There is NO 100% safe amount of alcohol during pregnancy.

Successful Interactions with Individuals Living with FASD

Step one is understanding the terminology and basic overview of FASD, and that living with the effects can be quite challenging on a daily basis. We will offer generic comments around medication, education, and conceptual theories used in parenting as these areas are best addressed by specialist in their field. As uncomfortable as it may be, how successful an individual will be hinges greatly on how the caregivers form the “fit” between what is expected and what they are capable of doing. Undesirable and inappropriate behavior is often an indication of a bad “fit”. Our focus will be caregiver support and interventions that may be useful in your relationships with those who have FASD.

  • Alert individual that you need their attention before speaking. Touching their shoulder or calling their name in a way you are certain they have heard you. Yelling from another room or the bottom of the staircase is not effective.
  • Wait until you have had direct eye contact or confirmation that they are ready to listen before beginning.
  • Keep your message short, focusing on what they must know. No fluff.
  • Use words that have the least amount of double meanings possible.
  • Speak slower facing the individual.
  • The use of idioms is not effective or recommend. For instance, “Light a fire under it” rather than please hurry might not produce the desired results.
  • Keep the number of instructions to only what they developmentally can handle. Example: John, please go to your room and put the clothes on the floor in your dirty clothes basket. Thank him after completion and giving him a short break before asking him to go back to his room and put his legos in the container, is more effective than “Go clean your room”.
  • Check for understanding. Have them repeat back what they think you want to have happen.
  • Speak in the positive. “Please walk through the house” rather than “Don’t run”. “Yes, you may have a snack as soon as your hang up your coat” or “Yes, you may have a snack when the timer goes off”. Due to common auditory processing delays, saying don’t run in the house will often be heard as run in the house.
  • Limit items on the walls and in their rooms. They can be visually overstimulated without being aware.
  • Use soft lights. Florescent bulbs especially overhead can be too bright and noisy. Children often claim the hum of the light is highly distracting. In environments where you have no control like schools, churches, offices try having them wear a ball cap or sun visor.
  • Reduce the volume levels. Sirens, buzzers and rooms with chattering people will often cause a distress that demonstrates in withdrawal or overexcitement.  If possible, warn the child the buzzer will go off in _____ and count down the seconds with them. Allow them to cover their ears until the buzzer is done. Try soft foam ear plugs, playing music with ear buds or noise reduction headphones to reduce the effects.
  • Limiting the number of physical objects and arranging them in a non cluttered way reduces the chances of overstimulation. This seems odd to caregivers, since a great many individuals often have difficulty keeping their living spaces tidy. Too many objects to navigate through can be overstimulating and frustrate those with FASD.
  • Removing tags or wearing garments wrong side out when appropriate can reduce textile irritants.
  • Most individuals prefer soft silky type garments and those with as few as seams as possible.
  • Bean bags that envelop provide sensory input and are soothing
  • If you notice your child likes pull a blanket around them even in warm weather, this could be a sign they need that wrapped around feeling. Lycra wrap arounds and weighted blankets can be helpful in reducing environmental stimuli. Weighted lap pads, shoulder wraps and hoodies can be used when blanket are not appropriate.
  • Children frequently struggle with food textures. Common foods children with FASD tend avoid are mashed potatoes, applesauce, pudding. They migrate to crunchy items like raw apples, pretzels and chips. Adding tangy salad dressing or spices that stimulate the taste buds increases the chances of mushy type items being eaten. Cakes and cookies are not usually an issue. So adding nutritious items to cookies and cakes is a creative way to get your children to eat them.
  • They struggle with not recognizing they are hungry to not realizing they have just eaten. Whichever end of the spectrum, frequent snacks can be helpful. Setting a timer or an activity picture chart can help whether it is time to eat.

