Loneliness and loss: a lifetime of good-byes

So sorry for your and the maidens loss – words are never enough – alRed Shoes Rock sends our love

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The maiden’s life has been a series of good-byes and losses. The loss of her birth family when she was brought into care. The loss of her foster family and friends when she was adopted and moved away. The loss of pets, people and friendships throughout her short life. All have impacted who she is, but this last one has brought tears and a grief that will take a long time to heal: the death of her best friend.

Friends have been few and far between in the maiden’s life. It seems every time she has made a friend, that friend moves away before the friendship ever really develops. If the friend does not move away, the friendship does not develop because friendship is a very difficult thing to maintain for some with fetal alcohol spectrum disorder. The types of friends they attract may use them because they are so…

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Day 74 of 99 Days to FASDay

5 wishes and loving persons with #FASD Thank you Yvonne

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Day 74 of 99 Days to FASDay shares the 5 wishes of the Red Shoes Rock Real Families campaign.

So, what exactly is Red Shoes Rock?

From the Red Shoes Rock Team:

R.J. Formanek began the movement to bring visibility to the invisible lifetime (yet preventable) disability of fetal alcohol spectrum disorder in 2013.

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In 2014 Better Endings New Beginnings (Jodee Kulp) and LiveAbilities Good Fruit Camp Productions (Sam Guerrido) joined RJ to help build awareness leading up to International FASDay on September 9 – we gave it a go for 30 days having fun, gaining almost 1,000 followers.

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We continued in 2015 for 60 days.

Last year we joined forces with the Tiny Titan Team and Ann Yurcek, Sasha with Savanna Pietrantonio and Mark and Johan Wiklander of RealMindz plus loads of friends from over 40 countries. Over a 90 day campaign we reached 150,000 views of the 90 Real…

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Day 67-73 of 99 Days to FASDay

9 Lessions to Build Success for adult with #FASD – Thank you Yvonne.

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Nine Lessons Learned: Supporting Success for Adults with FASD

Day 73 of 99 Days to FASDay

This post combines the last week’s worth of posts. The information was discovered in the guidebook Supporting Success for Adults with Fetal Alcohol Spectrum Disorder (FASD) published by Community Living British Columbia (Canada).

Rather than posting the graphics for each day on WordPress, I decided to combine them and quote the information directly – you can still find the  individual infographics on the OSB Facebook, Twitter or Pinterest accounts if you would like to share one or all. The social media  links are on the bottom right side of this article (just click the graphic for the specific social media site) or you can find the links on the FASD on the Web page (which also includes a Tumblr link).

I found this Guidebook to be eloquently written, accurate and respectful. I will honour the professional information they have created by…

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Perseveration – Try a Little Upside-Rightside Down Thinking

By Jodee Kulp and RJ Formanek

My father taught me to tackle a problem upside down if I couldn’t figure it out. He told me there are many ways to look at things and maybe my eyes and understanding were not looking in the right place or at the right angle. Maybe my ears didn’t hear the truth that was meant for me. As a trail guide, my father often guided me into new territory with finding answers to things in ways other people had not approached something. Perhaps this is why I love the challenges posed to me when I love people living with FASD.

I have learned that the issues in children with FASD and their symptoms of FASD do not disappear in adulthood. Though they may appear to change as individuals learn to manage the challenges. The supports of childhood disappear and it is common that with transition life may look messy for a while. As RJ says, FASD is complicated.

In the next series of Blog posts, I want to share a different way of understanding to help neuro typicals begin to build a compassionate bridge the people I love need for growth.

Let’s look at the upside of PERSEVERATION.

Perseverate means to
Pursue – Stick it out – Keep going – Prevail 

Most people perseverate sometime during their lives. A new wife loses her diamond from her ring while filling gas on a pea rock filled tarmac. You have lost your keys or phone. You wreck your father’s car and must tell him. Your best friend or you has just received a medical diagnosis. You are scheduled to give a speech. Something bad just happened or may happen and you can’t let it go.

RJ SPEAKS – Perseveration IS a very tricky issue, and especially as we enter adulthood as well. In my own case I have come to see it means my brain is starving for answers that seem imperative at the time. It’s not obsession…that often has not rational basis, but I feel perseveration actually does have a reason. We NEED to understand our world in order to feel safe, and this often means finding out every single detail of something. We learn very early in life that things we do not understand can and often will hurt us.

