It took two and a half years to get the services I needed for my kids since we moved to Minnesota. That was several social workers, several of the same evaluations (so frustrating) until finally things happened.
Actually, things started moving and happening after I quit my full-time job so I could devote all my time and energy to care for my girls. It should not have come to that, but it did.
I am “that mom,” who shows up at IEPs with treats, but also makes it clear, “this is non-negotiable.”
I am “that mom” who shows up at parent-teacher conferences and tells the teachers, “You can put your computer away, today you get a lesson about my child.” And I go through printed materials and make them read out loud the handouts I give to them (because did you know in middle school and high school most general education teachers don’t read the IEP? All they do is get instructions form the special education teacher and that’s it). So I have to be “that mom” in order to get teachers to understand the complexities of each of my two kids who have IEPs.
I am “that mom” who — to my children’s embarrassment — emails teachers when inclusion is “forgotten,” because nobody puts my kid behind a piano at a choir concert. (I talked to the choir teacher and he is lovely, extending grace is a thing but “that mom” will come out swinging when something that should have never happened, happened.)
I am “that mom” who spends hours on the phone with insurance, making sure one of my kids doesn’t go without medication or the adaptive equipment she needs.
I am “that mom” who posts on social media calling out the ableism my kids experience on a regular basis.
I am “that mom” who becomes “that friend” when people use derogatory language or make jokes at the expense of people with disabilities. They should know better.
I do all this because I have to be “that mom.”
I have fight for my kids because if I don’t, then who will? I know I am not alone in this battle, and there are many other parents of kids with disabilities and now, a generation of disabled adults who are speaking up and leading the efforts in disability advocacy so we can join in as allies. But I am the only person walking in to the IEP meeting (even with an advocate, it is an IEP for my kid). I am the only one who can fight insurance on their behalf. The only one who can confront teachers when an IEP is not being followed. And my kids are vulnerable, much more vulnerable than many other kids.
So I will keep being “that mom” for my kids as long as they need me to be.
Maybe sometimes I don’t recognize I don’t have to fight so hard, but past experiences have told me I have to in order for anything to get done.
Perhaps when individuals with disabilities are truly considered in all aspects of our society, I won’t have to be “that mom.” But until then, yes, I am “that mom” and proud of it.
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