FASD Year In Review 2016

That you Our Sacred Breath for a Lovely Recap – I am so glad you took this on to share – You are an awesome mom and advocated. Keep on Keeping on – We we reblog this also at RealMindz.com – Love ya – Jodee

our sacred breath

I thought, for my last post of the year, it would be interesting to review FASD happenings in 2016. At first I thought I wouldn’t find much, but I found it’s been a busy year!

January: 428 Distinct Conditions Co-Occur with FASD

One of the top stories was from researchers at the Centre for Addiction and Mental Health (CAMH), in Toronto, Ontario (Canada), who identified 428 distinct disease conditions that co-occur in people with Fetal Alcohol Spectrum Disorders (FASD).

For those that are not aware: FASD is a broad term describing the range of disabilities that can occur in individuals as a result of alcohol exposure before birth. The severity and symptoms vary, based on how much and when alcohol was consumed, as well as other factors in the mother’s life such as stress levels, nutrition and environmental influences. The effects are also influenced by genetic factors and the body’s…

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Let’s Understand the #FASD Meltdown – 8 Reasons and How to Help Us

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fasdisreal-savvanna

Internal Understanding of
FASD Nuclear Reaction Meltdowns

 

Guest Blog by Savanna Pietrantonio

Savanna is one of our beloved FASD Survival Strategy Teachers

In an effort to reframe my understanding of meltdowns I’ve had to look deeper into the meaningful gifts of the meltdown and to change my fear and shame into acceptance that they are always going to be my body’s unique way of communicating with me.

I can go about my life for weeks accomplishing, learning, overcoming and shutting off or hiding the FASD part of me. But I feel everything intensely and emotional and physical distress is a daily part of living with the disability. In my attempt to hide my disability, act normally and bury my feelings I forget that this is not being true to my disability or myself. And my body lets me know.   Usually through a meltdown of epic nuclear reaction proportions!

I have to learn to respect the meltdown as a symptom of brain damage. I am not being willful, rebellious, purposely destructive or hateful. My brain is telling me that something is wrong and I need to stop everything and ask for help to both get through daily life and to regulate my emotions.

I have discovered eight situations, which cause stress hormones to flood my system, and unfortunately my brain is not equipped to cope with the overload I am asking it to handle. Sometimes I can handle one or more, but as they add together as life often will, there may be no stopping the ensuing meltdown.

keys-to-FASD

Find your own keys that trigger our meltdowns. Understand them and then reach out to a caring support to walk through your next day safely.

Eight meltdown situations

  • Social situations where I have to “be on” for extended periods
  • A change in a set schedule or a plan I am expecting
  • Fast paced days where I am thinking and processing constantly
  • Or the opposite-days when I am wandering “lost”
  • Anticipation of an event even if it’s a positive one
  • After the event, the letdown and “what’s next?” feeling
  • Something new being introduced into my life- a skill or an object
  • An expectation that I fear I cannot meet

Neurotypical people can manage inherently as the brain balances their self-regulating neocortex with their limbic emotion regulating system—‘wise mind’ and ‘emotion mind’. My brain because of prenatal alcohol damage can’t do that. Messages between these two parts of the brain get stuck like tangled Christmas lights and I am triggered into an emotional spiral down the slippery slope to meltdown.

To the best of my ability I can tell you that the warning signs of a meltdown before or after any emotional high or low are there. Both my external brain and I must be on the lookout and aware of them. If the warnings are missed the overload becomes unmanageable. These signs present themselves ahead of the event or days to a week afterwards.

Compassion and understanding provisions us to walk into our complex moment and process safely.

Compassion and understanding provisions us to walk into our complex moment and process safely.

