For many parents, raising a child in today’s society is wrought with its own set of challenges. You worry about their health, their safety, their education, and their ability to become productive members of society. However, when your child has epilepsy and autism, the challenges become even greater and your worries seem to increase a thousand fold.
Noah had his first Grand Mal seizure when my wife was dropping him off at daycare. I’ve never been so afraid in my life. Fortunately, the staff at the daycare facility were able to calm my wife, protect Noah, and call an ambulance. Their kindness and quick thinking in this difficult situation helped more than mere words can even express. But now we were faced with a new challenge. Noah had already been diagnosed with autism and wasn’t very verbal. Now he was facing a life with epilepsy. Much like his autism, it was something that we never expected for him to experience.
Fortunately for us, our pediatrician connected us with Dr. Michael Newmark, a neurologist with an impeccable resume when it comes to treating individuals with epilepsy. He along with his staff were able to not only educate us more about epilepsy and the challenges that it presents but also provide us with the resources we needed to aid Noah in his fight with epilepsy. Finding the right medication and the appropriate dosage became a challenge in itself. We also have to alert his teachers and the medical staff at his school about his condition in case he has a seizure at school (which has happened on several occasions). He also has to deal with several visits with Dr. Newmark throughout the year, constant bloodwork, and taking his proper dosage of medication.
In spite of all the challenges, it’s not all bad. Especially, if you have the right resources in place. One of the resources we have been able to cultivate is with the Epilepsy Foundation of Texas. Through them we have been able to get Noah involved in many different activities. His favorite is Camp Spike-N-Wave. He looks forward to it every year. Although I was as nervous as a long tailed cat in a room full of rocking chairs about Noah going away for a week, he thrived and blossomed. He thanks us every year for taking him to Camp. We miss him but seeing all of the wonderful pictures that they post of the kids having fun just makes my family so happy for him that he has an opportunity to be around other kids that face the same challenges that he does.
So for any parent that has a child that has been recently diagnosed with epilepsy, I would tell them to cultivate their resources, find a neurologist who your child is comfortable being around, educate yourself about epilepsy, and realize that it’s not the end of the world for your child. Your child can lead a productive life. I see Noah and how he attacks everything with his whole heart and I realize how blessed I am to be his parent. He motivates me every day to be a better person because if he can take on his challenges and still smile, then why can’t I?
