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.

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.

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.

Andrew is a Child Development Specialist who has been working in the field of Autism for over 30 years. We discuss the past, present and future of teaching methods and therapies typically used, including the use of ABA Therapy. Andrew says we need to take a look at the “System”, what works and what doesn't, be open to change and ways to improve the way things are being done.

Jane is an attorney specializing in Special Needs wills and trusts. She walks listeners through the process of declaring legal guardianship of your Special Needs child when they turn 18 to protect them, and potential things that could go wrong if you do NOT declare guardianship. 

Jessica is a Financial Advisor, author and public speaker. Her “Pink Fix Money” blog says she is “not your father's advisor”. She specializes in helping women to plan for their future and take control of their finances. Since there is an 80% divorce rate among Autism families it's very important for women to understand the finances in their home and know how to pay the mortgage and bills and to know what's in their bank account. 

Mike is a CPA and financial advisor specializing in helping families with a child with Special Needs. He talks about helping families plan financially for their child's future, including the do's and don'ts of what to do. 

One of John Poston's twins was born with Down Syndrome 24 years ago. When it was time for him to enter preschool, no schools would take him. So he built his own inclusion pre-school where he and his sister could attend school together. After high school, once again, there was no place for his son to go. He wanted him to have a “college life” experience like his siblings and a place where he could live and be taken care of throughout his lifetime. So John bought land in Texas and built “Daymark Living”, a place modeled after assisted living facilities complete with a pool and rec center where his son, and others like him, could live. Listen to find out how he did it, and find out what "Tulipalooza" is!

Autism Families are you looking for a safe place to take your family on Vacation? Becky is the founder of the Champion Autism Network in Surf Side Beach, just south of Myrtle Beach, SC. They have worked on creating an Autism friendly environment for families to go on vacation by training restaurant and hotel employees and first responders about Autism. Vacationers will get a CAN card that offers discounts and a judgement free zone. She also creates public service announcements to make local people aware of what Autism looks like too. 

Nate's brother is 27 and has Down's Syndrome. Growing up in a family that pushed for his inclusion, they have continued that effort by founding “Co-Home”. They purchased a large 9 bedroom house where adults with Special Needs live alongside other Neurotypical people in Morristown NJ and they can walk to town to buy groceries, visit the coffee shop and go to work.  This is not a group home, it's quite different, and a great model for other parents to follow who are looking for living solutions for their young adult children with Special Needs.

Michele is the President and CEO of Our House Inc. who runs group homes and day programs for adults with Autism and Special Needs in New Jersey. We discuss the process of how to get a loved one into a group home, how to plan for their future as far as care, housing, work programs and how to plan financially. 

Gary talks about planning for his son's future and setting up a Special Needs trust for his son. He now runs the non-profit POAC Autism Services where they hold over 300 events a year for Autism families, and do trainings for teachers and Police officers.

Gary's son was born in 1994. His pre-school teacher recommended he see a Neurologist so they called CHOP where there was a 6 month wait to get in. So Gary called every week looking for a cancellation and finally got him in. He was diagnosed with Autism at 3 ½ years old. Gary talks about being a Dad raising a son in Toms River New Jersey where they have the highest rate of Autism in the entire nation of the US.

James runs “Across The Pond Sports Network”, a sports podcast from Scotland. In our interview he talks about the differences between his two Autistic sons. One talks a lot, the other, not so much. One is picky about food textures, the other will eat pretty much anything. His younger son Carter began having seizures a few months ago, one lasting for over an hour and 20 minutes, so now they have cameras and monitors all over the house. 

 James is a podcaster from Scotland who has 3 boys. Logan, 12 and Carter, 6, are both on the Autism Spectrum. They found out that Logan was diagnosed with Autism by accident at meeting. Once Logan started school he began to speak in full sentences by the end of his first year. But Carter only speaks 5 words at 6 years old. We talk about the system in Ediburgh and how they expect Autistic students to attend their first year of school with all of the other children rather than be in a Special Ed setting.  

Graham's brother Peter lives on his own now in Canada in an assisted living type of apartment where “Live, Work, Play” helps to supervise him. As a comedian Graham chose to live in New York rather than LA to be closer to his family and to visit Peter. 

Graham is a professional comedian and Podcast co-host on the “Autastic” podcast. He talks about growing up with his younger brother Peter who is Autistic and how it helped him to not take life too seriously. 

Kirk's wife and son had dual citizenship in the Us and Sweden, so when his wife became ill they put JJ in a group home in Sweden. She passed away in 2017 and JJ is still in Sweden where he is very happy. We talk about the difference between care in Sweden verses the US. 

Kirk is a professional comedian, Autism dad, and co-host of the Podcast “Autastic”. He talks about being a young Dad to his son JJ who has Severe Autism. They moved from California to the UK, to Connecticut, to Texas where they tried swim therapy and horse therapy to try to help him. When they hear of a state of the art school for Autism in New York they moved there to get him help. 

Diagnosed with Autism at 7 years old. In high school he was a fast runner and competed in track. But when he turned 19 they said he was too old to compete, so they went to court and won the case, blazing the trail for other athletes in Special Ed. Now married with a young daughter, He holds a Master's Degree and works in the field of mental health. He is also a Public Speaker and the author of several books giving parents practical advice on raising a child with Autism. His non-profit organization “Spectrum Inclusion” helps adults with Autism to find employment.

 Jonah talks about raising his son Daniel and about how he became a stay at home Dad after being an attorney. Later he and his wife decided to open a book store as a place of employment for their son and others with Autism. 

