Finding their own way

When Tiffany Monem’s son, Daniel Emmons, was a baby she had to watch the clock to feed him because he didn’t cry when he was hungry.

In fact, he didn’t cry at all.

“You never knew when something was wrong with him,” said Monem, 26, of West Rutland.

When she banged pots and pans out of Emmons’ line of sight and he didn’t react to the noise, Monem thought he could be deaf. Tests showed he was not. A doctor diagnosed him with autism a month before his second birthday. He is now 3 years old.

“Before Daniel, I had no idea what autism was,” said Monem. “We need more training. We need more funding. We need more awareness.”

In 1992, 13 children in Vermont received special education services for autism. Since then diagnoses for the disorder have broadened, and the number of children who receive services has increased dramatically.

According to a preliminary count from December 2006, cited in legislative Act 35, there were 582 children with autism spectrum disorders receiving special education services. National numbers have gone from one in every 10,000 children to one in every 150, according to the Autism Society of America.

One of the difficult aspects of the disorder is sensory overload. Ordinary noises, smells, light and touch can overstimulate individuals with autism, making it especially difficult for children with the disorder to tolerate extremely social settings like schools and grocery stores.

“This is a national issue, the numbers have been going up across the country,” said Clare McFadden the autism specialist in the Vermont Division of Disability and Aging Services. “The growth is outstripping all the systems’ ability to respond.”Act 35, passed by the Legislature in May, was created to address the fact that services have not kept up with the rise in autism diagnoses. The Vermont Agency of Human Services and the Department of Education held forums throughout the state this fall to garner feedback from parents, therapists, special educators, support staff and others involved in the social, educational and psychological development of people under the umbrella of autism spectrum disorders.

There are five pervasive developmental disorders that fall under the ASD umbrella: autistic disorder, Asperger’s disorder, pervasive developmental disorder – not otherwise specified, Rett’s disorder and childhood disintegrative disorder. The legislation specifies the need to provide care for children and adults diagnosed with autism in their homes, schools and communities.

“The state is aware of a lot of the issues in the system,” said McFadden, who has worked with the developmentally disabled for 25 years. “In the beginning of my career there was hardly anyone served (under autism), you just didn’t see them. There is a wide range with how it presents itself in children. (This) makes it hard for school districts, too. Children’s needs are so different. It’s hard to create programs to treat all these kids.”

One mother’s crusade

Parenting for Monem felt more like a job at first. Her son required such intense attention that she felt more like a drill sergeant and teacher than mom. She tried working part time but it was too difficult to juggle schedules for Emmons’ therapy and school along with her daughter’s education on top of regular parenting responsibilities. Two personal care assistants now work in her home with Emmons.

Noise, light and touch overstimulate her son. When he was younger, bath time was so traumatic he would scream and shake when the water touched him. Monem’s neighbor once asked if they should call Social and Rehabilitation Services – the former name for the Department of Children and Families – the state agency that serves abused and neglected children.

Monem dreads grocery shopping with Emmons in tow because strangers give her looks because of his behavior.

“I’ve had people call my son retarded,” she said. “It makes it harder for me because I’m frustrated. Ignorance leads strangers to judge.”

Getting Emmons to eat is also a struggle. His main food these days is pizza. When he eats, you can’t touch his food, him or his fork, said Monem. If his food is tainted he will scream and discontinue eating.

“I’ve seen him go days without eating just because he doesn’t want to,” she said. “There’s only a few selective things that he will eat.”

Since Emmons was diagnosed, Monem and her family have relocated to get access to better care. Monem had to quit her job so that she can be vigilant about her son’s treatment.

“It’s a constant battle with the school, with what I feel he needs and what they feel he needs,” said Monem about the Early Essential Education program at West Rutland School. “He wouldn’t be where he is if I didn’t push.I’ve pushed and pushed, I’m tired of pushing.”

Emmons’ development team is strong now, Monem says, but she played a big part in placing the right people with her child. When he was first diagnosed, early intervention was successful but the progress Emmons was making slowed when he entered the Essential Early Education program.

“I feel like I kind of lost when he went to school,” said Monem. “They’re not doing their jobs and they’re not educated where they need to be. I’m sorry… I don’t want to put my son in the Blue House (Brandon). I want him around.”

Her crusade has paid off though: Early intervention has helped his verbal skills. But Monem admits other aspects of her family’s life have suffered. Her older daughter has a difficult time understanding why her younger brother requires so much attention. It has been tough for the children’s father to embrace his son’s diagnosis, which has also put strain on the parents’ relationship.

“It’s a huge extra stress,” said Monem. “Adam (Emmons) just refuses to accept that Daniel is the way he is, but he is a wonderful father and a wonderful partner.”Another stressor is the cost of Emmons’ care. Though a portion of the extra services are covered by Medicaid and Supplemental Security Income, many therapeutic items are not subsidized because of the lack of awareness and understanding of the vast needs of children under the autism spectrum disorder umbrella, Monem says.

“The financial strain of an autistic child is horrendous,” said Monem. “It should not be my job to hire aides.”

Emmons likes deep pressure. The young boy requests “squeezes” – or hugs, frequently. As part of his therapy Monem is purchasing a leaded vest and blanket, but the expense is not covered under Medicaid.

“I consider myself very lucky because most autistic children don’t show love and affection, Daniel never lost that,” said Monem.

As of late, he is communicating in a less affectionate manner. Emmons has started kicking, scratching and biting his mother. His speech and language pathologist says this is a form of communication. Because he can’t tell her verbally that he’s had a bad day, he communicates those feelings by acting out.

“It’s comforting to know he’s biting me out of love,” said Monem, “but it hurts.”

‘Rutland Town village is raising my daughter’

Society’s overall lack of awareness of autism doesn’t end at the state level, however, it seeps into the medical industry, education system and homes of children diagnosed under the ASD umbrella. A total of 195 people attended the forums hosted by the Department of Education and the Vermont Agency of Human Services in five locations. The most prevalent issues brought up by those who attended, were things like access to timely and accurate diagnosis, adequate training for staff who work with individuals with ASD, the need for a community resource and support center, training for physicians and coordination of services across systems.

“Not all pediatricians and family doctors have enough knowledge to identify the issues,” said McFadden. “I think a lot of times parents bring up concerns over and over and pediatricians might downplay them.”

Parents whose first-born child is afflicted with symptoms of autism don’t have developmental benchmarks, McFadden added.

“This is normal to me because I haven’t had the experience (of raising ‘normal’ kids),” said Lois Miller whose daughter, Heather Holzinger has autism.Miller was planning to put off vaccinating Holzinger, 14, until she was 2 years old. But she decided to have Holzinger immunized at nine months, and at the time the infant developed an extremely high fever. After several failed attempts to insert an IV in the baby’s vein, doctors put one in her skull.

It took some time for Holzinger to recover from the fever and subsequent illness, which made it difficult for Miller to see how her child had changed. In the meantime, Holzinger went from being a bubbly infant to a quiet, apathetic child. At a doctor’s suggestion, she had her tested for autism.

“She was diagnosed at just over 2 years old.” Miller said. “The only thing I heard until she was 6 years old was, ‘ehh.’”

Six months later, Miller enrolled Holzinger into an Essential Early Education program at the Vermont Achievement Center. At 5, Holzinger began attending Rutland Town School where Shelley Pelkey became her full-time paraeducator. An occupational therapist and a speech and language pathologist were also on her development team.

When Holzinger began working with Pelkey at Rutland Town School, she’d scream if someone touched her and she was particularly sensitive about her hair, so brushing it became part of their work together. Now Holzinger is able to tolerate her hair being braided.

Theirs is an unusual relationship in that until last year, Pelkey was Holzinger’s aide throughout her schooling at Rutland Town. The school now changes students’ aides every two years.

“What we’ve come to find through the years is you don’t want total dependency,” said Pati Beaumont, principal of the school. “I think we do strive very hard to listen to the fears of most parents.”

Learning to trust her child’s care to the school’s choice of paraeducator was difficult for Holzinger’s mother. At first, Miller didn’t want Pelkey to work with her daughter and requested a background check. Now, Miller says Pelkey, who has a son with Asperger’s, has been a godsend to her daughter.

“It is a learning – teaching process,” said Pelkey. “We’ve used many forms of communication anything we have available – pictures, sign, spelling. She is so verbal now compared to what she used to be.”

When Holzinger began at the school, if she was greeted by another student she would walk by, not acknowledging the hello. Pelkey taught her to stop, look at the person and reciprocate the greeting. Although her verbal skills and social skills have improved, Miller says her daughter mostly vocalizes needs and wants. She is still working on interactive conversation.

“She just loves people now, she loves being social,” said Pelkey. “It’s been baby steps. … It’s giving her the chance to show you that she understands. Once a skill is achieved you can generalize it across circumstances and situations.”

Although Pelkey does not have a college degree she has attended a number of trainings, workshops and classes on special education and autism spectrum disorders. Miller also continues to educate herself on best practices for educating her daughter. She says when she learns something new, employees of the school have already heard about it or are implementing it.

“Everybody here has always been one step ahead of me,” said Miller, recognizing how fortunate she is. “Rutland Town is a village raising my child.”

Mother of teen fights for progress.

Lisa Wood claims she is not the most popular mom at the schools her son Caleb Meaghan has attended. But if it weren’t for her tenacity, Meaghan may be having a more difficult time blending in as a freshman in high school. Although his integration has been somewhat seamless, the battles Wood has fought with the school’s officials are similar to past struggles.

“They’re discounting me already, and they’re discounting him already,” she said. “Nothing will tick off a mom with a special kid more than that, nothing.”Meaghan is a high-functioning child with autism, which is an often-overlooked diagnosis. Individuals with this form of autism are often labeled as difficult, stubborn or rigid. It takes special teachers and therapists who are willing to spend the time connecting with the child to help them continue to successfully develop.Many of the descriptions Wood uses to describe Meaghan’s behaviors as a child are similar to Emmons’. Once Meaghan was diagnosed, an occupational therapist and speech language pathologist were sent to Wood’s home to work with her son. “I’m more motivated than the average mom,” Wood said. “I took on a lot more at home.”

Wood says about one-fifth of Meaghan’s teachers have taken a real interest in his education. Meaghan didn’t ride the bus until second grade because the noise overwhelmed him. He didn’t talk freely until third grade, said Wood. In the sixth grade Meaghan was beaten up at school, and Wood was so worried he would check out even further that she took immediate action.

“I went right to a school board meeting and screamed and bawled my eyes out,” she said. “Advocating for your child should not be a luxury; it should be something every family can afford.”

Wood’s work schedule is flexible as she runs a farm with her husband and owns a business.

“There’s lots of people that are not as equipped as I and those are the ones I worry about,” she said. “God sent Caleb to me for a purpose. The only way I can help is to put back in for others.”

“There’s going to be so many kids like him out there,” said Wood. “I hope in 40 years I can tell you there are 10,000 kids like him. I wanted Caleb to have a normal life.”

‘If they have to fight, what are we doing?’

Each of these women are pioneers in the fight for better care for children with autism. All three described moments when the struggle became too much to bear; when it seemed like there was no help available for them.

Monem says she won’t wallow in self-pity, that she focuses on the here and now and what is best for her children.

Wood continues to explain to school administrators, parents of her son’s friends and others involved in Meaghan’s life that he does not have the same conceptual understanding of things as other children his age.

Miller relies on her daughter’s journal for basic information about how things are going for her at school.

“Heather can’t tell me how her day went,” said Miller. “We have to be their voice.”As Holzinger transitions from Rutland Town School to seventh grade at West Rutland School, both mom and school have learned from her journey. Early in her education the school would videotape her days so that Miller could observe her schooling schedule.

“The use of technology in the last 10 years has helped significantly in education practices,” said Pam Reed, director of special education in Rutland Central Supervisory Union. “There really isn’t support in Vermont for us. Even beyond money, it’s resources and workshops.”

says parents often go through a grieving process after their children are diagnosed with an autism spectrum disorder.

“I think it’s hard for the professionals to see that in parents,” she said. “If I were to stress one thing, they need to hear and listen to each other, communicate clearly.” As a professional whose career is based upon finding best practices for students with special needs within her supervisory union, Reed says the need for parents to fight saddens her.

“If they feel they have to fight, my God, what are we doing?” she asks.