort into our kind of autism as we do in some other health conditions.   Maybe people just don’t think autism is that serious.  And it’s no wonder why.  

 

But it’s a two edged sword.  By opening up and exposing our Autism, we inadvertently invite the entire world into our lives and unless they’ve  lived this, some cannot wrap their minds around how we live.  People see things they don’t agree with, and decide to make judgements of us.  We, like so many other autism families, have thick folders in CPS offices stuffed full of reports of parental neglect because the child eloped, parental neglect because the child doesn’t eat a “normal diet”, parental neglect because the child isn’t potty trained, parental neglect because the neighbor complained about the melt downs and the screaming.   So we stay indoors and keep quiet and manage as best we can.  Because we’re expected to.  Someone filed a false report that my son had eloped and run 5 blocks down a busy street in a diaper.  CPS called me in and threatened to charge me with felony abuse and felony neglect.  They told me they didn’t need to investigate because they believed the complainant.  After a year of silence from them, waiting and watching over my shoulder, I got a form letter without a signature in the mail informing me that the charges were unfounded and they were closing the case.  Another elopement had a police officer telling me he was filing neglect charges with CPS in his report.  After a 2 hour conversation with him on the phone explaining Autism, he agreed to not file the report for 2 weeks.  As long as there wasn’t another 911 call in the next two weeks for elopement, he wouldn’t charge me with neglect.  
So it’s me and CJ against the world.  But he’s already 10 and I’m 50.  I have fibromyalgia, arthritis, PTSD, Anxiety, depression and constant chronic exhaustion.  He’s starting to enter puberty and getting stronger and more violent.  He is already stronger than I am.   How much longer am I going to be able to do this alone? What happens when the Survivor benefits run out?  How on earth are we going to live on 700 a month?  How do I have any kind of life when every minute is filled taking care of him?  I can’t give up on him.  I’m all he’s got.  

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Pearl Manhattan

Life interrupted - this space is changing - stay tuned

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