Often, I read messages from parents telling me about the “HORRIBLE” behavior exhibited by their children and the trauma they are feeling because of it. Sadly, many of us living with prenatal exposure to alcohol have had a hard road to follow, with no supports or understanding at all, so many of us have made mistakes. They say we are only as happy as our most difficult child situation, and well folks when you are living with a trying to become an adult in a brain that is taking molasses time to grow up it can be a journey of extreme parenting. When we mix dysmaturity with becoming an adult chronologically it is a nasty mix. You cannot change the structure of his brain or give him abilities he may not be capable of mastering.
We, the adults with FASD know how tough this is.
We’ve somehow lived it and survived. Some with parents at our sides, but many of us abandoned while we figure out our life path. It is not easy flying with broken wings. Time does not heal the wounds we’ve been given before we were born.
As adults, living with the challenges of FASD, we aim to change that with the kids growing up now by providing a bridge of understanding potenial proper accommodation and that can make all the difference later. So many of us – people with FASD and caregivers have tried to go this alone. Remember, you do not need to do this alone – you can develop your own braided cords. And that we will write about in the coming weeks.
Let me begin…
I think I can best approach this via my own life experience, and hope that there are some parallels between experiences.
I left my family at the age of 14, into care since we were not able to get along for a number of reasons. The biggest reason would be something we had no idea about (FASD) and thus were stuck dealing with all the classic behaviors with no explanation. My grandparents were at a loss, they had not dealt with anyone quite like myself, and mixed with their advancing years having a rock crazed teenager around must have been very challenging.
On the surface I was belligerent, cocky and totally full of myself…
… but on the inside I was confused, hurt and really didn’t understand why I was so different. But I knew I was… everyone told me I was.
So, I spent a year going through 13 foster homes and was finally legally emancipated and “set free” to pay for my own mistakes. The only thing the system could think of doing with me at that time was to make me “an adult in the eyes of the law” and then I could be put into the correctional system as an adult.
Yes… that was the plan social services came up with for me. I personally find it quite barbaric… but that was then…..
Long story shortened (thankfully, lol) instead of going directly to jail and not collecting $500 I went into a group home with a number of other incorrigible young adults. I stayed there for 5 years, and to all appearances I was doing nothing good with my life, parties, and lots of girls etc… but I was learning about me.
There was so much I did not know, starting with myself and my own feelings and thoughts… and I needed to figure out what those were.
I needed to see the world and experience the good and the bad myself, it’s the way I understand things… by experience.
That road has taken me many very interesting places and I have met some very interesting people, and I have been so many different people to so many others that I learned who I really am.
But my thought processing is different, and I do things at my own speed… no matter what the calendar says, I know how I feel.
People tried to help, but not having the same type of experience I did put them at a disadvantage… what worked for them did not work for me because it did not make sense to me, the way they explained it. Not their fault, we just speak different English I guess.
But there were things that helped along the way:
- Knowing somewhere there were people who believed in me, even if I did not see them every day.
- People who cared for me, but understood I had to walk this path alone and trusted that when I needed help I would ask. I know now how difficult it was, but at the time I needed to make my own way, make my own mistakes and have my very own successes. I NEEDED to do that. For me.
It was more than a drive, it was a reason to go on.
Some people had a hard time seeing that, and it took years for me to start to put it all together and show positive improvement… but it DID start to happen. I reached out for a more ‘normal’ life.
Well… as close to that as possible, anyways.
I guess, in the end what I am saying is that you raised your child and what you taught him is in there, but he needs to apply it to his own life, and that will happen at some point.
I do not know what your loved one is feeling about what is going on, but doubtlessly he or she IS processing and learning every day.
Now, none of this is much comfort to you at this point, but it’s ok to pull back and be a more “quiet support”… he wants independence and helping him find it can be a great thing for you both.
He will learn to do things, or he will learn what he can not do,
but in the meantime it’s hard to sit and watch.
I get that… as a parent I do understand.
Trust in the values you have given him all his life to one day surface and you will be so proud! Watch over him as best you can, be there when he needs you, cheer the accomplishments he makes on his own, help pick up the pieces when he falls.
Together you CAN make this work… it takes faith and love but it can come to pass. Hang on, it’s going to take a while…
but your family is worth it.
I hope that makes sense……
Take time for yourselves – caregivers we don’t need you overwhelmed. We need you breathing to help us. Hopefully in the coming months we can provide ideas of how to take care of you while helping to navigate and guide us! Just remember in the end it is our life and our understanding and our language and sometimes it is very difficult to bridge.
