An Insider's Guide FASD Edition

WHAT CAN YOU DO?

Remember that parenting, especially adoptive parenting should be first and foremost about maintaining a relationship with your child that continuously reminds them that they belong, that they are loved, and that they are worthy of love for the rest of their life.

Create routine and structure. It’s a lot easier to

Allow time for transitions. Give kids a warning

Manage exposure to new people and environments. Minimize attendance at events and large celebrations. If it’s a must attend event, find a way that your child can have a calm space in the midst of all the chaos. Bring a quiet activity to do together for a few minutes to unwind.

Remove unnecessary distractions. In school, your child may need to sit at the front of the class and away from the window, they may need earphones to block out external noises.

Reduce screen time. Symptoms such as

perseveration and confabulation are worsened for children who spend time playing violent video games, who are exposed to violent videos, and who watch movies with repeated violent scenes. Because they struggle with social skills, children with FASDs will have difficulty managing relationships on social media.

Provide close and constant supervision.

Reframe thinking from “I can’t let them out of my sight” to “They are much more successful when they know their safe person is near.” Maybe you don’t need to be there 24/7, but time your check-in based on how long they are able to be successful without you.

Individuals with FASDs who are of a certain chronological age often have abilities and skills reflective of a child much younger in age. This graphic shows the differing functionality of an individual who is eighteen years of age.

Avoid triggers. If you know what triggers your

kid, avoid it all cost. Unfortunately, this may mean a change in the family lifestyle such as no more family dinners in noisy restaurants.

Manage your expectations. Just because your

child had success once doesn’t mean they can repeat it from here on out. Not because they’re lazy or forgetful, but because their brain doesn’t always process input the same from one day to the next, from one environment to the next. Just because a child can do something at school doesn’t mean he can repeat the behavior at home. Their brain just cannot always make that leap.

Ignore uninformed advice. Family members

and outsiders may accuse you of making excuses.

They’ll want to tell you what they believe is the “right” way to correct your child. Those individuals don’t know your kid, and they don’t understand how a brain with an FASD functions. When you use alternate methods of parenting to accommodate for your child’s brain-based disorder, you’re not making excuses! You’re setting them and your entire family up for increased success.

Avoid asking why. Use “how” or “what” questions

instead. “How did this happen?” or “What happened here?” If you already know the answer, don’t ask questions. It just makes everyone frustrated when their issues related to short term memory show up and get interpreted as lying.

to understanding developmental stages in permanency.

FASD

Dear Parents and Caregivers:

remind a kid that “We only play with the tablet after dinner” than to try and fight over it all day long.

Make rules, make a schedule, and follow them. Kids with FASDs don’t do well with changes, so once you have the rules and schedule in place, think twice about making exceptions. before one activity ends and give it in increments.

Have them repeat it back to you so you know they heard and processed the information.

An Insider’s Guide

Special edition

The FASD United Family Navigator program provides individuals living with FASD with expert, confidential support and referrals. This service is free!

A FASD Family Navigator can be reached from 9am-10pm M-F at 202-785-4585. https://fasdunited.org/family-navigator/

DID YOU KNOW…

We hope that you’ve received at least one edition of our Insider’s Guide to Understanding Developmental Stages in Permanency over the past year. If you have received one, we hope that you’ve found the information helpful and supportive as you continue on your life’s journey with your child. We’ll continue to send those publications to you with specific information depending on your child’s age throughout the year. As this is a new project, we would love your feedback. Please take a few minutes to use the QR code on Page 3 for a quick survey to share your thoughts. Your opinion matters to us and to this endeavor! It will help us to know what information you find useful, and how we can improve the Insider’s Guide for all of our families.

We are excited to share with you the first of many Insider’s Guide Special Editions.

Based on our interaction with parents, we believe there are issues that families up and down the state are impacted by on a daily basis. This is especially true for children like yours whose stories include separation from their birth parents and a difficult early history. Our hope is that we can provide guidance, resources, and quick tips specific to those issues throughout the year as well through these Special Editions.

Children with FASD struggle with: ● Translating body language/expressions ● Identifying & expressing their feelings ● Understanding boundaries ● Focusing their attention ● Understanding cause & effect ● Short term memory; working memory ● Academic performance ● Information processing ● Time & all concepts surrounding time ● Changes in routines or rules ● Understanding cause/effect (if/then) ● Applying rules to other environments

We wanted to take this chance to remind you about post-permanency services that are available to you here in Delaware. We encourage you to connect to these services as often as possible, even if no major challenges have arisen just yet. When you’re familiar with the supports and have already built connections, it is easier to reach out when you need to. In addition to individualized support, regularly scheduled trainings and support groups are available. These services are available at no cost to any family that has adopted a child or received guardianship or permanent guardianship of a child.

