Support: 8 Tips for Parenting Children With Health and Other Challenges
Let's go back in time a moment, shall we?
Growing Up With Epilepsy
I'm 14. One day I'm watching an after-school special with my classmates about a kid with Epilepsy. He has a seizure during a basketball game. Isn't that funny? We're laughing. We don't understand. We all join in on the laughter.
It's a month later and now I'm having a seizure.
A week after that, I'm on medication that makes me fall asleep in the middle of class. I'll be on it for the rest of my life. I'll drop a gallon of milk, because my hands are so unsteady I can't hold it.
My teachers will get mad at me, because my otherwise beautiful handwriting somehow turns sloppy. As it turns out, a gallon of milk isn't all I can't hold. Even a pencil is tough.
I'll break my jaw in three places. I'll fracture my skull. I'll get 42 staples in my head. I'll break off all of my front teeth. My platelets will drop into the below normal range, spotting me with bruises, and we won't know why. I'll have bone marrow aspirations to discover.
I'll lose hair. I'll gain weight. I'll be scared to get pregnant. I'll have high-risk pregnancies. I'll have seizures in an airplane, at the gas tank, and in a parking lot. I'll give speeches and wonder every time what will happen if I fall and whether people will still see me as normal if I do.
But, I don't see all that coming when I'm 14. I can't know it, but even still, I have had a seizure. And suddenly the after school special doesn't seem as funny. I'm not laughing anymore. I work hard to hide my secret, because I don't want the kids laughing at me like we laughed at basketball boy. Because now, I'm that kid with Epilepsy. And I grow tired trying to hide my secret. And finally, I have a seizure that everyone sees and the secret has been uncovered. And, I am horrified and relieved all at once, even as I struggle to learn that everyone has their things and that there is no such thing as normal.
Parenting Children With Health or Other Challenges
Back to current time. You're the parent. You have a challenged child. Meaning that your child has Epilepsy or Diabetes or is on the Autism Spectrum or has Schizophrenia or Food Allergies or Low Self-Esteem or a mixture of other challenges. You want to raise him or her with confidence, with the opportunities to enjoy a happy childhood without worrying about such seemingly adult challenges like health or mental health or other such issues. You want to help navigate through the symptoms. You are scared. You don't have all the answers. What do you do? Where do you go for help?
While I can only speak from the point of view of someone who has epilepsy and not the parent of a child with epilepsy, I have had many conversations with my mom about how she parented me.
My 10 year-old son suffers from anxiety, so now it is my turn to take all of the lessons I learned from her and to apply them as a parent. Here are some things I learned from my mom that I hope will also help you:
- Increase understanding. First and foremost, learn everything you can about your child's diagnosis. This could take years, but search high and low, online and offline, to get in the know!
- Find support. Whether you join a support group in your community or find one online, make sure to reach out to others with children in similar circumstances. Not only are other parents great resources for information, they will help you feel that you aren't alone in your parenting struggles.
- Set realistic expectations. Once you are armed with information, help your child learn to understand his or her challenges. Do this in a factual way. For example: "You have epilepsy. If you don't take your medication, you will most likely have a seizure. If you do take your medication, you may experience some side effects, but they won't be as bad as having a seizure."
- Learn to live within limitations. I found that I really wanted to be in control of my health, so learning what I could and couldn't control was really important to me. In my situation, I could control whether or not I took my medication. But I couldn't control whether I had a seizure. However, the risks of me having one almost 100 percent decreased if I took my medication. So, it was up to me! Knowing that helped me feel in control and like I had options.
Note: I pushed every limit as a teen. I skipped taking my meds. I lived with a lot of stress. I stayed out all night in college, etc. And, I reaped the consequences every time until I finally said: "I HATE having seizures. I'd rather live within my limitations than have one." So, if your child is pushing limits, consider it part of their growth process of learning to live within their limitations. Ultimately, it is up to them to decide the lifestyle they want to have and to choose accordingly.
- Don't compare. Every person, whether you can detect it or not, lives with challenges. Not everyone has health issues. You just can't compare your challenges as a parent to the challenges other parents face. So don't compare! You'll be miserable every time.
- Give opportunities for growth. If I could only give huge kudos to my mom for one thing, it would be for her ability to help me feel like I could do anything, even when some things were more difficult for me. If your child is challenged, regardless of how severe, find opportunities that make sense for him or her and offer ways to help achieve success in those areas.
My mom was really scared to let me travel alone, but I really wanted to be a foreign exchange student. She got a lot of push back from other parents, including family members, when she encouraged me to interview for a spot. But I never knew that until I was an adult. All I knew as a teenager was that she helped me prepare for the interview and was ecstatic when I got accepted into the program. My dad was the same. She always made me feel that I should reach for the stars. If I worked hard enough or was resourceful enough, she thought I could achieve anything. It didn't mean she wasn't scared. Or didn't lose sleep. But, I grew up thinking I could do anything and eventually forgot epilepsy may get in my way.
Note: I did have a seizure while I was a foreign exchange student and my mom's worst nightmare came true. But, it taught us all that I could handle my health challenges on my own, which was an important lesson for a 17-year old to learn (and the parent of a 17-year old)!
- Get help! Some challenges are far more severe and difficult to deal with than something like epilepsy. I have a brother with schizophrenia and I always think that my epilepsy prepared my mom for that much bigger challenge and yet if you ask her, she'll tell you that nothing prepares you for something like Schizophrenia or mental illness in general.If you are feeling hopeless or don't know what to do, reach out to someone with more information. Talk to a doctor or other parents about ways to get help and then seek out that help. Information is the first step, because knowledge is power.
- Have hope! This is so easy to say, especially in tough moments. But, do whatever you can to build a reservoir of hope. Recognize that you may have to go through a grieving process. Come to terms that this situation may be long term. Then, have hope, knowing that with information, support, and going through the other steps listed above will help you to do everything you can to influence your child's life. Ultimately, the health struggles he or she faces will be outside of your control, but how you deal with them and in turn, how you teach your child to approach them and manage them, is completely within your influence.
I am now 41 years old. I have two happy and healthy boys. I am married to a fantastically funny guy! I enjoy life by eating large amounts of cheese, dancing like crazy whenever I get the chance, traveling to the ends of the earth and back, and (yes!) giving speeches even though I am nervous I may have a seizure. And life is good! Now... to help my son face his challenges with anxiety so he, too, can feel that life is good!
What tips do you have for raising kids with health or other challenges? How do you help them enjoy life in spite of their challenges?
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