Individuals with suspected or confirmed FASD commonly experience a wide-range of impairments that can significantly impair their ability to competently proceed through the complex criminal trial process.
To illustrate this point further, some individuals with FASD may be more inclined to confabulate, be suggestible under interrogative pressures and questioning, and provide inaccurate information sometimes leading to the possibility of wrongful conviction. As such, it is strongly suggested that all legal professionals receive continuing education on topics related to FASD.
To go a step further, the creation of a specialized FASD-based legal training certification program may be warranted. As part of a proposed FASD-based legal training certification program, the following subtopics should be considered:
FASD: An Introduction
FASD and Competency to Stand Trial
FASD and Confabulation
FASD and Executive Functioning Impairments
FASD and Sexually Inappropriate Behaviors
FASD and Social Skill Deficits
FASD and Suggestibility
FASD and the Juvenile Justice System
FASD in Correctional Settings
FASD: Case Law
FASD: Communication and Intervention Approaches
FASD: Ethical and Legal Dilemmas
FASD: Forensic Screening Practices
FASD: Offender Reentry and Community Supervision
FASD: Sentencing Considerations
FASD: Vulnerability and Victimization
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.
By: Jerrod Brown
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.
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.
Broken hearts, threads of opportunity, and fur-covered love
I needed a thread or two back in 2006 when I was working on a 5K fundraising race/walk to raise awareness for fetal alcohol spectrum disorders (FASDs). FASD is an umbrella term used to describe the range of effects that can occur to an individual whose mother consumed alcohol while pregnant. The most severe form of FASD is called fetal alcohol syndrome (FAS). FASD is not “a warm and fuzzy” cause; people do not get all whoopty-do about it. Most would rather NEVER hear about it, much less tell our sisters they can’t have a glass of wine for nine months. So when I heard about a particularly enthusiastic participant in the race, I was eager to meet her.
Desi and Jon are social extremists and when they are by themselves, not in a social situation, they are in pain and lonely.They both tend to deal with loneliness by sleeping.
Desi and I just had a chat about this. Why is she lonely all the time and why does she feel so needy?
She said that when she is alone, she feels abandoned, rejected, and just not happy. When she is with people the hole inside her is being filled up. So she constantly craves friends to talk with, be with, have relationships with.
The sad part of all of this is that her need is so great that she often smothers her friends with demands and soon they are no longer her friend. Thus she ends up feeling more rejection, loneliness and despair.
This is a HUGE problem for my two kids with FASD.
They seem to plan their whole life around social events.
With support to get up on time, get daily household chores done, and a ride to work, Desi is able to hold down a part time job.
She works at a thrift store.
- She is able to manage a register pretty well that tells her how much change to give back, and she LOVES being with people.
- She can chat all the time during her job with new customers and her co workers.
- This is rather fun for her and since she has some pretty amazing co-workers, she is very happy there.
Her job fulfills her need to be social.
I love that for her. She always comes out of there bubbly and chatting with everyone and I feel good when she is happy. However in her personal life, I have watched her go through friends on a frequent basis. Especially boy friends, but also this happens with girlfriends.
There are a few reasons for this.
- She is socially and emotionally immature for her age. This started to show up at about the age of 16. Gradually friends were dropping out of her life.
- She also can get bossy and demanding and who likes to be treated like that for long? She is so needy that she suffocates her friends at times.
- Once she has a friend, that friend is going to be hearing from her a lot. She can just drain them dry. One wonders why she hasn’t yet met her carbon copy and wouldn’t that solve the problem? I mean someone who might need her as much as she needs them?
Desi and Jon both have little ability to be creative about their lives.
Organizing and planning are a challenge so having creative hobbies is difficult for them. Their lives are kind of “empty” outside of their job time. They need their external brain to be there partly just so they are not alone and to manage their empty time.
They both sleep most of the day and get up with no purpose or plan for the day, and both need prompting to get important things done, or these tasks won’t be completed. Then comes the free time. They would sit there with nothing to occupy it, unless they can find a friend, a party, some where social to meet with others.
Another reason I believe they both sleep a lot if there isn’t anything going on socially, is depression. When you are running high on social events all the time, it burns up adrenaline.
Too much adrenaline burns up serotonin.