We firmly believe that all families do better when they are supported and that this is especially true for families that have been uniquely created. Support is just a phone call away! We hope to hear from you because we are here for you.

Secondary Symptoms include: Laurie Lattomus, LCSW Post Permanency Guardianship Program Support Navigator

● Fatigue ● Frequent tantrums ● Irritability ● Frustration ● Anger/Aggression ● Fear/Anxiety ● Avoidance/Withdrawal ● Mental Health Challenges

Understanding FASD Could Change Everything!

depending on the severity of the child’s symptoms:

Understanding FASD Could Change Everything! continued...

By Celeste Bishop

• • • • •

behavior, or distractibility, the child may be punished, shamed, or medicated for something that their brain isn’t capable of doing in the first place.

Recent studies indicate that almost 70% of children in foster care may have a Fetal Alcohol Spectrum Disorder, or FASD, for short. Because parental substance use is one of the primary reasons that children are separated from their birth families, it makes sense that a high number of children in foster care were exposed to alcohol in utero. Because a percentage of children who were in foster care have been adopted by folks like you, it’s important for us all to have a better understanding of FASD. Regardless of your child’s age now, you may want to take a moment to think about your child’s in utero experience.

Consider whether prenatal exposure to alcohol could be contributing to your child’s current functioning, even if your child hasn’t been diagnosed. First, it’s important to consider some factors that lead to alcohol use.

Substance use, including alcohol consumption, is prevalent in individuals struggling with high levels of stress related to unemployment, housing and food insecurity, and other life challenges. Drugs, including alcohol, are often used as a means of self-medication by individuals who struggle with mental health issues. Substance use is often co-occurring, meaning that when an individual uses one substance, they are often using more than one. Alcohol is a readily available and legal drug that is frequently used as a substitute when other drugs are unavailable or not accessible. We know that individuals with issues related to alcohol and other drugs tend to minimize or deny their use. This is especially true when someone is pregnant or giving birth and is questioned by medical staff or social workers. Our experience in talking with families of children with challenging behaviors is that prenatal alcohol exposure was never indicated or proven for their children. Our advice to families is to strongly consider that prenatal alcohol exposure did occur and that their child’s brain was and continues to be impacted by that experience. This simple assumption, coupled with more information about the impact of alcohol on the fetal brain, may lead to a change in perspective on the challenging behaviors. This change in perspective may lead to using alternative methods proven to be more helpful for children who are living with brain-based disorders. This could make life a lot less frustrating and a lot more successful for you and for your child!

The fact is that prenatal alcohol exposure has a greater impact than prenatal exposure to other drugs, such as heroin or methamphetamines. This may sound unbelievable, but it is absolutely true. When a pregnant person drinks alcohol, it enters the bloodstream of the fetus. There is nothing that stops the alcohol from going directly to the fetus, and the fetus can’t process or eliminate the alcohol from their system. The alcohol then interferes with how the cells in the fetus develop, including the cells in the brain. There are windows during pregnancy when more severe damage can occur from alcohol consumption based on what is developing at that moment of gestation. As a result, the impact of alcohol on the brain and body of an unborn child depends on when the alcohol was consumed during the pregnancy and how much was consumed. This explains why many children with FASDs do not present with facial features historically associated with alcohol exposure. There is only a short window of time during pregnancy when facial features are developing. If alcohol is not consumed during that time, development of the facial features won’t be impacted. The central nervous system, however, is developing throughout the entire pregnancy. It is vulnerable to alcohol for almost the entire nine months, leaving the development of the brain at risk. The fetal brain starts growing at about five weeks. Throughout the pregnancy, the brain grows and develops at a rate of 250,000 neurons per minute! When alcohol interferes with that growth and development, that fetus’s brain is negatively impacted. After the child is born, their brain simply cannot function in the same way as a child’s brain that was not impacted by alcohol in utero.

Because the impact that prenatal exposure to alcohol has on the fetus varies, these effects are considered on a spectrum. FASD is a general label that refers to the wide range of physical, behavioral, and learning impairments that occur as a result of alcohol exposure in utero. We sometimes refer to it as “an umbrella” under which any one of the following diagnoses can be made

2 Insider’s Guide Special Edition | FASD

Fetal Alcohol Syndrome (FAS) Partial Fetal Alcohol Syndrome (PFAS) Alcohol-Related Neurodevelopmental Disorder (ARND) Alcohol-Related Birth Defects (ARBD) Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure

It is important for us to understand that these are brain-based disorders.

Often times, FASD symptoms may not cause a great deal of concern when children are young, between the ages of one and three. However, as children get older and more demands are placed on them, their brain simply does not have the capacity to keep up with the demands. Their struggles may increase and manifest in their behaviors. Unfortunately, prenatal exposure is not often considered a contributing factor at this age, and many children who should be diagnosed with an FASD are misdiagnosed. Behavioral problems are mistakenly thought to result from difficulties in the child’s previous home environment or are attributed to some other disorder. Children are often

Recognizing that your child’s brain may have been damaged and is wired differently than others is a first step in changing your perspective on your child’s “behaviors.”

