Evidence shows that the keys to working successfully with children prenatally exposed to alcohol are STRUCTURE, CONSISTENCY, BREVITY, VARIETY, and PERSISTENCE.
This section contains links to resources for parents and others to explore educational options appropriate for individuals affected by FASD.
Advocating for the Student with FASD Contains numerous helpful links worth following up on.
Wrightslaw.com Information about special education law, education law, and advocacy for children with disabilities
California Department of Education Administration & Support Includes information about state education funding and California Special Education Local Plan Areas (SELPAs), which manage IEPs.
Effective advocacy starts with educating yourself
Make sure you understand your child’s disability and learning style. Become knowledgeable about your child’s school program, and learn about your rights and responsibilities under the law. As a key member of your child’s team, your goal is to work collaboratively with teachers and other professionals to ensure that your FASD-affected child gets the best education possible.
What is a special education advocate?
An educational advocate is someone who helps parents or families to understand the special education process.Successful advocates get good results for students by working cooperatively and openly with parents and schools. Advocates can provide information about special education options and requirements, and can help you to seek a specific service or program for your child. An advocate can help you carefully read and interpret your child’s school records, testing information, and Individualized Education Program (IEP). An advocate may attend IEP meetings with you. A skillful advocate who knows local schools and resources can often see solutions not immediately obvious to other people.
It is important to know that there is no formal certification or licensing process for educational advocates. Some are attorneys, but most advocates are not trained as lawyers. A well-trained educational advocate who is not an attorney will help you know when you need advice from a lawyer.
Most importantly, an educational advocate can help you to become a better advocate for your own child.
A Good Advocate:
- Is well-trained and knows the applicable laws
- Understands schools and school personnel
- Takes time to know your child, is familiar with his disability or disabilities and how they affect learning and accessing an appropriate education
- Empowers you
- Acts professionally
Parents Helping Parents has a Resource Directory where you can search for advocates and attorneys in California. On the right hand side of the Directory page, there is a place to select filters for what you are looking for; use the Services drop-down list in this area, and then select the Advocates and Attorneys option.
For a list of free/reduced cost attorneys and advocates from the California Department of Education Office of Administrative Hearings, download this spreadsheet.
The Women’s Organization for Special Education Professionals helps individuals find information and professionals for special education services in Southern California. Use its Special Education Services directory for a listing of advocates and attorneys.
Frequently, other parents who participate in the Southern California FASD Information & Support Network have retained educational advocates on behalf of their child affected by FASD. Special education advocates in Southern California also participate in the network. You can ask questions of these advocates, as well as request that parents send you suggestions and recommendations of advocates in your community or county by becoming part of the network’s email discussion group, attending network meetings, and/or joining our secure Facebook group. You can also send a message to one of the network points of contact in your county.
Finding the right educational advocate for your family means asking the right questions. Try to interview at least three advocates before hiring one. Here are key topics to discuss with each prospective advocate:
- Ask what kind of training the advocate has received. When? From what organization(s)?
- How much experience does he/she have? Consider asking the advocate specific questions about special education laws and regulations. Does the advocate give clear explanations?
- Discuss what the advocate knows about teaching methods that work for children with the kinds of challenges your child is facing in school.
- Ask the advocate to explain how to measure your child’s progress in school, and to show how this information can be helpful in developing the IEP.
- Find out how the advocate would plan to obtain positive results for your child, while maintaining a productive working relationship with your child’s school or school district.
- Find out how the advocate will help to educate and empower you to become a better advocate for your child, especially with working and communicating effectively on your child’s behalf with your child’s teacher(s) and support staff outside of planning or IEP meetings.
- Find out when the advocate is available, and how much time he or she will be able to spend with you outside of IEP meetings.
- Find out what the advocate knows about FASD, as well as any other conditions which contribute to your child’s learning challenges. This is especially important since FASD is not a unique category which qualifies any child for special education services in the way that blindness, deafness, or intellectual impairment (low IQ) do.
