MEET ANNA – Anna is an enthusiastic 14 year old who loves playing Barbies and is currently saving her money for a real looking baby doll.
STORY – Anna has partial Fetal Alcohol Syndrome.
STRENGTHS – She tries hard and often does well playing with younger children. Anna loves her cat (she named him Justin Bieber!) and her dog, Ziggy. She has 5 older brothers and sisters and she has 3 nieces who look up to her and love to play with her. Anna is a blessing to all who know her!
1. The effects of FASD are irreversible. They can, however, be minimized and managed through appropriate therapy and supports.
2. Some individuals with FASD may struggle with fine motor skills and, as a result, become frustrated/easily angered due to difficulties in coordination.
3. School settings can be a problem for some students with FASD.
4. As adults, symptoms may become more obvious since the ability to plan and anticipate consequences continue to be impaired and the responsibilities of daily living are increased (e.g. this may negatively impact finances, housing, and other areas of life).
5. Some individuals with FASD live with the challenges of numerous secondary conditions (e.g. ADHD, Conduct Disorder, Oppositional Defiant Disorder (ODD), Reactive Attachment Disorder (RAD), Sleep Disorders, etc.).
6. Some individuals with FASD likely have experienced previous trauma (e.g. emotional, physical or sexual abuse, exposure to domestic violence, substance abuse and extreme neglect).
7. Some individuals with FASD may present as hyperactive, impulsive, and tend to have poor social skills.
8. Misdiagnosis and under-diagnosis of FASD is common.
9. Social and emotional development deficits are common for some individuals with FASD (e.g. a child with FASD who is 18 years old chronologically, may be functioning developmentally at a much younger age).
10. Deficits in executive function are common (e.g. difficulties in problem solving, impaired judgment, poor decision making skills, diminished ability to comprehend the cause and effect of their actions and behaviors).
Confabulation (verb: confabulate) is a memory disturbance, defined as the production of fabricated, distorted or misinterpreted memories about oneself or the world, without the conscious intention to deceive.
The Whitest Wall by Jodee Kulp takes readers into the world of five individuals living in a regular community and demonstrates how this disability affects day to day functioning most people tilt their heads at but don’t understand. Winner of Best Young Adult USA Fiction (2012) Winner Mom’s Choice Gold Adult Fiction and Young Adult Fiction.
Fetal Alcohol Spectrum Disorders (FASD) is a group of disorders that does not lend itself well to screening, assessment, and diagnosis without proper awareness, education, and training related to the complexities of the disorder. The varied neuropsychological and dysmorphology symptomatology of FASD contribute to screening and diagnostic issues. Specifically, individuals with FASD typically have neuropsychological deficits (e.g., executive control, impulsivity, and decision-making) that require high levels of support and services, but can present relatively independently of intelligence. Complicating these already challenging neuropsychological symptoms, only around 10 % of individuals with FASD have visible signs of facial dysmorphia, which become less apparent as individuals physically mature into adulthood. This combination of symptomatology limits the ability of unprepared clinicians to render differential diagnoses and increases the likelihood of under-identification and misdiagnosis of FASD.
The identification of FASD is further muddled by a lack of reliable screening instruments in forensic settings, sometimes limited access to medical and historical records, and memory-related issues. First, the relative dearth of FASD screening instruments developed and validated for use in forensic settings, especially in adult populations only contributes to the under-identification of FASD. Second, gaps in current and historical medical records also make it sometimes difficult to identify the presence of prenatal alcohol exposure with any degree of certainty for adults. The fact that some individuals with FASD were adopted or involved in multiple foster care placements only decreases the likelihood of such records or access to the birth mother. Third, adults with FASD often have memory issues. This includes impairments in short-and long-term memory and the potential for suggestibility (e.g., inclination to agree with statements and implications of others) and confabulation (e.g., the creation of new memories from real and fictional experiences). As such, a clinician should not solely rely on information reported by an adult who possibly has FASD without seeking out collateral sources of information. Working to resolve these screening and assessment issues and increasing the likelihood of early and accurate identification and implementation of appropriate services and supports offers the most promise in rendering desistance from involvement in the criminal justice system.
