We have 8 years before it happens to him.

If time has taught me anything, it’s that she waits for no one, sneaking up behind you while you plan and ponder and erroneously assume she will be generous and accommodating.

22 is the magic number.

The ledge is always there. In the beginning it looks so small you have to squint to really make it out. You’re too busy hoping and dreaming to really notice it anyway.

Each year though, it gets easier and easier to see until you’re so close you can’t take a step without falling and then that birthday comes along and someone shoves you all off before you can say, “Wait! We’re not ready!”

Oh but they try so hard to make it a happy occasion; caps and gowns in royal blues, tassels for those who manage to tolerate them. Sometimes there are two or three students at a time, sometimes just the one. No matter how many, the stage is always too big, the audience too small.

There is no valedictorian.

No one announcing Johnny’s college plans or Becky’s sports scholarship award.

The music is faint, the applause scattered.

I once sat next to the parents of one of the graduates.

They tried so hard to look happy and proud and in their own way they probably were, but their exhausted eyes deceived them, weathered hands gripping each other, knuckles white against the strain.

I wanted to make small talk, but I couldn’t summon “Congratulations!”

I probably should have kept my mouth shut.

In the end, the words came out anyway, awkwardly slipping past my lips before I could stop them.
“What now?”

They started back blankly.

I wanted to climb the stage, take the microphone from the teacher’s hand.

“WHAT NOW?!!!”

Instead, I made promises I couldn’t keep to people I didn’t know.

“It’s going to be okay.”

Then I counted backwards in my head

 

We still have 8 more years.

 

Maybe things will be better by then.

Maybe someone will think of something by then.

Maybe they’ll get rid of the ledge by then.

 

F@$#%.

 

We only have 8 more years.

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There’s panic swirling among many parents in California, after Judge Kimberly J. Mueller of the U.S. District Court for the Eastern District of California ruled in favor of California Concerned Parent Association and Morgan Hill Concerned Parent Association, granting the two non-profit parent-run groups access to nearly 10 million California student records.

California Concerned Parent Association (CPA) – comprised of parents of children with special needs in over 65 districts across the state and founded to “advance the status of children and parents with special needs,” – is seeking accountability and change from the California Department of Education, which the group claims in a 2011 action, is failing to provide students with disabilities access to a Free and Appropriate Education (FAPE) under the Individuals with Disabilities Act (IDEA). In order to effectively advocate on behalf of students with special needs and their families, the group requested anonymous records from the CDE several times in order to accurately survey the experiences of California students receiving services under IDEA. The group was met with heavy resistance and relied on the court system to grant them access to the student files. From the CPA website:

Two non-profit organizations, Morgan Hill Concerned Parents Association (MHCPA) and California Concerned Parents Association (CPA), filed an action against the California Department of Education (CDE) in 2011 alleging that the CDE was not providing California’s children with disabilities with a free appropriate public education (FAPE) as mandated by federal law. In order to vindicate the rights of these children, Plaintiffs’ legal team and experts require access to a limited amount of student data and education outcomes. During the two years leading to the issuance of this court order, Plaintiffs attempted to negotiate with CDE production of these materials in an anonymized form. CDE persistently declined. The Court overseeing this litigation, faced with an uncooperative CDE, ordered the materials produced subject a tight protocol that would protect the data.

As a parent of a child with disabilities who attends school in California, I’ve been watching the news regarding these records unfold throughout the week, and most of the responses I’ve seen from families potentially affected by this ruling have been fear, anger, and concern over the privacy of their children’s information. The reactions aren’t surprising, and I certainly do not begrudge any mom or dad wanting to protect their son or daughter.  But I  want to protect my son as well, which is why I’m more than happy to provide CPA with access to the thousands of documents that pertain to Andrew’s public “education” over the years.

I know I’m not in the popular crowd on this issue. I know I’m an outcast, standing off to the side as angry parents demand protection for their children.

Well, I’m angry too. And I want my son protected as well. Just like I wanted him protected during his 5th grade year of school, when I sent him to school, day after day, month after month, unknowingly into the hands of a teacher – no, a monster – who emotionally tortured him and physically abused him over and over again.

This morning I got an email from our school district, informing our family of the court’s decision, and providing a link in the event we want to opt out of having our child’s records turned over to the CPA. Towards the end of the email the district basically proclaims how concerned they are with our child’s privacy, stating they go to “great lengths” to protect our family’s private information.

Oh yeah? Where was your email, OUSD, when I informed you of our son’s abuse? Where was your email when my epileptic, 50-pound son was pinned face down on the ground in a floor prone like a criminal over a dozen times during the course of several weeks? Where was your email when my son was grabbed by the back of his size 6 polo shirt and shoved to the ground while being yelled at? Where was your email when my son was denied his adaptive stroller during a field trip and he collapsed to the ground in exhaustion? Where was your email when my son’s speech device was placed on top of a tall bookshelf, away from his reach, so that he couldn’t talk? Where was your email when my son was cornered in the bathroom stall, prevented from leaving until he peed on command? Where was your email when my son stopped toileting from the stress, when he began scratching his face until he bled from the fear and anxiety, when he screamed in horror every time he saw the school bus appear in front of our house?  Where was your concern then? Why didn’t you go to “great lengths” to protect my son then? Why didn’t you ensure his safety and treat him with dignity?

