FASD and Sibling Relationships: Navigating the Complexities in Adoptive Families
When a family welcomes a child through adoption, it’s a journey filled with love, hope, and sometimes unforeseen challenges, particularly when the child has an FASD. One of the less discussed yet significant aspects of this journey is the impact of FASD on sibling relationships within the adoptive family. In this blog post, we look into the complexities of these relationships, offering insights and strategies to foster understanding and harmony.
Understanding the Impact of FASD on Siblings
FASD can manifest in various ways, including behavioral, cognitive, and emotional difficulties. For siblings, adapting to a brother or sister with FASD can be challenging. They might witness aggressive behaviors, face difficulties in communication, or feel the disparity in the attention and care provided by parents. This dynamic can lead to a range of emotions in siblings, from confusion and frustration to compassion and protectiveness.
The Adoptive Family Dynamic
The process of adoption itself can bring a mix of emotions for both the adoptive child and their siblings. When the adopted child has FASD, it adds another layer of complexity. Siblings may struggle with understanding why their brother or sister behaves differently and may require guidance in navigating these differences.
Strategies for Fostering Positive Sibling Relationships
Open Communication
Creating an environment where all children feel comfortable expressing their feelings is crucial. Parents should encourage open discussions about FASD, explaining it in age-appropriate terms. This helps siblings understand the challenges their brother or sister faces and can foster empathy and patience.
Individual Attention
It’s important for parents to spend quality time with each child, ensuring that siblings don’t feel overshadowed by the additional needs of a child with FASD. Recognizing and celebrating the achievements and interests of each child helps in building their self-esteem.
Encouraging Teamwork
Involving siblings in activities where they can work together can strengthen their bond. This could be as simple as a shared hobby or a team project. It’s also beneficial to involve siblings in therapeutic activities designed for the child with FASD, making it a learning experience for the entire family.
Professional Support
Families may benefit from seeking guidance from therapists who specialize in sibling dynamics and FASD. They can offer tailored strategies and support to each child according to their needs.
Building Understanding and Empathy
Educational resources like books or workshops designed for siblings can be helpful. They provide insights and tools for understanding and coping with the challenges that come with having a sibling with FASD.
Celebrating Uniqueness
Emphasizing the unique qualities and strengths of each child helps in creating an environment of acceptance and appreciation. It’s important to remind siblings that everyone has different challenges and strengths.
The Role of Parents
As a parent, balancing the needs of all your children can be demanding, especially when one has FASD. It requires patience, understanding, and sometimes, the ability to be a mediator and teacher. Acknowledge the feelings and experiences of each child and provide them with the support they need to grow and thrive together.
Navigating sibling relationships in adoptive families where a child has FASD is a journey filled with unique challenges and rewards. By fostering open communication, understanding, and mutual respect, families can build strong, supportive bonds. It’s about creating a family environment where each child feels valued and understood, paving the way for positive and enduring sibling relationships. Remember, every step taken towards understanding and empathy is a step towards a more harmonious and loving family life.
FASD and the Complex Interplay Between IQ and Executive Functioning
The difference between IQ and executive functioning is a bit like being able to solve a complex puzzle versus effectively managing your day-to-day schedule. Let me break it down with a personal example involving my son, who has FASD.
Think of IQ as the brain's ability to understand, reason, and solve problems. My son, for instance, has a wonderful knack for building intricate Star Wars LEGO sets. This task requires him to think critically, follow a sequence, and make sense of abstract concepts - all hallmarks of a good IQ. I love to watch him immersed in his LEGO world, piecing together a galaxy far, far away.
However, when it comes to executive functioning, things are quite different. Executive functioning involves the ability to plan, organize, and execute daily tasks. It's like the brain's manager, overseeing how we manage our time, prioritize tasks, and adjust to changes. Despite his talent with LEGOs, my son finds it challenging to get himself ready in the morning. Simple tasks like brushing teeth, choosing clothes, or packing his school bag can become hurdles. It's not that he's lazy - far from it. The challenge lies in his brain's executive function, which, unlike his IQ, struggles with organizing and planning the steps needed to tackle everyday tasks.
So, when you see him build those complex LEGO sets but then struggle to get ready for school, it's not a question of capability or effort. It's about understanding that his brain works differently. His IQ allows him to solve puzzles,but his executive functioning, makes the seemingly simple tasks of daily life more challenging. Recognizing and supporting these differences is key to helping him navigate his world.
Q in FASD: More Than Just a Number
Traditionally, IQ tests measure a range of cognitive abilities, including reasoning, problem-solving, and understanding complex ideas. For individuals with FASD, IQ scores can vary widely. However, it's crucial to note that an IQ score is not a definitive measure of a person's potential or limitations. In FASD, a standard IQ test might not fully capture the nuances of their cognitive abilities, often underestimating their true potential.
The Challenge of Executive Functioning in FASD
Executive functioning refers to a set of mental skills that include working memory, flexible thinking, and self-control. These skills are crucial for planning, focusing attention, remembering instructions, and managing multiple tasks. In FASD, these abilities are often significantly impaired. This means that a child with FASD might have an average or above-average IQ but still struggle with tasks that require organization, attention, and adapting to new information.
The Disconnect: High IQ, Low Executive Functioning
One of the perplexing scenarios in FASD is when a child has a relatively high IQ but exhibits poor executive functioning. This discrepancy can lead to misunderstandings about their capabilities.
Recognizing the gap between IQ and executive functioning in FASD is crucial for effective support. Some ideas that can help,
Structured Environments: Creating predictable, structured environments can help children with FASD navigate daily tasks.
Visual Aids: Using visual schedules or checklists can assist in task management and memory.
Explicit Teaching of Skills: Breaking down tasks into smaller steps and teaching specific executive functioning skills can be beneficial.
Patience and Understanding: It's important for caregivers and educators to understand the unique challenges faced by individuals with FASD and adjust expectations accordingly.
Understanding the interplay between IQ and executive functioning in FASD is essential for providing appropriate support and interventions. It's important to remember that intelligence in FASD, as in any individual, is multi-faceted and cannot be fully encapsulated by a single test or score. By taking a holistic approach to understanding and supporting individuals with FASD, we can better assist them in reaching their full potential.
Hygiene and FASD
As an adoptive mom of a son with FASD, I've discovered that bedtime routines can sometimes feel like a comedy sketch. Every evening, as regular as the setting sun, I pose the usual question to my son, "Have you brushed your teeth?" With the assurance and poise of an Oscar-winning actor, he replies, "Yes I did!" Yet, a swift check presents the unmistakable evidence: a bone-dry toothbrush. It seems he subscribes to the mystical notion of a magical toothbrush, one that promises sparkling clean teeth without ever encountering a drop of water!
His creativity doesn’t stop there. One evening, he presented me with a groundbreaking hygiene theory: "If you shower, you don't need to brush your teeth." I couldn't help but laugh. I really admire his dedication to finding loopholes in the world of personal hygiene.
So, what up with FASD and hygiene and what can we do to help our kiddos out?
Why Focus on Hygiene?
Hygiene, a vital part of daily living, can be particularly challenging for individuals with FASD. This group may struggle with routine tasks due to various factors such as sensory issues, cognitive impairments, or difficulties in understanding and remembering steps involved in personal care. Addressing these challenges is not just about cleanliness; it's about fostering independence, self-esteem, and social acceptance.
Tailoring Hygiene Education to FASD Needs
Simplified Steps: Breaking down hygiene tasks into simple, manageable steps can help. Visual aids like step-by-step picture guides for brushing teeth or bathing can be more effective than verbal instructions.
Consistent Routine: Establishing a consistent daily routine helps in reinforcing hygiene habits. This is so important and really helped our son. Routine provides a sense of structure and predictability, which is often comforting for individuals with FASD. For example every night after dinner son will shower. He might stand in the water and not wash but, he is in the shower every night, and that’s okay right now. We are working on how to use soap, washing and using a towel to dry off.
Sensory-Friendly Products: Many with FASD are sensitive to certain sensory inputs. Using sensory-friendly hygiene products, like unscented soaps or soft-bristled toothbrushes, can make a significant difference.
Engaging Learning Tools: Interactive tools such as games, apps, or storybooks about hygiene can make learning more engaging and less overwhelming.
Positive Reinforcement: Positive reinforcement and gentle reminders can encourage good hygiene practices. Celebrating small successes can boost confidence and motivation.
The Role of Caregivers and Educators
Caregivers and educators play a crucial role in teaching and reinforcing hygiene habits. Patience and understanding are key. Recognizing that everyone with FASD is unique and may require different approaches is vital. Support groups and resources for caregivers are so important to share experiences and strategies.
Community and Policy Support
On a broader scale, there is a need for more community awareness and policy support addressing the unique challenges faced by individuals with FASD. Educational programs in schools, community centers, and healthcare settings can raise awareness and provide practical support. Policies that ensure access to resources and services tailored to FASD can also make a significant difference.
To all the caregivers navigating similar paths, remember, you've got this – your strength, love, and humor are the superpowers that make you amazing caregivers and advocates for your children.
