Stone Soup Group is here to support families of children affected by prenatal alcohol exposure in Alaska. We offer specialized parent navigation, classes and training. Gain general information and resources online or call and schedule an appointment to learn more about FASD.
- FASD Strategies
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What is FASD and what causes the disorder?
FASD stands for Fetal Alcohol Spectrum Disorders. The term FASD is not meant to be a clinical diagnosis. FASD is an umbrella term that includes a wide range of effects experienced by an individual whose mother drank alcohol during pregnancy. This is a birth defect syndrome caused only by the mother consuming alcohol during pregnancy. FASD is said to be on a spectrum because not every individual will experience the exact same effects of the disorder; some individuals may experience more severe effects than another.
Is FASD treatable?
There is no cure for FASD. The physical, cognitive and mental impacts are usually lifelong; however, early intervention can help reduce some of the effects and help prevent some disabilities that are a result of these effects.
Is FASD preventable?
Yes! FASD can be 100% avoided by eliminating any consumption of alcohol during pregnancy.
Symptoms of FASD
- Abnormal facial features (example: smooth ridge between nose and upper lip)
- Shorter than average
- Low body weight
- Speech/language delays
- Problems with heart, kidney, or bones
- Learning disabilities
- Poor coordination
- Poor reasoning/judgment
How do I get an FASD Diagnosis?
If you suspect FASD is an issue for your child and would like a diagnosis, you need to visit a multidisciplinary diagnostic team. Talk to your pediatrician or medical home provider for a recommendation. FASDx is located in Anchorage, the Alaska Native Medical Center has options available and another clinic is located in Kenai. Stone Soup Group is also happy to help connect you to the right resource for your family.
Facts about FASD
- Alcohol in the mother’s blood during pregnancy is passed to her baby through the umbilical cord.
- The only way to prevent FASD is to not consume alcohol while pregnant AND while attempting to get pregnant. Nearly half the pregnancies in the U.S. are unplanned.
- It is estimated that a child born with FAS will cost $2 million over their lifetime.
- 1 in 5 women report drinking during their first trimester of pregnancy.
- No amount of alcohol during pregnancy is safe. Every pregnancy is unique and one fetus may be more susceptible to harm than another depending on how long the alcohol may circulate in the mother’s body.
Don’t assume that even if a child KNOWS the rules that they UNDERSTAND the rules.
The important thing to remember is that individuals affected by alcohol may think differently. Understanding these differences and applying techniques to accommodate the individual will go a long way to mitigate challenging behaviors.
- Observe the troublesome situations carefully to understand the nature of the problem.
- We need to interpret their responses correctly; to understand what seems like deliberate misconduct or attention seeking may actually be neurologically based problems with memory or comprehension. At this point we can teach habit patterns of appropriate behavior by using role-playing or other concrete techniques.
- We can reduce frustration and misbehavior by using multi-sensory tools like music, drama, visual symbols, and computers to make learning not only fun but also effective for students who might otherwise find it impossible to understand.
Good communication with a child, alcohol affected or not, requires using techniques that are suited to your child’s individual personality. Certain practices may be effective for one child and not another. A series of trial and error will help you identify what specific techniques are best for you and your child. Below are some tips to remember when communicating:
- Begin all conversations with the child’s name and make good eye contact.
- Realize that words or expressions may have more than one meaning. Understand that children with FASD are often very literal in their understanding.
- Speak slowly and pause between sentences to allow for processing.
- Remember there are multiple forms of communication: verbal, written, body language
- Gentle reminders help produce a positive result.
Eating problems are common for alcohol-affected children. Anticipate that mealtimes could be a problem and be flexible in your expectations.
- Allow ample time to eat.
- A child with FASD may eat slowly because of poor muscle control or poor swallowing reflex. Accept that FASD children may be messier eaters.
- Work on one kind of table manner at a time. Integrate a new manner only when the previous one has been successfully used for some time.
- Avoid fast food restaurants at peak times when eating out.
Not all hygiene strategies will work for all people and it will take trial and error to determine what works for your family. What is critical, is routine, repetition, organizational structure. But be willing to try new ways of handling hygiene training. Be creative!
- Keep supplies like shampoo, body wash, combs, and toothpaste in a storage container. Place the container in a specific location.
- Let the child help choose the supplies. This increases the enjoyment of using one’s own items.
- Color code items such as towels, toothbrush, and comb, and the storage container for quick identification.
- At an early age, begin a routine of daily bathing and shampoo. By establishing a routine, the individual does not have to remember when the last shampoo occurred or determine if a bath is needed.
- If overly long showers are a problem, put a timer in the shower that shuts it off. If overfilling the tub is a problem, use indelible ink to draw a line on the bathtub to prevent the child from overfilling the bath.
- Keep the hot water tank temperature down or invest in a scald-guard faucet. This is essential for children who do not have a normal sense of pain and temperature.
- Keep a daily task checklist. It can be in the form of a chart card file, or whatever works best for the individual. The checklist can combine pictures and words and include the specific time for each task.