The varied symptomatology and screening and assessment issues of FASD emphasize the importance of awareness amongst forensic professionals. Unfortunately, there is a lack of general awareness of FASD among forensic professionals, which is contributed to by limited coverage of the disorder during education and advanced trainings. Further, there are few forensic experts in the area of FASD. Not only does this often leave many questions of how to deal with adults with FASD who are involved in the criminal justice system unanswered, but this lack of expertise also limits the potential of referral for specialized FASD assessments involving individuals in adult forensic populations. Complimenting this lack of knowledge in the field is a lack of adult specialized FASD-based treatment and intervention options in both community and confined settings. These shortcomings highlight the importance of implementing FASD awareness campaigns in adult forensic settings and expanded forensic-specific coverage of FASD in educational and continuing education settings.
Author Biography: Jerrod Brown, MA, MS, MS, MS, is the Treatment Director for Pathways Counseling Center, Inc. Pathways provides programs and services benefiting individuals impacted by mental illness and addictions. Jerrod is also the founder and CEO of the American Institute for the Advancement of Forensic Studies (AIAFS), lead developer and program director of an online graduate degree program in Forensic Mental Health from Concordia University, St. Paul, Minnesota, and the Editor-in-Chief of Forensic Scholars Today. Jerrod is currently in the dissertation phase of his doctorate degree program in psychology. Please contact Jerrod at Jerrod01234Brown@Live if you have questions about this article or would like a full list of references used for this article.
Confabulation (verb: confabulate) is a memory disturbance, defined as the production of fabricated, distorted or misinterpreted memories about oneself or the world, without the conscious intention to deceive.
The Whitest Wall by Jodee Kulp takes readers into the world of three individuals living in a regular community and demonstrates how this disability affects day-to-day functioning most people tilt their heads at but don’t understand. Winner of Best Young Adult USA Fiction (2012) Winner Mom’s Choice Gold Adult Fiction and Young Adult Fiction.
Concerns of FASD commonly come up during different portions of legal processes (i.e., police interrogations, waiving Miranda rights, entering pleas, standing trial, providing testimony, and sentencing).
For example, the confessions of suspects with FASD and testimony of witnesses with FASD are often called into question, given the memory, communication, and social deficits of the disorder. Further, FASD may interfere with a defendant’s ability to comprehend legal proceedings and participate in their own defense. Finally, diagnoses of FASD may be considered as mitigating evidence during the sentencing of a defendant, particularly in death penalty cases. Thus, the presence of an FASD diagnosis calls into question the validity of many legal proceedings
-Adapted from Anthony Wartnik, Jerrod Brown, & Sarah Herrick, 2015
The Whitest Wall by Jodee Kulp takes readers into the world of five individuals living in a regular community and demonstrates how this disability affects day-to-day functioning most people tilt their heads at but don’t understand. Winner of Best Young Adult USA Fiction (2012) Winner Mom’s Choice Gold Adult Fiction and Young Adult Fiction.
Special thank you to guest blogger — From R.J. Formanek –R.J. is one of our beloved FASD Survival Strategy Teachers
When dealing with FASD it is important to recognize that everyone is at some point, confronted with grief. And with the growing number of grandparents taking over raising children I feel it is something we need to confront, understand, and accept.
Let’s take a look at who grieves, and why.
The Child – The child living with FASD grieves for his own lost potential at times, but very often the child grieves each and every time he fails and lets down those around him. He wants to do well, he tries to do well… but when he fails often it isn’t just A failure, it’s ANOTHER failure. This leads to guilt, shame, and self blaming… that’s ALL grief. The child is grieving.The Parent – The parent of a child with FASD is often battling feelings of guilt and shame as well, whether that is their biological child or not. The reasons for the bio mom may seem evident, but the adopted mother or caregiver also join her in a shared grief of sorts. Each of them wants the best for the child, and each time the child fails at something, or is hurt the parent feels not only that pain, but the guilt of not being able to stop it. Not being able to help when you want to causes feelings of shame and guilt. The parents are grieving.Grandparents – The grandparents are often saddled with guilt themselves, and this often goes unnoticed by those who don’t really understand. There is an added dynamic here, the grandparents are naturally grieving for the child, the same as any other parent. But they are also often grieving for their own child as well, the parent of the child they are now raising. Many people do not understand this double level of guilt and shame and how it impacts so many people. Like any parent, when their child fails they feel it, and doubly when raising an FASD affected grandchild. The grandparents as well are grieving.