Understanding and Managing Picky Eating in Children with FASD
Understanding and Managing Picky Eating in Children with Fetal Alcohol Spectrum Disorders
FASD encompass a range of effects due to prenatal alcohol exposure, including physical, behavioral, and learning difficulties. One common challenge for parents and caregivers of children with FASD is managing feeding and nutrition issues, notably picky eating.
Let’s explore the reasons why children with FASD might struggle with eating a variety of foods and offer strategies to help manage these challenges.
Children with FASD may demonstrate picky eating habits for several reasons. Sensory processing issues are common, where children are particularly sensitive to food textures, tastes, or smells, leading to a reluctance to try different foods. Additionally, cognitive impairments associated with FASD can disrupt a child's eating habits and their ability to understand hunger cues. Some children also experience gastrointestinal discomfort, which can result in food aversions.
To manage picky eating, it's helpful to establish a consistent and routine mealtime, providing a sense of security and predictability. Gentle encouragement to try new foods, while avoiding forceful methods, can reduce mealtime stress. Engaging the child in meal planning and preparation can also spark their interest in different foods. Creating a sensory-friendly dining environment with soft lighting, minimal noise, and comfortable seating can make eating a more pleasant experience. Lastly, consulting professionals like nutritionists, occupational therapists, or speech therapists who specialize in feeding issues can provide valuable guidance and support.
Picky eating in children with FASD can be a significant challenge, understanding the underlying causes and implementing tailored strategies can make a meaningful difference. Access to resources and support for these unique challenges is vital, and as awareness of FASD increases, hopefully, more specialized services and assistance will be available to families, easing the journey.
Sleep challenges in children with FASD.
I wanted to reach out to discuss a topic that many of us face but don't often talk about enough - the sleep challenges in children with FASD. As we know, these challenges can be as exhausting for us as they are for our kids.
I want you to know that if you're dealing with this, you're not alone. Sleep issues are pretty common in children with FASD, and they can range from trouble falling asleep to difficulties staying asleep throughout the night.
How can FASD can affect sleep in children?
Neurological Impact: Prenatal alcohol exposure can affect the development of the brain regions involved in regulating sleep. Children with FASD might have alterations in their circadian rhythms and melatonin production, which can disrupt normal sleep patterns.
Difficulty Falling and Staying Asleep: Children with FASD often have trouble falling asleep and may experience frequent awakenings during the night. This can be due to hyperactivity, anxiety, or an inability to self-soothe and settle into sleep.
Sensory Processing Issues: Many children with FASD have heightened sensory sensitivities. They might be more sensitive to environmental factors like light, noise, or the feel of their bedding, which can make it difficult for them to relax and fall asleep.
Co-occurring Disorders: Sleep problems in children with FASD can be compounded by co-occurring conditions such as Attention-Deficit/Hyperactivity Disorder (ADHD), anxiety, or depression. These conditions not only affect sleep directly but can also make bedtime routines more challenging.
Impact on Development and Learning: Sleep is essential for brain development and learning in children. Sleep disturbances can therefore have a significant impact on the cognitive and emotional development of children with FASD.
Managing Sleep Issues: Addressing sleep problems in children with FASD often involves a multifaceted approach. This can include creating a calming bedtime routine, ensuring a sleep-friendly environment, and sometimes using behavioral interventions or medication under medical guidance. Consulting with healthcare professionals experienced in FASD is important for tailored advice and treatment.
Family Impact: The sleep issues of a child with FASD can also significantly affect the family, particularly the sleep and stress levels of parents and caregivers. It's important for families to seek support and use strategies to manage these challenges effectively.
Overall, addressing sleep issues in children with FASD is an important aspect of their care and can significantly improve the quality of life for both the children and their families.
What can I do to help my child?
Establish a Consistent Bedtime Routine: Create a calming routine before bedtime to help signal to the child that it's time to wind down. This can include activities like reading a story, taking a warm bath, or listening to soft music. Consistency is key, as it helps set the body's internal clock.
Create a Conducive Sleep Environment: Ensure the child's bedroom is comfortable, quiet, and dark. Some children with FASD may benefit from weighted blankets, blackout curtains, or white noise machines if they are sensitive to sensory stimuli.
Limit Stimulants and Screen Time: Avoid caffeine and reduce screen time, especially in the evening. The blue light from screens can interfere with the production of melatonin, the hormone that helps regulate sleep.
Physical Activity and Diet: Regular physical activity during the day can help improve sleep quality. Additionally, a balanced diet without heavy meals close to bedtime can also be beneficial.
Relaxation Techniques: Teach the child relaxation techniques such as deep breathing, gentle stretching, or mindfulness exercises. These can help reduce anxiety and promote a sense of calm.
Consult Health Professionals: Work with healthcare providers who are familiar with FASD. They can offer guidance tailored to the child's needs and, if necessary, recommend appropriate medication to aid sleep.
Lastly, and most importantly, don’t hesitate to seek professional advice if you're concerned about your child's sleep. Pediatricians, therapists, or specialists in FASD can help. They're there to support both you and your child.
As always, If you have any tips or experiences to share, or need a listening ear, please feel free to reach out. We can help with resources if you need.
For more information about FASD and sleep disorders watch Dr Jarrod Brown speak on Living with FASD
A Year of Impact and Growth
As 2023 comes to a close, we at MassFAS are excited to reflect on a year of achievements and growth. We want to thank you all for your support and involvement. We are incredibly fortunate at MassFAS to be surrounded by such amazing friends who have become like family, together navigating through the FASD journey.
Celebrating FASD Awareness in September
September was a pivotal month, marking FASD Awareness Month. Our apple picking event brought families together. A highlight was Boston illuminating the Zakim Bridge in red, raising awareness about FASD. Additionally, receiving a proclamation from the governor was a proud moment, recognizing the importance of our cause.
Expanding Our Team and Mission
This year, we were thrilled to expand MassFAS by welcoming a full-time FASD trainer. This addition is so important in enhancing our outreach and educational efforts, allowing us to support more families and individuals impacted by FASD.
As we step into the new year, we are filled with optimism and anticipation for what lies ahead. We remain committed to our mission of supporting individuals and families impacted by FASD and look forward to continuing our work with renewed energy and focus.
Thank you for being a part of our journey. Here's to a brighter and more impactful 2024!
Have a safe and happy holidays,
massFAS Team
More tips for Navigating the Holidays.
As the holiday season approaches, families around the world are gearing up for celebrations filled with joy, love, and festivity. For families of children with FASD, this time of year requires a unique approach to ensure that the holidays are enjoyable and stress-free for everyone involved.
Tips for a Happy Holiday Season
1. Maintain Routine: Children with FASD often thrive on routine. The holidays can disrupt these routines, leading to anxiety and stress. Keeping a consistent daily schedule, as much as possible, can provide a sense of stability.
2. Prepare for Changes: Talk about holiday plans well in advance. This preparation can include discussing who will be visiting, what the day will look like, and any changes to the environment, such as decorations.
3. Create a Safe Space: Designate a quiet area where the child can retreat if things become overwhelming. This space should be away from the hustle and bustle of holiday activities.
4. Sensory Sensitivity: Be mindful of bright lights, loud music, and strong scents, which can be overwhelming. Adjusting these elements can create a more comfortable environment.
5. Manage Expectations: It's important to set realistic expectations for both the child and family members. Not every event may go as planned, and that's okay.
6. Involve the Child: Find ways to include the child in holiday preparations and traditions in a manner that is enjoyable and suitable for them. This involvement can create a sense of belonging and joy.
Celebrating the Season of Giving
The holiday season is a time of giving and kindness. For families managing FASD, this can also mean giving yourself grace. Understanding that some traditions may need to be adjusted or foregone can be key to enjoying the season.
Incorporating these strategies can make the holidays more enjoyable for children with FASD and their families. It's about creating new traditions that honor the needs and preferences of all family members, ensuring that the festive season is a time of happiness, peace, and joy for everyone.
The holiday season, while festive and joyful, can present unique challenges for families of children with FASD. By maintaining routines, preparing for changes, and being mindful of sensory sensitivities, families can create a holiday experience that is inclusive, enjoyable, and stress-free. Remember, the most important part of the holidays is the time spent together as a family.
Tips to help make your holidays more enjoyable.
Holidays can be both exciting and challenging for individuals with FASD, especially children. Here are some tips to help make your holidays more enjoyable and less stressful.
Maintain Routine: Individuals with FASD often thrive on routine and predictability. Try to keep to their regular schedule as much as possible, including mealtimes, medication times, bedtime, and other daily regimens.
Prepare for Transitions: Changes in routine can be hard. Utilize calendars, visual schedules, or social stories to prepare your child in advance for holiday events or any differences in daily living.
Manage Sensory Overload: Holidays can be overwhelming with bright lights, loud music, and crowded spaces. Be mindful of sensory overload and provide a quiet, safe space where your child can retreat if situations or surroundings become overstimulating.
Limit Decorations: Keep holiday decorations to a minimum, especially those that are overly stimulating or might cause sensory issues (i.e., blinking lights, decorations with sound and strong scents).
Clear Expectations: Set clear, simple, and consistent rules and expectations. Individuals with FASD benefit from knowing exactly what is expected of them.
Use Visual Aids: Visual aids such as picture cards can help in explaining the events of the day, transitions, and appropriate behaviors.
