By Megan Kaump
A diagnosis of GBS, CIDP, or variants is frightening and devastating for anyone, but when a child is diagnosed it adds a very different set of emotions and experiences. It is heart- breaking to see your child go through such challenges and there is the added component of how the child’s schooling will be managed in addition to their possible hospitalization, rehab, and recovery.
In serious cases there can be lengthy hospital stays and this can seriously impact the child’s ability to attend school and stay current with their schoolwork. To complicate matters further, it is quite likely that your child’s teacher/principal/guidance counselor will not be familiar with these diagnoses. In this case, education of the relevant school staff is critical in the support of your child both during his/her absence and upon their return. Sending these staff-members links to the GBS-CIDP Foundation’s website (right here! www.gbs-cidp.org) and directing them to your child’s particular diagnosis is key. YouTube videos that share the stories of actual patients are extremely helpful and informative as well.
My daughter was 15 and a freshman in high school when she was diagnosed (it was the largest high school in the state with over 4000 students) and neither the principal nor the guidance counselor had ever heard of Guillain-Barre’ Syndrome. After watching a YouTube video of a patient’s story with GBS I received a response from her counselor saying, “I am speechless.” As parents we can be devastated and frightened for what our child is going through but we also face the additional task of being our child’s advocate at school. Helping those key school personnel to gain a better understanding of what your child is experiencing and giving them a glimpse into what their recovery/and future needs will be is critical to getting your child the resources and support that he/she needs.
If your child is in ICU or otherwise incapable of doing schoolwork during their absence there will be lost school days. Check with your child’s principal/guidance counselor about what options there are to make up this work. In our district one hour of tutoring was offered to her for every day of school that she missed while she was in the acute phase of GBS which we used to complete one of her classes over the summer. Once she arrived at inpatient rehab she was officially enrolled in the school district of the rehab hospital and received limited daily instruction that allowed her to complete her English requirement. Physical Education can be a required class that would otherwise need to be repeated upon your child’s return to school. Check with your child’s school to see if Physical and Occupational Therapy hours can be used for Physical Education requirements.
Oftentimes a diagnosis of GBS, CIDP, or a variant will require ongoing therapy, IVIG treatments, or doctors’ appointments, all of which can disrupt your child’s school attendance even further. Communication and the education of the key personnel at your child’s school will be crucial as your child continues with their education with as little interruption as possible. Helping the school help your child will benefit all involved.Need more resources? Join our community!