- Ask if the advocate has experience with other children who have FASD and/or other conditions affecting your child.
- Ask the advocate to explain how he or she was able to work out a solution with and for other families in the past, especially for children whose learning issues are similar to your child’s.
- Unless the advocate was recommended to you by at least two or three other parents, always request references from the advocate’s current or previous clients.
- If the advocate charges a fee (most do), make sure you know what the advocate’s fee and/or the retainer amount will be before you select him or her. (Always agree to these specifics up front, and always do so in writing.)
Make sure the advocate understands the facts of your child’s situation. This includes factors such as whether another adult (or government agency) has a legal say in your child’s education planning. If you would like the advocate to see your child’s school records, the school will require you to sign a release form. Also, you will need to decide when (or if) the advocate can speak to the school without your permission.
When you feel comfortable with a potential advocate, arrange for the advocate to meet and spend time with your child. Your child’s education must be individualized to meet his unique needs; and the advocate should get to know your child as an individual. If your child is in elementary or middle school, you may be working with the advocate for a long time, perhaps many years. Make sure he or she is someone that your child and you feel you can trust and work with for the long term, as appropriate. Beware if the prospective advocate is not willing and able to meet with and work with your child as part of the process of choosing the best one for your family.
Also avoid working with an advocate who is not willing to draw up a written agreement of what the he or she will do for you. Make sure that the agreement contains a provision that he or she must return all materials pertaining your your child when you are finished working together.
California Senate Bill 462. Designed to provide a voluntary special education advocate certification program. Has not yet become law.
Parents of children with FASD choose homeschooling for the same reasons that other parents choose this style of education: to control the educational environment their child is exposed to (often with a spiritual or faith-based philosophy at its core), and to make learning a safer and positive experience.
Many parents or a child with FASD sympathizes with the feelings below:
It’s not that the school didn’t notice. It’s that the schools are not set up to deal with FASD. They treat learning disabilities as things that can be fixed, or at least improved, with enough teaching and drilling. They don’t recognize that kids with FASD may not be able to read facial expressions and social cues. They can’t relieve the anxiety of a child who cannot understand playground interactions and cannot work in a group. FASD is not something you fix. It is brain damage, not a developmental disorder. These kids need strategies and support, not drilling and standardized testing. They need the kind of individual teaching and loving attention that a public school simply cannot provide…
I wish my son could go back to public or private school. I really do. Homeschooling is a huge responsibility and although I’ve enjoyed it, I don’t see myself teaching chemistry and calculus.
Fetal Alcohol Spectrum Disorder (FASD) and Education, March 2, 2009
But not all parents are able, financially or otherwise, to commit themselves to homeschool. If you are considering this option, start here. See the links below for more help.
Types of Therapeutic Residential Programs
Therapeutic Boarding Schools – These schools generally provide an integrated educational environment with an appropriate level of structure and supervision for physical, emotional, behavioral, familial, social, intellectual, and academic development. These schools grant high school diplomas or award credits that lead to admission to a diploma-granting secondary school. Each school will vary in its approach to the emotional and behavioral needs of the child. Parents must review this approach with the professionals working with their child to ensure appropriate placement.
Outdoor Behavioral Health (Wilderness Programs and Outdoor Therapeutic Programs) – Most outdoor behavioral health programs incorporate a blend of therapeutic modalities, but do so in the context of wilderness environments and back-country travel. The approach includes client assessment, development of an individual treatment plan, the use of established psychotherapeutic practice, and the development of aftercare plans. Outdoor behavioral health programs apply wilderness therapy elements, which distinguish it from other approaches. These elements include:
- Self-sufficiency and personal autonomy through task accomplishment
- Group and communal living facilitated by natural consequences
- Promotion of a therapeutic social group
Residential Treatment Centers – The focus of these programs is behavioral support. These facilities treat children and teens with serious psychological and behavior issues. Most are accredited by The Joint Commission (TJC), formerly the Joint Commission on Accreditation of Healthcare Organizations (JCAHO). Medication management and medical monitoring is generally available on-site. These facilities provide group and individual therapy sessions. They are highly structured and offer recreational activities and academics.