Keep Gatherings Small: Large family gatherings can be overwhelming. Consider having smaller, quieter celebrations with fewer people, or plan for short visits and breaks in the day.
Be Flexible: Be prepared to leave events early if your child becomes overwhelmed or changing plans in the moment if something isn't working.
Focus on Familiar Foods: Holiday meals can be challenging, so include familiar foods that you know your child will eat.
Promote Inclusion: Involve your child in holiday preparations in a way that suits their abilities, like helping with decorations, setting the table, or choosing a movie to watch.
Practice Coping Strategies: Equip your child with coping strategies for when they feel overwhelmed, such as deep breathing, a quiet space, or a favorite toy for comfort.
Communicate with Family and Friends: Inform family and friends about FASD and your child's specific needs to foster understanding and support.
Plan for Downtime: Make sure there are opportunities for rest and downtime during the holidays to prevent overstimulation.
Acknowledge Achievements: Praise and acknowledge your child's efforts and achievements, no matter how small.
Self-Care for Caregivers: Look after yourself too. The holidays can be stressful, and taking care of your own well-being is essential to provide the best support for your child.
The key is to understand your FASD superhero’s specific needs and plan accordingly. The goal is to create a holiday experience that is enjoyable and inclusive for the entire family. You can do this!
Happy New Year!
By Kristen Eriksen.
Happy New Year to all! I am suffering from writers block lately when it comes to this blog. I have a lot to say, but don’t know how to put it on paper! I am struggling with the idea of New Year’s Resolutions. They imply that we need to identify the things we are doing wrong, or something we need to improve on. I dwell on that all the time and try to improve daily anyway. I think everyone who is supporting someone with FASD (Fetal Alcohol Spectrum Disorders) is always trying to change and improve. So, I want to put a different spin on New Year's Resolutions for our FASD community.
What if we look back on all the GOOD CHANGES that have happened this past year? I was talking about this with a very dear friend and mentioned that it is hard to remember the “wins” a lot of the time. She reminded me that often that is easier to talk with a good friend who can see the forest through the trees like she can with me and my family. You know, it is the way you don’t notice that your kids are getting taller until someone who has not seen them for a few months can see the glaring change? Well, let’s all get together with a close friend in person or by phone, and think about how things have IMPROVED over the past year. We changed our expectations and plans around the holidays, and they were calm this year! What changes have you made that have made things easier for your family? Laura has started homeschooling her son and can see that he is less anxious because he does not have to “go” to school. They enjoy reading together and he loves to go to the library. Those are huge wins for her family! Think about some of the positive changes you have implemented for the better. We all know we must make that huge resolution to “Think differently rather than harder” so just go with that as the FASD New Year’s Resolution every year! It does a lot of good!
The Holiday Season Is In Full Swing.
By Kristen Eriksen.
The holiday season is in full swing as I sit to write today. We have all enjoyed Thanksgiving 2022, or should I say we survived it? Did you have the Thanksgiving that you wanted to have? My guess is that you probably did not have a traditional one. Was it calm? Relaxing? If you are raising someone with FASD (Fetal Alcohol Spectrum Disorders), it may not have been like in your past. Did anyone melt down? Did you have to leave early? Did you wish you had skipped the whole thing? Well, Laura and I are going to tell you some of the ideas we have used or wish we had used to change your thinking about how to celebrate the holidays, or any out of the ordinary day in our journey. Our kids have extra needs and communicate them in different ways.
Many of the reasons that the holidays are a challenge is because of the
Loss of routine
Over-stimulation
Sensory overwhelm
Junk food & late nights
Lots of travel time
Social demands and misfires
Unmet expectations
First, remember this-
Second, if you haven’t figured this out yet, your holidays will not be what you ever pictured for your family. That really is true for everyone, but more for parents with children with special needs. THEIR expectations are different from ours. Transition and change in routine, whether you are talking holidays or just any unexpected change is so overwhelming for our kids.
I have researched many blogs and articles about handling the holidays with children with special needs, and compiled the suggestions into one list of the most applicable suggestions. Most have similar ideas that we can all try. I will elaborate and/or give my somewhat unique perspective on the ideas listed below.
Invest in You
Do Your Own Thing Guilt-Free
Keep It Simple
Less is More
Stop Trying to Make Everyone Else Happy
Leave Early
Pick & Choose Where You Go
Bring Food
I am lumping these 8 together because they all have a bit of the same idea so suggestions can fit into any of the above categories. If you don’t invest in you, you can’t keep giving like we do. Buy prepared items instead of making them, offer to bring something that is easy for you. Bring things that your kids like and want to be sure that those choices are available for them. Bring what your kids will eat, or a treat that is special. Bring low sugar items, caffeine free sodas etc. if those additives cause more trouble for your family.
Do your best to get a good night's sleep before a holiday gathering. Cancel last minute if you are just not feeling up to it or your kiddos are having an off day. Sometimes I make an offer of a certain length to stay if I don’t outright cancel. Think of yourself and your family first.
Honestly, don’t go if it seems like it will be too much. Politely decline an invitation and stay home! I often tell my family that I don’t honestly know if we will be able to make it or not. I will let them know either way once I know how our day is going. Have a quiet holiday season and skip all the gatherings! That may just be the best year ever!
Bring two vehicles so that you can make a clean getaway quickly without removing the entire family. Plan for how long you will stay and be sure the host knows that this is the plan. If you see things starting to go south, then it is time to go. I bet you all know when enough is enough, or that it is better to get while the gettin's good! Set a time and then say your goodbyes before a meltdown has a chance to happen.
Have small gatherings during the season with only a few people at a time and have some at your own home if that is more comfortable. I must add here that currently my house is a mess, so I won’t be hosting anyone at my home!
If you really think your child may have a very difficult time at a certain function or party, politely decline. Cancel last minute if you see a difficult day from the beginning
My best rule of thumb for years now has been to do ONE thing a day. No more. The second event always ends up in disaster. Too much stress and need for transitioning. Too much unfamiliar territory.
Supervise, supervise, supervise!
I cannot stress this enough! Our kids turn on a dime, and we really need to be checking on them constantly. Our kids dysmaturity means that they are younger than we or others think that they are. They will act much younger than their age. If they are acting 6 years old, you would not leave them unattended during an entire function. Because of this, many ideas in this next part of the list can really help to keep them occupied.
Think Like a Boy Scout
Bring Activities
Noise Cancelling Headphones
Give Them a Job
Cushion Overstimulation
Familiarity Breeds Calm
Pre-Teach Sensory Regulation Tools
Shared Activities to Connect Family
Be prepared! Bring Gingerbread decorating kits, an iPad, an active game for all to play together, your child’s favorite game, a paper tablecloth that has activities on it like tic tac toe, coloring, crosswords etc. I have found them at Walmart, Target, CVS etc. Bring ingredients to make hot cocoa, s’mores, crafts to make Christmas ornaments, markers, crayons, playdoh. Be sure to remember the supervision here! You will have to “DO WITH” them to avoid mishaps!
Sensory ideas are a MUST! This is why I also mentioned bringing an iPad. Some kids need to hide in a corner and decompress with headphones or ear plugs. If grandma always demands or leans right in for a hug, tell her to ask first! I remind my mom of this a lot. It breaks my heart, and she is sad because she has so much love to give! It is just too much for my sensory defensive daughter. She is learning to speak up for herself, too!
Overall, you would know best if your kiddo could handle a job, but make it just a simple little one, so that the job does not become more of a stress. You know your child best, so if this is not a good idea for your kiddo, don’t even try it. Maybe collecting coats when people arrive and retrieving them when they leave. Collecting wrapping paper when presents are unwrapped or passing snacks and hors d’oeuvres. More than anything, our kids do not know what to do when they are just visiting with others. They need activities. So, bring them! There are so many fun games for groups of people, but that typically gets too loud for my kiddos. Arts and crafts, hands-on activities work best for us.
Check the Itinerary
Share the Plan
Discuss Expectations & Support Strategies
Itineraries and plans are often a lot for our kids because they just cannot handle it all. If it is too much, plan to arrive late or leave early. Again, stay home and have small gatherings throughout the holiday season
My twins perseverate over plans, the unknown (i.e.. Not knowing what will happen at an event, how long we will stay or who will be there) so I don’t share too much of the plan too far in advance. That usually happens as we are about to leave anyway, so I don’t want to fuss about it for days. That is why we plan only one thing, take two vehicles, and expect that we may leave early.
Expectations from me or others are usually not a discussion that I make very long. For our kiddos, expectations are just premeditated resentment. If I give my kids a list of expectations, chances are quite good that they will not be able to do some of them or the demands and worry about knowing all those expectations will stress them out. Then I, my husband or family become frustrated, mad, or resentful. I try to keep my expectations VERY simple, not lowered, just lessened. If they start to have a tough time, there is no way they will handle “Just a few more minutes” or be able to “just calm down” or “stop that”. Thank you, Jeff Noble, for that insight! I get so many great suggestions from Jeff Noble’s FASD Success Show and Facebook group! If they are ready to go back home, then it is time to go back home.
I am adding this last suggestion for you.
