Spectrum Perspectives

After both of their sons were abused and beaten in group homes, Aileen and Martha Earl Cray (our previous interview) worked together and were instrumental in getting Stephen Komnino’s Law” passed. The law states that caregivers must report any injuries or abuse in group homes and must pass background tests and be drug tested regularly. Now they are working on getting “Billy Cray’ Law” passed in the senate. This law will allow video cameras in group homes if the members so choose. Cindy shares her own experience with requesting video cameras in her son Robbie’s group home to monitor him to make sure he didn’t have a seizure in his sleep, but she was denied by the state stating that it was an “invasion of his privacy”. Yet in the end, Robbie actually did die of a seizure in his bed. They discuss how a choice of video cameras should be allowed to save the lives of those in group homes.

When Aileen’s 36 year old son Daniel was very young, her insurance was running out, so her Doctor recommended giving him all his shots at once. He got a fever, became sick, and she began to see changes in his behavior and he was diagnosed with Autism. When he turned 21 they placed him in a group home where he was abused and restrained for hours, and staff would try to cover it up. They removed him from that home and put him another home where they beat him up and punched him in the face giving him two black eyes and fractured teeth! So they removed him and put him into a supervised apartment where a caregiver smacked him.  

When his father arrived and confronted the caregiver he became verbally abusive, but Daniel’s dad recorded the altercation. Daniel now resides in his own apartment where Aileen has a caregiver of her choosing care for him, all under “Self Directed Care” through the State of NJ. 

In part 2 Martha recounts the day that 2 police officers showed up at her door to tell her that her son Billy was found dead on the floor of his closet in his group home. He was taken for an autopsy done by a medical examiner employed by the day program, without his parents’ knowledge or consent, where they determined his death was from “natural causes”. Now she coaches other parents to make sure that it’s written into their child’s IHP that in case of a death that they should be notified immediately. She is now pushing for legislation known as “Billy Cray’s Law” that will allow video cameras in group homes. Some are fighting against it, but parents believe it will save many lives 

When Martha’s son Billy was a very big boy, beginning from the day he was born at 10lbs 11 oz. After he was diagnosed with Autism he sent to several different schools but continually had to leave due to temper tantrums that were especially difficult to handle due to his size. He started hurting people including his teachers. When Billy was 8 years old riding on the bus and he was harnessed into his seat, he got up and pulled the entire seat out of the bus to get to the bus driver. That’s when she received a letter from the state of New Jersey saying that he could no longer be transported by anyone in the state and Billy was expelled from the school. Eventually the state stepped in and said Billy was a danger to his family and needed to be placed into a residential facility, at only 10 years old. This is when his abuse began as he was moved to 6 different facilities, sexually assaulted 3 times, thrown into walls, bruised, and if he told his mother what they did, they abused him again. Eventually Billy died in a group home which we will discuss in part 2.

Jennifer’s daughter has autism and epilepsy, and at 11 years old was diagnosed with Lennox Gastaut Syndrome. Some of her seizures were uncontrollable crying episodes. Emma is completely non-verbal and during the pandemic she didn’t understand virtual school and cried because she saw her friends and couldn’t understand why she couldn’t see them in person. Emma goes to a school an hour away from her house and Jenn had multiple battles with the different transportation companies. When a new company took over the route and sent a new driver, they got “lost” for 5 hours. The state police found them in Camden. Now Jenn is pushing for legislation to make sure that all busses have a GPS, a communication device (a phone) and cameras on all vehicles transporting Special Needs kids.  

Pat and her business partner Pam started “Beloved Bath”, a for-profit business that employs people with Autism making candles, soaps, bath salts and body butters. They started the business for their own autistic sons and others, knowing that there is a very high unemployment rate for these individuals. We discuss his development and the relationship between her autistic son and his two brothers and how she and Pam started Beloved Bath. All products are available on-line. Visit their website www.BelovedBath.com 

Nadine began the non-profit “Nassan’s Place”, to help Autism families in inner cities of New Jersey.  Through education, basketball camps, activities, respite, sensory friendly movie days, holiday celebrations, swim programs, Summer camp, barbeques, and she makes sure that siblings are included in many of the activities. Her goal is to make sure that when there is no school there is a place for these kids to go. She has helped families that have become homeless and provided food and shelter for them. She also does a Women’s empowerment luncheon and  a pampering days for moms and dads. www.Nassansplace.org

 Nadine’s son Nassan is a 6’ 6” 18 year old with Autism. When he was a baby he seemed fine until he was 18 months old when he stopped responding to his name, started flapping, running around and having meltdowns.  She realized she would need to give up her career in banking and get a job where she could be home more, so she went back to school and got a teaching degree. As a parent she couldn’t find any kind of program or support group. She lives in an urban area of East Orange, near Newark, NJ, and believes it’s important to educate the community about Autism and not keep children like Nassan hidden away in a back room. 

In Part 2 of our interview, Cindy and Amanda discuss how the diagnosis of autism has changed over time. We have heard people use the words “Level 1, Level 2 and Level 3”, and Mild, Moderate, Severe and Profound Autism. But now it all seems to be under the same  umbrella term of “autism”, and we no longer can use the word “Asperger’s Syndrome”. Amanda believes too much attention is paid publicly to mild, high functioning autism, and not enough to those who are severe like her son, and it could hurt him in the long run. She says the term is so broad now that it’s meaningless. 

 Amanda is the mom of a 5 year old son with Autism. She says Nick had almost 50 words when he turned 2, and within months he regressed to only saying 5 words. He also began to lose his receptive understanding of language as well. Most of his speech is called “Scripting”, where he repeats lines he hears on TV or music lyrics. So even though he can speak, he doesn’t really understand what he is saying. She says that autism just not just affect the individual, it affects the whole family, and parents should not be silenced by the #actually autistic community.