Fetal Alcohol Syndrome: Living with the most harmful, yet preventable prenatal disease
“When you get the diagnosis or realize your child has a disability, you aren’t ever emotionally or financially prepared,” Glasgow said. “When I was asked if I wanted to adopt her I felt it was meant to be, that I would become the parent that she needs.”
Anzhella was very small for her age and developmentally delayed. She started seeing a speech therapist and an occupational therapist, then at age 2 went into the early childhood special education program in Loudoun County Public Schools, while doing private therapy as well.
The school’s services provide early intervention and access to the curriculum. There’s no expectation of healing, only to help her grow and find success in the classroom and beyond.
In Anzhella’s early years, the Glasgow’s thought her development was just delayed, but at 5-years-old the gap still hadn’t closed. Dr. Ronald Federici, a clinical neuropsychologist in Manassas, diagnosed Anzhella with Fetal Alcohol Syndrome.
Acknowledging the disability was tough and the grieving process was hard for the Glasgows because all of their expectations for Anzhella’s future changed.
“You have to come up with new expectations and dreams,” Lisa Glasgow said. “Once you do that you realize there is hope and joy, it’s just different than what you had originally dreamed of for your child.”
Anzhella faces daily struggles physically and cognitively. She will be dependent for the rest of her life.
Fetal Alcohol Syndrome
Fetal alcohol spectrum disorders (FASD) affect millions of people in the United States. Each year more than 40,000 babies are born with Fetal Alcohol Syndrome and other alcohol-related birth defects. It is the leading known cause of mental retardation and it is 100 percent preventable.
The only cause is prenatal exposure to alcohol, which can happen at any time during a pregnancy, even before the mother knows. Any woman of childbearing age is at risk of having a child with an FASD if she drinks alcohol.
According to the Center for Disease Control, there is no safe amount of alcohol a woman can drink during pregnancy or when she might get pregnant. The only way to prevent FASDs is to not drink alcohol. All types of alcohol are equally harmful. A glass of wine is potentially just as harmful as six tequila shots. Alcohol can cause problems for a developing baby throughout pregnancy, but it is never too late to stop drinking. The sooner a woman stops drinking the safer it will be for her and her baby.
Alcohol causes more damage to a baby than any other drug and causes serious physical, mental, behavioral and/or learning disabilities with lifelong implications.
People with an FASD are vulnerable to a range of difficulties, such as failure in school, substance abuse, mental illness and involvement in the criminal justice system.
The cost to the nation of FAS alone may be up to $6 billion each year in support services.
For one individual with FAS, the lifetime cost is at least $2 million. People with severe problems, such as profound intellectual disability, have much higher costs.
A first-hand look at the disability
Although Anzhella is 16, in many ways she is really 8 years old or younger. Social interactions are difficult and she has a hard time understanding social cues. Her processing is a little bit slower, so in the classroom she needs the information to slow down and be repeated.
She has a sensitivity to noises, needs an advance notice for fire drills and she gets to sit in the press box for pep rallies.
The routine structure and supervision that her case manager and staff at Freedom High School provide is key to her success.
Neelum Chaudhry, the assistant principal for special education at Freedom, works hard to make accommodations for her students and their families. The school now does a separate back to school night and spring orientation for special education parents, which makes a big difference for parents because it is relevant to them and their children. Schools are still in the early stages of becoming an inclusive environment.
“I would like to see more of an effort and support provided for children with disabilities to participate in after school activities, such as sports and dances,” Glasgow said.
Many schools have a mentor club that plans activities for special education students a few times throughout the year. Peer mentors will take the special education students to a football or basketball game and put on a dance for them.
“I know the school takes pride in a separate dance, but I’d like to see them at the actual prom,” Glasgow said.
Eligibility for services
School staff work with parents to determine whether the student is eligible for special education services. The student is referred for testing and a Loudoun County Public Schools eligibility team, made up of an educational diagnostician, a school psychologist, a social worker and others determine the outcome taking into account feedback from teachers. The school system also reviews any outside diagnoses.
It takes 60 days to complete the process and parents can start it at any time to receive services.
Virginia is one of the last hold out states that requires parent approval for schools to do anything related to the student, including the evaluation, acceptance a disability if they find one and their education plan.
In the classroom
Fetal Alcohol Syndrome is not a disability recognized by IDEA, which is the law that drives special education. A student that comes to school with fetal alcohol syndrome can be identified with any number of disability categories.
“It depends on the severity of the brain damage and the functioning of the child,” Arndt said. “If you look at a student and just define them by their disability you oftentimes miss the important aspects of what you can do with that child or for that child so that they can be successful in a classroom environment.”
The state has outlined multiple graduation diplomas for those students and the school staff work with the family to identify what criteria they think the student can meet based on their cognitive functioning.
“We always consider every option for every student,” Arndt said. “You really look at how you can tailor the school day to the child.”
Parents and staff meet to determine where the student is functioning, what the expectations or annual goals are for a particular student and a plan to put in place to get them there. That plan is called an Individual Education Plan (IEP), which is the cornerstone of a quality education for each child with a disability. It outlines annual goals, the accommodations to help students in class and services provided to them during the school day.
Every student with a disability has an IEP plan. It’s the law so it should be consistent in every school, but every student’s involvement or level of support from staff differs because of the accommodations and services they need.
The pressure is on the teachers to determine what the individualized plans will be and how they are going to be able to work with each student to help them succeed.
There isn’t a set curriculum. They look at many factors, including scheduling classes at times of the day where students are most productive. Patience is key.