Every Plan or Tradition Can Be Changed
I give gifts before Christmas often, because my kids perseverate over “getting it”. I used to try to hide gifts, but it just got too complicated, I couldn’t find great options for hiding, and could not take the constant bugging, questions and searching for items anymore. I try to just plan to give gifts for the week leading up to Christmas. I wish I had instituted the “Four Gifts for Christmas Rule”. You know, one thing to wear, one thing you need, one thing you want, and one thing to read. I also think for old enough kids especially gifts that are events or experiences are better, to leave memories of going to cool places with the gift giver.
Even the idea of Santa, the Easter Bunny etc. can be a lot for our kiddos. They can be extremely anxious about Christmas and other holiday characters. My twins freaked out over the idea of any magical being entering our house! My kids do not have “stranger danger” in general, but they do for some weird looking guy, elf or character entering our house when they are asleep? Big no there!The whole premise of Santa is that he knows if you have been bad or good. What if a child feels he is not good enough? Doesn’t that happen to our littles often? No matter how they reassure him, Laura’s son thinks that there is a good possibility that Santa will not come to their house. The anxiety can be crippling!
I am sure there are many more ideas and suggestions that we have not thought to add. Add them to the comments if you have any that you have found successful!
Help with School
I loved school when I was a kid. Now, I find that I hate school. I am not quoting my twins here, I am stating that, as a parent of special needs children, I HATE SCHOOL! I hate what school is like for my twins. It is an unsupportive place for my twins with FASD (Fetal Alcohol Spectrum Disorders). The twins hate school, too. They are not able to articulate why, but they struggle about going every morning. It is much better than it used to be, but for the longest time they have been labeled as the oppositional child who is not willing to do what is asked. The school sees behaviors, not symptoms of a disability. Teachers view their symptoms as willful purposeful behavior. I have had to slowly, respectfully (well, sometimes this gets hard to do when things are going very poorly) and tactfully try to leak some FASD info to them over the years.
When I think back on it now as they are halfway through the 9th grade, it really has not been a supportive environment for my twins overall, EVER. (Sorry, I think there will be a lot of capitalized words in this blog post, unless I change it to bold letters. We’ll see!) That is not to say that we have not had supportive staff who try to help. But they are uninformed about what turns out to be the primary diagnosis for my twins, and 2 ½ times more prevalent than autism. The invisible disability of Fetal Alcohol Spectrum Disorder.
The word school is triggering for me. “Do I have to go to school tomorrow?,” phone calls from school staff, incident reports, comments on home notes, assessments that state behavior is avoidance oriented, attention seeking. Individuals with FASD use 3 times as much energy just to BE at school, ignore noises, focus on directions, sit still, understand directions and tasks. When they are struggling at school, I always ask “what was happening before this struggle, and before that, and look back even further before that. When I get the entire story, I can often see where they were not supported enough to keep plugging along. Believe me, I know most people don’t have to do that with children at age 15, but I know that I do. I know how much support they need because of their brain deficits. I know how often I see that they have memory issues that complicate them in everyday life. That is probably the A #1 Issue in school where they are trying to build on past knowledge, which unfortunately is knowledge that my kids often cannot access.
Advocating for school support has always been part of my parenting job, at first because we did not have any diagnosis's. Then we got some that were only part of the whole picture. First, it was ADHD, and the urging was to medicate. My twins were born at 32 weeks, small for their gestational age, with drug and alcohol exposure and were removed from their parents. The powers that be at school tried to bully me into medication. “Not medicating your child when it is recommended is like not filling a prescription for glasses, Mrs. Eriksen.” Well, tell me about the side effects of glasses vs the side effects of medications on my babies already affected little brain! We eventually ended up with lots of medications, and that is so challenging. Starting meds, increasing, or decreasing doses, looking for side effects, and positive changes is a long and bumpy road.
Soon after that, I was seen as the “problem.” “Mrs. Eriksen, do you use consequences with the twins?” ARE YOU KIDDING ME????? How do you consequence a child behaving like a dog to keep others at bay? Put them in a doghouse? How do you go with a consequence for things that your children do out of fear? Running out of a classroom that is loud and very busy is a trauma reaction, not a disobedient child who is either seeking attention or avoiding work (according to all the behavioral experts at school). They are scared to death!
As I learned about attachment and trauma next, I more fully understood the pain of any child not living with their biological family. The primal wound is so deep and so real. Right after birth for my twins, or whenever a child Is removed from their home, they are taken away from all that is familiar to them: Their parents' voices, music, smells, sounds of their home, literally everything is removed. Everyone thinks it is so wonderful when someone adopts a child and feels that the new parents give them what they so much need. But there is also so much loss for these children. I am not really advocating for family reunification, per se, although there are certainly times when that is applicable. It never was for my twins, and rightfully so. That is a topic for another day. Attachment, however, is another matter. I do not look or sound like their birth mother. They are part Hispanic and have always been drawn to Spanish food and music. Like it or not, there could be many aspects of who I am, my temperament, chattiness (I certainly have the gift of gab!), interests sometimes are just glaringly not compatible with them. I certainly cannot expect them to adjust to me as much as I must adjust to them. “Poorness of Fit” it is called. Sounds kind of sad to me but it is absolutely true.
I had a hard time attaching to the twins, and they to me. My son was a fussy, irritable baby. I wore him forever. He was clingy forever (until the teen years now!) and for most of his young life, he slept with me. My daughter does not like to be touched. I thought she was such a good baby, but now I feel so badly that she did not really seem to want me or trust me. She recoils if I try to hug her or caress her.
From attachment therapy, I learned about felt safety. We can “be” the safest, nicest, most caring person under the sun, but if our child doesn’t “feel safe” with a person or in an environment, it does not matter that WE know it. They need to feel it themselves, and oftentimes they cannot.
When we got the FASD diagnosis, I thought it would be helpful because THEN we would get the right supports, staff, school programming and IEP (Individualized Education Program) goals to really reflect what the challenges were, with a plan on how to move forward. The diagnosis got us nothing, because the information that schools have about supporting individuals with an FASD is not there. None, Nil, NADA. Just more work for me to try to advocate and educate.
But that is not the worst of it! Every year that my children are incorrectly supported in school is a year that the twins cannot get back. Every year that they feel less than others because they just do not “get it,” they just have failure after failure.............until they feel that they are a failure, and just start to give up. A little at a time.
Don’t get me wrong, I also see that I, too, was not aware of how I needed to parent them differently. Until we got the correct diagnosis. Then I read and studied, attended conferences, and joined coaching groups to learn about FASD. Schools are NOT AWARE of updated information, and do not like to be told what to do, what to train staff about, and certainly do not want to hear that they do not know everything. Jeez, I do not know everything, but I certainly will not let that stop me! GOOGLE it for God’s sake! Research what you don’t know!
What I learned that is probably most important to discuss with school staff is that alcohol affects the brain AS IT IS DEVELOPING, so there are permanent changes there. There is enormous hope for people with FASD, but the way to get the best results is to have proper support and accommodation. And that is where the walls went up in school.
Schools so often have a “Wait and see” mentality. They are waiting for children to REALLY fail before they investigate further. They are trying to teach to the masses, even if they say that they individualize. The old adage of trying to fit all the square pegs into the round holes. I get that initially, but when you keep pushing down on those square pegs, you are trying to ignore their shape, mold them to fit in. That is certainly not individualizing.
Many families in our support group are struggling a lot with school issues right now. This blog is for all of you. Some of the tips that I have after this long rant:
Learn all that you can about FASD.
Read “Trying Differently Rather than Harder” by Diane Malbin.
Join FASD support groups.
Get an FBA (Functional Behavioral Assessment) from school, not because it will be valuable information, but because schools want them done. They will tell you how the behaviors are attention seeking or avoidance behaviors. Here is where you may face your first battle. Our kids are not showing behaviors, they are having symptoms of their brain-based disability. There is an enormous difference. Calling it behavior infers that it is willful, purposeful, and manipulative. It is NOT. Staff at schools need to realize that we need to say symptoms and then determine what is causing that symptom. Too much noise, hunger, disagreement, confusion, misunderstanding, sensory overload, time for a break? Then make those accommodations. They may need different accommodations each day. So, they need someone with a close relationship to them to be able to see the cues that it is time for accommodation.
You will also need a full neuropsychological battery of tests. I hate to say it, but if you need an FASD diagnosis, you need to ask about it or it may not be considered. In the short term, I would try to get a pragmatic language assessment and sensory integration assessment. These will show where some of your child’s difficulties stem from. Then, talk to school about the importance of relationships as mentioned above.
The other suggestion is to get informed through the many FASD podcasts, books and support available, most notably around the world.