Due to the high volume of input stimuli individuals with FASD receive, they often manage by releasing stimuli. Rocking back and forth, tapping a foot or a pencil, wiggling on a chair, get up frequently, talking to themselves, twirling or chewing on hair, chewing on items all expound energy and help them clear space to process the task at hand.

  • If your child cannot sit still in a typical desk and chair at school, a sitting disc or ball chair has proven to be an effective outlet for those that have to wiggle to pay attention.
  • Foam noodles used in swimming pools that have been cut to six inches long and in half can be placed on the floor for a student to roll back and forth to cut down on tapping.
  • Items can be purchased online from sensory stores for the tops of pencils and other chewing items that offer sensory input. Make sure whatever you select will not be a distraction for other students and troublesome for the classroom teacher.
  • Encourage teachers or alternate caregivers to allow a child to talk in a soft whisper voice to themselves while working. If child’s ability to self stimulate through talking is limited, inappropriate behavior may occur.

Due to the high volume of input stimuli individuals with FASD receive, they often manage by releasing stimuli. Rocking back and forth, tapping a foot or a pencil, wiggling on a chair, get up frequently, talking to themselves, twirling or chewing on hair, chewing on items all expound energy and help them clear space to process the task at hand.

  • If your child cannot sit still in a typical desk and chair at school, a sitting disc or ball chair has proven to be an effective outlet for those that have to wiggle to pay attention.
  • Foam noodles used in swimming pools that have been cut to six inches long and in half can be placed on the floor for a student to roll back and forth to cut down on tapping.
  • Items can be purchased online from sensory stores for the tops of pencils and other chewing items that offer sensory input. Make sure whatever you select will not be a distraction for other students and troublesome for the classroom teacher.
  • Encourage teachers or alternate caregivers to allow a child to talk in a soft whisper voice to themselves while working. If child’s ability to self stimulate through talking is limited, inappropriate behavior may occur.

Caregivers report navigating through troublesome behavior is problematic and often distressing. Intellectually adults recognize that the behavior they see is a result a brain that has been damaged by alcohol. Sometimes when dealing with behavior day after day, the shift from FASD is problem to the individuals engaged in inappropriate behavior is the problem happens. It is challenging to day after day separate the disability from the person with the disability.

This is often exasperated by events where one the individuals demonstrates that bouncing balls in the house is not appropriate, taking the ball outside to play and the next day breaks a favorite vase with a ball that ricocheted and they are truly stunned why the caregiver is upset. Caregivers tend to struggle resolving the situation without emotion when they feel the act was intentional or the individual “should have known better”. It is the “should have known better” that signal the caregiver has come to a judgment about the individual. No doubt children do commit willful acts of disobedience.

When trying to determine if the act was willful or a result of impulsivity or forgetfulness, be sure to factor in the individual’s true developmental age. A widely accepted standard for FASD is an individual with FASD functions at half of their chronological age. This does vary between skills. A twelve year old may generally function as a six year old with self help skills of a four year old and ability to build bird houses of an eight year old.

Therefore, we cannot expect an individual with self help skills of a six year to go a party with other twelve year old and navigate at the same level without a glitch. Setting reasonable expectations for the individual’s developmental age will reduce stress and increase chances they will be successful. When consequences are assigned, they need to be immediate, short term, specific and related to the incident. Grounding an individual with FASD is not effective and will most likely result in further breaches of acceptable behavior.

