Autistic Girl, 5, Bullied By Adults; 'It Was Devastating': Mom

NORTH FORK, NY — Chloe, 5, is a beautiful little girl, a happy child whose bright smile reveals none of the pain she has endured: Chloe, who is autistic, has been bullied, and not by other children — but by adults, her mother said.

Lauren Robert-Demolaize and Virginia Scudder, North Fork mothers of autistic and sensory children, spoke with Patch recently about the challenges faced — and about what they feel must be done to enlighten and educate, with an eye toward fostering acceptance and understanding.

Robert-Demolaize, who also has a 2-year old daughter Lilly, said Chloe was diagnosed with autism spectrum disorder level 2 with accompanying language impairment, ADHD, sensory integration dysfunction and developmental coordination disorder when she was just 4 years old.

“She was initially evaluated at 2 and again at 3 and received occupational therapy, speech therapy as well as counseling prior to her diagnosis. . . Chloe is very articulate but often has difficulty comprehending language,” she said.

And the diagnosis, she said, led to painful situations that haunt.

“Chloe, unfortunately has been the target of bullying,” Robert-Demolaize said. “She has had little issues with other children so far but has been on the receiving end of harsh comments, judgment and bullying by adults.”

When Chloe was in preschool, Robert-Demolaize said, prior to her evaluations and diagnosis, she was the topic of conversation in the parking lot by parents dropping off their children.

“She would get overwhelmed in class and would give a scream then cry if she was overstimulated. She never got physical with anyone and would only scream then cry but would calm down. The teachers were capable of handling her and discouraged me from removing her from the school,” Robert-Demolaize said.

However, she added: “Parents demanded she be removed from the class because she was a disturbance and didn’t belong with their children. They complained about her for months and cited things that happened at birthday parties and other places off school premises. These parents blamed her for their own children’s behavior and didn’t want their children around her.”

For Robert-Demolaize and her husband Guillaume, the issues continued to escalate as their daughter, she said, encountered other instances of bullying by adults.

“Chloe was also targeted by a bus driver,” she alleged. “She was verbally abused by the driver. After months of enduring this she finally was able to tell me what was happening and it was witnessed by teachers and staff at her school and the bus driver was removed. This caused regression in therapy and at school but she was able to catch back up once she had a new bus driver,” she said.

The driver, Robert-Demolaize said, would “scream at Chloe from the driver’s seat and tell her to ‘zip it.'”

The driver would also, she said, tell Chloe to “‘Get off my bus to her’ and told a staff member, ‘She’s your problem,’ because Chloe was crying on the bus. This was said right in front of Chloe. The bus matron also confirmed everything. . .repeatedly told the driver not to speak to her that way.” The driver, Robert-Demolaize said, “never stopped.”

“This was absolutely one of the most devastating, heartbreaking things I have ever had to endure.”

There was another incident, shrouded in questions, where Chloe allegedly got injured on the bus and had blood on her shirt. “I never got a straight answer as to what happened. The driver tried to say that it happened at school but the school nurse documented that it happened on the bus,” Robert-Demolaize said.

Speaking out on how it felt to see her daughter bullied by adults, Robert-Demolaize’s pain was evident.

“This was absolutely one of the most devastating, heartbreaking things I have ever had to endure. When people, especially adults, target a helpless, developmentally delayed child it is beyond painful,” she said. “There is nothing Chloe ever did to create this problem and to have people who are supposed to protect her and care for her do this is the ultimate punch in the gut and betrayal.”

As her mother, Robert-Demolaize said she has turned inward with questions. “I have harbored a lot of guilt over whether I did anything to cause her to be autistic — if I didn’t see it early enough or if I handled it wrong — so, needless to say, it was difficult without outside factors. Adding them in was tortuous. I have cried in front of her, have been petrified to drop her off at school and have had a lot of anxiety due to this. I have had to learn to not expose her to those feelings because it isn’t fair to her to see me upset. Over time I have become fiercely protective and will do anything for both of my children,” she said.

Living with autism, she said, is an experience that impacts the entire family.

“Daily life can be a struggle. I would say it is harder for her than it is for us, but it can be frustrating and saddening,” Robert-Demolaize said. “She lives in a world with a lot of ‘noise’. She tries to have relationships with others but it is often awkward. A lot of stimuli is overwhelming and certain objects, smells, textures or noises can be frightening for her. She only eats certain foods which makes going out to eat difficult for everyone.”

Both Robert-Demolaize and her husband have learned a big lesson in patience, she said.

