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The IEP Vision Statement I Wrote for My Child

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“What is your vision for your son?”

This caught me off guard in our first IEP meeting. I was apprehensive going into the meeting. The intake process had been a terrible transition from early intervention. We weren’t really sure what to expect. But I definitely wasn’t expecting to articulate a vision for my son’s future.

Maybe some of you rattled that right off. But me? I didn’t even have a vision for dinner that night. I sat there feeling like the worst mom ever as I struggled to come up with something. I realized that I had never really thought about my vision for my oldest either. I began questioning if this is something other parents just naturally thought of. Did every other parent in the world besides me have a vision for their children? Could they just say it on demand?

In the end, we left it blank. That spot on the IEP where we, as parents, are supposed to share our vision for our child? We left it blank.

We have had somewhere around 20 IEP meetings in the course of three years. And for a long time that vision statement stayed blank. I never really thought about it. I just didn’t know what to write. We were fighting so hard for feeding therapy services, our vision became wanting our son to get the feeding therapy he was entitled to. Our vision was more about present struggles than an aspirational future.

That vision statement always haunted me. Parent concerns? Got it. Parent vision? Umm…

What is someone’s potential?

In one IEP meeting I finally asked what other parents put in that box. I had gone from leave it blank to documenting services he needed to asking the IEP team what I should put there. Can someone else tell me what I should put for my vision for my child’s future? Mom of the year right here. The team replied that often times parents will just put a general statement like “My child will live up to his fullest potential.”

So we put that in the box and that remained our vision statement for a while. I liked the idea of his team believing he has potential and presuming he is competent and able. But the idea of living up to his potential really didn’t sit well with me. What does that really mean? How will we know if he lives up to his fullest potential? Am I even living up to my fullest potential? Who defines what that potential is or decides if he’s living up to it? That vision statement on living up to potential nagged at me for a long time. But I was still drawing a blank on what else to write.

Here’s the thing. For me, being a mom is often about survival. It reminds me of being in boot camp. At Parris Island, there is a mantra that the way to survive boot camp is to make it meal to meal. You don’t count the days or the weeks or the months. You just make it through the moments you’re in and you focus on making it from one meal to the next. Parenting has often been like that for me. Throw in the surgeries, hospitalizations, doctor appointments and therapies that a child with disabilities often requires and survival mode just becomes the way you exist.

We had been fighting for feeding therapy so hard. That was our survival focus. And finally, we got it. And there really wasn’t anything else to fight about. Survival mode was passing. I could start thinking in terms of days and weeks and months. For three years of preschool, I never focused on that vision statement.

But a few months ago we had our kindergarten transition IEP and I knew we were going to advocate for full inclusion. On my drive to the IEP meeting, I kept thinking about what inclusion would mean for Gavin and how it would impact his life. While driving, I began to develop my vision statement in my mind. This time, I was actually going to write down a vision. I was out of survival mode. Sort of.

I hadn’t planned enough to type it out, or proofread it or spend hours and days writing it out. I sat in my front seat for 10 minutes before our IEP meeting with a scrap of paper and a raw heart. Finally the words just flowed out as I hand wrote what I wanted for my son’s future.

I did know my vision for him and it wasn’t a specific accomplishment. It wasn’t a finite end goal. It wasn’t about some abstract potential. It was about the kind of life I wanted him to have and the kind of person I wanted him to be. I always had that vision. I just had to find a way to articulate an indescribable amount of hope and love.

Knowing your vision

So here is what the vision statement reads in his IEP today. Raw. Unedited. Just the thoughts that flowed from my heart and my mind.

“Our vision for Gavin is that he is given every opportunity to shine in this world — that he is able to share his strengths and abilities, be loved and share his love with others, be kind and have others treat him with kindness, create meaningful friendships, contribute to society as a hard and independent worker, and always keep his beautiful smile and wonderful heart through all of his life’s journey.

We envision a future where Gavin is included in all aspects of life, and not one where he is segregated by what the world perceives to be his limitations. We hope that he continues to lead with his warrior spirit, overcoming things that people said could not be done, with the grace and light that is unique to Gavin.

We pray that the guides on his journey who will coach, teach and mentor him will treat him with the dignity and respect that he deserves, pushing him when he needs it and resting with him when he grows weary. We hope his guides believe in his potential and work to remove barriers from his path that are not his to overcome (like segregation, prejudice and bias).

We hope those who walk some path of his life journey beside him grow to love him as we do and understand the significance they hold in helping develop Gavin into the person he will become.”

You have a vision and whether or not you figure out how to articulate it in a box on a form is irrelevant. If you are in survival mode, it’s OK. Leave it blank. Put something generic in it. You can know at least one hot mess mom out there has done that and it did not reflect my love for my child or what services he received.

Once you move past survival mode, write that vision down. It has a way of becoming your true north.

A version of this story originally appeared on White Hawk Advocacy.

Getty image by golfbress

Originally published: September 29, 2018
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