FASD a guide for parents

The following is reproduced from SAMHSA's website, it was not developed or created by me. SAMHSA's content is in the public domain.

 

A Guide for Parents and Caregivers

What Are Fetal Alcohol Spectrum Disorders (FASD)?

“Fetal alcohol spectrum disorders” (FASD) is an umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects may include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications. The term “FASD” is not intended for use as a clinical diagnosis. It refers to conditions such as fetal alcohol syndrome (FAS), fetal alcohol effects (FAE), alcohol-related neurodevelopmental disorder (ARND), and alcohol-related birth defects (ARBD).

Some people with an FASD have specific facial features such as a smooth philtrum (ridge between the nose and upper lip) and tend to be smaller in height and weight. They often have permanent brain damage. This means that both the person’s thought processes and behavior may be very different from someone who was not exposed to alcohol before birth. The brain damage is the most challenging part of these disabilities.

FASD can happen when a pregnant woman drinks alcohol. Alcohol passes through the placenta and is absorbed by the fetus. The alcohol can harm the embryo and fetus even if the mother feels no effects. The degree of harm varies depending on the amount and timing of alcohol consumption. There is no known “safe level” at which a woman may drink alcohol during pregnancy.

The effects of alcohol use during pregnancy are different for each person. Some people are harmed more than others. Regardless of the specific effects, each individual has his or her own special needs and abilities.

What Impact Will FASD Have on Our Family?

As with any disability, your child’s disorder can have a significant impact on your family. Each child is unique. Each child with an FASD will provide his or her special challenges and contributions to your family.

As a parent or caregiver, it is important to learn as much as possible about FASD. Many professionals and the general public do not understand these disorders. The more you understand about the challenges your child will face, the more you will be able to help him or her be successful in society.

Some tips for dealing with your child’s prenatal alcohol exposure include:

  • Seek a diagnosis if you have not already done so. Getting your child diagnosed as early as possible will help get the services he or she needs to be successful. An accurate diagnosis will help your family develop a foundation for building a successful future.
  • Accept the diagnosis. It can be overwhelming and difficult to deal with an FASD. Often, parents, caregivers, and other family members want to deny that a problem or issue exists. It is challenging to see your child struggling with his or her growth or development. But once you accept the diagnosis, you can better understand why your child is having difficulties and behaving certain ways. This can reduce some of your anger and frustration. You also gain an understanding of the resources and services needed, which may prevent your child from developing additional disabilities, such as alcohol and drug abuse, as he or she moves into adolescence.
  • Seek support. One of the best sources of support for you as a parent or caregiver will be other families experiencing life with children with an FASD. Family support networks and groups will allow you to share ideas and resources and gain emotional support as you face the daily challenges of raising a child with an FASD.
  • Work closely with the health, education, and social service systems. Ask the clinic where your child received his or her diagnosis for information on the availability of case management and other community support services. Get connected with advocacy groups. Once a child is diagnosed with a fetal alcohol spectrum disorder, a parent needs to become an “expert” on navigating the systems that provide resources and services. Unfortunately, these “systems” do not always work well together, and many professionals who provide services do not always understand the unique needs of children with an FASD. A parent or caregiver is often a child’s best advocate for needed services and support. Ideas for effective advocacy are discussed later in this booklet.

Is My Child With an FASD at Greater Risk of Becoming Involved in the Juvenile Justice System?

According to research, 60 percent of people with an FASD have been in trouble with the law (Streissguth, et al., 1996). Furthermore, those with disrupted school experiences were twice as likely to get into trouble with the law. Children with an FASD often have many behavioral, emotional, and intellectual challenges. These challenges can include inability to pay attention, lack of skills in problem solving and abstract thinking, and deficits in memory, intelligence, and gross motor skills. Many times youth with an FASD do not understand consequences and lack the ability to conform to a law’s requirements. They often repeat mistakes and take risks as a result of their permanent brain damage. Individuals with an FASD have cognitive challenges that often result in behavior problems.

Socially and emotionally, youth with an FASD can be at a much lower developmental age than their peers even if they have a high IQ. Therefore, they may be impulsive and make poor choices. All of these characteristics can lead to an increased rate of delinquent acts or crimes.

Not all individuals with an FASD will end up in the juvenile justice system. However, you’ll need to be aware of the services and supports your child needs now to ensure a positive future. Early intervention can help your child avoid involvement in the juvenile justice system.

What Will Happen to My Child and Our Family When He or She Has Trouble With the Law?

Sometimes, no matter how much support you provide a child with an FASD, he or she will take risks or make poor choices and become involved with the juvenile justice system. Don’t blame yourself. Remember that all youth are vulnerable to taking risks, not just those with an FASD. Also, FASD involves permanent brain damage. Even with an early diagnosis and early and consistent intervention and support, a child with an FASD will still be vulnerable.