When we deal with people in the FASD world it is important to recognize this, and rather than ignore it we should honor what these families are going through every single day.
This is inter-generational grief. There is no ‘cure’, but there is acceptance and understanding. Everyone is at a different point in this journey with grief, and we all must deal with it at some point.
It is good to help one another along this hard part of the journey; we need to remember we are all in this together.
Better Endings New Beginnings is excited to offer TWO FREE TRANSLATIONS in online books for the holidays to help families and professionals in Ukraine and Russia. Please consider sharing these with family, friends, counselors and agencies as appropriate. If you are connected to persons in the Ukraine or Russian – please send these e-books as gifts from our home through yours.
Living with Fetal Alcohol – Ukrainian and Russian Translations – FREE
Liz Kulp and her family along with Ukraine Works (http://www.ukraineworksltd.org) have donated this award winning book and it translation to the Russian people to better understand how Fetal Alcohol affects the life of a person and their family. (www.betterendings.org)
FREE RUSSIAN TRANSLATION OF BEST I CAN BE LIVING WITH FASD BY LIZ KULP
Holidays are a tough time for our kids. We may place pressure on ourselves to try to make holidays perfect. What matters is family and love and learning to live and appreciate each other for our unique gifts. Our kids do the best they can and if other people (aka, family) can’t understand that and you have tried to explain numerous times, just ignore them. Cut yourself and your kids some slack-scale back, stay home and enjoy the moments whenever you can get them.
Holidays are meant to be joyful, happy occasions.
Do the best that you can.
You do not have to apologize for doing
what is appropriate for your family.
Meltdowns are not pretty and very few people understand they are not enormous temper tantrums. They can last anywhere from a few minutes to an hour and when they are over everyone is exhausted. What has your family done to make it easier for your young people? Following is our recent discussion on FASD Think Tank – we hope our cumulative experiences will help your families enjoy brighter holiday celebrations.
Create good sense.
Realize the world especially during the holiday seasons may assault our children’s senses.
Have a go bag (sometimes called a busy bag) for your event with things to occupy child – headset, video game, color books, washable crayon or markers, paper, playdoh, picture books, beloved stuffed toys, favorite music or a craft everyone can do. Bring their pillows and blankets. One child may enjoy popping small bubble wrap bubbles another may feel assaulted by that sound.
Bring a crash pad – a bean bag, body pillow, sleeping bag or pop up tent. You can also use a small folding table and add a sheet for a fort.
Sound – Have a supply of earplugs handy. Disorganized noise can be a disaster. If music soothes your young person, use it, but do so judiciously; if music is an irritant, keep it off or to a minimum.
The train under the flashing lights on the tree can be like standing in an Amtrak station
Shopping in the grocery store or mall can feel like an earthquake. Find spots in the mall/store that are quiet to have a retreat – quiet hallways or aisles without decorations
Multiple normal talking voices can feel like screams
Touch – If your young person is not good at ‘dressing up’ be happy they are just wearing clothes to what ever event and let the rest go.
Give a soft matching t-shirts or sweatshirts to everyone as gifts, make sure they are sensory friendly to you child and involve your child in the process. This makes a family silly photo easier.
Test drive the clothes before the event and see if there is going to be trouble brewing
Bring additional comfy clothes and shoes to change in later. A set of warm favorite pajamas to go home in or a favorite stuffed toy, blanket or sleeping bag.Consider a hot bath for your child before leaving a family function.
Model alternatives to hugs and kisses. If you don’t want a hug, you could…. Blow a kiss. Give a high five or touch thumbs. My kids did elbow and toe shakes as a greeting. Role play the business firm handshakes.
Use “Happy Feet” to put on shoes – if they are lined up correctly the shoes will smile at each other. If they are not lined up right them will frown and have a sad face.
Smell – Holiday scents make bring back memories and also may be overwhelming
We always brought Peace and Calm essential oil – you can use a sent that the child loves the most for calming – lavender, cedarwood – put it into a zip lock bag to sniff.
