My son had a hemispherectomy as a toddler to stop his seizures, and now, as a young adult, we are navigating the world of adulthood together. He graduated from high school two years ago, and we’ve been trying to figure out what’s next. It hasn’t been easy. Finding employment opportunities for him has been a challenge.

After a lot of searching, he was able to volunteer at a local theatre, which he really enjoyed. But volunteering wasn’t enough. We wanted something more for him. After advocating for him and working with our state’s vocational rehabilitation agency, we were finally able to get him set up with a paid Student Work Experience at the theatre. He’s also working with an on-the-job coach provided by our vocational rehabilitation agency.

This has been a big step for him, but we know there are still obstacles ahead.

Challenges After Epilepsy Surgery

My son struggles with auditory processing and executive function. He only uses one hand. He’s had to find work adaptations and accommodations to meet these challenges at his job. He’s learned to send and respond to polite emails, do data entry, organize small events, and deal with demanding customers.

These tasks have tested his skills, but he’s growing and learning through the experience. Despite the challenges, he absolutely loves it, and that’s what matters most.

Many adults who had epilepsy surgery as children face unique challenges in the workplace. This could include changes in how they think, move, or handle emotions after surgery. These challenges can make it harder to find and keep a job. However, with the right support, people can succeed in their careers.

Resources like vocational training, workplace accommodations, and understanding employers can make a big difference. These tools help individuals reach their full potential.

Employment Data for People with Disabilities

The numbers show the struggle. As of September 2024, only about 1 in 4 people with disabilities (24.5%) are working or looking for work. In comparison, about 2 out of 3 people without disabilities (68.1%) are in the workforce. The unemployment rate for people with disabilities is 7.2%. This is much higher than the unemployment rate for people without disabilities, which is 3.7%.

Celebrating National Disability Employment Awareness Month

October is National Disability Employment Awareness Month. It’s a time to celebrate the achievements of individuals with disabilities in the workplace. This year’s theme, “Access to Good Jobs for All,” is about creating more opportunities for workers with disabilities to thrive.

Now is a great time to explore how you or your loved one can find meaningful employment, especially as more employers focus on accessibility.

Tips for Finding Employment

• Focus on strengths: Identify your skills and abilities. Look for jobs that match your interests and what you’re good at.
• Know your rights: The Americans with Disabilities Act provides workplace protections. It ensures you can ask for accommodations, like flexible hours or special equipment, to do your job.
• Seek out resources: Programs like vocational rehabilitation and community employment services can help you find work that fits your needs.

Updated Employment Resources

I’m excited to share that our resource guide, The (Almost) Everything List, has been updated with new employment resources. It now includes more information on job training and vocational services. These updates are designed to help individuals with disabilities succeed in the workforce.

Looking Ahead

This March, I’ll present with attorney Lisa Hernandez at the Council of Parent Attorneys and Advocates (COPAA) 2025 Annual Conference. Our session, Preparing Students for Adulthood: A Transition Roadmap Through IDEA and Beyond, will provide legal and educational tools to support students with IEPs.

We’ll examine the steps to transition from high school to adulthood, including education, job training, employment, independent living, healthcare access, and community participation. We’ll also discuss the Americans with Disabilities Act (ADA), reasonable accommodations, and how to advocate for students after they leave high school.

Transition planning is essential because every child eventually becomes an adult. Under the Individuals with Disabilities in Education Improvement Act (IDEA), students with disabilities are entitled to an education that prepares them for life as adults. However, when they leave high school, the protections of IDEA end. They must be ready to advocate for themselves in new environments with different rules and expectations.

Also, in the new year, The Alliance plans to collaborate with several rare epilepsy organizations on a webinar about our Transition Checklist, which was created as part of the Adult Transition Taskforce of the Rare Epilepsy Network (REN). Sign up for our newsletter to get the latest updates on dates and registration.

Understanding the Transition from High School to Adulthood

Even if you can’t attend the COPAA conference, we have plenty of resources available!

Check out our transition course, Education Transition for Children with Neurological Conditions. This course supplements our 100+ page guide, Educational Transition After Epilepsy Surgery. It includes over ten hours of training modules covering all aspects of transition. In this series, you will find the steps you need to take to build your child’s education transition plan, your child’s rights in the process, and resources to help you along the way. We also cover the transition to adult healthcare, future planning, decision-making, and financial support, among other topics.

The entire point of school is to prepare your child for adulthood, which includes employment. Our course and guide can help parents and youth prepare for the big changes that come as they transition out of school and into the adult world.

Let’s work together to ensure that everyone, including those who have had epilepsy surgery, has the tools they need to succeed in the workforce.