This is Jeff Nobles school PDF Understanding me: my FASD
(https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.fasdsuccess.com%2Funderstandingmefgb%3Ffbclid%3DIwAR1cVwxhqSs7H71dO-JAGVIRTcac6dzYDaG418D8Cb6IV9VqE0cvwUOtvTE&h=AT3_pwZ4DEzlBDJhPxmz5eBQCVqPoeboMIN_Y7oyKkHgXVyNMkHmgA9lBa2rvFSI6d0BpJqNB20kayNQDA9Kf3IzrkV1d2Z_9G8THXjDXKRpex9O3VAlKN8MB3lDxT_HqBanQZKQPVE&__tn__=R]-R&c[0]=AT1m6-9AH2L_ArOSpRZHCq51lVejuZyOF_hVAPDQpGCWmD3DUvd7zwc-ceWtlCTUnIsPmUvbJu5erOpAChjk5kdP7N1dz5NUtJThyiK1u2vd3x9j_mmXYcktteQCTS3zY8L71VqmTgjDsVgvz3aJ_3mqvYRTKi2Lz-kW11lTfIMLSXB0SNSF)
https://www.fasdsuccess.com/podcast: Episodes about schooling-
30 Sheila Burns “My Kind of Mind”
52 Tracy Mastrangelo
81 Natalie Vecchione and Cindy LaJoy “Homeschooling kids with Disabilities”
91 Danna Ormstrup
118 Mark Courtepatte
Natalie Vecchione has a podcast and authored a book about homeschooling that is very well recommended. https://www.fasdhope.com/ Her book is called “Blazing New Homeschool Trails. It is available on Amazon at https://www.amazon.com/Blazing-New-Homeschool-Trails-Developmental/dp/B096LYJCJW. Homeschooling is not for everyone but seems to be a great option for many people with FASD. Who knows them better than their parents?
This is a good start to what families need to know about helping at school. We have some great handouts on our website, and I can share more later. Please reach out to us for help as well!
There is Hope in Help and Strength in Numbers
By Kristen Eriksen
I can credit my mother with showing me how to put on my rose-colored glasses and how to view life through them. I have lost mine more times than I can remember now. I always find them and try to peek through the rosy hue of those lenses, but man is it hard to do lately!
There are so many great positive memes and quotes all over social media that can help, and some have great pictures. This one struck me recently, so I will share this as my introductory message!
Parenting children is hard. Parenting children with an FASD diagnosis is so much harder, and the journey can feel daunting like this ladder on the right. I chose the ladder on the left to highlight how I need to look at things on my parenting journey.
I listen to lots of FASD (Fetal Alcohol Spectrum Disorder) Podcasts and am involved in many coaching support and Facebook support groups about FASD. They always deal with and talk about the struggles that we all face, but they also focus enormously on finding the wins we have, strengths our children have and some hope on our journey. One podcast is “FASD Hope” which obviously, by virtue of the title, looks for hope in every episode. Laura and I were recently interviewed for Natalie Vecchione’s “FASD Hope” Podcast, and she asked us about our messages of hope. We shared some of our ideas, but now I want to discuss a lot of the little hopes and wins we may forget to see along the way. You can listen to our episode here:
FASD Hope: 149 - MASS FAS - A Conversation with Kristen Eriksen and ...
I look for hope in the little things. The fact that, even though my teen-aged twins are too cool for their mom, they do spontaneously say “I love you.” They do tell me that I make Mac n cheese better than dad. My sensory defensive daughter, who hates to be touched, hugged, or kissed, will sit next to me, and slide her toes over to touch my leg. That is her hug, and I just have to accept it, stinky feet, and scratchy toenails and all!
Some mornings, as I start to get out of bed, I need to take a big sigh. I do not want to face a morning battle to get the twins off to school. It is always a battle. Sometimes, it goes more smoothly than others, and I sit and revel with that as I sip my morning coffee alone in peace after they are on the bus.
For quite a while, I have tried to get up earlier to make them breakfast and serve them in bed to give them a nice start and let them know that I love them. Honestly, it is also a way to wake them up gently, so things go more smoothly. Lately, my son does not want to eat it, so then I am mad about the effort I put in and the waste of food. (Sadly, I usually eat his chocolate chip pancakes, and have gained weight......I do not even like them but hate to waste!) I have stopped making them for him now but will start it up again in hopes of a reconnection. Lots of things go in waves for us all, so I will ride this one out.
Secondly, they do go to school. Many families struggle with school refusal, and I hardly ever do. (I pray I am not now cursing myself!) My children are in out of district schools, not public schools. That in and of itself is a big win for us. Their schools are not FASD informed, but I work on them a little bit whenever I can, and changes are being made.........slowly.
There are so many small wins that we all miss if we are not trying to find them. My twins are both working a bit and getting rave reviews from the mentor/boss about how hard they work. They do not do these things a lot at home, but I see that I am instilling good values in them. I know how hard they work at school, so I try to be sure they get their time to reboot after school. Chores are small and sometimes sporadic around here. I have to accept that and see the win in what else they can accomplish.
We do have troubles most days, but we do have wins too. It is so easy to forget them when our kids are struggling. I have found that now that I know so much more about FASD and how my children’s brain works differently, I have been able to make so many more changes in HOW I PARENT, that then I can see so many more ways that things have changed for the better. At the end of our FASD Hope podcast, Natalie came up with a nice little catch phrase that really summed it all up. “There is Hope in Help.” I have seen my children grow and change more since I have grown and changed myself through finding help. Learn from me! We have a hard job, and the most crucial thing that I have learned is that I cannot do it alone. I have found so many special people to add to my tribe, have attended seminars, am in coaching groups, and I am running our local support group with Laura. Honestly, I have learned as much from these great parents as I have been able to teach and help them. Do not do this alone. It is impossible to do this alone.
I have learned to have a mantra when things are going sideways. Mine is either “Just keep swimming” (Dorie from Finding Nemo) and “Disengage” (from The Incredibles). I do not always remember to use them, but they help. I say I am sorry when I get upset, triggered, or forget to try to accommodate them. I have tried to evaluate when we have difficulties finding out what they are seeking, and then try to approach the problem differently. I think I have already mentioned that everyone needs to read “Trying Differently Rather Than Harder” by Diane Malbin.
Yesterday, I also listened to three great episodes of FASD Success Show with Jeff Noble, so I want to share them here as well. A while back, he did an episode called “Ask Me Anything.” Episode two is his most recent episode, and I thought it was the BOMB!!!! So, I then went back to listen to the first “Ask Me Anything” episode. I will link them both below along with an episode with an adult woman with FASD who just blew me away with her candid explanation of her life, and insight into her disability. Here are the links to all these episodes.
#112 Ask Me Anything about FASD with Jeff Noble - FASD Success
#126 Ask Me Anything about FASD with Jeff Noble ROUND 2
#125 Heather Vickers 51 Years of FASD Experience - fasdsuccess.com
Always remember to look for the wins, as small as they may be, and find “Hope in Help.” If you are in Massachusetts looking for support and friendship with others who “get it”, join our group. Go to massFAS, or MASSFAS - Home - Facebook and message us! If you are looking for more training and coaching ideas, we can help you find them. Just keep swimming!
Today, our son is in a CBAT
I have been trained to educate and work with caregivers and parents who have children with an FASD (Fetal Alcohol Spectrum Disorder). On a regular basis, I meet with parents of children with FASD. I have seen traits that many of these children have in common. I’ve also seen some of the challenges that older kids have faced.
Our son has a serious neurological disorder (ND-PAE) Neurobehavioral Disorder Associated with Prenatal Alcohol Exposure. He has brain damage. Unfortunately, he was exposed to heavy amounts of alcohol and other drugs before he was born. Since school started this year, his behavior has changed drastically.
Today, our 8-year-old son is in a CBAT. We have been trying to avoid this for so long. Over the last couple of weeks, it has really hit me how much help we really need. He was diagnosed with an FASD at age 4. He is such a sweet little guy and tries so hard to make people happy. However, because of the brain damage caused by prenatal alcohol exposure, he cannot control his emotions. He has become very unpredictable. We are dealing with physical aggression, mood dysregulation, sensory processing issues, pica (eating and chewing on things like paper, carboard, paperclips, and plastic objects), playing with his feces, anxiety, ADHD, and sleep issues.
Although he was getting therapy at home, he needs it at school. For two years his school continually told us that he was fine. They continued to put him in situations he could not handle. He was kept in a classroom with 24 students. He was told to do the classwork of a 3rd grader (he still cannot write the alphabet). Eventually the pressure put on him was too much. He couldn’t take the punishments at school for behaviors which he cannot control. He couldn’t keep up with the schoolwork. Eventually, he refused to go to school and became aggressive at home.
I visited my son yesterday at the Community Based Acute Treatment (CBAT) Center. He is safe and is being cared for. They can keep him safer than we can right now. I am now realizing just how much care and support he really does need. No matter how much I love him I can’t fix his deficits, but I am sad. I am sad that he doesn’t get to be a typical little boy. I am sad that he struggles so much.
Schools need to be educated about FASD. It is so common, and we see it every day. Sadly, many schools treat our kids as if they are behavior problems. We, the parents are looked at like we are crazy or do not give our kids consequences. Our son needed services and help years ago at school.
Will the school listen to us now? I don’t know. I really don’t understand how schools can operate this way. They wait for children to fail repeatedly. This is a broken system. I don’t know when our son is coming home, and I don’t know what the school is going to do next. We do have an advocate and we are ready to get what our son needs.
There is no cure for FASD. It is a lifelong disability. However, with appropriate, FASD-informed services and interventions designed for people with their specific neurological needs we can improve the quality of their lives.
Its FASD Awareness Month!
Happy September! It is now FASD Awareness Month! Laura and I have been working on a few things this month, as is anyone who works for the cause of FASD. In our outreach to people in this field, we have tried to come up with some interesting ways to continue to spread the word to people who NEED TO KNOW more about it or need additional support for it.
