Today’s Our Land Series was written by my new friend Amanda of Everything Special Ed. Amanda is a mom, a special needs advocate, and author of The Everything Parent’s Guide to Special Education. She uses her experience to help parents understand and navigate the confusing world of IEPs and special education and empowers them with the knowledge to productively meet with teachers and therapists. In short, she’s awesome. Plus? She’s giving away a copy of her book today – right here. Just leave a comment to enter and good luck!
Our Land: Do All Kids Have Special Needs?
By Amanda Morin
I have two children with special needs. I’m still getting used to saying that and I never know quite how I’m supposed to do it. Do I say, “I have three children, but only two of them have special needs?” Is it more appropriate to say, “Two out of my three children have special needs?” Is what I really mean; “Only one of my three kids doesn’t have special needs?”
It’s a strange phrase anyway. I mean, synonyms for the word “special” include words like unusual, different, unique, and individual. Give that definition, don’t all kids have special needs?
For a long time I was just a mom. I had one child and she was delightful. Her special need was (and continues to be) the need to do it all herself. She was stubborn, a little bossy, but overall fairly good-natured. By the time she was six, I was mom of a good-natured kid and a difficult baby who had some “stuff going on.” As the years passed, that baby grew into a tough toddler and sensory overloaded preschooler. I was mom of a kid with “autism-like stuff going on.”
“How lucky that your son has an early intervention specialist as a mother,” doctors kept telling me. Lucky? That’s not the word that popped into my head.
Sure, my background made it easier to know how to put structure and interventions into place. It was convenient to know who the specialists were, what their wait lists looked like and who might be able to find answers to how to help this amazing—but puzzling—child.
But the experience of having my own child who brought about more questions than answers was enlightening. In our new land, the one where empathy and wonder rules, I began to wonder if I’d been empathetic enough to the families I’d worked with.
Becoming a Qualified Mom
When Jacob was finally diagnosed with Asperger Syndrome and an anxiety disorder in grade school, I was no longer just a mom. I was a qualified mom. Not in the way you might think—no special certifications were needed, no classes were taken. No, I was qualified because people started adding qualifiers for me.
I was a special needs mom. An autism mom. Mom to a “twice exceptional” (or 2E) child. I was the mom of the child who was at the top of his class, but was constantly removed from class for what were deemed behavior problems.
“Your son is so lucky to have you as a mother,” people told me. Their expressions told me they didn’t think I was nearly as lucky to have him as a son.
I was the mom who was fighting with the school district to get special education services in place for a child who was “too smart” to need them. I was the mom of the kid who spent nearly 100 days away from home in a residential hospital-school setting.
“You’re a special education advocate?” one playground mom marveled, “Well, a child with special needs couldn’t have picked a better mother if he tried!”
What a funny thing to say. He didn’t pick me any more than I got to pick the title “mom” with no qualifiers in front of it. But that was okay. Because even though by then my good-natured daughter had morphed into a baffling teenager and our family had expanded to include another child. There were three of them and two of us, but at least special needs didn’t outnumber us.
Although I’m still not sure you should have more children than you have parents or hands for, the scoreboard was adding up evenly. Parents: 2; Special Needs: 1.
We had this covered. We had the defense, we had the offense, we had this game in the bag! Except that we forgot something: When you’re a special needs parent, the game is always changing.
When I was growing up, there was a comic strip about a boy named Calvin and his imaginary tiger (and friend) Hobbes. They played a wacky, simple, but confusing game called Calvinball.
The main rule is that the game can’t be played the same way twice. The other main rule is that all the rules can be changed or disregarded by any player and they don’t have to be followed. Also:
Any player can declare a new rule at any time of the game and he can do it either out loud or silently.
Keeping score doesn’t matter. The points don’t matter to the game and the way you keep score can’t make sense.
The day I realized my youngest son wasn’t just having a trauma reaction to his brother’s overwhelming personality and being away from home for months, the rules of our game changed.
The day he was diagnosed with a bilateral stereotypic movement disorder and ADHD, I realized it didn’t matter that the score was now Parents: 2; Special Needs: 2.
Because in our world the score could have just as well been Parents: Q; Special Needs: Triangle.
The score didn’t matter.
The best thing about Calvinball is the same thing that makes it hard to play—you get to make up the rules of the game. And for me the rules of our game are simple:
I have three children, all of whom have needs that make them special. They all have the ability to make me laugh, make me cry, irritate me and make me proud.
To the rest of the world, two of those children have special needs, which don’t define who they are, but it helps me define who I am. My boys make me more empathetic. They help me see the small joys and triumphs in the world. They help me appreciate the bigger joys and triumphs of my daughter.
The Points Don’t Matter
When I talk to parents who are just starting the process of figuring out what the game will look like for them, knowing that it doesn’t have to follow other people’s rules comes as a relief. Knowing that there are other players out there making up the rules as they go helps them feel less isolated and a little more connected.
I may not know how to say I have two kids with special needs, but I don’t mind saying it. It’s a point that doesn’t have any bearing on the game.
More about Amanda because she’s awesome and you wanna know, right?
Amanda Morin is an education writer and works with parents as a special education advocate. She uses her experience as an early interventionist, teacher and a special needs parent to inform her work.
She is the author two books, including the newly released, The Everything Parent’s Guide to Special Education. Amanda writes for many outlets, including the National Center for Learning Disabilities, Education.com and PopSugar Moms.
She has worked with renowned experts to provide parents with accurate, up-to-date and actionable information on child development, parenting, and educational topics. Amanda knows that giving parents the tools to advocate for and teach their children is an empowering way to affirm the pivotal role parents play in a child’s education.
And guess what? You can win a copy of Amanda’s book! That’s right – she wants to give you her book! Just leave a comment saying you’d like to be entered, and we’ll randomly draw a winner and she’ll send it to you. Cool, right?