“We have to know when to pick battles. She can be ritualistic with turning on and off lights, opening and closing doors . . .so we have learned to let her just do it and move on,” she said. “She is rigid and can be immature so we have to learn how to differentiate between what she can’t control and what is typical child behavior, which is not an easy task. Tantrums have been par for the course so we have had to learn how to handle them and what usually causes them. Going out in public was a major struggle when she was younger. Now that she is older she is easier but she lacks eye contact, has a short attention span and comprehension issues.”

What the public at large needs to know, Robert-Demolaize said, is that the autism spectrum is very wide.

“People often look at my daughter and don’t realize she is on the spectrum. When she has a moment they think she is misbehaved or I am a bad parent. Not all autistic people look a certain way and lots of people with autism can accomplish many goals and have a very successful life,” she said. “Chloe is incredibly intelligent and gifted in so many ways. She has a hard time in social settings but is kind and caring. What people need to realize is that when adults —especially other parents —make comments or pass judgment their kids are listening. It all starts with the parents.”

Autistic kids usually just want to be included, she added, and if parents and schools learn to discuss autism, those children will likely be included more and not bullied by their peers.

Both moms believe there is a lack of services on the North Fork and East End for families living with autism, and few places to seek feeding therapy, autism counselors, animal therapy, etc.

Support networks, they agree, are critical.

“Going through this, especially with a first child is so difficult because you don’t really know what is typical,” Robert-Demolaize said.

She’d had no experience with anyone living with autism, and the road was difficult to navigate. Schools would do well to kick off autism awareness workshops for students, beginning on the elementary level, she said; parents, too, she added, would benefit from handouts and information, to help their kids learn acceptance.

Despite the challenges, there are shining moments, too, such as when she sees Chloe interact with other children and enjoy herself,” Robert-Demolaize said. “For a long time she would just play by herself and be expressionless, but with time and OT she was able to find her place. I would pick her up from school and when I would ask her who she played with and she would give me a name other than ‘Chloe,’ it would make me so happy. “

Moms of autistic children experience a wide range of emotions, both said.

“There are a wide variety of emotions I feel as a mom of a child with autism. Sometimes its awe because she was able to overcome an obstacle or her keen ability to read, write and play music,” Robert-Demolaize said. “Other times its fear and anxiety for her future. I have felt immense sadness for the friendships I have lost because people don’t want their children around mine. Other times I am humbled by the kindness I receive in places I least expect. Most of all I feel love and pride for this little girl, her pure heart and her ability to to overcome obstacles.”

Being the mom of an autistic child has taught Robert-Demolaize forever lessons.

“It taught me that I have far more patience than I thought I did and that I am much stronger than I thought I was,” she said. “It has taught me to think outside of what is comfortable for me and to really put myself in Chloe’s shoes. Just because something is ‘normal’ for me doesn’t mean it is for her. I have learned to really be aware of who is in my corner. Not everyone is there for me or my children and I have to not be afraid to say good-bye to those I thought were friends and have judged me and my child.”

On the flipside, she said, she has also learned that there are amazing friends and people that love her girls as if they are their own — and to appreciate all her blessings.

“I have grown as a person because I really have to see the world through another lens. I have to think outside of myself and my comfort zone. I have learned a valuable lesson in tolerance, patience and acceptance —but I have also learned that I don’t have to tolerate or accept negativity or judgment,” she said.

During the holiday season, Robert-Demolaize said her wish is that life continues on a positive upswing. “Chloe is thriving in school and has made leaps and bounds over the past two years,” making friends, close to her sister and family. “All I have ever wanted is happiness for my children. I know there will be lifelong struggles but she is learning to cope — and I am learning to understand. We have the best friends in the world, amazing teachers, therapists and great doctors. This time a few years ago I didn’t think we’d ever get here, but we are — and I am finally excited for the future.”

Lukas’ story

Virgina Scudder, who also lives on the North Fork, said her son Lukas James, 5, was not diagnosed as autistic, but, instead, “sensory” by his behavioral psychologist. “He exhibits typical things with children that are sensory and autistic do, including patterned behavior, repetitive behavior, fear of loud sounds and noises,” she said.

Scudder, who also has Jake, 5, Lukas’ twin, and a daughter, Payton, 8, said she, too, seeks to raise awareness so that her child is not bullied.

