Receiving a disability (intellectual, processing, emotional) diagnosis for your child, you almost feel as though you are being prepped for a battle. You are forced to justify your child’s existence and their right to all of the opportunities available the moment those words are uttered to you. Welcome to your new, never-ending and intimate relationship with the medical world. While the diagnosis can take on a role in your life that is unplanned, unwanted and emotional, you would do it all over again for your child -- because you are their biggest fan, advocate, and supporter.
When I became pregnant 8-and-a-half years ago, my biggest fear for my child would be that she would have a peanut allergy. However, At 13 weeks in utero, my daughter was diagnosed with Down syndrome, and so my battle began. I immersed myself in educating both me and anyone that would listen on everything from terminology, potential medical issues, and character traits. I engaged with other families to learn all that we could about our new normal. Determined to change the world’s perception before she got here, my goal was to protect her from the negative stereotypes and prejudices associated with an extra copy of the 21st chromosome. Upon my daughter’s arrival, we learned she was also affected with an unexpected heart defect and I quickly learned that no matter how much I prepared, I may never have all of the answers.
Navigating the Educational System
School became a whole new challenge in our world. Not only did we endure early medical intervention with countless therapy and doctor appointments, when my daughter turned three, but we also had to navigate the education system and the world of IEPs (Individualized Education Plans). The Individualized Educational Plan (IEP) is a plan or program developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary educational institution receives specialized instruction and related services. The IEP creates an opportunity for teachers, parents, school administrators, related services personnel, and students (when appropriate) to work together to improve educational results for children with disabilities. The IEP is the cornerstone of quality education for each child with a disability. With an IEP, you, the parent, are an active member of your child’s educational team as much as the teacher and the principal are. Your role is to advocate for your child. You are their voice.
In 2017–18, the number of students ages 3–21 who received special education services under the Individuals with Disabilities Education Act (IDEA) was 7.0 million, or 14 percent of all public school students. Among students receiving special education services, 34 percent had specific learning disabilities. https://nces.ed.gov/programs/coe/indicator_cgg.asp
Each year the IEP meeting rolls around and it can be stressful to know what to expect or know if you are doing the job as you should be. The school will provide you with data regarding your child’s strengths and weaknesses that will be used to determine the path your child will take in school. Interventions and goals will be discussed. While you try to do your best, unless you have experience in these instances, you often feel unprepared or lacking in the ability to be an active participant at the table. The one thing to always remember is that you are your child’s biggest advocate, supporter, and fan. You know them better than most.
Advocating for Your Child’s Educational Rights
Recently, we have struggled with a major transition in the school setting. Not unlike my pregnancy, I decided to once again immerse myself in learning all that I can about IEP meetings, goals and ways to help aide in my daughter’s success. That is when I was invited to a workshop regarding advocating at an IEP meeting. The Special Education Inner Circle is a group that allows you to join on a monthly basis and gives you access to videos as well as a social component to speak with other parents, educators and advocates regarding the same struggles and questions.
The best approach I have found that works in an IEP meeting is that of a team willing to collaborate together to discover solution-oriented, goal setting for the best interest of your child’s unique needs. I want the best for my child and I hope that the entire team does as well. In this Inner Circle, you are given very useful tools and approaches used to educate yourself. In addition, you are introduced to a social connection to speak with other parents on what has worked for them in the past.
I have found this program to be a lifesaver. It has allowed me to expand my thinking both of what I want for my child’s life and future, as well as what my expectations of the school are. It has helped me find ways to approach conversations with those that are there to help me and offered guidance for each of us on how to help her. I would highly recommend anyone that has to attend an IEP meeting to give this group a try. You can find them on Facebook as well as through a google search. You can also find the group on this website. https://www.catherinewhitcher.com/
Good luck and happy advocating!
Masters Level Intern
Mother of 3 & Designer Gene Maker