“It’s realizing there is no one-size fits all and getting others to realize that,” Arndt said. “It all falls back to getting to know the student and getting to know what works.”
With Fetal Alcohol Syndrome it’s important that students be around individuals that are modeling good behavior and making good choices because they need that repetition. It’s important to have Anzhella be around non-disabled peers so that she can emulate their actions and make sure she’s doing things the right way. And when she’s doing the right thing, encouragement is key.
“To see the growth and the moments when they finally get something... It’s a proud moment for everyone,” Ardnt said.
The transition is key
Glasgow is most concerned about her daughter’s transition planning and what will happen when the bus stops coming.
“That’s preparing the student for life when the bus stops coming to have the skills they need to have purpose in life,” Glasgow said. “That would mean having job skills and independent living skills.”
That’s an area Glasgow feels is in need of enhancement and increased opportunities in Loudoun schools.
Suzanne Burch is the transition teacher at Freedom High School and works with students in a career pathways class to help with skills they would need for life after high school.
“We have students who work within the building and outside the building in a volunteer or a paid role we connect with community groups and have support put in place,” Burch said. “We’re really focusing on what can we do here to help them when they’re not here.”
Self-advocacy is one of the most important factors for students so that they understand their strengths and weaknesses and utilize strategies to overcome struggles.
“As a parent I constantly wonder what’s going to become of my child when I’m not here to take care of her,” Glasgow said. “No matter how much I do to prepare her for her future, the bottom line is no one is going to take care of her the way I do. The risks of abuse and neglect are just so high and that safety net of support just isn’t there.”
“It’s a fear that I can’t shake and that is for any parent that has a child with a disability that isn’t going to be able to live independently,” Glasgow said.
Although Anzhella will always live in a supported environment, Burch is helping prepare her for future employment.
“She has a huge interest in horses so we’re going to explore that as much as we can,” Burch said. “Work is definitely in her future, she is definitely capable of having some type of employment.”
Anzhella said her dream job would be to work at Sprout, a therapeutic riding and education center in Loudoun. She takes horseback riding and carriage driving lessons at the farm in Aldie twice a week and also participates in Sprout's volunteer work program called Carrots.
“We’re getting her ready for what’s next,” said Brooke Waldron, Sprout’s founder, executive director and a PATH International instructor. “We’re supporting her as a potential employer and coaching her through job scenarios.”
She takes care of the horses, from feeding them to putting on their saddles and cleaning the stalls, which teaches her life skills in an environment that she loves.
“It teaches her responsibility, job skills and following multistep directions,” Glasgow said. “She’s putting something else before her own needs.”
Every week a group of teenage riders with disabilities work in the barn together, which also gives them an opportunity to work on social skills.
“We’re using that in her IEP transition plan as a goal that could one day work in a stable with horses,” Glasgow said.
County resources make a difference
Loudoun County Public Schools’ Parent Resource Center, which is funded by the Department of Special Education, offers information and referral resources for parents with children who have disabilities. Pam Spiering works at the parent resource center in Leesburg and is also a parent of multiple children with disabilities. She is a resource for the schools and parents to understand special education programs and services. Her area of expertise is transition services.
“I try to understand where the parent is in the cycle and be sensitive to that and not to judge them,” Spiering said. “It’s devastating if you have a child with a significant disability. It’s ongoing and they will need support for the rest of their life, which is why that transition to adult life services is so important.”
She deals with everything from special needs trusts and wills to guardianship to employment and housing to Medicaid and Social Security.
The parent resource center can truly listen because they have the luxury of time to maintain long term relationships and support that schools aren’t able to offer. They can go out to families in their homes or at work to try to meet their needs.
Spiering and her team are also there for parents to reach out to, when they don’t know who else to call. Even if it’s just to vent.
“There’s somebody else that they can go to if they’re not necessarily hearing what they think they should be hearing at the school,” Arndt said. “It’s always nice to know that they have actual human beings that they can go and talk to and get support from.”
The resource center educates parents on their rights, rules and responsibilities for a child so that they can be an effective partner with the schools.
“It benefits the schools and the children when their parents are educated about what special education is and how to collaborate with the school teams to develop the program,” Spiering said.
The next step in prevention is creating awareness
Loving and raising a daughter with Fetal Alcohol Syndrome led Glasgow to become an advocate to spread awareness for prevention and the need for support.
“Seeing her struggles and knowing that they are lifelong and getting to know other parents and the struggles pulled me into the role,” Glasgow said. “Unless you really understand what’s causing the behavior and the challenges then the support isn’t there at home, at school or in society.”
One of the biggest challenges victims of Fetal Alcohol Syndrome face is their lack of a functioning IQ, which makes steady employment difficult to attain. Individuals could still have high intellect and an IQ higher than 70, which disqualifies for many services, but they aren’t capable of using it in a functional way. The disease impacts every individual differently, it all depends on the amount of intake and damage to the brain.
It’s going to take awareness of the silent epidemic, in both the medical professions and in mothers who are trying to get pregnant to not drink alcohol.
The first annual Fetal Alcohol Spectrum Disorders (FASD) Awareness Month is September 2015. With the help of Glasgow advocacy, the Board of Supervisors passed a resolution that declared Sept. 9 as FASD Prevention and Awareness Day in Loudoun County.
It’s one of those silent disabilities that you might not see on someone's face, but having the patience to accept and understand what some individuals are going through can make a world of difference.
“Awareness, acceptance and knowing that hiring or having folks that do things a little bit differently in your businesses or with you in an organization, that’s really what we need,” Burch said.
Visit the National Organization on Fetal Alcohol Syndrome to learn more about creating awareness and prevention efforts across the country.
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