Teens and young adults with epilepsy
The Epilepsy Foundation of Delaware recognizes the unique needs of young adults diagnosed with epilepsy in our community. We aim to provide our young adults with opportunities to socialize, educate, volunteer, and gain independence.
Information for Teens
Ever feel like you don’t want to explain your seizures to their classmates, teachers, coaches, or friends? Or you try, but they just don’t seem to understand? Not knowing how each person will react can add to the complication. Trying to balance it with school, homework, sports, activities, family responsibilities and friendships can be hard enough. Then there’s that “never knowing” fear of when the next seizure could happen. Sometimes it hurts, or it’s frustrating, having to deal with epilepsy. It can be even harder to accept if it impacts your ability to get a driver’s license. It can be just plain annoying. Feeling the weight of an epilepsy diagnosis, the impact of medications or surgery, can often seem like too much. But that doesn’t mean you’re alone. We believe that through education and awareness we can help take the burden off your shoulders.
The EFDE can come speak at your school about seizures so that your classmates and teachers have a better understand of epilepsy. Or, we can help connect you with other teens facing similar challenges who can provide friendship and support. We’re available to answer questions you might have about going to college, using public transport or living on your own. Something else you need help with? Even if we can’t help, we can point you in the right direction. Just remember–having epilepsy is nothing to be embarrassed about, even if it sometimes feels that way. Over 2 million Americans have epilepsy just like you.
If you’re a teen with questions about sexual and reproductive health, a great resource is Girls with Nerve. Check out their website for information about talking to your doctor, dating and more.
A Comprehensive Transition Plan: It’s BASIC
B– Be prepared to make changes to the plan, repeat certain steps, or adapt to changes in health or personality. Remember, transition is not an event, it’s a process.
A– Assessments help the planning process. Obtain current social and educational assessments from school, doctors, therapists, community partners.
S– Set goals and write them into plans with your doctor.
I– Identify some individuals who you can invite to assist you with transition planning (teachers, school nurse, doctor, or local advocates)
C– Commit to Success. A successful transition into adult life requires commitment from the whole team.
There are three main goals to keep in mind as you plan for transition: Higher Education or Training,Employment, and Independent Living. Education It is important to remember that, once a student graduates from high school or reaches the age of 21, she/he is no longer entitled to services through the educational system. That young person must apply and meet eligibility requirements for services provided by adult agencies. That means employment offices, social services, and college office of disability programs.
Quality volunteering or employment is essential for a successful transition. However, transitioning to work starts long before the resume and job interview. Young adults who have practiced workplace social skills, received experience or training, and are motivated to succeed are equipped to take this step. It is important to remember that the job won’t find you, you’ll find the job!
Living an independent lifestyle means making decisions, socializing and enjoying life. Everyone deserves the chance to pursue the life they want and transition planning is a crucial first step. Young people who manage their own medical needs are well on the way to taking charge of their health. A young person who can talk with friends and family about their epilepsy is well-informed and a self-advocate.
Information and checklists were adapted from:“Transition to Adult Living in Pennsylvania” PA Department of Health &“Issues & Answers: Exploring Your Possibilites, A guide for Teens and Young Adults with Epilepsy- Epilepsy Foundation of America.
These jobs are primarily found in the restaurant and retail industries. Places like department stores and fast food chains are often a first stop for those looking to gain employment experience. While these jobs might not be a dream job for most people, they are a crucial stepping stone for anyone with little or no work experience.
School-Sponsored Work Experience
High schools and colleges can offer students the opportunity to get real work experience during classes, projects and summer programs. Schools may offer internships, job coaching or credits for volunteer projects. Even if a paycheck isn’t offered, these opportunities are still a great way to get experience and get noticed by those who already work in the places you visit.
As the seasons change, so do the job opportunities! Summer work is a way for students to gain experience while school is out. Outdoor work like lifeguarding, being a camp counselor, or park maintenance are options that will be available. During the holidays, many retail stores, farms and orchards, and restaurants will be interested in hiring extra help for the short jump in business they are expecting. These jobs generally are short term and pay minimum-wage. They offer a great chance to add experience, test out a potential job type and get recognized by those who are already in the field.
The Informal Job Market
There are also job opportunities that are outside of the normal 9-5 workday. Many people let their creative sides do the work by creating and selling their artwork, jewelry, or other crafts. Some take matters into their own hands by offering their skills to their neighborhoods. People who use their knowledge of lawn care, painting, or pets can find satisfying work because the job is also their interest.
