The Parents’ IEP Journey: The Ups and Downs. The Ins and Outs.

“If you’re new to the Individualized Education Program (IEP) process, you may wonder what your role is and how much you can offer. Remember this: You may not be an expert about special education, but you are an expert about your child.

It’s not always easy to speak up about what your child needs. Understanding the special education services available to your child can boost your confidence. This may take time. But gathering information and asking questions along the way can yield big dividends for your child.” (Stanberry, Kristin, “Playing a Role in the IEP Process”)

Here at Islands of Brilliance (IOB), we have the great privilege of working not only with amazing students but phenomenal parents. Parents come to us at all stages of their child’s journey. Some are veteran parents or parents that have had multiple children go through the IEP process. While others are brand new, having no idea what will happen next, but know they want what’s best for their child.

Whatever stage you are in of your child’s IEP journey and however you feel about that journey, the staff at Islands of Brilliance wants you to know you are not alone. It truly takes a village and Islands has been honored to be a part of many families' 'villages’ as they navigate the world of special education.

One of our greatest assets at Islands is our families. We asked seven of our IOB parents to speak to this topic and share their individual experiences with navigating the world of IEPs, things they wish they had known and how they view their role as part of the IEP team. We could not be more grateful for their candid insights and hope you find answers, or at least comfort, in learning their experiences.

Q: What has been your role as a parent on the team? What challenges have you had with the IEP process?

Parent 1: “My role has been that of an observer and advocate; I know my daughter the best and what works. I keep an eye out for what’s happening at school. I make sure that the IEP makes sense and that things are ticking along. I communicate what the hopes are that we have in all areas–socially, motorically, academically. I’ve learned to challenge the system and hold people accountable. I got testing data and I questioned it since I didn’t think it was reliable or a good way to describe what was happening. I also got service minutes, but I don’t feel like it painted the picture for me. So it always comes back to knowing your child and staying on top of their services.”

Parent 2: “The biggest challenge for us has been to keep him engaged and learning. As the years progressed, I realized it took so much on my part to make him feel good at school and learning wasn’t happening. I have done a lot of advocating. Biggest obstacle–tough to identify– may be the red tape of executing the IEP since they were always agreeable to what we wanted, but didn’t do it.”

Parent 3: “I’m a large participant and contributor to the IEP and my role has grown as the kids have grown. I’ve learned to be more active. My voice is most needed when I give input regarding how best my son can meet the goals. Challenges–it’s been pretty smooth for me, but I get frustrated sometimes when there’s less participation from the general ed teachers. I wish they would come to the IEP meetings {in high school}. They need to understand what works for my son. IEPs could be much more successful when the reg ed teachers come to the meetings.”

Q: What does being an advocate for your child mean to you?

Parent 1: “For me, being an advocate for my child means being observant of where she is at and where she should be and pushing for those things to happen. Being aware of strengths and capitalizing on them.”

Parent 2: “For me, it means being his voice; making sure that they see who he is when he’s happy and inspired and how he learns. Helping them find ways to connect with him to keep him engaged.”

Parent 3: “ I see myself as the quarterback for my son’s IEP team. I am the point person for all the people that he comes into contact with. I make sure they are all working on the same goals– that the work is shared. Sometimes I have to step in and correct the group to make sure that everyone knows what is happening. I tell them about everything he is doing–like his work at IOB. I’ve received great feedback on my approach from his team–they know they can reach out to me for support from home.”

Parent 4: “I’m there since my child is not in a position to advocate for himself yet. I make sure that regular communication is happening. I will also be an advocate for the team and work to get them what they need in order to help them get their needs met. I also look for the supporters in the school. I find my people–I talk to people and learn about what else is possible. (ie: adaptive music example) Sometimes you don’t know what you don’t know and need to lean on people that have walked the path before you to help you navigate the process and resources.”

Q: What areas in the IEP process are confusing to you?

Parent 1: “Early on I was confused by how the team measured success. The document is also so large and it was hard for me to see how I was supposed to contribute to it.”

Parent 2: “I had the same experience. I will now send a document ahead of the IEP to the special ed teacher that has information I would like to see on the IEP and that has given me an opportunity to provide input. “

Parent 3: “With two kids on the spectrum, I have two perspectives. I feel like often the IEP documents were quite generic so I needed the document to represent who my daughter was. I also needed help navigating the IEP process once things changed and I didn’t understand why things changed or how to get help in understanding it. It took a lot of asking questions.”

Parent 4: “I didn’t understand ESY and how kids get that–I now know that the IEP is a living document and should be highly personalized to my daughter. I wish I had known that from the start.”

Q: Do you feel supported? Do you feel heard?

Parent 1: “I do feel supported, now. We had to leave our first school district because we weren’t getting the support we needed for our son. We interviewed people from our new district before we moved there. Our district now is very responsive. I offer suggestions to the team and they listen to those suggestions but it took meeting with multiple districts and staffs ahead of time, sharing our needs and hearing their philosophies and options.

Parent 2: “I make sure that I walk in with gratitude to every meeting and I express that gratitude to my son’s team. It has really changed the way our meetings go and the ability for the team to work together to do what’s best for my son.”

Q: What additional support/resources do you need to feel more empowered in the IEP process?

Parent 1: “A couple of years into Aaron’s schooling, we worked with a lady who advocated for Aaron in IEP meetings. Even in 7th grade, I still want to have that person (but she’s retired now). Having that person there as an expert would be great at any stage.”

Parent 2: “I wish there was a parent support group for IEPs and IEP meetings. When I first started, I had no idea what I was doing. I wish there would have been a mom or dad with experience who could have given me some guidance.”

Parent 3: “We need an IEP bootcamp.”

While we might not have an Islands’ IEP Bootcamp, we do have staff and families that are here to support you and help you along your own IEP journey. Whether you have questions, want to talk, or are looking for additional perspective and insight, you have a support system ready to help. Together, we can make a wonderful team.

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