These kids are born stressed and a lot of them deal with mood disorders. Their bodies are always in high alert and using up adrenaline. Adrenaline is a drug of it’s own type. It masks pain.
When something really bad happens in our life such as the sudden death of someone close, a person can go into shock. They won’t feel pain for days. The reason for that is the large amount of adrenaline that is rushed through the body. It shuts down the pain receptors.
So keeping life on a social high also helps our kids shut down the pain receptors, but in reality it also burns up serotonin which can cause the vicious cycle. This kind of keeps them on the wheel of seeking people to fill them up on the inside and take away their pain.
They are often very bored and both of them will often just go back to sleep to avoid dealing with that pain. Sleep can be a good thing for them, as it can heal the stress on their body, but too much of it isn’t healthy as it hinders their body’s need to get oxygen and exercise.
As an “external brain” I find I do need to use gentle suggestions to Desi that maybe she needs to slow down a bit and get some normal sleep. Or maybe tonight needs to be a sit in night just for some down time. When she runs too much, she begins to show it in mood swings. OR maybe it is the opposite. Maybe now she has slept too much and I need to make her get up and get moving a bit. Then of course I need to help her keep occupied or she is lonely again and wants to go back to bed.
They are adults and we can’t make them do anything, but I find myself trying to help her manage her sleep, resting times, exercise needs and social life too.
My heart does hurt for the loneliness that my kids deal with. I am here. They know that.
DARN FASD! Stole my kid’s abilities to occupy themselves.
Lord send good and positive friends into my kid’s lives.
Guest Post – Victoria Deasy
- If the infant is placed in an unstable household, the brain changes some more; if the child is placed in an orphanage, especially an orphanage where children are not held, caressed, nourished, allowed to move, spoken to and sung to, the brain has less of a chance to grow and develop properly; if the child is abused or harmed in any way, there are more doors shut to proper brain growth and development.
- Even if everything goes very well after birth, if the child is adopted, even right out of the hospital, there is “trauma” in the mere fact that the child has been removed from the birth parent to which there has been a nine-month bond, a bond that is now broken. We usually can’t separate out all the things that make up our children, especially if they are adopted and we don’t know for sure all the things that have occurred to create the brain and brain damage that is now part of the whole picture called FASD.
- Nutritional Therapies (diet, supplements, chelation, etc.)
- Neuro-Movement Therapies (NeuroReorganization, Musgatova, Rhythmic Movement Training, HANDLE and the like)
- Therapeutic Parenting (Heather Forbes, Bryan Post, Howard Glasser, and others), including psychologists/ psychiatrists, when needed
- School Choice (the child needs what s/he needs, not what is apparently available; this can include Montessori, Waldorf, homeschooling, unschooling, small private school, special ed school)
- Belief System (not necessarily religious) and a ‘village’ to support such. I think if these things can be put into place so as to keep the child calm, non-anxious, feeling cared for instead of experiencing constant punishment, anxiety (of things that no one knows are anxiety-producing), and feeling worthwhile, then healing has a chance.
- Our next thing to try was Omega-3 Fatty Acids (per THE LCP SOLUTION by Jacqueline Stordy, a book I found in the library, somewhat by accident). I had to research this even more and figure out dosages but there is a lot of information in THE LCP SOLUTION, even the brands used in actual research. We chose one of those brands, but I don’t really know why we chose the one we did. I was to discover several years later, that this brand has extra Evening Primrose Oil (EPO)and when we ran out and I gave my son my store-bought omegas, I noticed some regression (especially with hyperactivity, impulsivity, etc.) I went back to THE LCP SOLUTIONS and discovered some studies which showed that about 15% of boys didn’t do as well on Omegas until they added the EPO and then, they came up to the levels of the other study participants. Even though we have now switched to krill oil (for more bio-availability), we buy one for women because it has the EPO in it. This may or may not work for others, as well.
- Over time, as I researched and researched, we eventually added stomach enzymes, amino acids, extra Vitamin Bs, extra Vitamin D (only after a blood test to determine my son’s levels, showing how deficient he was)and then, added choline (per studies by Dr. Ed Riley, et.al, at San Diego State University. It took awhile to decide on doses but per the Linus Pauling Institute at Oregon State University, I at least knew what the ‘adequate’ doses would be (adequate meaning enough to keep someone alive). It also listed the possible ‘toxic’ amounts, an amount that was so high that no one would ever get that high. Later, I learned about piracetam. This is a synthetic and not for everyone. I started my son on this at age 17-18 and his senior year in high school was astounding, compared to all his other years in school.