This goes much deeper than executive functioning… this gets down deep into the limbic brain, where fight or flight is also often triggered as a defensive mechanism as well.

 

The need to understand . . .
is the need to feel safe.

Finding ways around and dealing with the perseverative items is a challenge, and sometimes transitioning into another activity might help for a while. But I think in the end, the questions will remain and will one day need to be answered… so finding ways to help the person work through the perseveration process can be very good for everyone involved.

SUPER GLUE

Perseveration is like super glue and once you step on it, you can’t move until you have completed THAT step, found THAT answer, understand THAT idea. You see there is no release without understanding, finding or completing. That is the empowerment that releases us.

Perseveration can show up in the most surprising places and times.

 

  • It can be a motor behavior or sensory repeated behavior
  • Stating, “I am a good person” or another statement over and over for assurance
  • Pulling on a drawer, rope or door even when that method is not working
  • Talking about an issue long after the rest of the people have moved on
  • Worried about an old event or trauma even though I am now safe
  • Asking a question again and again even though I have been given an answer
  • Feeling stuck in anger or fear or worry
  • Having to talk about something that I experienced over and over
  • Answering the same answer to different questions
  • Tearing the whole house up looking for something I lost
  • Texting a friend over and over even when they don’t reply
  • Trying to fall asleep with my mind going a million miles an hour
  • Repeating repeating repeating something so I do not forget it

Until I find a solution, I can’t move on.

Otherwise, it is going to be forgotten.

Help me!

 

 
Perseveration-Red

SAVANNA SPEAKS
Perseveration is our brains resting default.
No rest at all.”

So why does it happen?

For some of us, it is a way to process or remember thoughts or experiences. It can actually work like a learning style – we speak out what we need to learn, hearing in our mind what we are trying to understand. At other times it is a response to overload, stress or exhaustion by adding a filter to our environment. The medical professionals state it is an inability to certain responses or shift our attention. It is so much more!

So how can another person help to make a difference?

Don’t fix it for them work on it with them. Know that it may be a tiny step by tiny step process and who cares how long living life really takes!

Ann Yurcek who is a mother to over a dozen people who can get stuck share some insight

  1. You must have already established that you are a person who is trustworthy.
  2. You have to be comforting, calm and kind – never condescenting or judgmental. I name it in a kind way. “I see you are curious about… do you want to talk about it? —I hear you are wondering… do you want to work with me on that?—I hear you are worried about… can I help you?”
  3. Later talk calmly about what you see or hear when the person is relaxed and feeling safe. Be an encourager to help them understand. Process with them. Help them connect the dots with simple phases. Use a social story. Eliminate “YOU” language and use no judgment. Offer to be a safe person to come to when the feeling of stuck starts happens. Come up with two plans to help them help themselves.
  4. Become a safe person to be a life line—the phone a friend—the trusted coach—the trail guide—so when they are stuck they can count on you to help think it through. Become the trusting person they can come to to help solve their problem.

This is where my father’s trail guiding comes into play. Some things are immoveable like the rock illustrated above. That little rock is holding up a big burden and under more stress the individual mind focuses on survival.

  • For people with high levels of executive functioning, abilities to plan and emotionally regulate are lessened
  • For a person primarily from their cortex (thinking brain) they lessen their abilities to think and move to a more emotional (flight, fight, freeze state)
  • For a person who is already in the flight, fight and freeze motor planning can be affected

To help a person return to a higher level of thinking takes a sense of calm and safety.

Go on a Treasure Hunt in a quiet relaxing time

  1. Talk about it – When, where, how (listen to the person’s view)
  2. Can it become a problem – When, where, how (listen to the person’s view)
    • How does this action help you
    • Does it affect other people
    • Does this action stop you from doing other things
    • Is there something else you could do instead that is safe
    • How can you get help if you need it
  3. Is there a stopping point – you may learn there is a point of no return like in meltdowns – and if so where could there be a stopping point.
  4. How can I help you?
  5. How can you help you?

What is a trail guide?

My father SELDOM gave me the answer.