Jen is a therapist who has been working with the Autistic community since the ‘80's. She works as a Behavior Consultant who goes into the home to work with the whole family, combining her skills as a psycho-therapist and behavior therapist. She talks about ways to handle melt downs, angry outbursts and when the child goes into crisis mode. 

Marcela talks about her son having behaviors in school, come to find out that his aide was purposely tripping him. As his behaviors increased at home she couldn't defend herself as a single mom and frequently had to call the police, but she shares her concerns about how he could potentially be treated by police if they were untrained in how to deal with people with Autism. He is now in a crisis facility in South Carolina, but his mom says the day he left part of her died.

Marcela is the mom of three children and both her boys are on the Autism Spectrum. When her first son was diagnosed the doctors told her “Don't hug him or kiss him. He doesn't like being touched, so just leave him be.” They also said “He will never talk, he'll never say  ‘I love you' and he will never be independent.” She put both boys into an Autism Center in Ohio that was paid for by the ARC. She talks about how her son Owen liked to elope and had aggressive and destructive behavior, while Lucas had self-injurious behavior. Eventually her marriage dissolved and she got divorced. Eventually Owen's behaviors got so bad they police were called to her house twice a day!

After a trip to the hospital for behavior they discovered that Dana's son brady had what would become many episodes of Strep Throat, he was eventually diagnosed with PANDA Disease, and irritable bowl disease. After fighting for 5 years to get him into private school, after the hospital stay, her insurance company finally agreed to pay for him to go to private school. During the lockdown she hired respite care, but eventually he was hospitalized again, along with a lot of other Autistic kids that were having breakdowns due to the change in their routines. As her son approaches turning 18 she is looking at getting an advocate to help with the process of obtaining guardianship and planning for his future. She has plans to get a doctorate in law herself because her ultimate goal is to become an educational advocate to help other families navigate the system. 

After going through In-Vitro and premature labor, Dana's son Brady (now 16), was born with “Stridor”, a disruption in the nerve function in the vocal cords. As a young boy he required Feeding therapy had trouble gaining weight, and they had a lot of visits to the hospital.  At 18 months old, after a high fever lasting for 3 days, he stopped talking and she says “they lost him”. When he entered school, Dana, who works at the public school as an educational diagnostician for hearing impaired children, now found herself sitting at the other side of the table discussing her own son's IEP (Individual Education Plan). She was not getting what she felt she needed for her son, so she had to hire an attorney. In 4th grade he became very aggressive and was injuring himself, so he ended up in the hospital ER covered in blood. She is currently on the Autism Family Guidance Committee at Texas Children's Hospital and we discuss the year long wait to get children evaluated and diagnosed.

Darya is a young woman with Autism. She describes growing up having awkward social skills, trouble making friends and having to learn what humor and sarcasm were. She talks about how she annoyed people because whatever she was obsesses with was the only thing she would talk about. Now as an adult she has learned how to read social cues, understand humor, and says she is now fluent in sarcasm! 

Ben Levin is a 19 year old Author with Autism. When he was in school his parents and teachers tried to "cure" his Autism  But Ben says now that it was damaging to his self-esteem. He felt having Autism made him “less human”, so he began to pretend that he wasn't Autistic and told everyone that he was cured. Later he decided to accept his Autism and who he is, and now tells people his Autism is “Not a curse, but a gift.”

Soma explains how the brain works, and what is going on inside the mind and body of Autistic children and adults and how she is able to work with them to get them to learn using her Rapid Prompting Method. Eventually people who have never spoken before are learning to communicate and eventually even to speak. Her method can also be used with people who have had a stroke or have other disabilities.

Soma Mukhopadhyay is the creator of the Rapid Prompting Method. Soma's son Tito has Autism. While living in India she developed the method that taught him to communicate by first using a letterboard, then to write, and then to type, and now he can speak. She then came to America and began teaching other students using her methods. After appearing on 60 Minutes and other new channels, it spread like wildfire. Hear her explain how the method works. Note: Due to her accent it may be difficult to comprehend everything she says. If so, please visit our YouTube channel  Robbie and Me: Autism Reality where all the text is transcribed.

Suzi continues talking about the Special Needs program at Liquid church where they serve 150-200 kids with Special Needs.  We talk about how they prepare ahead of time to create a comfortable environment for the children before they begin to come to Sunday School. Liquid church has campuses at 7 locations throughout New Jersey in Parsippany, Sayreville, Mountainside, Garwood, Somerville and two new locations in Wayne and Princeton.  Covid has presented some challenges trying to find buddies to help right now but they are still pressing on helping families of Special Needs kids. 

Suzi is the mom of a son with Autism and Epilepsy who began a dynamic ministry for Special  Needs kids at Liquid Church in New Jersey. They offer Sunday School classes and get thousands of volunteers to be their buddies for life. They offer Parent Night Out every month as respite to families, and Parents Day Out on Black Friday so parents can shop hassle free. In February they host the “Night To Shine”, a prom for Special Needs kids and adults sponsored by the Tim Tebow Foundation. It's open to the community where they host 1,000 guests, with 1,000 buddies and other volunteers. 

Using RPM to communicate, Josiah tells him mom that he often wakes up at 3:00 am and Angels take him to “school” in heaven! When he returns he wakes up his mom to type to her and begins to tell her the things and people he has seen in heaven, things she never told him about and he had no way of knowing. Listen to hear who and what he sees! Since writing her book “Josiah's Fire” about all of this, she has heard from parents of other children who are having the same experiences. “Josiah's Fire” by Tahni Cullen is available on Amazon.