Dreaming and Planning With Our Teenager With Down Syndrome

planning with teenager with Down syndrome We had a planning meeting last February for our teenage daughter, Penny, who has Down syndrome. Penny invited friends, family, and teachers to join her for this conversation.

Dreaming and Planning With our Teenager with Down Syndrome

This wasn’t an IEP (individualized education plan) meeting. It wasn’t to go over test scores or evaluate behaviors. It was a chance for everyone to talk about Penny’s hopes and dreams, needs and challenges, strengths and abilities. From that conversation, we together constructed an action plan to help as she transitioned into high school.

Dreaming for Teenager with Down Syndrome

Action items included things like reviewing the Circles curriculum with the school psychologist to establish good boundaries with peers, exploring clubs and activities to get more involved in co-curricular life at school, and creating a plan to “fade out” the adults in her life as she grows in independence.

I sometimes hesitate to share things like this. It speaks to the tremendous support we receive in this particular school district and through this particular team of people, and I know many other schools do not offer kids and families anything like this type of encouragement. Also, Penny’s needs are relatively mild and manageable, and I know that’s not the case for many other equally valuable and fabulous kids with intellectual disabilities.

Hope and Dreams

Still, I wanted to offer this visual because it gives a snapshot of a process that underscores the possibilities that open up when treating a child with a disability as a whole person. Penny is seen here not as a problem to be fixed or as a box to be checked, but as a young woman filled with possibilities to be realized.

Instead of focusing on her needs or weaknesses, we began with her hopes and dreams and all the things she enjoys and does well. We began with celebration, then talked about the very real challenges she faces, and put together a plan for next year.

Plans and Dreams for All Kids

Penny is now back in school with a team of supportive people who know not only her needs but also her abilities and goals. Our experience of planning and dreaming with Penny leads me to want two things for all kids, and especially for all kids with special needs:

  • an ability to name and celebrate their strengths and gifts,
  • and a team of people who will journey with them.

The next step is a PATH meeting when Penny turns 15. This process will help us plan for the day when she graduates from the public school system altogether. I am very glad that day is many years from now! But I am also grateful that we walk towards that day alongside a team of people who see this beautiful young woman for the gift that she is.


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Hi, I’m Amy Julia.

I write about faith, family, disability, and privilege.

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