“This Brain Awareness Week, we share Randye Kaye’s story – she is a mother of a son affected by schizophrenia. In her search for understanding and raising awareness of mental illness, Randye spoke with Dr Michael Sand, a Medic and Senior Clinical Program Leader CNS at Boehringer Ingelheim to discuss what is important for future brain research. They also shared insights into how they are personally connected to mental illness.”
As we approach the third Anniversary of the publication of Ben Behind His Voices, the big question remains. How would Ben be doing without family support? Have there been any improvements in the system that failed my son, and our family, so many times in the past?
Want an update? If you missed it in an earlier post, here is the progress since the last page of the book (where Ben is still living in a group home, back in college classes, and doing some volunteer work). Many of the details are outlined in earlier posts (check category “How is Ben Doing Now?”), but here is the current picture, about which I am so grateful:
Ben continues to take college courses, 6 credits at a time.
He lives at home with us, and pays rent. (this after a disastrous housing change from the group home)
He has a JOB! He is a waiter in a chain restaurant, and absolutely loves it. He is often in the top three for tip-earning, and has often been asked to stay and supervise the closing process. Yes, amazing.
Although he had a roommate here for awhile, that ended badly (with the roommate’s addiction and connected behaviors) – but Ben has managed to salvage the start of an actual social life now. One step at a time.
Still. All of this progress can go away in record time – and often has, in the past – if something interferes with the meds he takes.
Families like ours walk a tightrope, struggling to balance all the elements of progress when someone we love has a “neural difference.” And we cannot do it alone. So it really pisses me off when our competence creates laissez-faire among the people supposed to be our support.
1. Last Friday, I noticed we were almost out of Medication A (Ben takes 3 things). So I called the pharmacy to order more.
2.They could not place the order because they had not received paperwork from the case management team. So I called his case manager, and also sent an e-mail. No answer.
Will write more about this later , as I am in Buffalo, NY, getting ready to provide keynote to help NAMI Buffalo/Erie county celebrate its 30th year…but wanted to share one of the interviews about the results of a new survey showing that caregivers of those with schizophrenia do better with more support, more resources, and less stigma. Thanks!
I had the pleasure of being interviewed on WBAI in New York by Armand DiMele, for his popular broadcast “The Positive Mind” . The show aired on August 23, 2011, but you can listen to the archived show here:
If you’d like to read more about Ben Behind His Voices, I’ve had the pleasure of being interviewed by several writers recently. Here are a few links: