Yesterday, we sat through an almost three-hour IEP meeting for Kay. I went into that meeting hoping to talk about how we could better support her, help her make progress, and give her the tools she needs to succeed. I left feeling emotionally exhausted, overwhelmed, and with a lot to process.
So much of the conversation centered around what Kay isn’t doing. The skills she isn’t demonstrating, the academic progress she hasn’t made, and the behaviors interfering with her ability to participate in learning. I know Kay has areas where she needs support. I see those challenges, too. But there’s a difference between recognizing that a child is struggling and making sure we’re doing everything we can to understand why and help them move forward.
Kay is five years old. She has Down syndrome, autism, hearing loss, and type 1 diabetes. She is learning how to communicate, navigate social situations, and participate in environments that can be overwhelming. She has so much potential, but she needs the right support and opportunities to demonstrate what she can do.
During the meeting, the school psychologist shared her belief that Kay has an intellectual disability, and the team voted to change her eligibility accordingly. I am still processing that change and what it means for her educational path, especially when so much of the discussion focused on the things she is struggling to do right now.
One of my biggest concerns is that Kay’s current struggles are becoming the measure of her potential, rather than a starting point for figuring out what she needs. When a child struggles to engage in learning, I believe we have to look beyond the behavior itself. What is making the task difficult? Does the child have the support and tools needed to participate? What can we change to help them succeed?
We also discussed the possibility of moving Kay from her current self-contained SLD classroom to a Life Skills classroom at another school. I understand that placement decisions must consider a child’s individual needs, but I worry about whether this is the right next step before we’ve fully explored the support and opportunities Kay needs in her current setting.
By the end of the meeting, I knew something needed to change.
Kay’s audiologist shared that she has seen some children benefit from spending more time in ABA therapy than in school, or splitting their time between the two. I appreciated her honesty, her kindness, and her willingness to recognize the progress she has seen in Kay. After discussing everything with Kay’s BCBA, I made a decision.
For now, Kay will spend Tuesdays through Thursdays in ABA and continue attending school on Mondays and Fridays, giving her more time for individualized support throughout the week.
This wasn’t a decision I made lightly. I believe in the importance of education, and I want Kay to have access to everything she can learn and experience at school. But I also have to be honest about what I believe she needs right now. I hope that the additional structure, individualized attention, and opportunities to work on the skills and behaviors interfering with her learning will help her make meaningful progress.
My hope is that, with time, consistency, and continued support, Kay will build the skills she needs to participate more successfully in school and eventually work toward returning to a full-time school schedule. For now, we’re taking things one step at a time and focusing on what will best support her.
I don’t have every answer. I don’t know exactly what Kay’s educational journey will look like six months from now or a year from now. But I do know that she deserves to be seen for more than the things she cannot do today. She deserves people who recognize her challenges without losing sight of her possibilities.
Advocating for your child isn’t always a big, defining moment. Sometimes it’s sitting through nearly three hours of difficult conversations, trying to hold back tears, asking questions, and having the courage to change direction when something isn’t working the way you hoped.
So, for now, we’re adjusting. We’re leaning on the people who know Kay, believe in her, and are willing to help us find a better way forward.
This isn’t the end of our expectations for Kay. It isn’t the end of our hopes for her education. And it certainly isn’t giving up. It’s simply our next step.
And we’ll take it one day at a time, together.