A Father, His Family, and His Special Needs Son

 One of my church leaders once said that the most important word in all the scriptures is the word "Remember."  On the surface, this seems like a fairly trivial word, but looking more closely, I am convinced he is correct. Raising four children is difficult.  I don't know a parent out there who can claim that raising so many children, regardless of special needs, is a simple task.  The special needs Samuel has just adds to it.  On the best of days, the additional work with Samuel involves cleaning up his diaper, getting him to take his medicine twice a day (he has 24 pills he has to take twice), hooking him up to his vagal nerve stimulator twice a day for 25 minutes each time, hooking him up to his neurofeedback every other day, a process which involves cleaning his hair, putting an adhesive gel on his head, sticking a series of electrodes on his head, then having him watch a computer screen in complete silence (which, as you can imagine, is pretty tricky with t...

  My mom used to always say “It’s amazing what someone can do when they have to.” My Son Samuel is a superhero.   He was diagnosed with Epilepsy when he was three years old.   There are five major types of seizures someone with epilepsy will typically have that range from them looking like they are just staring absentmindedly, all the way to a Tonic-clonic seizure, more commonly known as a grand-mal seizure, where they are full on convulsing on the ground.   Samuel experiences every one of these five types, sometimes all in one day.   He can have as few as six seizures one week, and then as many as 400 seizures the following week, and has even gone months at a time having one continuous seizure.   We have tried every natural and traditional intervention we have ever found, with nothing that has made a lasting impact on this condition.   In other words, this is something Samuel has to go through. Samuel is not a superhero because he endures seizures...

There’s a leader in my Church who once said “You can have what you want, or you can have something better.” It was the spring, the temperature outside was perfect, and some dear friends of ours had invited us and our family to an activity where our children would do a bunch of fun activities to experience a little bit of Ukrainian culture.  I had been very excited about this event for some time leading up to it, and the day had finally come. I spent the entire event in my minivan with Samuel throwing one of his classic temper tantrums in the back seat.                 Instead of watching my children learn Ukrainian words, eat Ukrainian food, and listen to Ukrainian music, all I experienced was my screaming 7-year-old.  This was one of many, many experiences where we just couldn’t participate in an event the way we were hoping.  Once again, the crowds, the noise, and the atmosphe...

  Even though he is eight years old, my son Samuel, who has autism and epilepsy, needs a baby monitor beside him through the night.   This monitor is not here to alert us to when he wakes up, but to alert us to when he has a grand mal seizure, and is in danger of choking to death on his own saliva and bile.   My job, when I hear a noise akin to the Nazgul from Lord of the Rings on the monitor, is to jump out of bed, run to his room, and make sure he is propped up or on his side and that his mouth is clear of anything he can choke on.   I then hold my convulsing son until the seizure has passed.   Typically, these only happen every month or two, but they have begun getting more frequent.   Our 6-year old, Jonathan, was born with a weak respiratory system.   The day he was born, his lungs needed to be sucked out and he had trouble breathing.   Every doctor we’ve seen, traditional and holistic, has tried to tell us that his throat and lungs are fin...