  • Confabulation is a word used to describe a situation where individuals with FASD fill in the gaps when answering a question or relating a story not is factual….what most people refer to as lying. This a pervasive problem and drives most caregivers to distraction. Experts tell us when we approach an individual with “Did you break my lamp” or “why did you hit your brother” the tone of voice and facial expression causes the individual to go into flight or fight mode. What higher level thinking skills they have mastered vanish and they say the first thing that they can piece together in their mind. If a caregiver is certain an individual with FASD has broken a lamp or hit their brother, it is best to approach them with a calm tone of voice, remind them of your expectation, bounce the ball outside or be gentle with their brother and give immediate consequences that best relate to the situation. For instance, removing the ball for the day or having the individual do a chore for the brother who was hit.
  • Perseveration is seen when individuals have difficulty transitioning from one activity to another or when they repeatedly ask the same question over and over again after you have already answered them. They get caught in a loop and distracting them is more successful than expecting them to move on. Setting timers or give specific time warnings can help. Saying, “We’re just about ready” or “in a little while” leads to confusion and can produce a meltdown
  • Impulsivity can be problematic. Teaching individuals to elongate the decision making process can be helpful. For example teaching individual to either count to 10 before touching something or asking a series of questions before touching: 1) Is it mine; 2) Will the person be upset if I touch it; 3) Could touching the object hurt me or others. This process shows them that brain does go through a process of making decisions before we just instantaneously reach out and touch. Role playing, repeatedly is the best method of teaching this skill and can be applied to many areas where impulsivity is a problem
  • Meltdowns or fits can be a sign that the expectations of the environment or not a good fit. The individual is either not capable of meeting the expectation, they are overstimulated, tired, hungry, or not feeling well. Planning ahead and assessing a situation before hand is optimal. Once a meltdown happens, depending on their developmental level, expecting them reign themselves in may not be possible. Self regulation challenges is a primary symptom of FASD. Removing the individual from the situation until the caregiver can determine the underlying cause of the concern may be more productive. Yes, even if this means leaving the grocery cart full in an aisle. (Taking the individual back for a five minute walk through without purchasing an item and building up through repeated visits will add to the success basket.)
  • Stealing is reported as a problem behavior for many caregivers or individuals with FASD. It can have many causes. Whatever the cause there is a definite disconnect between if they take something that does not belong to them and the legal consequences that will follow if the behavior persists. Restitution can be required as consequence, working off the cost of the item, face to face apologies may have some positive effect. The best advice is to secure items you do not want stolen and remember individuals with FASD do not process like typical individuals, have great challenges with cause and effect and impulsivity.
  • Social concerns can be addressed through role playing or using the child’s toys in creative play and practiced in the safety of individual’s home. Issues such as how to recognize danger, manipulation, situations that leads to sexual misconduct, drug and alcohol.
  • Although not true for all individuals with FASD, sleep disorders are common. Individuals have difficulty both falling and staying asleep. Medications are used to facilitate improved sleep. Experts recommend the following:
    • Establish a before bedtime routine
    • Replace visual stimulation with soft or wind down music two hours before bedtime (TV, video games, movies etc)
    • Eliminate auditory stimuli one hour before bedtime use this time for the bedtime routine (cleaning and putting away toys, bathing, brushing teeth, lying out clothes for the next morning, making sure backpack os ready to go, reading a story, etc)
    • Use visual cues for bedtime, timers and picture charts have been helpful
    • Managing sensory preferences will increase the possibility for a pleasant bedtime experience. (Preferred sleepwear, temp, smells, lighting, sounds,etc)
    • The use of door alarms may be necessary for children who get up and roam during the night for their safety. These alarms are inexpensive and can be purchased online and home improvement or hardware stores.
    • Placing a monitor in a child’s room has been helpful for many families alert caregiver that a child may be out of bed.
    • Infra red security monitors placed appropriately will sound if the beam is broken if closing a door is not possible.
    • Placing a box or basket of caregiver approved quiet items within reach of the child in case they wake up before the desired time can increase the chances the child will stay in their room or bed.
    • Children who wake in the night hungry may benefit from a non perishable snack next to their bed.
    • Caregivers can use an empty aerosol can or squirt bottle to make a “monster or bad dream stay away” can. Enlisting the child to help decorate the contact paper covered item will facilitate the child’s buy in make the process successful. Place the item within reach of the child, when they become scared or alarmed, they can spray away the monster or bad dream. The child then feel empowered and can return to sleep independently.

What are your thoughts?

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