A Letter to My Daughter’s IEP Team

As we prepared for Grace’s kindergarten IEP meeting last year, we were all coping with a very new, terrifying global pandemic. Several of the staff hadn’t even been able to meet with Grace for evaluations because schools had abruptly closed just weeks before. More than ever, I felt the need to humanize her for the team. I composed this letter to read at the start of the meeting, so that when they would think of of her, they would see more than an adorable little girl with Down syndrome – they would SEE Grace and all of her ability, promise, and potential.

Dear IEP Team,

I chose to make this statement because I wanted Grace’s IEP meeting, even amid the challenges of a global pandemic, to be a memorable one. When you see her in the hallways of school next year, I want you to remember her as the unique, capable, wonderful little girl who is loved so fiercely by her parents that they couldn’t help but tell you what that means for this process.

When you look at Grace, I’m sure you see that she is special. You have no idea. You would be amazed by all that this delightful child has encountered and overcome in her five-and-a-half years. Hers is a story of repeated triumph in the face of adversity.

Grace is a champion at life.

Through every challenge and opportunity, from an unbelievably difficult recovery following open-heart surgery at the age of three-months to the funny, affable, kind, determined, articulate individual you will meet, Grace has delighted and surprised us. Truly one of my greatest gifts in life is being given the opportunity to share her with the world.

We are so excited that Grace was born at a time when she will have an unprecedentedly positive, supported life compared to people born with Down syndrome even one generation ago. While their parents were invited to leave their healthy children at the hospital simply because they had an extra chromosome, Grace is facing a life spent integrated with and accepted by community and peers. In addition to meaningful relationships, we look forward to opportunities in post-secondary education, fulfilling employment, and living situations that maximize independence. To achieve these long-term goals, we ask that you join us in using the same strategy that has worked for Grace since birth: love her, learn as much as we can about her, equip her with the tools she needs, set high expectations, offer support, and then watch Grace soar.

You might be thinking I am Grace’s biggest fan. You’re right. When she was born, I was born as an advocate. Not by choice, but out of necessity. I am not an outspoken person. I will not be the loudest voice in the room, but I will be here, making sure you see her and working with you to support her in the ways she needs and deserves.

Preparing for her transition into the school district has been difficult for me. All of Grace’s life, we have been enthusiastically celebrating every achievement we have worked so hard for, every little step in the right direction, every expectation blown out of the water by tremendous progress. In school, I fear that she’ll get lost in the mix, that you’ll lose sight of her potential, or that her challenges in attention will hide her promise in ability. We realize that at some point, Grace’s progress may spread farther away from the “norms” against which she will be measured, all while presenting with very real, very unique social and emotional challenges that will come along with that for both her and us.

That is why what we do as a team is so important. Academic goals are crucial, as are classroom and therapeutic supports. We must put the appropriate tools in place to ensure that she keeps developing and progressing on her own timeline. Please don’t forget the precursor to that support. High expectations have served Grace well and made her the remarkable individual she is today.

 Additionally, Grace’s inclusion with peers is crucial. They are her best models for social and academic behavior and success, and we know she is adept at learning from them. It is important that, despite her challenges, she learns to function in a large-group setting where some information is not necessarily catered to her level. That, of course, is the world she will face outside her home and classroom walls. Facilitating Grace’s active membership and participation in the general education classroom teaches her that she is a worthy, contributing member of a community, even if she is noticeably different. And, perhaps more importantly, it teaches her typical peers the same thing.

Thank you for your time. I look forward to working with you all moving forward to support Grace in the meaningful, effective education she deserves.

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