Sunny came home with a list of names.

I recently blew a job interview in a spectacular fashion. I didn’t sell myself. I gave generic answers. I gave bad answers that I could have turned around to explain what I was getting at –but didn’t. Just let it hang. I forgot to answer one part of one question they asked me (What are your strengths and weaknesses? Me: insert generic strengths, completely forget to answer weakness part). SMH. Spectacular.

The next day I was driving two hours from home to Pittsburgh to take my son with autism his Christmas gifts. He moved into a residential setting 8 months ago. Wait –back up, right? I haven’t updated this blog in so long most of you don’t know. That is a story for another day. He’s doing well, but not in HIS ideal location. More on that later.

I do my best thinking while outside of the house and driving. I had two hours to think about the rejection on the job offer and that’s when I thought about my answers. Cringe. By the time I got to Pittsburgh I had written a follow up letter, in my head, that was so wonderful, of course they’d reconsider me. (I might be a little full of myself, but it was a great letter!) The job in question was for Support Coordinator, working for individuals just like my son.

Then I walked into his house. And I remembered all the issues that I had with PA’s ODP in the 5 years we were trying to survive on their services. All the issues that are still affecting my son. The problems. The bad Support Coordinators we dealt with in the past (not all, we had one good one). The county holding the purse strings to my son’s waiver so tight that they denied him things that should have been paid for. The flat-out wrong information I was given. The questions I asked repeatedly that I never got answers too. The complete lack of understanding when it comes to those with severe autism and their unique needs.

I posted this on my FB page the night before my interview:

“In over preparing for my job interview I already started going thru the SC orientation on the MyODP website.
They make you watch this documentary about Penhurst and the movement to close the institutions. AND I GET IT. I DO.
But now I’m watching this webinar on their “Charting the Life Course” program and just… smh… so full of thoughts.
When I was handed that colorful packet of papers to plan out my kid’s life, I saw it as more overwhelming bullshit and I tossed it.
Their focus is SO ON Intellectual Disability that they are excluding the overwhelmed families who have violent children. I was too far gone to “chart my son’s life course”. I’m just trying to get through today.
This is WHY Gavin lives in a busy city –against his will. They are so focused on “Everyday living” “Person Centered” “Dream Big” “Consumer Choice” —but they are ignoring my son’s will and dreams because once upon a time people who wanted to live in the community weren’t allowed.
There are ways for individuals like Gavin to live full lives in a rural setting. And they won’t even hear it.”

The parents running ODP today are the old timers who saw the abuse of the institutions –but their information on severe and profound autism is just bad information. If they are getting input from individuals with autism, they are listening to the self-advocates who have nothing in common with my child. Nothing.

Gavin told me that he wants to live where he can just take off his headphones and play outside. He hides inside. He will go out for trips to the store and rides but he wears his headphones. He has to wear them in his own home too. What’s he listen too? LOUD fans. When I say loud fans, I mean, I put his headphones on once at the volume he listens to it at, and I screamed as loud as I could and I COULD NOT HEAR MY OWN VOICE. He’s destroying his hearing to block out the unwanted sounds of the city.

He did ask, repeatedly, for a house in the middle of nowhere, with no neighbors and no roads. Sirens set him off. Vacuums set him off. Smoke detectors and fire drills set him off (requirements for his home). The state of Pennsylvania says that he cannot have that. It’s too isolating. What happened to Person Centered? What happened to choice? What happened to letting the individual choose the life they want?

ID is NOT the same as Autism. Some Autism comes with a side of severe aggression due to sensory issues. Most Autism comes with sensory issues. Why is my son being forced into a living situation that is not what he wants? Don’t get me wrong, his staff is great. It’s the only reason I felt comfortable in this tough situation. But it’s not where he wants to be.
And he’s not the only one. I’ve read stories of kids being tossed out of their rural farm-type school settings in PA at age 21 because they are not kids anymore! Grown ups! Go live in the community! They were thriving, and now they are kicked out because once upon a time people who wanted to live in the community weren’t allowed to. Once upon a time was 50 years ago and the times and individuals are a changin’.

There is also no plan or place for these individuals when they are a risk of harm to themselves or others. Behavioral Health for them is non existent. Drug him? The medications that calm most people make him more violent. NO ONE is trying to help. In the beginning I had a Behavioral Specialist on his team. She was useless. Kept coming to the house asking me what I wanted to do with no answers or solutions. The meetings just got more and more absurd. Each time, asking me what I wanted to do next. Um. Waiting on you, overpaid, waste of oxygen. If I knew what to do, we wouldn’t be in this mess.

I finally took him to the ER after a violent episode. “I can’t do this anymore. We need to trial medications, but I can’t do that at home because most make him more violent, this needs to be done inpatient.”
The final answer? There are no beds anywhere in Western PA for him. You could stay here in the ER until one opens up in Pittsburgh, but that could be days, weeks because they pull from their own ER first.
Me: “So you’re telling me if I really want to get him in, I need to take him to their ER, two hours away?”
“Yes.”

They told me they’ve had to send away individuals threatening suicide. Threatening to kill family members. This is the state of services we’re facing.

I took him home.

It would take 7 months to find a home for him (we “lucked out” and got a consolidated waiver soon after I pulled the “I can’t do this anymore” pin, because another waiver recipient died. That is how you get the good waivers here, someone else has to die). It would have taken forever had I decided to wait for a house in the middle of nowhere, with no neighbors and roads, like he wants.

This is an unacceptable shit show. It needs to be fixed. Period. That’s the job I want. Fixing this mess. Not SC, my hands would be tied by the stupid regulations.

For the two hour drive home that is where my thinking went.
The ones among us who are still ignored because the people in the position of power and authority are damn clueless.

I messaged my Gov, Lt. Gov, State Rep, State Sen, and Federal Senators and Reps after that night in the ER. I got generic replies from two of the Federal peeps and dead silence from everyone else. That’s how much they do not give a fuck about my child and those like him.

I have A LOT to say on this topic so you will be seeing me around more regularly. Buckle up.

In the old tradition of ending with a song 😉

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