  • The procedures and process in the juvenile justice system
  • Your child’s rights and responsibilities
  • Your rights and responsibilities
  • Resources and options available to your child for programs and services

Juvenile courts exist in all 50 States and the District of Columbia. In each State, the juvenile court is set up differently, but there are many similarities from State to State. Typically, the type of cases that come before the juvenile court include delinquent children, children who are “status offenders” (e.g., underage drinking, tobacco use, truancy), and abused, abandoned, and neglected children.

Police Contact

Often the first contact with the corrections system is with police. For example, your child may have been caught shoplifting from a local convenience store, damaging property, or staying out past the local curfew time. Youth with an FASD are more likely to get arrested than those without disabilities. Part of the reason is that they may not understand the “unwritten rules” of society. If your child is stopped by the police, he or she may not be aware that it is customary to respond to questions in a polite manner. A child with an FASD cannot pick up on social cues and may function at a delayed developmental age. Police may perceive his or her blunt responses as rude. This type of interchange does not help the child as he or she enters the correctional system.

Arrest

A youth can be arrested at home, at school, or in the community or given a summons to appear in court. If arrested, a youth is usually brought to a detention center. It is very frightening to be arrested, especially if you don’t understand what is happening. Children with an FASD can be prone to outbursts due to confusion or fear at the time of arrest. It is most helpful if a parent or caregiver is present during the arrest to help keep the youth calm and aid communication between the officer and youth. This may be difficult if your child is an “adult” (usually 18 or 21, depending on your State’s age of majority). It is helpful to find out what your rights are as a parent so that you can provide your child with the support he or she needs.

Police Questioning

Some individuals with an FASD have a high desire to please people in authority and may confess to a crime to stay on their good side or to “become friends.” People with an FASD may have no ability to distinguish a friend from someone who is “friendly,” so they may develop a false sense of trust with the individual questioning them. They may attempt to guess what the officer wants to hear or simply agree if they do not understand what is being asked. They may try to hide memory gaps by claiming to remember what others have told them or by adding things they have heard or seen elsewhere, such as on television. Other common behaviors include taking blame quickly, attempting to bargain, shutting down emotionally, and basically giving up. It is important to teach your child to ask to have an attorney or parent present when being questioned by police. An insightful attorney familiar with FASD will look at how a confession was obtained in order to suppress it, if appropriate.

Due to impulsiveness and lack of insight, youth with an FASD may give out damaging information. They may tell stories that don’t make sense or that conflict. Corrections professionals may view them as lying instead of having poor memory.

What Are My Child’s Rights?

  • Your child has the right to a lawyer. The court will assign you a lawyer (public defender) if you cannot pay for one.
  • Your child has the right to not talk to police, sign papers, or share information until he or she has spoken to a lawyer.
  • Your child has the right to hear the charges being brought against him or her.
  • Your child has the right to deny those charges and be given a trial.
  • Your child must be presumed innocent and has the right to appeal the trial court’s decision.
  • If your child is found guilty, he or she has the right to give ideas for consequences.

What Is the “Miranda Warning” and What Does It Mean to My Child With an FASD?

The Miranda warning is the information that must be provided to you upon your arrest. It reads:

You have the right to remain silent. Anything you say can be used against you in a court of law. You have the right to consult an attorney before questioning. You have the right to have your attorney present with you during questioning. If you cannot afford an attorney, one will be appointed to you at no expense to you. You may choose to exercise these rights at any time.

It may seem clear to most individuals, spelling out rights and concerns one may have at the time of arrest. However, an individual with an FASD may not understand the information. It is important, as a parent or caregiver, to try to dissect the Miranda warning and look at it through the eyes of your child with an FASD:

  • You have the right to remain silent: Youth with an FASD can be very talkative. Often they can chatter, especially when they are
  • You have the right to consult an attorney: Individuals with an FASD may not understand what an attorney is or why they would need one.
  • Court of law: An individual with an FASD may not understand what a court of law is.
  • Rights: The concept of rights can be very abstract. Youth with an FASD often do not grasp abstract concept
  • Exercise these rights: To an individual with an FASD, exercise may mean jogging or doing sit-ups. This is a very abstract concept.