Yesterday, I listened to a great podcast interview with Audrey MacFarlane, the Executive Director of CANFASD Research Network. She is inspirational and has a lot of great projects in the works for Canada, but also for anyone interested in FASD. Give it a listen, it helps give us more hope! https://www.fasdsuccess.com/blog/podcast-episode-121.
I also sat in on a call with FASD United. They have a weekly update on how things are moving along with the FASD Respect Act and other work they are doing. It is always good to hear what progress is being made. These calls are open to anyone interested, so check out their website https://fasdunited.org and you can get information about joining these calls to help you see hope for the future. They are a fabulous organization doing fantastic work for all of us!
For FASD month, we are having a small private gathering with the families we are involved with currently, which is an ever-growing group of wonderful parents, children, and young people. We are keeping this one private, so I will not be sharing too much, but we are excited to meet in person this month!
RUNFASD is also happening across the world! Laura and I are both participating with our families. It is very casual in that you can do 9 of whatever you can: 9 miles running, walking, or biking, 9 jumping jacks............whatever you choose as long as it is in multiples of 9. My family is planning to “9 it up” when we meet with our massFAS families. The 9 is for September and also represents the 9 months of pregnancy to abstain from alcohol. You can find information about joining RUNFASD at the FASD United Website at https://fasdunited.org.
We have also petitioned the governor, Charlie Baker, to issue a proclamation naming September as FASD Awareness Month. It is not finalized, but the request has been made, and wording has been sent. I have had several emails back and forth with the aide who coordinates this, so I am hopeful. I will let you know when it happens!
Next, Laura and I will be featured on the first “FASD Month” episode on the FASD Hope Podcast with Natalie Vecchione. If you do not know of her and her podcast, you should check it out. She and her husband have an inspirational podcast, FASD Hope, where she always has hope as the theme intertwined in her interviews and messages. Well, her September 6th interview is with Laura and me. We recorded it a while ago, so I do not even remember what we said, but it is about our new roles here in Massachusetts and some of our hopes and dreams for massFAS. She is the mom to a 20-year-old son with an FASD who has also written a book about homeschooling:
And one last silly tidbit! The red shoes at the beginning of this blog? They are my son’s. We went back to school shopping, and he found those awesome red shoes! I knew if I suggested red, he would say no...........just because I suggested it. He gravitated right to them, as if they were a beacon! I am happy!
So, we are really excited about the future for all of us. Every little bit counts, and the more of us advocating, the more WE can do for FASD.
LET’S ROCK OUR RED SHOES!!!!
OK everyone! September is FASD Month, and September 9th is FASD Day. Why 9/9? To remind everyone to abstain from drinking alcohol for the nine months of pregnancy to prevent FASD. Some great advocates for FASD started this movement in 2009, so then it was 9/9/09. The Red Shoes Rock Campaign was started by RJ Formanek, an adult with FASD, who works very hard to advocate for FASD. Check it out!
So, go get your red sneakers or shoes, and show them off throughout the month of September, and especially on September 9th!!!!!
We must not let all these children be forgotten.
When Laura and I first took this position, massFAS was already working with legislators in Massachusetts on a bill to help and support families with children (and adults) with FASD (Fetal Alcohol Spectrum Disorder). Well, the proposed bill was to change the definition of developmental disability to the same definition that the federal legislation uses. One of our biggest goals from the get-go was to do our best to get it passed this year. We found out on Monday that it did not pass. This happens with a lot of proposed bills. It makes me sad and frustrated, especially because those of us who live with this disability or care for someone with it know how badly help is needed. We had to search on our own to find education about every aspect of FASD from characteristics, dealing with school, finding appropriate services, understanding neuropsychological assessments, learning different strategies, and parenting techniques to foster our children’s growth and development and understand the difficulties that they face with this invisible brain-based disability.
One of the most rewarding things for Laura and I is that, because of our increasing social media presence, we have been contacted by many more parents and caregivers who we are raising and supporting people with an FASD. Good because it is our goal to reach and assist more families, yet sad because there are so many of us out there. The most important thing I have found in chatting with new families that we contact is that we sure have a great group of very well-educated (self-taught) parents who have done their homework! I know that Laura and I sure did, and I am in awe of all the warrior parents I have met!
That said, it should not be that way! When someone is given a diagnosis of FASD, there should be a clinic that you can go to, a list of service providers for education, counselling, therapies and other related services for parents and caregivers. That is what we are trying so hard to get established in our little state, and for the country with the FASD Respect Act spearheaded by FASD United.
As we continue to grow our little massFAS parents' group, we surely hope that means more influence as we band together to have our voices heard.
The most frustrating piece of this entire puzzle, though, is how little the world seems to know about FASD. There is a lot of new research out there that shows that:
· FASD is quite common worldwide, 2 ½ times more prevalent than autism (May, UNC Chapel Hill 2018)
· FASD is a brain-based disability not based on behavior, but based on brain differences with cognitive deficits
· FASD is often mis-diagnosed or not even considered as a diagnosis by physicians, and
· FASD parenting and education needs to be based on neurodiversity, not discipline.
And yet, the up-to-date information is not getting to the agencies that could really affect changes. The CDC (Centers for Disease Control) had a Fetal Alcohol Center of Excellence, but that was defunded a few years ago. In this current legislative session in Massachusetts, they voted to allow persons with developmental disabilities rights to go to colleges, and yet FASD is not recognized as one of those developmental disabilities. The government is enormously focused on prevention of alcohol exposure to infants, which is a valid and noble cause, but they are not supporting those individuals who have already been exposed to alcohol prenatally. That just baffles me! We must not let all these children be forgotten.
Laura and I will not stop advocating for this. We need all the help we can get from families and friends, though. Right now, we must start over, reexamine the bill we are asking for, rally the troops, and get the message out there. We have some great support through the ARC of Massachusetts, the Disability Law Center, Massachusetts Developmental Disability Council, and are asking for help from FASD United. We have several lawmakers who are very committed to this cause. We will look for more agencies to help and will try again. I know that, with our ever-growing group of super champion parents, we will get noticed!
FASD United is working diligently on federal legislation, The FASD Respect Act. Please, please, pretty please.........go to their website, and contact your Senators and Representatives about this important legislative effort. The end of the fiscal year for legislation on the Federal Level is Jan 2023. We still have time! Passage of that legislation would help us tremendously.
Don’t be an Air Plant, AKA Self-care
By Kristen Eriksen
So, the first time we had any in-home services in my home, maybe 5 years ago, the worker asked me what I did for my own self-care. My answer was that I was way overdue for my mammogram, colonoscopy and annual physical. I kid you not, that is all that I considered for self-care for me. Honestly, I did not understand what the term meant! This is not to say that I did not have my own self care practices like exercise, hydration, time with friends, massages, etc. but with twins with FASD (Fetal Alcohol Spectrum Disorder) + many other diagnoses, I had long forgotten about or had given up many of those regular habits.
I was already planning to write a self-care blog when I ended up listening to the most wonderful interview on Robbie Seale’s FASD Family Life Podcast with Jillana Goble, that made me feel so much more motivated to write this, almost like that podcast episode is the preamble to my little blog. Robbie is doing a summer series which she calls “Mom Talk” where she chats with other moms on the same or similar journey, sharing stories, strategies, etc. I strongly urge you to listen to this episode by using this link. I think the plan had been to talk about the book that Jillana had written (called “A Love-Stretched Life”) but they chatted like two besties initially. It was a refreshing exchange, and just felt like I easily could have been in that conversation with them. They talk about this “Complicated Mothering Journey”, grief and loss, and some of the challenges that we may face. (I will from now on call it a complicated parenting journey to acknowledge that this is about mothers, fathers, grandparents and many other kinds of caregivers.) It is a journey that we are not prepared for. It causes a lot of worry and concern especially when something unexpected pops up early in this journey, say with younger children or when things seem to be going along smoothly, or you are early in the process of finding information about FASD and have not yet been made aware of some of the secondary or tertiary symptoms. Every person with FASD is unique, with unique strengths and challenges, so what happens in one family may not happen in another. That said, there will be challenges for sure. Don’t' let that scare you, or make you feel despair. Just be aware of it. Knowledge is power, and when you know better you can do better, or to steal from a book title you can “Try differently rather than harder”. (If you don’t know, this is a book by Diane Malbin that is the bible for help for parents and caregivers of children with FASD).
The life of your child is their own journey. You can give them all the support and educational tidbits in the world, but they may still go down a path that is challenging for them and you, or that is not what you hope and dream for your child. I know that this really is true for every parent, but it seems especially poignant for our children. We are all involuntarily “invited to embrace the unexpected”, as Robbie and Jillana discuss. I was blown away when Robbie shared that after a great training, she was very deflated. Why? because she was “seeking the elusive cure for FASD”. I felt this in my CORE!!! That has been my story for so many years. I chased so many educational options thinking that I would be able to find THE answers about how to parent all of their challenges out of them, or through the right program, be able to prevent many of the worst challenges from happening. The reality is that we cannot change them or fix them, so some unfortunate things may be unavoidable. What we can do is love them and try to give them the best support that we can. Oh, and be a safe place for them to return to whenever they may need it.