You’ll often want to say, “You know better!” But they don’t, and they may never.

When parents understand and accept that it’s not about the child’s brain (or the child) being lazy or willfully defiant, rather it’s about the brain being unable to process correctly, we open our own brains to a number of new possibilities that can help our kids.

FASDs are under-recognized because they’re not visible. A child with Down syndrome is easily recognized because of their physical attributes, and those interacting with those individuals do so with an understanding of their disability.

Less than ten percent of individuals with an FASD have any physical signs.

Symptoms of FASD that show up as behaviors get labeled as willful, defiant, obstinate, and oppositional. Stigma and shame are associated with these labels.

Assumptions are made about the child and their parents, without taking into account that they are living every day with a brain-based disorder that impacts their ability to function “typically” according to their age or in accordance with society’s expectations. When the child and their parents have a better understanding of the behaviors and a different approach to responding, this can reduce the stigma and the shame associated with behavior.

Obtaining a diagnosis can be difficult due to a lack of specialized providers.

However, a correct diagnosis can be critical to your child qualifying for early intervention services, special education services, increased disability services, social security, and Medicaid funding for services. In the absence of an actual diagnosis, however, there are a number of things parents can do.

Prenatal exposure to alcohol can impact a number of domains that will be consistently effected over time. misdiagnosed with ADD, ADHD, ODD, etc. With these diagnoses come medications that often do not help, leaving parents and professionals – and the child – frustrated and disappointed, feeling like nothing is working. The “behaviors” are often interpreted as willful and disobedient or defiant.

Confabulation is a hallmark FASD symptom that is often interpreted by parents and others as outright and intentional lying by the child. In reality, confabulation is a memory error that results in false or distorted memories.

People with FASD may confabulate when they’re confused or have forgotten something, when they’re feeling stressed or anxious. They may say anything that seems appropriate or expected. They may believe what they say is true, they can be very convincing, and they will “die on this hill” to prove their point. Kids with FASDs may unconsciously create false memories based on things they’ve seen or heard, as opposed to something that actually happened.

Perseveration is another common characteristic, referring to difficulties making transitions, shifting topics or thoughts, or moving on from one emotional state to another. Does your child get stuck or over-focus on a subject to the point that it interferes with their learning, their ability to stay on-task, or their ability to transition calmly from one activity to another?

Perseveration makes it difficult for children to function appropriately at school, at home, or in the community. If it’s interpreted as willful or forgetful

Early intervention services can improve a child’s development. If your child is very young, don’t minimize struggles they may be having by thinking, “They’ll grow out of it” or “It’s just the terrible twos.” Talk with your pediatrician about what you know or what you assume their prenatal experience was. Insist on screenings and evaluations with professionals who have knowledge of the effects of alcohol on the brain in utero. Advocate for early intervention services regardless of what others’ opinions may be about your child’s “behaviors.” Stay on top of research and resources related to FASDs. Join an online parenting group so that you know you’re not alone.

If your child is older and displaying symptoms, there are a number of parenting approaches that have proven helpful for children with an FASD that you can begin using now. It’s hard to parent kids with an FASD because it requires changing everything we know and assume about parenting. This may mean examining your parenting styles and being intentional about changing how you respond and react to your child’s FASD symptoms. The same strategies that your parents used or that you use to parent another child may not work for a child with an FASD. Parents have to rethink discipline techniques. Things like cause and effect, behavior modification, and natural and logical consequences don’t work with a child whose brain is wired differently. It’s important to manage expectations and adjust to the environment. Parents can begin by examining their child’s behaviors and ask themselves, “What if what I’m seeing is connected to FASD? What accommodations can be made to alleviate their frustration and allow them to be successful?”

Children with FASD benefit from: Consistent routines. Repetition! ● Limited stimulation. ● Concrete language and examples. ● Multi-sensory learning (visual, auditory and tactile) ● Realistic expectations. ● Supportive environments. ●

Additional tips: Be sure to educate yourself on FASD. ● Don’t ask why, ask what. ● Don’t take it personally. (QTIP) ●

We Want to Hear From YOU! Scan the QR code to fill out a brief survey about the Insider’s Guide!

There is no cure for FASD, and the impact of prenatal exposure lasts a lifetime.

Many treatment options are available, including medication to help with some symptoms, behavior and education therapy, parent training, and other alternative approaches. No one treatment is right for every child, and every plan should include close monitoring, follow-ups, and changes as needed as our children get older. Your advocacy and support will make a profound difference for your child.

Remember to celebrate the victories, no matter how big or small, and take time to care for yourself along the way.

Insider’s Guide Special Edition | FASD 3