Parents, caregivers, attorneys, and court advocates must understand the juvenile’s ability to grasp concepts such as those stated in the Miranda warning. Parents and professionals need to provide the necessary support to ensure the youth understands the concept. Some suggestions for making sure youth understand concepts include:

  • Make sure your sentences are short and direct, such as “Don’t talk” or “Ask for a lawyer.”
  • Ask the youth to repeat what you have said. You may want to do this more than once, as some youth with an FASD can repeat a phrase but do not grasp the meaning. Ask them to state the concept in their own words.
  • Say exactly what you mean. Make sure there are no double meanings or abstract phrases when you communicate.
  • Repeat your sentence several times as needed so that the youth can process the meaning.
  • Be very specific and give only one direction or idea at a time. Youth with an FASD often have trouble following multiple step instructions.

Are There Alternatives to the Formal Juvenile Court Process?

Many offenses, especially first-time, low-level offenses (e.g., shoplifting, disorderly conduct, tampering with a motor vehicle, possession of a small amount of marijuana), are not addressed in the formal juvenile court. Often, in this situation a child is diverted through a process where he or she provides community service and pays restitution.

A first-time, low-level offense can serve as a “wake up call” to parents, caregivers, teachers, and service providers for a child with an FASD. Parents never want their children to go down this path. However, it can be an excellent opportunity to reevaluate the child’s programs, services, and educational environment and to seek more resources and supports to redirect the child to more appropriate services.

Understanding and accepting your child’s limitations is a big step to preventing more involvement in the corrections system. Appropriate supervision and safe, controlled environments are so important for an adolescent with an FASD. This can be challenging for parents to grasp and accept, but it can make a huge difference. Some alternatives to the formal juvenile justice court process are described below.

Diversion

First time, low-level offenders are often “diverted.” Diversion is a process that may take place at the arrest, intake, prosecutorial, or court level. It refers to a youth’s movement out of the system. In this situation the youth may pay “restitution” and do community service work. The youth may also be placed in a noncorrections treatment program (residential or community based) and family members may be required to participate in treatments such as family therapy. For a youth with an FASD, this is a great opportunity to connect with trained advocates and mentors and become involved with programs and services that can prevent the youth from reoffending and beginning a cycle of failure. Programs that have little or no structure and supervision are not environments where youth with an FASD will be successful.

Restorative Justice

Restorative justice is a form of diversion. Restorative justice focuses on healing the harm done to communities and victims because of the criminal act or delinquent behavior. Restorative justice is a process that encourages offenders to be responsible for their actions while focusing on the victims’ needs. Restorative justice models often offer some success for offenders with an FASD because it engages the youth in concrete methods of accountability. It demonstrates appropriate behavior and empathy, which is often a deficit in individuals with an FASD. Restorative justice models include:

  • Victim Offender Mediation (VOM). VOM is a session designed to bring the victim and offender together to meet in a safe, structured environment and deal with the conflict. Approach this option with caution, as youth with an FASD may not remember the crime, may not believe they committed the crime, and may not be able to feel or express remorse due to their brain disorder. This could have serious implications for the victim.
  • Family Group Conferencing (FGC). FGC is used in many, but not all, States as a diversion for offenses such as theft, arson, minor assaults, drug offenses, and vandalism. FGC brings together key people most affected by the crime, including the victim, offenders, family, friends, and appropriate community members. A trained facilitator helps discuss the harm caused to the victim and how it can be repaired.
  • Peacemaking Circles. Peacemaking circles or “circle sentencing” is another restorative justice model. A peacemaking circle is a community-directed process that involves a partnership between the juvenile justice system and the community. It involves all those affected by the offense in the decision of the offender’s sentence. Principles of negotiation, mediation, consensus building, and peacemaking shape the process. Originating from a Native American concept, the peacemaking circle has been part of dispute resolution for centuries.

These are all options that parents and caregivers should be aware of if their child has an FASD. These youth can be successful with a restorative justice model if it is adapted for their FASD. The success of the process will be closely linked to the insight, knowledge, and understanding of FASD of those involved in the process.

If My Child Has Been Found Guilty (Adjudicated Delinquent), What Are the Next Steps?

Once the juvenile has been found guilty of an offense, the next step is for the judge to decide on the consequences. In most juvenile courts this is called the “disposition.”

Most judges get recommendations from probation officers or defense attorneys or from prosecutors as part of a plea agreement. Because of the lack of awareness about FASD, many youth will appear before the judge without FASD identified as an issue. Even if a diagnosis has been made, many judges do not understand the disability and will make a disposition that will not address the challenge of living with an FASD. Treatment, punishment, and intervention attempts will fail if there is a lack of understanding of the FASD and the services needed.

What Issues Should the Judge Consider When Making Decisions About My Child?

The professionals in the juvenile justice system should look at the following issues:

  • How does your child’s disability affect his or her ability to understand what is happening?
  • Is your child getting special education services now? Does he or she have an IEP (Individualized Education Program)?
  • If your child has an IEP, does it support the consequences being considered by the court?
  • Does he or she have a mental health or disability evaluation? Does it need to be updated?
  • Does your child understand his or her disability?
  • Do others involved in your child’s life understand his or her disability?
  • Do you have a plan to address your child’s risk-taking behaviors?

