Today we did Abby’s first Individualized Education Plan (IEP) at the school district. I really hate IEPs.
As I drove to the meeting, I played Pearl Jam’s “Given to Fly,” the song I used to listen to a lot after Casey was first diagnosed with autism. I turned the music on as loud as it would go before the garbage in the doors rattled and let the music surround me for a bit.
“He could have tuned in, tuned in, but he tuned out…”
I thought about all of the IEPs I’ve done with Casey. All of the fighting with the district over shitty teachers (just one, actually…), therapy times, inclusion, etc. The time I stood in a Michael’s and screamed into my phone at a school psychologist, “I know our rights! I’ve read all of IDEA! You don’t know what hell you’ve just unleashed…” All of the hours sitting around tables negotiating. Losing my shit when I wanted to stay composed, staying composed when I wanted to strangle someone. I remember nodding in numb agreement when they told me that Casey would probably never be able to be in a regular classroom…
“A wave came crashing like a fist to jaw…”
Then I thought about moving to Arlington and having the special education teacher, Gina, meet Casey and say, “He’ll mainstream. He’s going to do great. We’ve got this.”
“Delivered him wings, ‘Hey look at me now!’ “
Handed to us was a classroom with an amazing regular teacher and a support staff that would help Casey realize his potential. Gina, who would push Casey beyond our expectations. Who used his strengths and his passions to expand his education to things once thought unattainable. We moved to Rhode Island to a new school system and a new way of approaching things. Gearing up for a battle for services, Casey was welcomed by a staff who was willing to bend as far backwards as necessary to provide him the best education they could.
Today at Abby’s IEP, goals were made and services were given without me even so much as having to hide clench fists under the table. The IEP was written for here, but will have to be ‘honored’ when we move back home to Washington State in August. She’s offered speech, occupational and physical therapy in the classroom three times a week for all. She’d be in half day of developmental preschool, then spend another half day in an inclusionary preschool with “typically developing” peers. The guidelines for these services are outlined in the Individuals with Disabilities Education Act, which is federal law, and then interpreted and carried out by the different school districts.
The interpretation of necessary services vary wildly. From us being told that Casey would never mainstream on the west coast, to him being readily mainstreamed on the east. From Abby getting 28 hours a week of services on the East coast to four and a half on the west. That’s right. I called the Office of Special Education in our district in Washington and that’s what they would give her. No inclusion with typical peers. Two days a week, two hours and fifteen minutes a day.
I’ve been thinking a lot about those disparities. Is all about money? No. Is it all about teachers? Absolutely not. The teachers and staff in Washington want the children to be successful. Besides the two I’ve spoken about, all loved Casey and really had his best interests in mind. So what is the biggest difference?
“He floated back down ’cause he wanted to share
His key to the locks on the chains he saw everywhere”
I’ve read the history of special education law- and it was not brought about by lawmakers. No, it was fought for by parents. Improving districts and schools has been through battles won that can’t possibly be shouldered by the teachers and staff alone. Reform needs to happen. It takes parents who know their kids need and deserve better. It takes losing your shit when you’re supposed to stay composed, and staying composed when you want to strangle somebody.
Up until now I’ve fought leaving here with all of the rage in my soul. I’ve often pictured myself screaming and clawing at the hardwood floor of the home we’re renting as Lance drags me out by my feet. I really liked the idea of my kids’ IEP meetings not being a battle of wills. I liked the idea of it just being easy. And then I remembered that mom, screaming the words to a Pearl Jam song as she sobbed in her car after moving her child from a regular kindergarten to a self contained special needs classroom, after being told repeatedly that he would never fit in in a regular class. I ache when I think of that moment. I ache that parents are still having those moments and don’t know they can fight. They don’t know how much they can change.
So we’re going back.
“He still gives his love, he just gives it away
The love he receives is the love that is saved
And sometimes is seen a strange spot in the sky
A human being that was given to fly”
Maybe the fights we’ll soon face will pave the way for other families to receive better services than we did. In the schools we’ve been to here on the East Coast, we benefited directly from the fights of the parents who went before, and for them, I am eternally grateful. I am excited to join the ranks of the parents I know in Washington who are already working for more. I’m excited to give back what was given to me by the generation of parents before me.
And in your schools in your cities and states, will you join me? I don’t know how, but I do know why: To give our kids wings so they can fly.