- Begin the routine of using deodorant at an early age. Using deodorant at an early age will pay off because by the time the child needs it, they will have become used to it.
- Role model shaving, with an electric razor. Long before it is time for the individual to shave. When it is time to learn to shave, pick an electric razor that best suits the individual and encourage the use of pre-shave lotion. As with bathing, encourage daily shaving to establish a routine.
- When individuals are old enough, begin teaching combing and styling their own hair.
- Have family members role model taking care of grooming needs in view of the individual and talk about how important and enjoyable grooming is.
- When in school, include activities related to hygiene on your child’s daily plan, such as learning to check one’s hair and face in the mirror when in the bathroom and washing hands at each visit.
People with FASD often do become engrossed in what they are doing and do not think about consequences, such as someone seeing them unclothed. Though it is difficult to instill a sense of modesty, we can teach skills that will protect their modesty.
- From an early age, make it an after-shower routine that people in the family dressing the bathroom into street clothes or nightclothes. When not taking a shower the routine is to dress in the bedroom. Establishing this routine from toddlerhood may help. If the toddler years are far behind you, try to encourage this routine now.
- Post a homemade STOP sign on the bathroom door that lists the crucial items that must be done before leaving the room. Try to establish a routine of checking that list (flush the toilet, turn off the water, get dressed, and so on).
- Develop a concise easy-to-understand explanation of modesty and discuss it as needed, starting with every shower. You will need it less often over time.
- Devise organizational techniques for hanging and storing clothing. Place picture codes on dresser drawers or use under the bed storage drawers or colored boxes for keeping items together. Hang coordinated outfits together on combination hangers.
- For winter climates, pin a hand drawn thermometer beside the door (inside) with a red line drawn on it at the temperature for which heavy clothing must be worn.
- Role model checking for spills and taking notice of clothing wear and tear. If a spill occurs, teach individuals how to tend to it with spotting solution or dabbing with water. Encourage individuals to monitor the condition of their clothing.
- Role model sorting laundry and using the laundry machines.
Puberty is a lifemarker for entering a new stage of life, a new maturity, a growing up and growing away from dependence on parents. People with FASD undergo all of the same difficult changes, but their developmental and behavioral disabilities can cause even more complications.
- Whether puberty occurs early or not, talk to your child about body changes casually, incorporating discussions into everyday life. When puberty approaches, talk about the changes before they occur. If you see sign of early puberty, seek information and medical advice.
- Get materials on puberty for young people with mental retardation.
- Mothers or sisters may be able to talk about their own menstruation cycle and care in a natural way before the daughter’s cycle begins.
- Establish a schedule for changing pads if remembering is a problem. Maintain this schedule whether or not a change is needed.
- CLUSTER CLASSES AND LOCKERS – Request that your child’s classes and lockers be grouped as close together as possible, even if it means selecting different classes.
- MAP YOUR CHILD’S ROUTES – Request a map of the school and a copy of the class schedule before school starts. With your child, develop a simple map showing the route to each class and highlight the office, bathrooms, stairways, cafeteria and so on, Then practice, practice, practice. Make certain that your child has at least one copy of the map and schedule before leaving for school, and always keep an extra set at school.
- FIND A “TRAVEL TRAINER”- If the school cannot provide someone to help your child learn his or her way around the school, find someone who can. Possible sources include: a college student who is studying to be a teacher, whose assignments may include working one-on0one with a school age student, or someone from a special needs support group in a church or local community. Perhaps some young person outside the immediate family will help foster independence and yet not draw attention to your child. Work out a plan for changing from assisted movement to moving around alone.
- FIND A CLASS WHERE YOUR CHILD HAS STRENGTH TO PROVIDE RELIEF FROM STRESS. – Make sure that your child takes at least one class in an area of personal strength to relieve some stress during the day, such as an art class. For information on Special Education, visit the school services section of this site or speak with a Parent Navigator.
Law & Rule-Breaking Issues
Parents need to be prepared to pick up the pieces if their teenager breaks some rule or law. First, realize the trouble is not always a reflection on you, the parent. There is no way to rehearse and practice appropriate behaviors for the many situations that can arise or anticipate what can happen. Be gentle with yourself, and don’t wallow in guilt should your child run afoul of society’s laws and rules.
- Don’t try to do it alone. Find someone who will provide support and friendship and act as an advocate should you need to appear in court, talk to a probation officer, discuss the situations with an attorney and so on.
- Be ready to educate those in the legal system. When they understand that FASD is not an excuse but a reason for a young person’s behavior, they will be more likely to focus on ways to prevent the behavior in the future rather than on punishment.
- Keep notes, reports, professional observations, and other materials that identify the problem as ongoing, as something that has been addressed by many people, including the parents, over a long period.
- Remember, proper documentation demonstrates that the behavior is not spontaneous or due to peer pressure, and that parents have not denied or ignored this challenge but have sought help and guidance when facing the issue.
- Familiarize yourself with the literature and other materials that address the constellation of issues associated with FASD as well as any research on the subject. This will foster an understanding of the reasons for what seems like antisocial behavior, and it can spur finding professional help to avoid or alleviate a recurrence.