IEP violations and Civil Rights

I’ve learned some things about advocacy.

I suppose that’s a benefit to this horrible situation: navigating bureaucracy and finding resources and people who understand.

Every child is entitled to an appropriate education and if that is being denied: call Disability Rights. Every state has a chapter per federal regulations to oversee states compliance with IDEA and ADA guidelines. The Florida organization, located in Tallahassee, covers our entire state.

They provide attorneys and advocates and charge the county for their services.

And they track systemic issues so that even if you decide not to utilize their services, there is value in reporting IEP violations or other problems.

My child’s civil rights have been violated. My family is traumatized. My son is still not in school. But we are making progress sitting through the fountain of red tape and we have hope for resolution. I’ll keep you posted.

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One Child is Too Many

I met today with a professional autism specialist/advocate we have worked closely with for years to discuss my son’s recent unjust institutionalization.

She shared that 12. TWELVE. children she works with were “Baker Acted” (held inpatient for psychiatric evaluation) the first day of school.

Some of whom are elementary school aged. And..apparently baker act isn’t the worst thing. Some of her students were tased or handcuffed.

THIS MUST END.

This speaks of an egregious lack of leadership. When we value every child, when we provide teachers training and resources, when school resource officers are used to keep children safe and not as disciplinarians, then perhaps we will see change.

If you are navigating a school situation with a child who has special needs, I urge you to contact http://www.disabilityrightsflorida.org. They will provide free representation via advocate and attorney who specialize in disability rights. And even if you choose to hire a different attorney, they track incidences and look for patterns in counties reflecting systemic problems.

And they get it. You’re not alone–promise.

Autism and Shame

There seems to be a heavy dose of shame dealt to families with autism.

Do we tell strangers? Casual friends?

Did we unknowingly cause autism in our child? Could we have prevented it?

Do we brush off the child’s quirks, hoping they won’t be noticed?

Do we protect the child’s privacy?

When do we push for mainstream education and when do we accept that a more restrictive classroom would benefit the child more?

And what does the child internalize?

When my son was wrongly “baker Acted”, he was sobbing and terrified. He told my husband and the police, “please! No! I’ll be good!”

But he is good.

He made a bad decision using inappropriate language.

That doesn’t change his worth.

He is sensitive and funny. He is talented at drawing and comics. He knows more about the Bible than most adults.

And even if he was none of those things: he is precious. He was created with purpose. He is loved.

There is no shame in autism.

There is shame in treating people with special needs as inferior.

There is no shame in loving someone with autism.

There is no shame in advocating for your child.

There is no shame in doing your best–and wondering if it’s good enough.

Guilt says I did something bad. Shame says I am bad.

There is neither guilt nor shame in autism.

There’s stress and meltdowns and fear. But there’s love and sensitivity and joy, too.

Let the guilt and shame go. You are exactly right, just the way you are.

Autism Moms get lonely, too

It’s a blessing to be a mother. With the joy comes responsibility, pressure, and big challenges–intensified when a child has special needs.

Having a child with special needs means wanting to protect them, and their privacy. They want to be treated as “normal” but they don’t act normally.

It’s made friendships with other families with neurotypical children challenging. We operate under a constant layer of behavior management with positive/negative reinforcement.

You can’t just sit and chat with moms–you have to make sure your child is using appropriate language and actions. Kids easily and often unintentionally can exclude or “gently” tease which results in meltdowns that leave the parent embarrassed and quickly gathering the children to leave. Bad words, screaming, crying, shouting “I want to kill myself” happen regularly. And it’s frightening as the parent.

Will someone judge me for having a “spoiled” kid? Do I look like I can’t control my kid? Is someone going to call DCF on me?

Anything out of routine can cause a meltdown–even something positive like going out for ice cream. That’s a whole separate blog. 😉

After sharing about our horrific experience with my sons first day of middle school, I am beyond grateful for the reminders that our family is not alone.

I’ve received messages from so many people, some who I haven’t really spoken with in years. I am grateful to know that other parents care and see the injustice that was dealt to my son.

