As an epileptic I had my first seizure when I was 2 and was officially diagnosed with epilepsy in the 8th grade. I also have a almost 2 year old daughter who is prone to febrile seizures. I pray she is never diagnosed with epilepsy. So as you can see not only was I once the child that needed support but I also am a parent that supports a child that is prone to seizures and because of that I am in the unique position of giving you tips from someone who has experienced both sides of the coin. So if you are someone who is looking for some tips to supporting a child in way that will make a difference in their lives then this article is for you.
- Find a balance between safety and play.
As parents, we want to protect our children from all the bad things in life. It’s just a natural instinct and has aided in human survival for thousands of years, but when you have a child with a seizure disorder such as epilepsy it can be easy to fall into the habit of overprotecting your child. We begin to envision all these nightmare scenarios of the worst times they could have a seizure and something horrible happening. In response to this, we may begin to shelter them from the world and begin saying no
Protecting them is all well and good, but not if prevents our child from learning and experiencing the world in ways they will need to experience to survive on their own. Instead of telling them no to participating in sports because they might have seizure come up with a safety plan that will allow them to participate. You could talk to an adult who runs whatever program and tell them what they need to know including what to do if your child were to have a seizure. You could talk to one of their friends and their friends parents who do many of the same activities as your child and make sure they know what to do. It becomes easier to tell your child yes when you aren’t the only one who knows what to do. By taking the time to educate a select few you can trust, your burden becomes just a bit lighter and you won’t have to worry so much.
An example from my own life, in high school, even though I was toxic on medication much of the time and struggling to find control with my epilepsy I still asked my parents if I could take martial arts. I have always been grateful they didn’t hesitate to help me find a good school to take lessons. It must have been a scary thing to agree to,
2. Stay in contact with your child’s educators.
Having epilepsy can make your child’s education experience very challenging. Not just because they might have a seizure at school but also because seizures and medications can make it very difficult to learn. As a child, I believed I was stupid for years because no matter how much I studied I never seemed able to grasp the concepts taught in class. I really struggled to get any grade above a D. Unfortunately, the school system I was in at that point of time didn’t have great resources for tutoring and other programs. I often didn’t qualify for that extra help because I was smart but my medication made retaining any new information extremely difficult. So my parents were often meeting with teachers and trying to figure out how to help me do better in school.
Fortunately, that school system vastly improved after I graduated. Many students who needed help had better access to resources for the help they needed. Most teachers will do what they can to make sure your child gets some sort of help. Make sure you are talking to your teachers so that you can work together and come up with some sort of game plan to help your child thrive in school. It’s also good to teach them how to help your child should they have a seizure while in their care. If your child’s school doesn’t have the proper resources to help your child you may have to hire a tutor or be prepared to spend time helping them study or do homework. You may be able to find a way to teach your child that helps.
3. Don’t be afraid to question doctors
It’s important to really work with your doctor to find the best possible treatment for your child, but sometimes doctors suck. Let’s face it we all have had at least one experience with a bad doctor. Hopefully, that experience didn’t cause any real damage in the long term. So it’s important that you find a fantastic doctor that listens to you.
A good doctor knows that it’s important to listen to the parents and child to find the best treatment. The doctor may be the expert on medical treatments but you are the expert on your child and every child is different. A good doctor will also take the time to thoroughly explain any treatments and the why behind them and any possible side effects. Ideally if you can find a doctor that explains so well that you rarely have a question that is best. Should you have questions a good doctor will answer them without irritation but with empathy and understanding.
Beware of doctor’s who question what you have to say. They insinuate that your child may be faking. Who won’t take anything you have into consideration. If a doctor isn’t willing to work with you try to find another one that will listen and work with you as a partner in your child’s medical care.
4. Be Your Child’s Safe Place
Struggling with epilepsy can cause a lot of emotional distress on your child. It can make then unsure and it can be easy for them to lose motivation. It is also common for those with epilepsy to struggle with depression and other mood disorders. So your child may need subtle reminders now and again that you are always there for them. As a child, I often tried to tough it out alone because I didn’t want to burden my parents with my problems. I did this in spite of them always being there for me. It can be hard for a child to open up to mom and dad.
So just go that extra mile to show your support in whatever way you can. It might mean leaving small notes with their stuff saying things like: ” You can do this!” or “I believe in you!” and other corny sayings. It may seem corny and they may even roll their eyes but it sends them a message that you are there for them. It can be as simple taking five minutes each day to just spend time and talk with your child. Remind them you aren’t just mom but a person that loves hanging out with them. While it isn’t always a good thing to be your child’s friend there are other times when they need you to be a friend. Practice knowing when to be the mom and when to just be a friend listening. It can be hard to master this skill but it’s worth doing.
Helping your child navigate the world with seizures can be very difficult and challenging. Every child is different and how a parent does this will vary from child to child. Being your child’s cheerleader and not letting them give up when it gets really hard is a tough job sometimes, but if you stick it out for them. Your child has every chance at a happy, full, healthy, and independent life. You just have to help them fight for it!