“It has been four years since my last confession...”

(Those of us who were raised Catholic may appreciate that HaHa)
I hadn’t planned to add to this blog, but I am making any and all efforts to connect with others who might share my current goal to locate or develop a shared housing model for my 22 year old Cesare.  I am stubbornly not a social media participant, but hope through connections with you, and on the Epilepsy website, I might find other parents or young adults who might be interested in a a similar idea.

Cesare is all grown up now!  In the intervening years since I last posted, Ces did receive the RNS implant and it has significantly improved his seizure frequency and intensity.  The docs at NYU acquiesced because Cesare had his first status epilepticus in 2017 that rocked our world.  They were kindly willing to try anything at that point.  Still bright and conversant, Ces continues to need close monitoring, especially at night, where he has had more than one emergent episode in the last six months.

I’m retiring in a year and a half and Cesare’s future has never been more in focus for me.  Cesare cannot live alone; in addition to break through seizures his processing and judgement continue to be impaired by a bucket of meds each day- and of course, whatever damage epilepsy has done to him.
Homes for the developmentally disabled may not offer him a similar peer group, but most importantly there is no mechanism for 24 hour medical monitoring.  Believe me, I’ve checked.  Even in Assisted Living, which is really not for the young, two hour wellness checks seem to be the norm.

My dream housing for Ces would be a home with four or so bedrooms, communal living and dining and a central monitoring hub staffed at night with a rotating roster of parents, family members or hirees who would have access to each resident through video observation or pulse-oximeter monitoring- whatever is needed.  During the day, our kids would hopefully have supported employment, or activities of their own choosing.  Perhaps a support family member, or other would be available each day to assist if necessary.  Perhaps there is a fifth bedroom and a support person loves there permanently, or takes a week per month.

My dream, dream housing for Ces would accommodate MY dream housing and sit within spittin’ distance of a beach, have easy access to public transportation and urban activities and services unknown to us in rural New York- and NO SNOW or ice to decrease my risk of falling and stuff now that I’m, officially, “aging”.  San Diego?

I’ve read many anxious posts from parents and young adults pondering this same dilemma.  I hope there are enough of us out there to create a living space that will endure for our loved ones.