17 clues of an ensuing meltdown:

    • Restless, interrupted sleep, night terrors (others have vivid dreams)
    • My heart feels like it is racing and an uneasy sense of dread or urgency
    • Boredom (really not knowing what to do next-directionless)
    • Indecisiveness
    • My surroundings become cluttered (suddenly I can’t pick up after myself)
    • The tired but wired feeling
    • Inability to focus on one thing but the impulse to multitask to the extreme
    • Defensiveness and extreme sensitivity
    • Acting withdrawn and feeling alone and isolated or isolating
    • Itchy skin and breakouts
    • Fidgety movements like uncontrolled scratching (others may pick or bite a part of hand or area of body – bottom lip)
    • Easily frustrated to the extreme (slamming doors or verbal aggression)
    • Obsessions over unrelated things and agitation with them
    • A profound sense of sadness or unexplainable loss
    • The feeling my brain is full and slow, like when you overeat and your stomach feels uncomfortably full
    • Spending money carelessly and in excess

Pre-crisis—compassion

Before a crisis can occur its critical to stop the spiral by having a compassionate, understanding, non judgmental external brain who has learned not to take your behaviors personally, step in and guide my thinking, give me a perception check or just show care and not let me disconnect. This is not easy as my behaviors are shouting for help while pushing people away at the same time.

I may say something very hurtful when my external brain says, “What can I do to help you?”

“You can die!” I shout because I don’t know what he can do and my brain is no longer connecting to the part of me that can share thinking and feeling.

But there really are things he can do to help me and they really do bring down the energy and place my life back into a state of regulation.

  • Hug me and say I understand. “This is because…” and name it for me
  • Hold me while I cry and listen while I try to get my feelings out.  This may be for more than one day as perserveration is at its most intrusive
  • Help me pick up the scattered brain puzzle pieces and put them into order.
  • My external brain maneuvers my day, stepping in and canceling appointments or doing a task for me so that I can include self-care and put downtime into that moment.
  • Provide direction—one direction only please.
  • Break down my day or task into single doable steps.
  • Becoming compassionate and nonjudgmental.
  • Or I need to be told to stop all my activity and go rest.

And provide time for me to complete self-care:

  • Sometimes I need a complete escape and to have a fun, new adventure — this builds neuroplasticity.
  • I  focus on the foods that build a healthy brain-walnuts, salmon and dark chocolate—the magic trifecta for calming. Drink lots of water-mild hydration causes tiredness and fatigue.  And if we’re not talking nutrition- banana bread, carrot cake, mac & cheese, spaghetti. The things that comforted me in childhood.  Baking these things can be surprisingly sensory and calming.
  • Sometimes I need to get to a yoga class to reconnect mind, body and spirit or I need an aggressive cardio workout that burns off  the adrenaline and cortisol.

I need an intervention so that I can concentrate on the work of really surrendering to my emotions appropriately, processing whatever it was that happened, talking out my feelings and fears, feeling compassion for myself and coming to a letting go of it. It is exactly like the work of the grief process. If I skip this step, the symptoms become very aggressive and I am propelled into full fight or flight reaction and I explode with emotion and nothing and nobody is safe from the destruction or self-loathing I feel. This is where I can hurt myself, others and possessions. (Note: some people shut down and freeze.)

Handling a meltdown with love

While my external brain or myself can’t always read my bodies clues, I have learned to meltdown more appropriately as I begin to trust the process.

We have set some guidelines:

  • I can’t run away, especially by driving, but staying in trust and working through the intense situation and he can’t leave me at that moment or I am unsafe.
  • No arguing when glass things are within throwing reach – find a safe open place to work through the issue and I have a sensory or squishy toy in my hands instead.
  • No swearing (this is so hard when I don’t have words).
  • A pact I made with God and myself is that I will not engage in self harm or use substances. Ever!
  • I am not to strike out in anger at him.
  • I am not to say hurtful, blaming things to him about the past.
  • We have personal space boundaries and if losing it is imminent my external brain cannot—imperatively—cannot react with anger and punishment or aggression and he must not come into my personal space.­­

Sometimes though unfortunately he has to just hold me down and use extended breathing techniques and calmly stroke my hair and tell me I am loving and loved, all is well and I am safe in a soothing voice over and over again while I kick and scream and cry until I am exhausted and its all gone and I’ve let go of my fear, urgency and panic.

