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What I Question About Our Special Education System as a Parent

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Casinos are smoky, dark places — except for their ballrooms, which flaunt vaulted ceilings, ornate wallpaper and round tables by the dozens, and provide a place for conferences to convene. A small stage with a podium, large screen and microphone sat at one end; tables full of coffee cups and coffee pots sat at the other. Parents, teachers, advocates, lawyers and experts flooded the room, clutching their new bags full of heavy books, personalized pens and pencils, and endless flyers from vendors. They all came to this Wright’s Law training for one purpose: to help children with special needs receive a better education. And so did I.

These weren’t just any individuals, they were my people. They know how I feel; they’ve walked in my shoes as a parent. They have the same worries and frustrations and concerns. What I wouldn’t give to be able to talk to each and every person in that room, to ask why they were there, to inquire about their child, to bond with them. But that’s not what today was about. Today was about being taught by a master lawyer and teacher of special education law. He travels the country doing these conferences and no doubt makes big money doing it.

He began by telling his own struggles with dyslexia and how he overcame them. And then he passed out a fill-in-the-blank pop quiz to see what we actually knew about special education law. I could only fill in three blanks, and I realized that though I’d been helping my daughter through the school system for eight years now, I knew very little. We were then instructed to get out our books and our signature “pen with a highlighter on the end.” It was time to learn from the expert on what we could do to make sure children get the services they deserve through the school district, or IEPs (Individualized Education Plans).

And so we dove into those books, one by one, flipping our fancy writing utensil from the highlighter side to the pen side as we went, filling the margins with acronyms and shorthand dictation, and making notes inside the front cover for easy reference. He was training us on how to read these books like a lawyer, on how to think like a lawyer, so that when we attended the IEP meetings with the teachers and directors from the school districts, we would be prepared. Nothing would get past us anymore, because we had knowledge. And I’m sure many in the room were thinking, “Wow, isn’t it so nice of this man to give of his wealth of learning and expertise? I’m so glad I get to read all this stuff so I can be a better parent/advocate for my child.”

But you know what I was thinking? How silly it was that I even needed to be sitting there, trying to figure out all these laws — the fact that I even needed to think like an attorney just so my child could do well in school. Parents of neurotypical children just send their kids off to school with few cares, much like I do with my middle child. But me? No, I almost have to become a lawyer to ensure my child’s success in school. I have to know the special education laws myself to make sure the school district isn’t breaking the laws.

I suddenly felt like being there didn’t make sense, that sitting in that room meant that something was gravely wrong with the special education system if all these parents needed to be so informed. Don’t schools realize that parents of children with special needs can have it hard enough already? Don’t they know that raising children, any children, is already a job in itself? And now I practically had to get a law degree in addition to that? A special education degree? An entirely new skill set of knowledge just to be able to raise my own child?

What if every teacher in a school district was bound to provide all necessary and vital information to every parent once a child is diagnosed with a disability? What if we knew, as parents, that we could trust, completely, that our child is getting every single service he or she deserves in order to thrive and succeed? What if we didn’t have to fight, or wonder, or study law books? What if we just got to be regular parents and send our child with special needs to school like every other child? What if all we had to do was tell our child’s teacher, “This is my child. He or she has autism (or any other type of disability).” And the teacher’s response was, “Don’t worry. We’ll handle it from here. He or she will be well taken care of. We know exactly what to do.”

I imagined a world like that, right there in that grand ballroom. It was comforting to envision a reality where my biggest worries would be what other parents might worry about from their schoolchildren: a scraped knee, an unkind word from a classmate or a low grade on a test. None of this need-to-know all-the-meticulous-special-education-law business that was being paraded around me. It would be entirely built on trust between parents and teachers, not long meetings and countless signatures. No fighting, no crying in IEP meetings. Just complete trust in the school system. They would do their job as teachers by providing all services available according to the laws, making sure they got the best education possible, and we would do our job as parents at home — bathing and dressing our kids, playing with them, reading with them, loving them, teaching them life skills, helping them with homework.

But then my actual reality set back in, and I remembered once again that all parents have a full-time job, whether or not their kids have special needs. And no two children are alike. This means every parent learns to parent based on the needs of the child, which proves the infamous declaration that parenting is “the hardest job in the world.” When you become a parent, you have no idea what you are getting into, because you have no idea what your child will be like. But you don’t give up, because your child is depending on you to help them reach adulthood. Education is a big part of that process.

What I do know is that my experience with school, though it has been up and down over the years, has been mostly positive. Teachers have bent over backwards to help my children and are often bound by certain laws to go any further. They are helping my children based on what they know of special education law, and SPED directors are often looking at the bottom line more than being willing to provide extra services, though many would like to do more. Schools and teachers are doing their best, this I know for sure. And parents play a big part in helping services improve. Speaking up does make a difference.

My job as a parent requires a different skill set than the next, but it doesn’t mean it’s harder. It just means it’s different. Parents are also teachers and should learn how best to teach their own children. For me, that means learning how to teach in a whole new way. For me, I need to know the special education laws and how to be an advocate, at least for now — maybe it is possible to take some of the burden off parents. For others, it might mean having to know all about diabetes, or depression or how to discipline a challenging child.

Though I sometimes wish things could be different for my parenting situation, I know it’s not going to happen any time soon. So I might as well dive into these books and make the grade — after all, I’ve now got that fancy highlighter pen. My children deserve a bright future.

Follow this journey on The Special Reds.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: December 9, 2015
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