Monday, January 16, 2012

A Chord Once Struck

I remember That Meeting.

We were in a preschool classroom, and the topic was ESY. We had covered for the school the year before by placing Joey basically in daycare, and we knew it didn't really work very well. We came with the idea that we would be discussing Joey's issues of the year and how they might be addressed, and the need for him to have year-round service. We knew every educational study done supported autistic students having year-round services. We knew the government offices published guidelines that recommended year-round service for autistic kids. We knew the doctor, the speech therapist, and the OT were recommending summer services. He needed structure. He needed focus. He needed school.

It wasn't an easy thing for us to give him up, but we knew that everything was pointing to this being good for him, so we would lose a lot less time in the fall. Time was, after all, the enemy. We had none to waste if we wanted the best possible outcome in the long run. We came in to the meeting, sat in the half-sized chairs around the low table, and the meeting began.

And the school OT pulled out a color print-out of the state guidelines for ESY, and started noting how Joey met none of the criteria, mostly because he wasn't showing regression.

We were absolutely blindsided. Do you know what color copies cost? Here was a professional, going against everything we had, everything that we had ever heard of... and though regression was not the "only criteria", it seemed to be the elephant on the page.

Hindsight makes that meeting even worse, because I know now that Joey did, in fact, meet the criteria on that page. We were just too ignorant at the time, and not quick enough, to be able to throw it back in her face.

We have all had That Meeting. The one where the people who are supposed to be helping you actively sabotage you, and for no good reason you can see. Malice? I still wonder if there wasn't malice in our meeting, for that OT had already proved to be incompetent, I had already parked my butt in her boss' office to note it. I still remember going to a private OT and discussing things the school OT had said and done (and not done), and the utter shock as the private OT said, "if what you are telling me is true, that is a major breach of ethics! Your OT could lose [thei]r license!" and knowing that reporting the OT was going to do no good. We had already tried that route.

But sometimes it isn't malice- or at least, not conscious malice. Often, it is ignorance that fuels That Meeting. We expect professionals working with our kids to be... well, professional. The ignorance can be a shock. It bowls you over and stomps you into the dust. Did that person just say that? Really? They know better! And they are in a position that leaves us caught in a game of politics, or policy, or whatever, leaving us powerless to get around this person. We find ourselves at a roadblock, often unexpected, and have to think quick to come up with alternative paths. When someone actively sabotages you and your child, it can be an exercise in futility, frustration, and ultimately, creative problem-solving. How do I get around this person to make sure my child gets their needs met?

For us, the answer was lots of OT camps and speech therapy camps that we had to pay for ourselves. There wasn't time to go o Due Process- summer was upon us, and Due Process can take years. It also takes money. We now needed that money to pay for therapies. OT camp isn't like Summer Camp. It costs a lot more. But we- and Joey- were fortunate. We could take that option, even though it wasn't really enough.

The next year, the regression from summer couldn't be ignored. The stress couldn't be ignored. The slamming doors could not be ignored. We got ESY.

But we all know That Meeting. I don't think I have met a special needs family who hasn't had That Meeting. Unfortunately, most of the families I know have had several. We've been pretty lucky in avoiding That Meeting, but we have seen ignorance from plenty of people who should know better- whose JOB is to know better. What is scary is when some parents have That Meeting and it is the life of the child at stake. Educational issues, I can come up with Plan B, C, and D. For families facing serious medical issues, That Meeting is catastrophic. It is a life or death moment.

That is why I am glad to see 18,000 signatures on a petition against That Meeting. When you know you are not alone, and we take a stand against That Meeting in its most terrible form; that is the power of letting someone know the catastrophe is upon you. We've been there, and we are, as a community, saying: No More. Stop the ignorance. If you are a professional, act like one. Don't be the ignorant obstacle at That Meeting. Do. Your. Job. And do it in a professional, appropriate manner.

Go Team Amelia. Here we stand.

Sunday, January 15, 2012

The Fight for Amelia

In my last post, I noted the post where Amelia Rivera's parents were told by a doctor that Amelia did not have a right to live because she is "mentally retarded" and "brain damaged." I was right. I didn't get any sleep that night. The thought that there are people- professionals who are supposed to be familiar with disabilities and the rights of people with disabilities- is terrifying.

Note I didn't say "surprising." Unfortunately, we know better. We know the ignorance remains, even in people who should know better. Who are trained to know better. Who we trust to know better. Even people who say they know better.

That is why the fight for Amelia is so important. There is no excuse for anyone to deny someone the right to live, especially by denying them appropriate medical care and service. Professionals of a children's hospital know better. If they don't, the hospital should take measures to find out why, and make sure everyone on their staff knows better, and believes that all people are due their basic rights.

Not just the doctors, nurses, and social workers, either. Everyone. The administrators, the assistants, the janitorial staff, the cafeteria staff, the volunteers, the secretaries... everyone.

Disability is no excuse for denying a person- no matter their age or your assumptions about their "quality of life"- the right to live. People with disabilities are already actively targeted for bullying and crime; they don't need to be targeted in a hospital, when they are trying to get medical care.

This is important. Today, it is Amelia. Tomorrow, it could be Joey. Or Andy. Or you.

To see a list of more posts written for Amelia and disability rights- such as the right to LIVE- check out this site.

And please: sign the petition!