There are many challenging things about parenting a child with a disability. And among them, IEP meetings are one of the most daunting—they’re full of legal jargon and confusing processes.
Catherine Whitcher has been guiding parents and schools in creating IEPs that our children reach their full potential for over twenty years, and in this episode, she gives us some of her best tips.
I’ll never forget what it was like to have my child in the NICU.
The jargon, the medical terms, even just the names of all the machines that sustained him—everyone assumed that I understood it, that I knew the meanings. They spoke of pulse-oxs and intubation and CT scans. The words were vaguely familiar but had very little meaning to me.
And really, the onslaught of what felt like gibberish started long before the NICU. As specialists met with us to discuss options and probable outcomes for my then-unborn son, I felt like a deer in the headlights. Did other parents understand this better than me? Why was it so hard to wrap my head around what they were telling me? And how could I possibly mother this child when the life-saving procedures and equipment were so overwhelmingly foreign to me?
Well, as painful as the learning curve was, it happened, and I figured it out. Mostly, I learned how to put my pride aside and ask questions. And three years later, I feel fairly confident in the medical setting and know my fair share of terms and acronyms that once had my head spinning.
What does all of this have to do with IEPs (Individualized Educational Plan)? Well, as Kimball recently neared his third birthday and we prepared for our big IEP eligibility meeting, I realized this was a very similar experience. Luckily, it was much lower stakes since his educational accommodations aren’t as obviously life-threatening as was in the case with the NICU, but the assumed knowledge and my ignorance made for a lot of overwhelm, and still does.
As IEPs are a huge and constant part of our lives with our children with disabilities, for many of us it definitely falls in the category of I-don’t-want-to-have-to-do-this-but-I-love-my-child-so-I’d-better. Again, much like the NICU. And for so many parents, it can be very triggering to that ever-present grief. All of it—the actual IEP meetings, leading up to it, afterwards, and conversations like the one I had with IEP expert of 20 years Catherine Whitcher.
As she explained the ins and outs of creating an amazing IEP for our children, I felt this all-too-familiar pit in my stomach. Thoughts raced through my heart such as: How did I get to this point? Is this really my life? How will I possibly be the advocate my child needs me to be? And it’s all a big, fat reminder of how different our parenthood looks than the one we previously imagined for ourselves. But if we lean into that discomfort, we can process through it while acknowledging that we are not alone in these feelings. And we can also sit in the love we have for our children. It’s all so intertwined together—the love, the grief, the joy, the immense sadness.
When chatting with Catherine, I loved that we pointed out that the best goals we can create for our children in IEPs are those that improve the quality of life for our beloved children, and for the rest of the family, including us! She encourages us to look at problem-areas in our lives with our children and create goals that would help them work through those things. Does your child melt down in the Target check-out line? Great! Make a goal that practices waiting and patience. Suddenly, the IEP goals become exciting because they are relevant to the family and the student. They improve life. As Catherine put it,
“That's going to help a child move through faster because we're all excited. We're all cheering. It doesn't feel like a heavy weight that we're carrying around. It feels like something we want to work towards.”
And I remember this same thing happening with the creation of IFSP goals in Early Intervention. When the goals were relevant and something I desperately wanted for Kimball—and not too far out of reach— it was truly exciting. I was so much more motivated to work on those things with him. And, really, that’s how it works with all goals.
So, as we focus on educational goals for our children and learn how to give them the best life possible, let’s remember we’re not alone in all the emotions that come our way, excitement, grief, sadness, love—all of it.