Enough: Stop Fighting, Start Looking for a New School
Part 1 of a series published in the Autism Digest
It’s your child’s first day of school. Teary-eyed parents watch and wave, hearts swelling with pride as their little ones step into a new phase of life.
Unfortunately, the picture for parents of children with autism is often not as rosy.
These special needs parents often begin the journey feeling supported by the promises of a host of acronyms: IDEA (Individuals with Disabilities Act), FAPE (free appropriate public education), and NCLB (No Child Left Behind Act).
Then, they encounter an unpredictable, constantly changing experience.
Their road is cluttered with speed bumps arising from red tape, existing school policies, and budget constraints, all running contrary to their expectations,
Conflicting attitudes surface about accommodations and services for children with special needs. Parents find themselves shouldering unanticipated external pressures, such as obtaining evaluations and finding (and funding!) necessary services.
Creating a positive educational experience for autistic children is hard work for everyone involved. The lack of understanding about autism and ripples of miscommunication make it difficult for school staff and parents to maintain a collaborative balance.
In the end, whether the path has been defined by cooperation or confrontation, many of our children with autism will still lack the supports and services needed for emotional, behavioral, and academic progress.
At some point, parents often wonder: Is this the right school for my child? That’s when the experience of other parents can help.
The Long Hard Road
What some parents endure as they strive to create the best program for their child is almost unimaginable, even to those deep in the special education trenches. Here, four moms share their stories and the challenges that made them consider different educational placement.
These moms were devoted to ensuring their children received the best education experience. Some quit satisfying and successful jobs to meet commitments for meetings, interventions, communication, and therapy. In hindsight, they see everything as part of the road leading them to switch schools.
Amy’s story
Amy’s son loved pre-school and kindergarten. During those years, he was happy and talked up a storm in classic Asperger’s style.
But everything changed one month into first grade. He stopped talking except to say he didn’t like school and didn’t want to go. And then he uttered a comment that would break any parent’s heart: “Can you keep me safe, Mom?”
Amy immediately expressed her concern. His teacher replied, “Everything here is fine.” Then, one day, a note came from school saying there were problems: her son refused to work and had meltdowns.
In an emergency meeting, Amy learned her son was being put into a separate room every time he had a meltdown. The “calm room” was nothing more than a closet with a rug and a therapy ball.
The school did not complete a functional behavior analysis. The IEP team did not create a plan for positive behavioral supports. Even worse, they did not contact Amy first to discuss their choice of action. They just locked her son in a room alone, sometimes for as long as 30 minutes, until his screaming stopped.
Amy considered whether to invest time and money in a legal battle or put her efforts into something that would help her son. The decision to opt out of public school was easy, especially after her son was diagnosed with post-traumatic stress disorder as a result of the inappropriate restraints.
Kathy’s story
Kathy’s autistic son was enrolled in a public school that only offered regular education or life skills classrooms. The team recommended private placement, but after visiting each school, she learned they were all inappropriate for her son.
The school agreed to include him in the regular education classroom with full-time support from the county’s behavioral health wraparound program.
But before the support person was allowed into the school, she had to sign a contract. The contract prohibited her from discussing anything that happened during the school day with Kathy.
Feeling caught in the middle and unable to do her job properly, it wasn’t long before the aide quit and Kathy’s son was left without one-on-one assistance.
Without that critical support, her son’s behavior degenerated and frequent behavioral outbursts followed. Whenever that happened, he was sent to the life skills classroom, little more than a babysitting stop, where he received neither appropriate support nor academic education.
Carol’s story
Carol’s son survived in public school through 9th grade even though their district offered no autism support programs. A good year was when the teachers tried their best despite no training in autism.
Most years were marked by the school’s lack of communication and failure to implement plans agreed upon in the IEP.
In 8th grade, her son was physically attacked by other students. The school did nothing. In 9th grade, he was harassed in the gym. For several years he was blatantly bullied by not just students, but teachers also.
In spite of Carol’s best efforts – and they were many - no one at the school intervened. He came home every day, incapacitated from the stress endured at school. “Year after year I thought it would get better,” she said. “I hung on too long to the ideal that they would do something.”