How Can I Advocate for My Child?

As a parent or caregiver of a child with an FASD, you have a vital role to play as your child’s advocate. Here are some important tips:

  • Get the facts. It helps to have a basic understanding of the juvenile justice system and the resources available to you, your child, and family.
  • Be prepared. Have information available to educate attorneys, advocates, and other corrections professionals.
  • Seek support. Resources are available in the system to support you. Under most systems, there are advocates called “friends of the court,” guardian ad litems, or court-appointed special advocates. Not all advocates will completely understand FASD, and you may need to spend time educating them so they can be effective in supporting your child.
  • Understand what you want. Advocates can help in devising case management plans for juveniles. They also can help develop strategies that are more effective in working with juveniles with an FASD.
  • Connect with other parents and professionals who have information on effective strategies for youth with an FASD in the corrections system. Learn from each other.

What About My Child’s Education?

Your child may or may not be receiving special education services before he or she enters the juvenile justice system. It is important to understand your child’s rights and needs as they relate to education. There are laws in place that require correctional facilities to provide each eligible child with adequate special education and related services.

An important law is the Individuals with Disabilities Education Act (IDEA). It is a Federal law that directs school districts to identify, locate, and evaluate all children with disabilities residing in their jurisdictions. The law further requires school districts to provide each child “a free appropriate public education” in the least restrictive environment consistent with each child’s individual needs, regardless of the severity of the disability (see 20 U.S.C. 1414) . This means that schools are required by law to provide special education services at no cost to parents to meet the unique needs of a child with a disability.

Unfortunately, juvenile correctional settings often fail to meet these legal requirements. As a parent or caregiver of a child with an FASD, it is important to understand this right so you can make sure your child is getting the educational services he or she needs.

Your child may need an Individualized Education Program (IEP). The IEP is a written document that outlines the special education and related services your child receives. If your child has a current IEP and is entering a correctional or other residential facility, the IEP team should meet as soon as possible to decide what changes need to be made. Your local school will not automatically send your child’s IEP to the new facility. It is crucial that the staff at the facility have this information. You or your attorney or case manager may need to provide it. However, it is the legal responsibility of the facility to request your child’s educational records from his or her school.

The IEP describes the special services your child may need. Your child has the right, depending on the needs, to receive services such as medication management, counseling, and occupational, physical, and speech and language therapies as well as help with schoolwork. These are just some examples of services that may help your child.

As a parent or caregiver, you have the right to help develop your child’s IEP. If your child is placed in a correctional facility that you cannot travel to and there are meetings about your child’s educational or other needs, you can participate by phone. You can share information about your child’s educational needs with the staff and ask questions about the special education services your child will receive at the facility. You have the right to receive all copies of the educational plans developed and only you or your child when he or she is 18 can sign the IEP. You should probably NOT sign a proposed IEP immediately. You can take it home and review it before signing it.

For more information on special education law, visit www.taalliance.org or https://www.ed.gov/about/offices/list/osers/osep .

Where Do I Begin?

One of the most productive “first steps” you can take as a parent or caregiver is to find the resources and support you need. No parent ever wants to deal with the corrections system. Understanding and connecting with the programs and services available is not an activity any parent is prepared for or looks forward to doing. To ensure the best possible outcome for your child, it is vital to understand the system, your child’s rights and options, and the programs and services available. Remember, you may be more informed about FASD than professionals you are working with or who are providing services for your child. You have a right to ask professionals to be educated.

Some phone numbers you may want to have as resources:

  • County public defender or attorney_____________________________
  • Social worker__________________________________________________
  • School resource worker_________________________________________
  • Advocate from disabilities organization________________________
  • Police liaison_________________________________________________
  • FASD organization______________________________________________

Another very useful resource has been developed by the University of Washington School of Medicine and School of Law. Individuals with an FASD are encouraged to carry the “Medical Information for Police” card. The card explains the disability and alerts the police that the individual is not waiving (and may not be capable of waiving) any rights.

To learn more about the card and to download a copy go to:

depts.washington.edu/fadu .

  • Click on Legal Issues, then
  • Click on Criminal Justice System, then
  • Click on Dealing with Police.

If you do not have access to the Internet, call or write:

 

FAS/E Legal Issues Resource Center

Fetal Alcohol and Drug Unit

180 Nickerson Street, Suite 309

Seattle, WA 98109

Phone: 206-543-7155

Fax: 206-685-2903

E-mail: [email protected]