Accessing the need for Special Education is a vital part of many children’s lives who are diagnosed with Gorlin Syndrome and not an area that is often openly discussed. Given the wide variety of manifestations of GS, this can vary for each depending on the child’s needs, type of mutation and time of diagnosis.
For Nolan, the journey to special education began prior to his diagnosis of GS. He was delayed with gross motor skills, fine motor skills, articulation for speech and had difficulty swallowing. We gained access to Early Support Services and Nolan had an Individualized Family Service Plan (IFSP) in place beginning at 4 months of age. This service plan included our goals as a family and our goals for Nolan. After his diagnosis at 2 months and nearly 2.5 years in early intervention services, the referral process to the public education system began. The regulations can vary state to state and it is important to know your rights as a parent and caregiver! The referral and evaluation process is lengthy and timing is important. If your child qualifies for special education, the school district is required to implement an Individualized Education Plan (IEP) by the child’s 3rd birthday. Nolan now has an IEP and an Individualized Health Care Plan (IHCP), receives all of these therapies in school, and accesses the general curriculum like any other child. As working parents, transportation can also be a challenge! You have the right to access safe transportation for your child to the public school system as well. Pictured here is Nolan on his first day! At the mere age of 3, he is riding on a school bus with sage transport that includes a 5 point harness!
If your child is not referred by the age of 3, a parent can refer their child at an age. If your child does not require specially designed instruction, your child should have a 504 Plan for Medical or IHCP that includes use of sunscreen and sun protective clothing along with any other medical based needs they may have. For more information about your parental rights for your child with GS, please contact the GSA to be connected to someone who can assist! This is a difficult area to navigate and it’s ok to ask for help!