"I am Isabella" - A School Team Tool - Joubert Syndrome & Related Disorders Foundation
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It’s August, and the excitement, anticipation, and, yes, fear of the back-to-school rituals are palpable across neighborhoods. No matter what your child’s actual school start date is, the moments of preparation leading up to that day have become an annual tradition for most families with school-age children. It’s fun, it’s hectic, and our kids can be both ready – and nervous – to once again enter the hallowed halls of our schools.

For our JS families, this can also be a time filled with additional anxiety: will my child’s teacher be the right fit for my child’s needs? Will my child get the right level of help? How can I possibly explain everything about my child to the education team? These questions – and likely hundreds of others – keep us parents up at night for the weeks leading up to the first day of school.

For our family, I shared what we give to Isabella’s education team at the beginning of each school year, even if the team has known her well over the past several years. We do this because Isabella is non-verbal, and we want to be sure to capture things for them that Isabella may not be able to quickly articulate for herself during the first few weeks of the new school year.

We call it the “I am Isabella” sheet, and it is a simple one-page document, with a large photo of her centered at the top. Underneath the photo, there are various sentences that describe Isabella: her likes, her dislikes, her interests, her activities. In total, there are roughly 20-30 sentences so that it fills the space beneath the photograph. These are not long sentences; rather, along the lines of: “I love to swim”, “I ride horses every week”, “My favorite dessert is pumpkin pie”, and so on. Buried deep within those sentences, Isabella does remind everyone that “I have Joubert syndrome”, or “I need a hug sometimes”.

We chose not to introduce Joubert syndrome in the first sentence because that would detract from who Isabella really is, along with her hopes and her dreams, her anxieties, and her fears. Each year, the teachers and IEP team have come to anticipate the newest version of “I am Isabella”, and many have it posted in their rooms or on their desks.

This is a simple, creative, and effective way to introduce and highlight your child to your education team, and draw attention to their skills, their strengths, and their needs that acknowledges them as a whole person, and not just as a child with a diagnosis.

This sort of document can be formatted in a variety of ways. If you would like to make one for your child you can keep it simple like mine, or try using this customizable template that has been created by the JSRDF. Click here to download the MS Word file. Once you have downloaded and opened it, right click on the happy face and select “change picture” to swap in a photo of your child, and then fill in the other fields, or reconfigure them to suit your needs.

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