I am the mother of 3 children, two of them school age. One of them has an IEP. I know, first-hand, the difficulties that parents of children with special needs have navigating the school system. When I was new to the special education world, I found that while there were many excellent resources to help me through the process, I was missing the input of other parents who had stood where I was. As I gained more experience, I wanted to help other parents through the process and ran for and was elected to the School Leadership Team (SLT) in the seat designated for a parent of a student with an IEP. The role of a parent representative on the SLT is to advocate for children with IEPs so that the school enacts policies that are inclusive of this group of students. To access the voices and concerns of similarly situated parents, and because there was no substitute for learning from the experiences of other parents, I decided to start a network of parents of children with IEPs and special needs.
I spoke to the Assistant Principal in charge of Special Education and explained I wanted to reach out to the families of children with IEPs and special needs in order to hear their concerns and advocate for them at the SLT meetings. Next, I asked the parent coordinator to reach out to those parents, explaining that I was starting a group and asking them to email me if they were interested in participating or learning more. I drafted a letter explaining my plan, which the administration distributed to all the families in the school. The response was terrific. I made sure to ask those parents who responded to invite their friends and any other parents in the school.
I compiled the email addresses from the many parents who had responded to my invitation to join an email blast list. I made it confidential and never disclosed the email addresses or parent names to others in the group list. I used the list to alert parents to events and workshops I’d received notices about from other email services I subscribed to, such as Resources for Children with Special Needs (now INCLUDEnyc), Advocates for Children (AFC), Parents for Inclusive Education (PIE), and the NYC DOE’s list of Special Education workshops. Parents also sent me questions about specific issues, and I would reach out to the email list to ask if anyone would be able to help out. In some cases, the answers were simple enough for me to forward to the group; in other instances, the questions and answers were more complicated. If both the parent asking the question and the one who answered agreed, I made an email connection. This was to make sure that we didn’t breach any confidentiality issues regarding a particular child’s IEP.
After some time, we had a meeting outside of school for parents who felt comfortable sharing their stories and were looking for support. We held the meeting at a restaurant, which was a great venue to discuss our children away from school. We talked about the issues we had and how we worked through them, and shared resources to help each other navigate the often complicated world of special education.
After the meeting, people with kids in similar age groups exchanged contact information and some formed more of a mentor/mentee relationship. For instance, parents who were going through the middle school application process offered to help those who were getting ready to go through that process the following year, and parents with kids in kindergarten found others to help them decipher what it meant to have a child with an IEP in an elementary public school.
The email list proved to be very valuable. It was an effective way to push out information to parents but it also helped connect parents who were able to help each other. The format of having an anonymous email blast made everyone comfortable and it provided a safe medium to communicate concerns or ask questions.