A Dad's Journey

Father of Autistic Twins Speaks Out

Browsing Posts published in June, 2011

Spent a fair amount of time today trying to mitigate the trials and tribulations of our 9 hour car ride from New Jersey to the Outer Banks of North Carolina.

Granted, the trip is still six weeks away, but Rommell could take lessons from my wife and I on preparation.

Our current plan is to split the trip into two days.  The recommended course of action is to depart rediculously early (around 6am) to get to your beach house by about 5pm, leaving an hour or two for meals.  But you can still expect to spend a minimum of 9 hours in the car and that’s with minimum traffic for the final portion of the trip.

Apparently, there is no escaping the traffic jam into the Outer Banks on a Saturday unless you go over the bridge before Noon or after 5pm. 

So we’ve decided to get close (Night One destination TBD) and then plan our final assault from there.  We might try to head out early and then just hit the beach until the house is ready or just stay at the nearby hotel until they kick us out and perhaps avoid the worst of the summer madness.

I know this plan will be revised several times.  But at least we’re bound and determined to spend a true family vacation together.

Autism be damned!

I’m excited by the progress that Seaside Therapeutic is making with its new drug for autism (SPX209).  While I don’t expect this to be a panacea, it would be wonderful to have a drug that might actually present some neurological benefits without the downside of current drugs on the market:

“There are currently no FDA-approved therapeutics to treat the core symptoms of autism spectrum disorders, creating a vast unmet need for the millions of individuals and their families affected by this condition in the US and EU alone,” Seaside CEO Dr. Randall L. Carpenter said in a statement.

“In our open-label Phase 2a study of STX209, we observed significant improvements in social impairment – a core symptom of autism spectrum disorders – including symptoms such as preference to be alone, being withdrawn or isolated, and lack of social reactivity. We are spearheading late-stage development of a drug candidate that has the potential to change the treatment paradigm for autism spectrum disorders – addressing core symptoms – and are truly excited about the prospect of helping patients and their families achieve an improved quality of life.”

It probably has already happened, but as they say, they just didn’t diagnose him/her at the time. 

But as more and more kids enter the spectrum and find their bliss in the arts or sports, I wonder when we’ll see an Olympic Javelin champ who is clearly autistic.  After all, autistic kids certainly excel at routines and doing the same things over and over again. 

I imagine the day is coming soon.