Patty’s story
Patty was satisfied with the effort her school team put into helping her son with Asperger’s overcome his emotional and sensory issues. However, she also encountered the “everything is fine” syndrome.
She talked with his special education teacher every afternoon and was almost always told it had been a great day. In preparation for an IEP meeting, she asked the teacher to document any behavioral issues that needed a better plan.
Even knowing that his “great days” must have had difficult moments, she was stunned to read details about severe meltdowns requiring the vice principal’s intervention. None had ever been mentioned to her.
In the middle of an emotional crisis so severe that hospitalization for her son seemed imminent, Patty called a team meeting and asked them to put fewer expectations and pressure on him for a few weeks.
The principal, who up until then had been supportive, said, “We can’t do that because we have to prepare him to move up to middle school.” It was a complete disconnect between individual needs and one-size-fits-all institutional requirements.
Her son’s energy was consumed by the effort required to maintain control at school, leaving him with no emotional reserves and unable to participate in activities outside of school. When he got home, he either withdrew or had meltdowns for hours. “Where’s the quality of life in that?” Patty asked.
Mapping a New Direction
When you’re in the middle of a struggle with a school system it’s easy to get caught up in emotions and hard to take a step back for a fresh perspective. Amy, Kathy, Carol, and Patty kept their focus on six principles as they searched for the right course of action.
- Know your child … well. Knowing your child is the only way to confidently pursue their needs. Along this path, you’ll need that conviction when you’re faced with accommodation choices. It also gives you courage when teachers, administrators, health professionals, family, friends and society in general are all saying you should be doing something different. Listen to their advice. But know your child. Stand your ground.
- Dig deep to discover what’s happening at school. Realize that you may be way outside the communication loop, even under the best circumstances. This simple awareness works to your advantage. Ask questions like a pit bull while maintaining a calm exterior. Don’t assume anything.
- Don’t settle for business as usual. Some education standards are spouted like billboards along a crowded highway. One of the most common concerns socialization. Everyone demands to know, “How will they learn socialization skills if they’re not in school?”
But what socialization does your child gain if they spend most of their time in an inappropriate environment, feel overwhelmed with anxiety and anger, or deal with bullying and name-calling? Challenge the team to think outside the box.
- Research your options. What approved private schools are on your school district’s list? Are any of them appropriate for your child? Are other public options available? Would cyber schooling, homeschooling, or a tutor work for your family? Are you willing to move to a different school district? Does your state offer special funding for different school options?
- What are you fighting for? What outcome can you expect if you continue to fight with the school? What are the chances the school will agree to the accommodations? And even if they do, how long will it take them to implement the program? Are you certain they will? Agreement and action are not the same.
- Don’t let the fight become the focus. What’s happening to your child while you fight the school? Don’t take too much time negotiating if your child suffers in the meantime. If your child is increasingly frustrated, anxious, withdrawn, acting out or melting down, take action. All the parents adamantly agreed: Don’t wait too long.
Finding True North
Deciding to switch schools – usually done standing alone against the majority opinion – was the best thing for these parents and their children. It was never viewed as a failure or made with doubt. Their frustration was channeled into the fuel for taking action.
For these families, it was quite simply the right choice. Their children have thrived since different arrangements were made.
How do parents embroiled in difficulties with their school know when they’ve come to that fork in the road and it’s time for a new school placement? The four moms shared this from their experiences:
- When the emotional, physical and financial toll becomes such that your child is losing you as the best parent you can be.
- When the resolution to the problem is not on the immediate horizon.
- When you’ve given the school every opportunity but things haven’t improved. It’s a world of difference to have your child in the hands of people who don’t have to be pushed or sued to do the right thing.
- When quality of life is diminished and your child fails to progress or is simply falling apart.
Realigning Your Compass
Let’s consider one of those acronyms — NCLB (No Child Left Behind). Would it surprise you to learn that one of NCLB’s hallmarks is “expanding educational opportunities”? NCLB seeks to enlarge school choice by encouraging a variety of public options such as charter, virtual and magnet schools and by providing tuition assistance.
Finding a genuinely individualized strengths-based program is an attainable goal. If your child’s current educational placement is falling short, then maybe it’s time to consider changing schools.
As Carol said, “Every family has to decide what will be right for their child … and thank goodness we can!”