Home-Based Residential Treatment Centers – These programs are small, generally serving twelve or fewer participants. The environment frequently incorporates hands-on equestrian, farm, or ranch activities. The majority integrate participants in the local public or private schools in the area, while others offer home schooling. These programs are designed for young people who need a highly structured environment.
- Many local school districts are simply too small and under-funded to serve every child with special needs.
- Even a short stay at a residential program can produce big improvements because the programs are intense, highly structured, and round-the-clock.
- Residential programs can build independence among children with special needs who are overly reliant on their parents.
- Therapeutic programs like these are expensive.
- Few programs offer specialized or modified programs for children with an FASD. The wrong program is a waste of time and money.
- You are sending an often fragile or naïve child away from home, so parents must determine whether the program is safe and appropriate.
The Individuals with Disabilities Education Act (IDEA) authorizes residential care for students with disabilities in Section 300.104 of Title 34 of the Code of Federal Regulations (CFR):
If placement in a public or private residential program is necessary to provide special education and related services to a child with a disability, the program, including non-medical care (including mental health services) and room and board, must be at no cost to the parents of the child.
Special Education Regulations (See especially the documents on this page available for download which address California special education regulations. They contain information about statutes pertaining to in-state and out-of-state residential treatment facilities.)
Questions Parents Should Ask Before Selecting a Residential Program (This page does not include diagnosis-specific items. Parents should add questions about the program’s approach to helping students with fetal alcohol-related challenges.)
Educational Rights for Children with Disabilities
There are two main federal laws protecting students with disabilities, including students with FASD:
- The Individuals with Disabilities Education Act of 1997 (IDEA).
- Section 504 of the Rehabilitation Act of 1973.
IDEA is a special education law. Section 504 is a civil rights statute. Both laws guarantee to qualified students a free and appropriate public education (FAPE) and instruction in the least restrictive environment (LRE), which means with non-disabled peers and to the maximum extent appropriate to their needs.
A FAPE is defined as special education and related services that are provided at public expense and under public supervision and direction, that meet the State’s educational standards, and that conform to the student’s IEP. (20 U.S.C. § 1401(9); California Code Regs., tit. 5, § 3001, subd. (p).) Special education is defined as specially designed instruction at no cost to parents, to meet the unique needs of a child with a disability. (20 U.S.C. § 1401(29); Ed. Code, § 56031.) Special education related services include developmental, corrective, and supportive services, such as speech-language therapy, as may be required to assist a child with a disability to benefit from special education. (20 U.S.C. § 1401(26); Ed. Code, § 56363.)
Advocating for the Student with FASD This page contains numerous helpful links of its own worth following up on.
Wrightslaw.com Information about special education law, education law, and advocacy for children with disabilities
COPAA Council of Parent Attorneys and Advocates
California Protection and Advocacy Home Page Essential site for advocacy information
CA Dept of Education Code and Regulation Search Excellent search feature for CA Ed Code and Regulations
Common Classroom Concerns
- Easily distracted
- Easily frustrated
- Poor fine and gross motor skills
- Poor attention
- Lack of organizational skills
- Problems with concrete thinking
- Poor peer relations
Parents or guardians of students with FASD should make sure that teachers, aides, and administrators know the unique ways that their child’s alcohol-caused brain damage affects him or her. Some key facts include:
- All students with FASD have some degree of brain damage which is irreversible. This brain damage affects both the logical and the emotional parts of the brain.
- Many persons with FASD may have trouble expressing themselves. Be aware of their body language and know the warning signs for frustration, sadness, anger and other potentially hurtful emotions.
- Students with FASD are concrete thinkers. Concepts that may be problematic include decision-making, time, impulsiveness and distinguishing between public and private behaviors.