Swimming nose plugs dull scents and can look fun and silly – bring more than one if you are using them so other kids can join in the fun.
Sight – If the celebration is in a room with fluorescent lights, be aware the room may be very noisy and moving for your young person.
A pop up tent can be a fun refuge or building a fort (approved by host)
Bring some fun sunglasses
Bright lights and colors can be overwhelming and give anyone a headache.
Bring a night light
Diet – If the child is on a special diet, find out the menu
Offer to bring some yummy favorites to share.
If sugar is a sure send off for your child – bring his favorite dessert, have him help make it to share with everyone
Sensory input and nutrition every 2 hours
Create appetizers for all the kids in zip lock baggie – add holiday stickers – put in fun things to try – sweet idea (small marshmallow, M&M, kisses) – sour (green olive, little pickle, black olive) – crunchy idea – (crackers, chips or veggies)
Make ice cream in three zip lock baggies and toss them to make the ice cream.
Make edible playdough for everyone to play with.
Motor Skills – If poor fine or gross motor skills is a problem
Offer to wrap presents for them or do it together with good eats/drinks and make it fun (and never criticize);
Practice unwrapping presents before you get to an event.
Offer the choice of a bowl or a plate, plastic or china to eat off.
Bring safe treaded warm slippers to keep feet warm
Try to move from one side of the yard to the other without stepping on grass
Be prepared for wiggle buns – have white paper placemats children can draw or color on. We always have kid friendly side tables and if they must sit at a table figure 10-15 minutes of good behavior for some children is maxed and they can “ask to be excused.”
Play with the boxes – you can climb in them, slide down them, roll inside of them, fill them with foam peanuts or wrapping and sit or jump in them, you can stack them and smack them, sleep or cuddle. Think of your own box ideas.
Triggers and Memories – If certain smells or sounds trigger past horrible experiences see if you can find an alternative that your child does like and feels safe with. If you know what your child’s triggers are come up with a plan of combat before the holiday event. More ideas to get you through
Do not expect that she will be able to keep what she has gotten people ‘secret’ until holiday celebration
Exercise, for everyone. Walk – it is easy, cheap and accessible.
Walk the dog if you have one or someone else’s dog.
Stomp in leaves.
Feed the birds and ducks – Make bird pancakes and throw them like frisbees and see whose pancake gets the most birds. If you put them in the oven to get them a bit more crispie you can fly them further.
Skip rocks in the water or make a sand castle or stack a stone tower
Roll down a hill. Make a snowman, snow angels or a fort.
Make ice cream with a hand crank or ice cream ball.
Bring in buckets of snow and put it in the bathtub to build a castle
Take is easy.
Keep it simple
If need be, keep decorations to a minimum for those who are easily overwhelmed by all this;
Regulate yourself, find a place for your own peace and calm
Create a sanctuary in one room or part of a room
Add things that are calming, comfy, warm and happy
Create exit cues (code word or gesture) and space ideas when you arrive so you know there is a safe strategy to calm
Stay tuned in to recognize early stress signs
Buddy up – break up time during the holiday celebration to be shared by all – Mom takes the first hour, Dad the second, a cousin or relative the third – have something fun and simple to do during that time in the event of overload – walk outside, build a snowman, make popcorn for everyone, etc.
Teach child to say, “I just got really tired, I think I will lay down/take a break/take some time alone now” – this allows a normal transition most people understand for another person to step away
Stick to a consistent schedule as much as possible
Structure is important, especially with no school. Even if the “events/things” on the schedule do not happen at a given time, the structure of knowing what comes next or on a given day is important
Plan for lots of extra time so as not to be rushing to get some where (rushing = anxiety = problems)
Put some helper jobs in place if wiggle bottom happens – getting up to get extra napkins, salt and pepper, passing around the bread.
Make a calendar and don’t “over pack” the calendar
Create Down Time – Plan it in! Make arrangements for ‘down time’ during any family get together, having a plan (or two) of what would be socially acceptable to do if and when everything is just getting to be too much (my son did best with an iPod or such and I had to ignore people who told me he needed to get those things out of his ears and be more ‘sociable’.)
Need to not over plan or over schedule (the world will not fall apart if we don’t go to EVERY holiday party!)
