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Personal stories

The Storm that puts Life on Pause

 

Every parent of a child with special needs has infinite stories to tell you about the challenges their loved one faces each single day.   As a parent of an adult with Autism and Epilepsy, I am not any different.

Rafael (Raf) was diagnosed with Autism at a very early age.  In fact, he was only 18 months old. Back in those days, services and therapies to help children with Autism were hardly available throughout Canada.   As firm believers in early intervention and in Applied Behavior Analysis methods, my husband and I  did what we thought was best and relocated to New Jersey, so that Raf could receive state of the art evidence- based treatments for the delays attributed to ASD.  

 

Slowly but surely, we learned to accept the ASD diagnosis but never stopped providing Raf with every therapy and treatment method available.   As if ASD was not enough, a second condition, out of nowhere sprung up when he turned 8 years of age.    Epilepsy – a most horrific brain disorder that causes recurring seizures.  Living with Autism may be difficult but living with an uncontrollable seizure disorder is unbearable.

 

Research suggests that the comorbidity of autism and epilepsy is frequent: approximately 25% of individuals with autism have epilepsy. This high rate of comorbidity is thought to be caused by genetic and microstructural brain differences.  

 

If I told you about the extensive research I undertook both here in Canada, in the U.S. and abroad trying to find what could control Raf’s seizures, I could fill many books.  I can’t begin to tell you about the dozen or so drugs that didn’t work and about their horrendous side effects.  One of them being “acute chronic insomnia”. Nights when Raf can’t fall asleep until the next day, considering ourselves lucky when he does sleep 4 -5 hours.  Can’t recall the countless hospitalizations, the merciless and relentless seizure cycles that put Raf’s life on pause, robbing him of his potential, adding to his suffering and to ours.

 

Needless to also mention the limits that this isolating condition imposes unjustly on his quality of life, as just about anything can bring on a seizure. Some potential triggers: not being able to watch numerous movies (at home or in a theatre) due to scenes with lightning flashes and electrocution effects, not being able to attend concerts because of flashing fiber wands all around, missing bowling parties because they take place in the dark when everyone else is enjoying glow bowling, having to avoid exposure to direct sunlight on beautiful summer days, having to stay home on hot or windy days and always having to avoid workouts that raise the heartrate.  

 

Yet, there are days and even months when the Lord in his mercy, allows Raf to thrive. Days where the weather is right.  Days when the cycle of seizures subsides and he can finally enjoy what he loves most – skating, rollerblading, biking, going for walks – living life !.    And as he wins some battles along the way, we continuously  pray for the day that science will advance enough so as to  provide Raf with what he needs to win the war on epilepsy, once and for all.

 

Simy I.

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