- Memory tasks are difficult. Students with FASD may not be able to generalize information they have learned from one day to the next. It is important to make eye contact (unless this produces anxiety), repeat things and use short instructions.
- Math skills are frequently difficult. Many students with FASD do not advance beyond a second- or third-grade (basic arithmetic) level in mathematics, regardless of IQ.
- Be prepared for inconsistent performance, frustration with transitions and the need for individual attention.
- Many children with FASD experience sensory integration problems. Crowds, holding hands, hugs, bright lights, certain noises, certain textiles and tags in clothes or seams in socks may induce sensitivity. Often, what with older children would be considered a slight bump from a fellow student feels like a push to someone with FASD. This may result in an outburst or fight.
Experts find the following general guidelines are effective methods to maximize the potential in school for all students with FASD, even those with Average or Above Average IQ.:
- Create borders around children with FASD using items such as armrests, footrests and beanbag chairs. This helps them feel more secure and calms them.
- Place the student near the front of the room for the whole year to help him or her focus.
- Reduce the visual and auditory distractions in the classroom (e.g., remove hangings from the ceiling, organize bulletin boards and bookshelves so they are uncluttered and close the door to reduce hallway noise).
- Keep the classroom schedule the same all year and use visuals to reinforce the schedule (e.g., hold up a book for reading time or show a picture of children playing for recess).
- Keep the seating assignment consistent all year long.
- Have students perform one task at a time.
- If the activity is brand new, walk through it with them first.
- Use a consistent signal when a change in routine is about to happen (e.g., a soft bell, a tap on the board, a song or a raised hand).
- Before the bell rings to go home or to change classes, stop the activity and give the student enough time to prepare to exit the classroom.
- Allow the student to have short breaks whenever necessary.
- Institute simple assists like the use of a calculator, a manila folder placed on the student’s desk to block out distractions or a ruler on the page while reading to help the student keep his or her place.
- To verify understanding, have the student explain instructions in his or her own words or demonstrate what he or she has learned.
- For longer projects, giving them deadlines for sections and checking on their progress is helpful.
- Taking notes can be difficult and may create a distraction as the child may focus more on writing than the context of the lecture. Provide them with a copy of the teacher’s or another student’s notes.
- Because their handwriting is often poor, using a computer may be a better way for them to complete their assignments.
- Punishment is not always the best answer for a behavior problem, since children with FASD may not understand why they are being punished. Try defusing the situation as calmly as possible and moving into a new activity.
- Using visuals, concrete examples and hands-on learning makes school easier. If one technique is not successful, try something new. Children with FASD can learn – they just need to use different paths to get there.
- Provide a daily list of homework assignments with a check box next to each assignment.
- Encourage success and reward positive behavior with praise or incentives. Positive reinforcement should be immediate.
- Post and enforce specific consequences for good and bad behavior in the classroom.
- Remember that the student’s misbehavior may be an expression of frustration or lack of understanding.
- Design worksheets with no more than three or four problems and a lot of white space.
- Allow students to use the computer to carry out activities whenever possible. Computers provide immediate feedback and unwavering consistency of approach.
- Give directions one step at a time. Wait for the student to complete the first step in the directions before describing the second step.
- Let staff know that many of these recommended strategies (e.g., keeping a calm, visually simple classroom) are contrary to what teachers are taught to do. Reinforce the importance of giving the strategies a try.
- Ensure parents and teachers of the student with FASD do not have to start from scratch each year. Provide the parents and the teacher with a summary of the child’s needs and the approaches that have been found most helpful. Make sure this information is included in the child’s school records.
- Find or assign one adult in the school to be the child’s advocate, someone who will speak up for the child in a positive way and help him or her figure out how to resolve problems. The advocate can be any adult in the school with whom the child has made a connection and who genuinely likes the child.
Teach-the-Brain Learning Tools Downloads. Various tools are available for download that are free for your use.
Visuals for Teaching Tasks and Concepts Although posted to an autism education site, these images may also be helpful for teaching students with FASD.