I was happy he would continue receiving therapies, but I vividly remember seeing the word “disability” in his documentation, and it broke me.
My son, Ben, recently turned three, marking an exit from the terrible two’s. Spoiler alert: threenagers are a real thing. His birthday also marked his graduation from Early Intervention Therapy (EI).
Ben was referred to EI to help him reach developmental milestones when he was discharged from the NICU, and his team of therapists have been a part of our lives ever since. They became our extended family. As Ben’s birthday approached, we wondered if he would qualify for the next level of therapies, known as an Individualized Education Plan (IEP).
While Ben has developmental delays, they’re nearly invisible to the untrained eye, and I always worry that at some point, he will stop receiving services. It’s an odd thing to root for – your child to appear in need of therapies, but I worry that Ben isn’t special needs “enough” to qualify for the services that are essential for him to reach his full potential and be successful. “Success” in Ben’s case means achieving basic milestones — learning to run. Read. Write.
An IEP meeting is a nerve-wracking thing. Every aspect of your child is analyzed, every piece put under a microscope. I went in armed with his current team, ready to mama bear the system if need be. There were tears (will I ever get through a Ben meeting without them?) and a lot of talking, but by the end, it was decided that Ben did qualify for an IEP, along with free preschool, to start on his third birthday. I left feeling relieved, but raw. I was happy he would continue receiving therapies, but I vividly remember seeing the word “disability” in his documentation, and it broke me.
I’ve never considered Benny disabled, and I still don’t. His abilities are sometimes different than other kids his age, but I think the “dis” is a disservice. He is a warrior.
The path after EI is a tough one. Gone are the days of therapists who were hand-selected by our service coordinator and came to our home (for free!) to work with Ben. Now, it’s on me to build Ben’s new team, not to mention find the time to work, be a mother to both my children, and make sure Ben’s special needs are being met. It’s hard. Really hard. But as Ben grows and learns every day, I’m reminded that it’s all worth it. He is worth it.
I still text our EI team with pictures of all the sweet things Ben does, and it’s a joy to see one another without having to document our meetings and sign off at the end. His first team will always be a part of our support system, but now we’ve added a group badass IEP mamas to the mix. There’s a beautiful strength and love in moms of children with special needs. Not only for our children, but for one another.
Someone recently told me that because of everything I do for Ben, he’s going to have an awesome life. While I appreciate the sentiment, it’s not completely true. Awesome takes a village. Or as I like to call them, Team Ben.
To learn more about IEPs, visit understood.org.