So here I am in a support position for families with children with FASD in Massachusetts. I want to share what has helped me that may be a help to other families. I want to help you find education and coaching opportunities hopefully sooner than I did. I will try to share tidbits of wisdom, stats about FASD, and ideas for you to try.
So here are a few of those tidbits related to special needs parenting and self-care:
Find a therapist for you, and one for you and your spouse/partners in parenting. You will need your own place to process this chaotic life, and work on your marriage or any caregiver relationships that you have. One of the most difficult parts of this journey for me is when I can tell that my husband, teachers, fellow mom’s with neurotypical children, and family members do not understand what I am doing or why. We often feel judged by many and seen as the reason for the problems. The most important thing to try to do is have everyone be aware of the correct information and be on the same page as much as possible.
Change your self-care choices to fit your life now rather than abandon them. I used to read often. I now only have time to read books about FASD, neurobehavioral methods, trauma, RAD and attachment, oh and tons of neuropsych evals and IEP’s. I miss reading for pleasure but have found a way around this. I listen to audiobooks while on my endless mommy taxi driving trips. I listen to my favorite radio talk show “Wait, Wait, Don’t Tell Me!”, pleasure books and FASD podcasts. At least I still get to hear the story, even if I am not sitting quietly to read it. Oh, and the book written by Jillana Goble is on audible, so you know I already bought it! I have listened to the introduction, and I am already hooked! I will add that with audio books, there is a lot to be said for the narrator. If you don’t like the voice, it is harder to listen. Jillana narrates this book, and I could listen to her all day! I will review this book in detail after I finish it. If you are looking for a book suggestion, I always recommend “Nothing to See Here!” by Kevin Wilson. It is fiction, but I liked it most because as crazy as the story premise is, it had a lot of metaphorical similarities to the “Complicated Parenting Journey” that we are all on.
I have recently taken some coaching courses offered by “The Adoption Connection”: Regulation Rescue, the Compassion Challenge, and From Apathy to Empathy. One great suggestion that she gives is to write down 50 points of joy. These are little things that fill your cup. My list includes sitting outside in my egg chair swing with my morning coffee, listening to MY music for a few minutes, a piece of chocolate (or a whole candy bar........), a leisurely walk on the bike path with headphones on and lemon-flavored water. She recommends trying to get 7 or so points of joy a day as items of self-care. That is surely easier for me than planning for nights out with friends, bubble baths, massages or manicures which are too time-consuming right now, and often is not enjoyable because I spend the entire time worrying about or getting phone calls about what is going on with my twins.
Find appropriate coaching help or a support group. I have also joined several coaching groups over the years that I highly recommend. They are all similar and yet very different. I wish that I could give details to help you pick one, but that would be very individualized for each person. We discuss them often in our weekly support groups, where we, often will discuss aspects of each group. Email me at FASD@healthrecovery.org and I can try to lead you in the right direction. I wrote a blog about FASD resources on 6/21/2022 that you can use as a guide. There are many I am not aware of either. Find what suits your family. There are free Facebook pages that are private, and then others are virtual support groups that have fees. Only you can decide what you really need, but you will need some coach friends, for sure.
Find a new group of friends. It seems that often while raising neurodiverse children, parents lose contact with close friends and family. As others move on in life as their children mature, we are left behind, unable to join, or are misunderstood. This usually means feeling lost and alone. Finding others who are on a similar path can feel so validating. I think that every new parent who has contacted us at massFAS for help and support has voiced a huge sigh of relief that they have finally found somebody who gets it. You can commiserate and feel heard and understood. Join our support group, find other parents on a similar path to yours. Look into coaching groups (more detail below). Our life is very complicated, and it feels great to find others who are also living that life.
Find a “life group” and a “mom group” that you can rely on regularly. Robbie shared how she met a mom who got her into a book study “Make time for your life.” She explained that she regularly meets with her “life group” and her “mom group”. I have a key group of friends who really know me and my “complicated parenting journey”. I reach out to them often. One of them (with children in their 20’s now) told me about how she felt like “an air plant” for years. She needed so much more but was living on air and a tiny bit of water for years. So, in closing I say, “Don’t be an air plant!”
So basically, my overall message for you today is this: Don’t lose yourself in all of this. Put your oxygen mask on first, early and often. I forgot about me for a long time and have only recently been trying to get myself back to the old me (well, young me) who felt good, healthy, and strong. I am trying to do “after Care” because of the lack of self-care over the years. During my parenting journey, I have ended up having caregiver apathy, fatigue and complete caregiver burnout and blocked care. Remember, I am a nurse, so being a caregiver has been my MO for more than 40 years. I gave my everything until I nearly lost myself. Try not to let that happen to you. Find those 50 points of joy, write them down and refer to them. Make it a daily check list. And as I said already, “Don’t be an Air plant!
Something Else to Consider
FASD education, awareness and advocacy is our job at massFAS. Upon hearing that Roe vs Wade was overturned, Laura and I could only see that an increase in rates of children with FASD would be an unintended consequence.
As two women working for a woman-led and women-run social service agency, IHR (Institute for Health and Recovery) and specifically massFAS, we feel very strongly about any legislation that removes personal choice and rights from women. We are also writing to highlight some significant issues that have not been a part of any discussion so far. These issues overlap with each other and WILL have major implications on society. They are adoption, trauma and FASD (Fetal Alcohol Spectrum Disorders).
The societal view of adoption is commonly an unrealistic, uninformed view that says, if the biological mother is unable, unwilling, or deemed unsuitable to raise their own child, we will find a suitable home. There is no reference to difficulties incurred by the biological parents, the children who are removed from their parents, and the new family systems that will substitute for them. As adoptive parents, we could frankly discuss this at length, but suffice it to say that adoption is wonderful and challenging at the same time. Not every adoptee feels it in the same way, but there is pain and loss to the adoptee, just by virtue of knowing that they are not with their biological family.
Adoption trauma is often called RAD (Reactive Attachment Disorder) or Developmental Trauma. It is real and extremely prevalent in the adoption community. No matter how you slice it, adoption means loss. That loss can be mild and more tolerable, or it can be overwhelming and all encompassing. Adoptees often have no idea how to deal with all the emotions of this.
As mothers of children with many challenges and struggles because of trauma, adoption and prenatal exposure to drugs and alcohol, the unspoken truth is that we know that rates of FASD will increase significantly in relation to this recent SC decision. As parents on this journey, we have had to search alone to find help for our babies, because FASD is under-recognized, under-diagnosed and under-supported in the United States. Having a diagnosis feels exciting and sad all at the same time. It is exciting because the correct diagnosis gets you the proper treatment, right? The reality is there are extremely limited FASD informed services available globally and nationally.
The increase in the numbers of children placed in foster care or placed for adoption will have a major impact on every aspect of governmental supports. Did the recent pandemic teach us nothing about the lack of mental health support services available in this country? I am certain that our government is not aware of, or prepared for the staggering increase in numbers of children needing placement, or the medical, emotional, developmental, and mental health services that will be necessary for birth, foster and adoptive parents and all the children in their care, as well as the increasing number of foster and adoptive families needed to provide these homes in a post Roe v Wade America.
by Kristen Eriksen and Laura Bedard
FASD Resources!
Written By Kristen Eriksen
In my years of personal research and now in my career, I have found so many wonderful organizations, coaching groups, and knowledgeable people to help me navigate the many compounding issues we faced along the road to the FASD (Fetal Alcohol Spectrum Disorders) diagnosis. Resources have helped me learn about FASD characteristics, and how to raise children with FASD. I am also sharing information about other support groups that are for other pieces of the bigger puzzle in our lives. I want to share every resource that I have found about FASD, attachment, RAD, Adoption, trauma, the neurobehavioral model, and TBRI.
So, I will share many of the coaching groups, online support groups, Facebook private groups and names of persons or place that I have found helpful along with a little blurb about what you may find there. I certainly will not be able to list them all, so if you are looking for something not mentioned, or want more information, please reach out to me at fasd@healthrecovery.org.
Adoption focused:
The Honestly Adoption Company and Oasis Community with Mike and Kristen Berry- Large organization developed by a wonderful married couple with many adopted children, some with FASD. They have a free Facebook group, podcast, coaching and support through paid trainings, coaching groups, and an online community called Oasis. The Berry’s do many live and zoom trainings that include topics of emotional regulation, FASD, Safety Plans, adoption, and attachment. They have authored several books as well.
The Adoption Connection Founded by Melissa Corkum and Lisa Qualls. Melissa and Lisa have tons of lived experience in all things' adoption. They have a lot of great free resources, books and services from an adoption and trauma lens. I participated in their training support for Caregiver Burnout (From Apathy to Empathy) and am currently participating in “The Real-Life Behavior System” a program that includes SSP training (the Safe and Sound Protocol listening program based on polyvagal theory) that helps to regulates the nervous system. Lisa Qualls is also co-author of “The Connected Child” with Doctor Karyn Purvis, PhD (TBRI Trust based relational intervention).