- The choline affected my son’s memory…all for the good.
- The piracetam also affected memory but for the first time, he knew what his school assignments were, knew when to hand them in, actually handed them in, juggled his long-term projects, began to feel bad if he made a mistake, felt awful if he forgot an assignment….he actually would shake his head in disbelief when fellow students would do the exact silly things he used to do, only now he couldn’t believe how ‘stupid’ they were being (his word, not mine).
- These nutritional changes helped to get the Therapeutic Parenting into his psyche.
The Neuro-Movement therapies helped to re-organize
Is my son “cured” of his FASD?
So, let’s be the change we want to see.
Let’s do something big!!!!
Laura Nagle and the Kentucky folks have challenged us to a state-by-state Battle of FASD Awareness….
Hey Fetal Alcohol Spectrum Disorders Advocates,
Here are three different examples of short message you can send to the show. If you can, please personalize it with your particular brand of passion for this issue. If you don’t have time to add a sentence of your own, PLEASE still send one of these templates.
You can tip over the boat for babies and their mamas in THREE TINY STEPS:
- Contact the show yourself. Seriously, it takes 90 seconds – and every email matters. In the drop-box Subject line, choose “I HAVE AN IDEA FOR A SHOW”) http://www.doctoroz.com/contact
- Pass this email on to all of your contacts, with your endorsement.
- Click on our survey – it only has one question: Where Are You From? https://www.surveymonkey.com/s/HelloDrOz
We want to credit every member of our FASD Team. We’ll post the State-By-State results on our website for FASD Day – and we’ll figure out something snazzy to do for the winning state.
(Let me warn you –
Kentucky is gonna be hard to beat!)
BEING A “COGNITIVE” TRANSLATOR.
In an abstract world a brain that thinks concretely may need help with interpretation and by having a cognitive translator our daughter can avoid mistakes and frustration in professional meetings in finance, social welfare, medical, and the judicial process. When needed she enlists me as her cognitive translator and I attend the appointment or meeting to make sure the communication between the professional and my daughter is understood.
To translate I make myself an only when necessary piece of her conversations. I may bring a magazine to glance through to look busy or I may catch up on a text message. I make sure to give her the space she needs to manage herself and remain in charge. If she gives me a preset signal, I interject into conversation for clarification. After the end of the meeting I ask for a recap of next steps or meeting. Cognitive translations provides safety to remain on course and navigate through complicated adult discussion, keep her trust in the professional and increase skills and knowledge.
When she trusts and feels safe she is able to manage more complex situations. With time and experience, she manages her life challenges.
While some professionals consider my attendance a hindrance to her progress I wonder how clearly they understand the brain and metabolic system of a person with fetal alcohol.
- In a therapy session for anger management, a therapist described the range of emotions: “Emotions are like waves, there will be low times and high times and if you wait through a low time you can ride the wave up to a high time. Then you will ride the wave back down. Like this.” (Therapist demonstrated with her hand a waving motion.) I remained silent, watching my daughter process what she heard. When we arrived in the car, I said, “Your therapist had a good idea today about managing anger, tell me about it.” She replied, “I don’t get it, why would she want me to ride in a wagon?”
Why did this miscommunication occur?
- At a job placement meeting, a counselor stated, “I am a realist, do you think senior citizens would like your hair?” “I am a realist, do you think senior citizen’s would like your clothes?” (And she continued with more questions beginning with “I am a realist”) When we reached the car, my daughter turned to me and said “Why would a Realtor care how I look for grandmas and grandpas. They like me just how I am.” I was glad she had missed the professionals point.
- One adult I have translated for begins nodding her head when she “does not” understand. This provides two results – “The person explaining believes understanding has occurred and stops talking.” Another polite adult states, “Thank you so much for telling me that, now I understand.” Only later in the safety of her home do you realize the words understood were hot air.
As a cognitive translator, I do not consider myself an external brain any more than I would consider a seeing eye dog an external brain for a person who cannot see.
My daughter’s brain is beautiful – very different from mine and very capable. In a world that has moved from agricultural to industrial to informational and now to communication we have left this population behind. I do not believe my daughter is a lesser person because of her challenges. She is a strong, dynamic adult with valuable insight into a world that often seems to talk too fast and too much.
Cognitive translation empowers versus de-powers.