He did provide clues and markers to help me come up with other choices, broader visions and help to step out from the details. He did give me clues or ask questions I could find my own answers for. And he supported me in walking on the new path I chose for myself. If I failed he helped me process what went wrong, pick up the pieces or put them back together and start again. 

Ann asks in the morning when her children are waking and in restart mode for a new day, “What is your solution to that?”  And then she helps them think it through as a loving coach. You don’t do it for them, you do it with them. These children and adults have brilliant minds that are wired very differently from the typical person and you have to help them learn to find choices and solutions that may be very different and still work very well for them.

Know that finding solutions CAN TRIGGER more perseveration. 

Perseveration can become a healthy way to process and can help a person if the guide supports the person with love and kindness or even just have someone to listen so that something can be talked about to move on. Sometimes you can’t move on until you have told or shown someone. And especially for persons of trauma expect more than a few roller coaster spins to:

  • Achieve greater understanding
  • Move short term memories into long term
  • Think about possibilities
  • Find a solution
  • Learn skills
  • See the big picture or the details
  • Process emotions

Through the process of finding a way, my father encouraged and provided a safe haven I could trust in when I could not trust myself. Today, I often pay this gift forward.

 

 

Day 66 of 99 Days to FASDay

Thank you, Yvonne, for this #FASD post – Your #RedShoesRock with us every day as we create visibilities.

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Day 66 of 99 Days to FASDay

On Sunday, August 6, we are on Day 66 of our 99 Days to FASDay. Today we offer a reminder for those who are working with, supporting or just hanging out with someone with FASD – remember stage, not age. 

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This classic sign of FASD described by Clarren, Malbin and Streissguth. A person with FASD will simultaneously exhibit behaviours common to people of different ages. For example, someone with FASD might be 18 years of age, sound like a 22 year old (expressive language), act like a 6 year old in a social and moral sense, read like a young teen and understand time and money at about the same level as a 12 year old.
People with FASD tend to catch up to themselves as much as they are going to by their early to mid-thirties.

Known as dysmaturity, it is the developmental “gaps” between a person’s chronological age…

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Day 62 of 99 Days to FASDay

Unfortunately, many children and adolescents with FASD go unrecognized and untreated (and the symptoms of their hidden complex issues becomes looked at as misbehavior)

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Day 62 of 99 Days to FASDay

From the article: Fetal Alcohol Exposure Often Mistaken as Behavioral Issues  – Medscape – Jan 12, 2015:

The investigators note that although children with FAS are usually correctly diagnosed on the basis of growth criteria, central nervous system impairment, and characteristic facial features, other, more common disorders related to prenatal alcohol exposure may be missed.

“Unfortunately, many children and adolescents with FASD go unrecognized and untreated; this is due to multiple factors, including unknown maternal history of alcohol use during pregnancy, lack of consistent facial dysmorphology and growth impairment across all diagnoses within the fetal alcohol spectrum, and the high rate of co-occurring mental health disorders,” the authors write.

They hypothesize that in addition to these factors, “the historically confusing language and diagnostic terminology applied to alcohol-affected children, and the perceived stigma against addressing alcohol use by pregnant women most likely contributed to the majority of affected children and adolescents…

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Day 63 of 99 Days to FASDay

Ten years later we are still facing a lack of knowledge from physicians and health care providers when dealing with #FASD

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Day 63 of 99 Days to FASDay

Risk Factors for Adverse Life Outcomes in Fetal Alcohol Syndrome and Fetal Alcohol Effects

Ann P. Streissguth, PH.D., Fred L. Bookstein, PH.D., Helen M. Barr, M.A., M.S., Paul D.Sampson, PH.D., Kieran O’Malley, M.B., D.A.B.P.N. (P), Julia Kogan Young, M.Ed.

Many of us in the FASD world will have heard about this Study (this link is to the section this post refers to) and see/hear quotes and stats from it, but for those of you who have never read it, or are new to FASD, I encourage you to read it. Although the authors state: “It is a referred clinical sample, and as such cannot be considered representative of all people born with FAS/FAE,” it is a snapshot in time of 415 individuals ages 6 – 51. Although each person with FASD is unique and their behaviours and challenges and strengths will be unique, it does provide information that shows that…

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