It helps to know we aren’t alone.

My autistic son was Baker Acted the first day of middle school.

I was stuck in the high school car loop picking up my oldest when I got a call from the middle school guidance counselor: please come immediately to help with my son.

I sent my husband, and as I was pulling into my driveway to drop off my daughters, received a cryptic text from my husband: “Call me now. He’s being baker acted.”

What?

My 12 year old son has a sweetness to him, despite his preteen reluctance to shower and anxiety in crowds. He thrives on routine and consistency; clear expectations and quiet.

We knew middle school would be hard. Even elementary school wasn’t easy for him, but we had a great team of people who knew and loved him. We had developed an effective IEP and communicated it at a “roll up meeting” with both his current elementary school team and the middle school guidance counselor.

Most neurotypical adults I know don’t have fond memories of middle school. It’s an awful age, socially and physically.

So we worked to prepare our son.

We walked his schedule on an empty middle school campus. We asked to meet with guidance before school started. We took our son to middle school registration and orientation. We met up with a friend and her son who would also be at the middle school.

He was excited to start fresh at a new school. He would be riding the school bus for the first time!

He made it through the first 3 periods. Lunch was confusing, chaotic, and loud. Long lines made it difficult for him to acquire his lunch. We had packed snacks in case this happened. He was invited to sit at a computer by the guidance counselor but was overwhelmed and declined.

He never ate lunch. Drank water. Or remembered his snacks.

He was confused and lonely. He was hungry.

He visited the guidance counselor, who chose not to call us.

He went to class and at the end of the day he’d had enough.

He began scratching his arm (he does this when he’s upset–it’s common for children with autism to do this). He was removed from the classroom because this is inappropriate behavior.

He said “I just want to kill myself so I don’t have to go to school.”

Not a great phrase.

We’ve begged him not to say that.

He says it like a teenager might say “OMG! I’d just DIE if that happened.”

He doesn’t have pragmatic language skills. Which is noted in his school file.

He doesn’t have access to weapons. He is supervised in our home. And he is not suicidal.

However.

The new school resource officer overheard and decided to Baker Act our child. Without context. Without questioning his stress level or mental abilities.

The guidance counselor chose not to get involved. He chose not to implement the functional behavior plan on file. He chose to delay contacting us. He chose not to prepare the teachers and staff who would be interacting with our child.

He disregarded everything outlined in the IEP.

Because of his laissez faire approach, my son suffered.

I pulled up to this brand new to us school. And watched in horror as my confused son stepped into the back of a police car.

I followed them for 45 minutes until we got to an inpatient psychiatric center.

I learned our doctor couldn’t release him from the Baker Act. I asked what to sign so that I could take my child home. I begged to stay with him.

Instead I was asked for my insurance card because we have to pay for unwanted, unneeded, unauthorized inpatient overnight care and evaluation.

I was told I had no power and they could do whatever they deemed necessary for my son.

My son said “What?! I say that all the time!”

I answered, “And this is why we tell you NOT to say that. ”

He exclaimed, “OK OK! I get it! Can we go now?”

“No, buddy. I am not in charge now. I can’t fix this.”

He looked at me with terror-filled eyes as the reality of his situation materialized.

In what world is a mother unable to make decisions for her child?

I made it as easy as possible for my child. I asked him to think of it like going to summer camp. I gave him a picture of our family. I gave him a snack while we waited.

We didn’t see him again until 19 hours later.

Our beloved doctor had to discharge us from care because he was Baker Acted and it’s now out of scope for her.

We owe thousands of dollars for his care.

We do not know where our child can safely learn.

Our daughters didn’t get to share about their own first days of school.

We lost sleep. We lost trust in the school, in law enforcement and in our society. We are embarrassed and lost.

Now we are spending our weekend redeeming our son from the inpatient facility and combing over his IEP and paperwork to prepare for an emergency meeting with his school. Because accountability is important to us. And we need a plan documented for his future even if he doesn’t return there.

Anyone know a good lawyer?