The Post Institute Great resource for education about adoption support and the neurobehavioral model. Bryan has a great ability to explain and discuss difficult issues in the adoption and attachment relm. He has several books, personal and small group coaching and a blog and Facebook group
FASD specific:
FASD Success: I have mentioned Jeff Noble before. He has written two books, has an excellent podcast, a free Facebook page, and offers many trainings. He has an informational free training every fall as a precursor to his FASD Caregiver Kickstart Program- a virtual 6 month paid coaching program to dig deep into all aspects of FASD Education and strategies for success.
The FASD Collaborative Project- A cross-organization international initiative to increase high quality support and training options for the FASD Community. It is a collaborative effort between many localized organizations to provide free FASD Education to anyone who is looking for it. Many free training courses are available, and they have compiled many resources of centralized information for training and research review for information about FASD.
The Change Starts Here Collaborative- Aubrey Page is an FASD educator and advocate with lived experience as a foster and adoptive mom. She has 10 different inexpensive courses on FASD, IEP support, siblings, and a mini course for teachers. She is very knowledgeable and has a wonderful way of wording information to be sensitive to avoiding blame and stigma. She does talk a little fast, so I had to listen a few times to get it all down pat, but that just means more bang for your buck!
Proof Alliance Minnesota FASD Organization that has a large clinic, client base, and offers free education and support groups to anyone, not just Minnesotans.
FASD United This National Organization for FASD in the United States is the “hub” so to speak of all individual state FASD organizations for collaboration and sharing. They have a Family Partner who you can contact to find local support in your area. They are also a large legislative advocacy group, and are currently working on promotion and passage of the FASD Respect Act.
The Neurobehavioral Model and Parenting Support:
Fascets Fetal Alcohol Spectrum Consultation, Education and Training Services. Modeled after the book “Trying Differently, Rather than Harder” by Diane Malbin, MSW, referred to as the FASD manual or bible by many.
Shifting the paradigm: toward a neuro-behavioral approach to FASD A Facebook page created by a Massachusetts mother of a son with FASD, to share information about the neurobehavioral approach, and be a support center and information sharing page
The Resilience Room with Eileen Devine- Some free, some paid subscriptions (more affordable than most others) based on the neurobehavioral model (Diane Malbin’s book “Trying Differently Rather Than Harder”) Eileen is extremely calm and realistic by nature, so instills this into her discussions. She has a blog as well. The resilience room provides a great explanation of using the Neurobehavioral model with step-by-step modules to learn about the unique qualities of each child in your care, and how to link their symptoms to appropriate strategies for support.
Reactive Attachment Disorder Specific:
RADvocates (Facebook group that I have found but just joined, so have no opinion about it yet.)
There are certainly many more, but this is what I have come up with so far. Check them all out to find what might best suit or help you. Please reach out if you need help to determine which one would best provide what you are looking for, to find other resources, or if you have one to share. I hope this helps you find your way!
FASD Podcasts
One of the most important things I need to do in this position and on this blog is to share information about FASD that I have found to be useful. It was a challenge to figure out want I would tackle first. I know that we all have limited time to read, listen and learn. So, my first tip is to try podcasts. I search for them on my phone app, and save them so that I can listen when driving, waiting for the kids at therapy appointments and the like. I also listen when I am in the shower, folding laundry or doing mundane household chores. I constantly have ear buds in! The ear bud cords get stuck on drawer pulls, or fall on the ground because I forget that I have them in! I do get to listen more often this way, though.
There is no way to rank these because they are each different and unique. You will notice that there are many guests who are on all these podcasts. The perspectives are slightly different, and so I learn more. Some of the interviews are with the same people, but with a different line of questions, which makes it worth a listen. I also think that once you find some of the people that are interviewed, their contact information is shared, and you then find more resources that are applicable. I will give some information about what is unique about each podcast in case that is helpful.
Jeff Noble’s FASD Success Show: The FASD Success Show , Caregiver Kickstart Coaching Program, and Noble Initiatives.
If you google FASD Podcasts, Jeff Noble comes up first, probably because it has been around for longer and he has a huge following. He is a very charismatic, upbeat, and friendly guy. I am not lying, I actually know him. He was a foster dad to a now adult foster son with FASD and worked as an FASD support worker in Canada. For that job, he trained with some of the leading researchers and educators in Canada in the field of FASD. He has created a large network of support and educational resources for caregivers, families, and professionals. I find that he has a keen sense of what we are dealing with and gives sound advice.
His podcast has 108 interviews with people with some connection to the FASD world. He interviews caregivers, birth moms, FASD organization leaders, Professionals (doctors, social workers, researchers etc.), as well as people with an FASD diagnosis. He is based in Canada, but interviews people from all over the world about FASD in every country that he can find. His podcast page describes him this way:
“Jeff Noble is the Founder and CEO of an organization that provides hope and education to people caring for someone living with Fetal Alcohol Spectrum Disorder (FASD) through online applications and in-person training sessions, demonstrations, and consultations.
Jeff is a helper, a leader, and an innovator. His focus is FASD, but his expertise is building community through social media. Using an interactive, yet personal approach, Jeff delivers relevant, useful, and need-to-know information to help and support front line workers, educators, and caregivers of those living with FASD.”
I am sharing information here about his podcasts because that is the topic for this blog, but he provides many varied supports through books, virtual and in-person trainings (just restarting after the pandemic) and social media. He has a free, closed Facebook group that is a great start to find more information and to begin to learn about who is in this community and what it has to offer. He also provides an intensive training for caregivers called the Caregiver Kick Start Coaching program, of which I am a member. In this program, members get intensive training about what FASD is, and strategies to help families. He reminds caregivers to find and celebrate their children’s strengths and abilities, while also learning to navigate their challenges and struggles. I have found this to be invaluable. He has collected a talented, knowledgeable group of coaches who are available for group coaching calls which are held twice a week. These have been a huge lifeline for me, because I get to chat and learn from a large group of parents who “get it,” and are in the same situation as I am. There is a cost for this coaching group.
FASD Family Life with Robbie Seale
Robbie sent massFAS a message after our first blog post. I guess we run in the same circles! She asked Laura and I if we would like to do an interview for her podcast. The first time we met with her, we chatted for over an hour without even doing an episode for her podcast! We just chatted as parents with a lot in common. She then offered to come to one of our parent support groups and was a wonderful guest for us! We have done an interview for her podcast, but it is not scheduled to air yet. She is a wonderful, caring, and knowledgeable lady, who I now would call a friend. Her podcast page describes her podcast this way:
“FASD Family Life podcast is where we get REAL about raising children and youth with Fetal Alcohol Spectrum Disorder. Host and FASD Educator, Robbie Seale, synergizes her 20 years of lived experience, in-depth knowledge of FASD and the best research to educate, encourage, equip parents and caregivers raising children and youth with FASD. Robbie’s passion is to help families thrive, because she knows the struggle is real and so is success. Weekly episodes discuss the challenges families experience and deliver effective strategies to improve family cohesion and increase understanding of this complex disability.”
She truly means it when she says the struggle is real, but so is success! She is practical, and experienced. Robbie started the podcast just over a year ago, and yet it is packed with great interviews and information. If you start from the beginning, she has great education about FASD in general, but then also about specific challenging times, situations along with strategies. She has interviews with various people in the FASD world, from educators to caregivers of people with an FASD diagnosis. She also has a research angle on a regular basis which shares truly relevant updated research on FASD.
She has also just embarked on a support group as well. It is called the FASD Family Life membership community. I want to join but have too much on my plate right now! There is a nominal cost for this group.
FASD Hope with Natalie Vecchione
Natalie Vecchione also sent a message to massFAS when we started our blog. We have scheduled a time to chat with her for her podcast in July. I had already listened to her podcasts, too. She, like Robbie, is sweet and calm in her tone, and has a wealth of information to share. She has also co-authored a book about homeschooling called “Blazing New Homeschool Trails, Educating and Launching Teens with Developmental Disabilities,” about her homeschooling journey with her two adopted children. Her podcast always focuses on Hope, and often features her husband John as well, so it has that different angle. The podcast page has this message from them:
“Hi! We’re John & Natalie Vecchione. We met in college, and we’ve been married for 26 years. We’re a homeschool family in the farm country of North Carolina. We’re the parents of two kids, both of whom were blessed to us through domestic adoption. Our son is 19 years old and has Fetal Alcohol Spectrum Disorder (FASD). He studied carpentry and woodworking and he has graduated from homeschool. Our daughter is on her homeschool adventure.
We started FASD Hope as a podcast/website/resource about Fetal Alcohol Spectrum Disorder to share our viewpoint as parent advocates with over 19 years of lived experience. We like to say that our podcast is about awareness, information & inspiration for our listeners. You are not alone in your journey of FASD.”
The biggest focus that they stress in all their podcasts is HOPE, so they share strengths and give all listeners hope for the future for those with or caring for people with an FASD diagnosis. They have great guests and also feature a Dad’s Perspective podcast every so often. That perspective is great to hear for both me and for my husband as well. Natalie’s homeschooling expertise is also a wonderful and valuable piece of this podcast for anyone who is homeschooling or considering this as an option.
I have a goal to try to add a new blog post every week, so I can keep sharing resources websites and information about FASD. Future topics will be book reviews, other FASD Education Sources and Advocates, Run FASD, FASD Day (September 9th) to name a few. Again, feel free to visit our website at massFAS or reach out to us at FASD@healthrecovery.org.
Love to all!
Kristen