Epilepsy Disclosure on the Job
“When do I tell my boss and co-workers about my epilepsy?” “What if I have a seizure at work?” “Am I required to say I have epilepsy during my interview?” “Will my co-workers be able to help me if I have a seizure?” These are questions that are asked all the time. Many people just entering the job market or who are newly diagnosed feel confused about how to talk about epilepsy at work. People may worry that their co-workers won’t understand what a seizure is or what it means to have epilepsy. Everyone’s situation is different, so it will take some time and discussion to decide what the best course of action is for each person.
Information adapted from “Issues & Answers: Exploring Your Possibilities, A Guide for Teens and Young Adults with Epilepsy”Epilepsy Foundation of America.
Living on your Own
The choice to live independently is one that has a lasting effect on an individual’s life. There are many benefits to having a place to call your own. An individual can decide how to decorate, what to cook for dinner, and how to spend their time. It also requires decision making, increased responsibility, and planning. Often, individuals who increase their independence enjoy life and have more self confidence.
Living independently is a huge step and one that has plenty of benefits. If done correctly, individuals can start following their own unique path in life. If done incorrectly, however, it can be a tough road that may result in a return back to dependent living. Serious planning and preparation are necessary in order to make the move as smooth as possible. Below is a quick reference guide to help start the process of living independently. Before starting the search for a new place, a few questions must be answered: What kind of place am I looking for? How much room do I need? Do I need to be on the first floor? Will I have a pet? Do I want a roommate? How much can I afford to pay? Depending on the answers, a person will be looking for different types of places.
- Once a type of living arrangement is decided upon, it is time to start the search. There are a few ways to search for apartments: online searches, newspaper classifieds, or through a rental agent. Online searches can give you an idea of whats out there, while a rental agent can give personal help and tours of your potential places, but they may charge a fee. It is important to note that one should never pay or move in without reading the lease or legal documents carefully!
- Here are a few tips to help make the choice between potential places:
Type your new address into walkscore.com to see how “walkable” your new area is. The website finds all of the available grocery stores, coffee shops, restaurants, and pharmacies near the address.
If you do not drive make sure the apartment is close to public transportation, so you can get to places you need to go that may not be walkable.
If you are using a rental agent, checking out an apartment complex, or just seeing what is around check out yelp.com for customer reviews. This may help you make your decision about a certain location.
- Finally, individuals must sign a lease or other legal documents before moving in to a new location. It is very important that these be carefully reviewed. If there are any questions, the landlord or property manager should be asked. This web article gives some tips.
Important Safety Considerations
Many apartments or homes must be changed a bit to make them safe for people who have seizures. Many of these changes are simple and do not require much time or money. If significant changes are necessary, be sure to contact the landlord or property manager before making the changes. These simple fixes can result in a significant increase in safety.
- First, do a walk-through of the rooms to spot potential dangers. Note any sharp corners on furniture and counters, floors that can get slippery, or places that can get hot like fireplaces and stoves. Also, places with staircases and pools present unique concerns.
- General Precautions– Floors in all rooms should be covered in a dense pile carpet to protect from falling injuries. Also, pad any sharp corners that may be hit during a fall or seizure. Be sure that all walkways are clear of obstacles.
- The Kitchen– Use appliances that have an ability to shut off automatically when not in use. Try and use a microwave oven instead of a stove for cooking. If you are using a stove try and use electric over gas, as well as using the back burners to prevent burns if a seizure occurs. Plastic containers should be substituted for glass that may shatter.
- The Bathroom– Bathroom doors should open outward, not inward in case of a bathroom seizure. Install a shower seat, non-slip strips, and grab bars in the tub. Use shatterproof glass for mirrors and shower doors. Be mindful of water temperature settings to prevent scalding. Keep the bathtub drain flowing freely and always keep tub water levels low.
- Living Alone– Keep doors securely locked if wandering during a seizure is a concern. Avoid climbing on ladders or chairs. Use a “buddy system” and have someone call each day to ensure that contact is frequent. Pre-program important phone numbers. Subscribe to a personal care hotline such as Lifeline in case of emergency. Keep floors clear of clutter. Place barriers in front of any items that may get hot such as stoves and radiators. When using portable heaters or other appliances, make sure that they can’t tip over and have automatic shut-off switches. Using chairs that have arms can be a small but useful way to remain safe during a seizure.