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Real talk with parents, professionals and Autism Advocates. Cindy is the mom of a son with profound Autism. She has one on one conversations with other parents who give their perspectives on raising children with Autism. She also interviews doctors, lawyers, therapists and even adults with Autism who can offer help to other parents of children on the Autism Spectrum. Cindy is the author of the children's book series: "Robbie's World and His SPECTRUM of Adventures!" about a little penguin with Autism. Video of the podcast can be seen on her YouTube channel that features her son called: "Robbie's World".
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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.
Hester Wagner helps people with Special Needs learn how to make film. She is the Director of Film and Media Services for the Futures Explored Practical Film and Media Studio in California. They do hands on and vocational training for people with developmental disabilities and run Summer film camps They are partnered with John Travolta’s brother who was originally a Special Ed teacher and now runs Inclusion Films. They do a red carpet premier of the films that the campers have created in the Fall. The adults who attend the school learn job skills to actually get a job working in the film industry. Check out the website at Futures-Exlored.org
In Part 2, we talk about experiences where doctors and dentists refuse to see patients because they are Autistic. Barbie is working to change this as the director of policies for NYU division of Oral Health, which is the largest dental school in the country. She says that schools are now required to teach future medical professionals how to work with the Special Needs community. She is creating a curriculum helps to increase access for oral care for the Special Needs community, and helps to train future dentists to be familiar with people with Special Needs. They have a 12 chair clinic where patients can come, and she also helps people to navigate insurance.
When Barbie’s son received his inoculations as a baby he got a 102 fever. Then when it was time for the next round, the same thing happened, and he was sick again for 2 days with a fever. Her friend had an Autistic son and recognized some of the repetitive behaviors in Barbie’s son and recommended that she get him evaluated for Autism. When the doctor gave the diagnosis, she told Barbie “You’re going to be divorced within 6 months.” And sent her to see a counselor. Eventually she did end up divorced, left California and moved to New Jersey where she lives now.
Eliza is the mom of four, and her oldest son is Autistic. She is from New Jersey and her husband is from California, so they moved back and forth from the West Coast to the East Coast several times. She compares services in both states and says she had more things covered there and was even getting paid to stay home and care for her son in California, but it’s not available in New Jersey. Now she works virtually helping California families to navigate the system and get the support and services they need.
Dr Mark discusses the Methylation process in the body and how sugar creates a dopamine effect. Since Autistic kids don’t produce dopamine in their bodies correctly it creates a drive in them to get it, which causes the picky eating and drive for carbs and sugary foods. We also discuss inflammation in the body and leaky gut. He and his wife develop meal and lifestyle plans for clients to help them live a healthier lifestyle to help them live more disease free.
Dr. Mark is a Naturopathic Doctor runs the Functional Medical Institute in Tulsa, OK. They look for the upstream causes of illness by looking at their genetics, diet, sleep, stress and movement. Their mission statement is to provide a pathway to healing by making lifestyle changes, rather than just treating symptoms. He is also an author and movie producer. We discuss the changes to our bodies over the years that could possibly be causing Autism.
As a doctor, Dr. Abend was surprised to find that when he tried to take his own son to other doctors, they refused to see him because he was autistic. So, when he started a Special Needs sports clinic in his town, he began to invite medical students to help out in order to integrate them into being comfortable with kids with Special Needs. He also started the “Autism Think Tank” where doctors from around the world can get together virtually to discuss a patient to figure out proper medications and diagnosis for autistic patients. Next, he he’s working on a program to help out in the emergency rooms.
Dr. Paul Abend is a Physiatrist from New Jersey who is very involved with helping the Autistic community. He talks about spending thousands of dollars trying different therapies and trying to figure out how to help his own non-verbal, severely autistic son. When his son was having behaviors, he couldn’t figure out what the problem was until he called another doctor in Philadelphia who gave him a surprising answer as to what the actual problem was.
Jess is a writer and blogger of “Jess Plus the Mess”. When Jess was pregnant with her second son he suffered a stroke in the womb. They encouraged her to terminate the pregnancy, but she and her husband decided to “leave it in the Lord’s hands”. They raised their son Lucas and had another daughter. Soon after her husband was diagnosed with a brain tumor and they found out she was pregnant with her fourth child. Within a year she found herself a widow with 4 children including one with Special Needs. A week after his funeral, her Mother In Law said she was praying for Jess to find another husband. Listen to find out what happened next.
Kate Swensen is a mom of 4 from Minnesota and is well known on Facebook and Instagram for her blog about her son called “Finding Cooper’s Voice”. Cooper was diagnosed with Autism at 4 years old. After school didn’t work out for him she pulled him out, moved to a new home, and put a lot of money on credit card sending him to private therapies. When Covid hit, his therapy center decided to not take kids like him anymore. Listen to find out what life is like now.
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