Wednesday, April 30, 2014

Concerned Face

We're on the roller-coaster again.

I do a slow circle around the old school, where Joey went to preschool, where the social worker is. We haven't done a social history since he was two. The young lady I'm going to talk to is new, she doesn't know us. Turns out, she's not familiar with the people who work in the different schools or anything.

A slow circle. I spiral in on a parking spot, like a shark. It isn't where I wanted to park, but there's nothing else available. I wonder why all these cars are here. I never find out.

I climb up to the building, through an entrance I have only used once before. Joey used the entrance on the other side of the building. I always parked in that little side lot when we were here for school, or meetings. The building seems strange, since this isn't the entrance I'm used to- twisted around weirdly. I find my way to the main office to sign in. I don't know the secretary there. More weirdness.

The new lady comes down, takes me upstairs as if I don't know exactly where I am going, only I could walk this path blindfolded. There are 27 steps to the second floor. I count them off as we climb, in my head. They haven't added any in 10 years. It's the exact same room. I was here, ten years ago. The story was shorter then.

I rattle it off. I start on August 31, 2004. I make it to this year. I think she's figured out I'm not happy. She asks more questions, filling out her little form. Who lives in the house with us? How old is Joey's brother? How is Andy doing in school? How is Joey doing in school? Do we have health insurance? What is Joey like, his personality? Does he have behavior issues? Does he get aggressive? What do we do at home to discipline him (her words)? What services does he get? What contact does he have with the community?

She puts on her Concerned Face when I talk about him being suspended, when I tell her about the possibility at Kennedy Krieger, when I note the differences between second grade and now. I don't know this woman, I don't know if Concerned Face is going to mean anything yet. From experience with others, I'm betting it means nothing at all. She's trained to look concerned. It's an Active Listening skill. It's her job.

And I never forget, it's the school that signs this woman's paycheck. You can never forget that when talking to people- who pays them. Whose side they are on. It's like a Mission Impossible, with espionage and counter-espionage. What information do you offer? How will it be used? How could it be used against you? People trained to take every word you say and judge you with it. And perhaps I am suspicious because I know that usually, when Joey goes into meltdown, it's my fault. When I don't pick up the signs, when I miss the cues, when I make the wrong choice of intervention or lack thereof, the wrong moment or the wrong words or the wrong tone. But you don't want to say that to a person who could pick up the phone and have your child removed from you, just like that.

Paranoid. I've become paranoid, suspicious of everyone connected with the school, because every time I ask for them to help him, we get nothing. Or worse. They have had him since he was two, for the love of Pete. If you can't figure out how to do a job in eight years, why should I trust you to learn to do it in the next eight days?

Our meeting is in eight days. They came to the Triennial with no new evals, and the excuse that they only eval every six years. I told her that. I got more Concerned Face. But I would have none of that, especially since the evals from three years ago I thought were a load of crap three years ago. So we are doing all these evals. This is one of them.

Eight days, and I will know if these people are competent. It will be my turn to judge them. After all, no one knows Joey better than I do. I will know if they can evaluate him and come up with an accurate picture. I will know.

Sunday, April 27, 2014

Walking: Autism Society Acceptance Walk

All of us at Joey's Stage Door Stars art show last year.
Today is the day! 

There had been hullabaloo about where to put your money to show support for autistic people and families, where the money goes to help people with autism. What can we do to increase support services, access to therapies, get people help they need. Well, here it is.

The Autism Society's Intervention Assistance Fund provides mini-grants directly to families, so they can access the supports and therapies they need to help autistic people grow and become the independent, happy people they can be. This isn't just for kids, either: these people provide adult services, and make adult services available and affordable.

In case you miss it from their website:

Intervention Assistance Fund Mini-grants

ASNV’s Intervention Assistance Fund awards quarterly mini-grants to eligible adults with autism and families of those on the spectrum to help defray costs of therapies, medical procedures, training and other treatments. Click here to find eligibility requirements and application instructions.  ASNV has a designated subcommittee that evaluates the applications and administers the program.  You can donate directly to the Intervention Assistance Fund and 100% of your donation goes to support local families.
Your donation goes to the fund, which then goes to the families and autistic adults who need support and services.They help cover families who otherwise can't get traditional services such as OT and speech therapies, but also help with "uncovered" services such as adult support, equine therapy, art therapy, safety equipment, behavioral therapies, assistive technology, summer camps, respite care, psychological evaluations, and even training workshops. THESE PEOPLE HELP.

The Fredricksburg Walk raised $22,000 for the fund last year. Our team goal is a modest $500, but we know every dollar is a huge help to access therapies, training, and supports that directly help people with autism, and that would otherwise be beyond the reach of adults and families.

Our Team Site has a donation button. When you donate, you can become a "virtual walker" and member of Team Joey! If you prefer a straight donation, just put in your amount, and then scroll to the bottom for the checkout button.

Thank you for your support as we all walk today to make a better world for families in Northern Virginia!