The only great lengths I’ve seen you go to when it comes to our family has been on your own behalf, shamelessly protecting your administrators and a teacher who has no business being near other people’s children, let alone children who cannot speak or defend themselves.

Our family has nothing to hide. The California Department of Education and districts like ours on the other hand? They claim to have our best interests at heart when it comes to student privacy, but pardon me if I’m a little more than jaded and don’t believe that heaping pile of crap.

I’m not telling you this to try and persuade you to come over to my side and see things my way. It’s impossible to ask that of you because our truths are our own and I don’t expect you to understand all that we have endured, and all that we continue to experience as a result of what happened to our precious son. I respect your choice to opt out if you so wish and keep your child’s school records out of the hands of the CPA. I just know that for our family, the decision is an easy one and extremely crystal clear.

From where I sit, knowing what I know, having gone through the trauma of having a child abused at the hands of a teacher employed by the State of California, I have no doubts that the CDE and school districts across the state prefer we opt out because that’s one less record that may prove negligence and outright denial of our children’s federal rights. They aren’t invested in my son’s privacy; they’re invested in protecting their egregious violations against students like my child from becoming public. They’re invested in continuing to deny the harm that is caused to our most vulnerable student population.

They’re invested in getting away with it.

So yeah. I’m angry too. For different reasons than you are, and that’s okay. Like I said, I can support your decision to opt out of this, no hard feelings. I just wanted to share another side of this issue, that’s not getting nearly as much attention.

And to the California Concerned Parent Association: If there’s some kind of hold up and it’s taking a while to get what you need, I am more than happy to load up my Volvo with the half dozen boxes containing Andrew’s files – files filled with unfairness and broken promises, files filled with pain and tears, files filled with indignity after indignity, injustice after injustice - and drop them off to you personally. If it helps just one child like Andrew get access to a safe, appropriate, meaningful education, our horrendous experience will at least not have been in vain.

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Autism and Wandering: Keep Our Kids Safe

boy running on beach

In 2004 our son Andrew was diagnosed with severe autism (by today’s DSM-5 diagnostic standards, a level 3 in severity). Since then, the amount of sleep we have lost worrying about our son’s safety cannot be quantified. There is no chart or graph or equation in existence that can statistically depict the fear we feel [...]

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Breaking News! People With Autism Are Among You!

IMG_1332

I have a little secret to share with you. Come here. A little closer. Okay, you ready? There are people with autism among you. In fact, you may be standing next to a person with autism RIGHT NOW. I’ve included a visual aide to assist you in the identification of someone with autism. Pay close attention so [...]

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She Was Me.

He was supposed to play in his first Challenger baseball game of the new season this morning, but instead we found ourselves at our local Children’s Hospital emergency room, making sure Andrew’s foot wasn’t broken. (Never a dull moment around here, that’s for sure). It was there that I first spotted them; a father and [...]

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We Should Have Had More Kids, Right?

The panic washes over me suddenly while I’m in the shower. We should have had more kids, I think to myself. “WE SHOULD HAVE HAD MORE KIDS!!!!!!!!!!!!!!!!!!!!!!!!!!!” I scream to my husband, the words piercing through the hot steam, penetrating my heart, echoing through me until they settle in my soul. There is silence on the other [...]

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The Night Before

It’s the night before Andrew’s first day of school. For many years this night held a mixture of excitement and anxiety for me, and after his new outfit and shoes were laid out, and his lunch box was packed, and his backpack was filled with shiny new school supplies, I would lay wide away in bed, endless questions [...]

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Special Needs Parenting: Don’t Ever Look at My Son That Way Again.

Disclaimer: I don’t care where you stand on the vaccine/autism issue. I have friends on both sides of this heated debate and I have friends who are right down the middle. And if I dislike you, it likely has nothing to do with your opinion on this subject and everything to do with you being [...]

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A Letter to an Impolite Cowboy

Dear Impolite Cowboy: I saw you on the track this morning, wearing your giant hat, walking your tiny dog, sweating through your wrinkled flannel, and I thought nothing of you; just another passerby, enjoying the same space, the same sun, as humans often do. I jogged towards you, my favorite song pulsating in my ears, my [...]

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It’s Not Autism’s Fault Other People Suck

“While I do love my son, I wish we hadn’t had him…. Autism is not a life, it is an existence that hurts everyone involved. I had a retirement to look forward to, now I have a child to take care of until I die and then the government will have him. How is that [...]

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