Make a holiday scrapbook or photo book to share with the child each year to remind them of the people in their families they do not see often, traditions that happen only once a year and food choices they may be offered.
Have the child tell you a story about the holiday – you will be able to understand much more how to help when you walk with your child’s eyes.
Make an early visit with only your child to deliver something for the event – check out with your child where the tree is, are they going to light the candles, do they need any help with anything. This answers in their mind – What are they going to do? What are they going to eat? Where are the bathrooms? Who will be there?
We made a paper chain with the days until Christmas and each day we tore off a chain and we have also used an Advent Calendar for each child.
For Hanukkah (we celebrate both Christmas and Hanukkah), I have a set of 8 cards that say things on them like: gelt night, book night, gift of yourself night, giving night, surprise night, mommy night and a few others. A card is drawn the night before for the next night, though gelt night is usually always the first night. I read this idea years ago in some magazine. It keeps the focus from being night after night of presents.
Our son loves the trappings of Christmas so he helps us pick out a tree, decorate it, and take it down. Last year he said, “Why don’t we ever decorate the outside of the house?” We gave him money to buy outside lights and he had a ball decorating the shrubs all by himself. We didn’t interfere with’ his decorating ideas. Our house certainly stood out with his color choices! He brought all his friends over to see his decorations
Starting in November we do a Thanksgiving Tree. We make a pile of paper leaves and anyone can write something they are thankful for and sign it. We read it aloud.
We always have a kid friendly nativity set for anyone to play Christmas.
Getting a less than desirable gift before it happens so there are skill ideas already shared. Pick something you know they will not get (a bag of celery or carrots, a broken mug, a bottle of stinky perfume, a piece of wood – have fun with this)
Meeting and greet relatives (strangers to child). Pull out a few pictures and talk to the picture to practice a conversation with a specific person
Offering to help and practicing the helping of something she can do – passing out gifts, setting out salt and pepper, walking around the table to serve bread
Rules of being a guest. Teach and expect your child to be pleasant and polite. Practice greetings and saying, “Thank you,” “Excuse me,” “Please,” before leaving will help your child be more comfortable in social settings.
Don’t insist on eye contact but practice directional contact so they know where to look when a family member they don’t know very well is talking to them. Put a sticker on your forehead and have the kids practice looking at it. At least you have the eyes in the right direction.
It has helped (though otherwise I do not like to do this) to be VERY clear about my budget (ie what I have to spend on each family member). This has helped her prioritize wish lists.
One of the best stocking stuffers is “coupons”. I Googled “coupon templates, Word” and came up with some templates that I now just use every year—fill in the blank part and print out on card stock paper. Amazingly, these did not get lost. And at times she has given coupons to me.
oWhen my daughter was younger, it was easy. In her teens, it something she had otherwise to ‘earn’ (like a ride, so several coupons would be “free rides”). oNow that she is in her own apartment,
§“Free rides” are always a good one.
§A dinner that I make for her and then a 2nd one frozen is also good.
§“Trip with me to Costco” is another one I’m going to do this year.
Gifts worth giving.
Starting in elementary school years, we tried to emphasize the fun of giving. We made a list of family members who would be getting a gift- Nana and Grandpa included- and give our son about $5 per gift to spend. This way he got to enjoy playing Santa. Of course I would go shopping with him, but the gift ideas had to be his. As he got older we had to give him more than $5 dollars because he didn’t work. Now he uses his own work money to buy gifts. Two years ago this emphasis on giving gifts paid off. Our son told me that it was more fun giving gifts. He loves to give toys to our younger nephews/nieces. Now that he’s 28 and works full-time, he uses his own money to buy gifts. He also wanted to buy a present for children of veterans or for children who lived in poverty. (I was shocked that he even thought about other children.)
A calendar made of photos taken by our son (CVS and Walgreens will take the photos and make a calendar for $20 check other places for coupons) was a huge success. Note: Our son has a talent for photography and a pro camera. He got lots of ooohs and aaaahs from all the uncles/aunts/’ etc. for his calendars. All the attention made him feel very good about himself.
A photo book of friends and fun times during the past year helps with keeping memories that so easily get lost.
We open gifts all day long beginning of Christmas Eve to Christmas Day so they can enjoy each gift as they are opened.