“Lukas has had several moments around town where he was treated differently or as a ‘problem’ child because of his screaming and tantrums that most people see as being ‘defiant’ or bratty,” she said. “Also, people look at Lukas and say, ‘He doesn’t look like there is anything wrong with him.’ But his brain works differently. He may look like every other child, but his brain doesn’t processes things like you or I.”

A day when she took Lukas to a salon remains a painful memory, Scudder said.

“It was vicious”

“We have been there several times already, and it is not an easy task to get Lukas to have his haircut. One time, we had a hairdresser that saw him yelling and knew us from the time before. She walked up to the salon owner and told her flat out that she would not cut Lukas’ hair. The salon owner approached me and said it would be a longer wait because we had to wait for another hairdresser. But it was too late. We had clearly heard the woman and seen her reaction to Lukas, with her eye rolling and cruel prejudice. It was vicious.”

Another time, Lukas had a meltdown in a popular store, she said. “He heard a siren outside and was scared. He covered his ears and was screaming and rocking back and forth. I was sweating — trying to calm him down while having the other kids in tow hoping the siren would pass quickly so he would calm down. I tried to cover his ears and hold him close to me and tell him he was safe.”

The reaction from others was painful, Scudder said.

“The whole store stopped and stared. One woman took out her phone and was clearly taping or taking pictures of what was happening as I tried to get Lukas to relax. My daughter even noticed and asked, ‘Why is that lady starting at Lukas?’ Besides the fact that this was rude and disrespectful to my child, it was hurtful. His moment of fear was turned into a reality show for random passerby and it left me angry and sad for him,” Scudder said.

Sadly, the incidents are not isolated, Scudder said. At restaurants, her family has been asked to change tables because Lukas might scream or have difficulty sitting still, she said.

“We even had a woman with her husband look at us and tell us we needed to get control
of our child because we clearly weren’t doing our job. They asked, ‘What is wrong with him?’ And then had the waitress move her table,” she said.

Scudder said her heart breaks to see her child treated that way.

“This makes me sad for Lukas. It makes me sad for all children that are sensory and or autistic that can not control their fears or behavior and are viewed as ‘problems’ or ‘out of control.’ But most people don’t understand that children who are autistic /sensory are just children and most of their behaviors are not things that can be stopped with discipline. Our children are wired differently —but they are still children. They still notice the staring and the name calling. When things like this happen I want Lukas to remember how much he is loved and that those people don’t understand. We tell him how special and amazing he is to us — that should be the only important thing.”

Life with children who have autism is amazing and hard all at the same time, Scudder said.

“As a mother and teacher I have tuned myself to be observant and understanding. I have watched mothers with their children struggle at the supermarket and have seen the tantrums and crying, similar to Lukas’, and my heart breaks,” Scudder said. “But I don’t stand there staring at them, or make cruel and belittling comments. A kind word or a smile is all that is necessary to make things better and let a person know you understand what they are experiencing and are supporting them.”

Scudder agrees with Robert-Demolaize that there’s a need for additional programs in the community and in schools for sensory and autistic children, to foster understanding.

But there are moments, too, of pure joy, she said. “My most precious memory of Lukas was when he finally came home from school and was able to spell his name and identify the letter ‘L.’ This was just a few weeks ago. He was so happy that he was able to spell his name he could not contain himself.”

As his mom, Scudder’s heart hurts for her boy. “I am sad for Lukas when he has trouble processing things or is made to feel like there is something wrong with him. I want children and adults to see Lukas like we do — funny and obsessed with cars and mac and cheese.”

Work needs to be done to educate, Scudder said.

“What I want is to not raise awareness of the stereotypes of autism because that would be counterproductive. People are ‘aware’ of autism and they know it exists, but real awareness isn’t about the tag of autism and calling someone disabled. Raising awareness means having people understand that autism means that these children should never be made to feel limited. Real awareness means that these children should not be spoken about with, ‘Oh, that poor kid!’ How about giving these children the power to feel powerful?” she asked.

Patience, Scudder agrees, is one of the greatest lessons she’s learned from being Lukas’ mom. “Things that may take 10 minutes for someone to accomplish may takeus 40 minutes for us and that is okay.”

Scudder said the hope is to start a group on the North Fork to support and educate.

If she had one wish for the holidays, Scudder said it would be to open hearts and minds: “My wish is to have more people recognize the potential and love kids with autism/sensory issues have because the bottom line is, these children can be your friend, your neighbor, your teammate, your classmate — not just ‘that kid with autism.'”

Patch photos courtesy Lauren Robert-Demolaize and Virginia Scudder.