Our son loves a yearly Christmas decoration that is only for him. He now has quite a collection and puts them on our tree. He thinks about the day that he’ll put it on his own tree. Each decoration is special to him.
Stocking stuffers with fidgets like silly putty, play dough, variety of balls that squish (pet stores and dollar stores are a great place to find wonderful fidgets)
oChapstick, LEGOS and baseball cards were always a big hit for the boys
oFavorite makeup, hair things and fuzzy socks were always a big hit for the girls
oWe filled stockings with foods they loved but usually didn’t get – olives, mandarin oranges, gum, small bags of chips, popping corn
oExtra set of batteries, gift cards, crazy straws, puppets
The biggest hit of all, for 6 or 8 years now has big a big box of favorite treat foods. When she lived with me, this included favorite junk foods (NOT the junkiest of the junkiest) that I usually would not buy for her or were pricey enough that I only bought occasionally (for example there is a pricey teriyaki flavored corn chip only available at places like Whole Foods that she loves).
Now that she lives in her own apartment, I get things that she can’t buy with food stamps (including new sponges, dish soap, etc) some favorite junk foods, some staples she would not get herself.Use the same box every year and it is always looked forward to with great eagerness. Can also slip a few ‘healthy’ things in there.
We give a $10.00 gift each and can spend all year figuring it out. The gift can be from a thrift store, it can be rebates, it can be buy one and add the free one to your gift bag or you can make something. My sister spends the whole year collecting free things and putting them into a $3.00 plastic bin. Another member buys a bag of groceries saving the deals for the month of December. They are the BIG prize. Then we shake dice and pick a gift. At the end of the gift giving we have ten minutes of trading with a double dice throw.
Gift cards that come in handy – Walmart, Target, Walgreens, favorite grocery.
We have a “Let’s Dish” (www.letsdish.com) and it is fun to buy a meal prep afternoon and do it together.
Host a weekend day “Make it and Take it” cookie or meal freeze bake.
Our son loves to go skiing with his friends so we bought him a gift card of 5 ski trips so he could go with his friends.
Car navigation unit (GPS) so he wouldn’t constantly get lost when driving.
A debit card. He knows that it’s only for emergencies.
Bus ticket or mobility ticket package.
Huge box of COSCO toilet paper with dollars in the centers of the rolls.
Gifts worth making
Think of something that she can make (in multiples or big lots so enough is made for EVERYONE) that solves the gift-giving problem with one or two evenings of effort and then they are wrapped up and there are home-made gifts for all on list. Usually it is something cooked.
Send her off to a paint it yourself pottery place or fused glass studio or other ‘make a present’ crafting place with older brother or friendly adult so she can make parent presents without stress.
Easy Gift Making
We bought potholders at the dollar store and fabric paint and decorated them. One year we used permanent markers and drew on them and then sprayed them with rubbing alcohol to get a tie die effect.
Dip plastic spoons in caramel and chocolate and sprinkles wrap in plastic wrap with ribbon and add to a coffee mug.
One year we dipped pinecones in chemicals to make them burn different colors when you put them in the fireplace.
For this year, I saw a chocolate mint bark candy in one of those advertising supplements that you make with some new Toll House mint-flavored chocolate chips.
Peanut brittle was a huge success. I just helped him w/ the candy thermometer. He gave this gift to a very grateful grandfather. I made the Christmas cookies- our son decorated them. He loved doing this. Of course everyone was told that he decorated the gingerbread men.
Wonderful dipped pretzel sticks in caramel and chocolate and sprinkles wrapped in plastic wrap and tied with a bow.
Thank you notes are mandatory to people whose gifts you do not open in front of them.And must be completed before the item is used/worn.Not fun but now it is, if not a habit, at least an understood ‘requirement’
FASD Think Tank is comprised of 25 professionals, core network providers and parents experienced in providing creative ideas for living, loving, and laughing together to build solutions for healthy living for persons experiencing the challenges of FASDs. Special thank your to FASD Think Tank members who contributed to this article: Kathy Hotelling, S. Chris Troutt, Victoria Deasy, Jodee Kulp, Susan Rosenthall, Vicki Ness and Susan Rose
JUST GOT THE CODE FOR WALMART HOLIDAY SAVINGS
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