Triage after the storm

Afterwards the storm really is over and I can be helped into a calm environment where he can prepare a bath (running water is soothing) with dim lighting, zen music and calming lavender or other essential oil, while I drink a magnesium supplement or I need to be soothed to sleep with weighted blankets and soothing guided meditations playing while he rubs my back or uses tapping on me.

It is possible to get to the place on the other side of the meltdown to where you can look at it and see where intervention might have stopped the spiral and what might we do differently for the next time. And reinforce that what my body was telling me is that I need to heed its signals. By understanding and reflecting back I can empower myself when I list these and review them.

The gifts of the cathartic meltdown are the stillness afterward that allows for more clarity   It allows me to see what I need to let go of and what I need to clear space for. It reminds me that I can empower myself by respecting my FASD and that I have to act authentically and within my own trueness not separate from it but within in.

I no longer need to feel shame, as I know God made me exactly how He wanted me to be with unique built in ways of communicating my needs. I’ve come to embrace and be comfortable in the discomfort knowing that every emotion felt will pass if accepted and felt with compassion.

I can return to the path of “Buddha-nature that is found within suffering and our relationship to it, not by escaping it.” 1 The taking care of self becomes easier and better the more often you do it and the more your heart and soul become aligned. After all, the Spectrum is halfway to spectacular.2

Sources:
1 Kiera Van Gelder
2 Koren Zailckas

 

 

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Mac’s Christmas Miracle – a delightful story – #FASD #autism #specialneeds #penguin

RealMindz looks forward to working with Ann in the coming year and helping parents CONNECT the pieces to help their children. We began our RealMindz program introducing people we love with a little boy from Lancaster, Wisconsin named Mac, who is the son of Ann and Dr. James Yurcek. Today, we share Mac’s Christmas Miracle and his mom’s think out of the box to build Live Abilities for her sweet Kindergartner. We wish each of you and your families a very Merry Christmas, Happy Holidays, and the Best New Year Ever!

mackie-penquin-lookMom Hatches a Plan For a Silent Little Boy for Christmas

A special needs kindergartner gives gifts to his friends in school and gets a miracle in return!

When McKellan Yurcek, known as Mac to his friends at school, began Kindergarten this year, his Lancaster, Wisconsin teacher, Mrs. Chambers gave him Snack Penguin to help him focus on eating. Mac is a silent little boy who is diagnosed with Fetal Alcohol Syndrome, Autism, an Involuntary Movement Disorder, immune compromise and vision challenges. He needs a high calorie intake to survive.

Everyday Mac asked to take Snack Penguin home and he did not want to return him. Eventually mom, Ann Yurcek, found a duplicate penguin Mac calls Furry. Because Mac had trouble talking to other children, Mom sent Furry to school everyday  with Mac in his backpack to comfort him. Furry and Snack Penguin became classroom cousins. Over time it was discovered, Furry did more than just comfort Mac. Furry became a bridge of friendship and communication in the Lancaster Kindergarten Penguin classroom.

As time went on Mac realized that Furry stabilized the movement in his arms and helped him walk without falling so often. Holding Furry was comforting. Kindergartners loved being with Mac and the more they tried to talk to Mac, the more anxious Mac got trying to talk back. One day, at the computer, Furry began answering. Mac was communicating through Furry even though the professionals had struggled.

All fall, Furry has been going on all kinds of adventures with the Yurceks to build relationships with his classmates. Furry has been in candy stores and on reindeer rides with Mac. He is a friend with Elf on the Shelf, he’s been a doctor and done rounds with Mac’s Dad, gone fishing, and he’s been a firefighter. Anything Mac does, penguin does. Mac and Furry are constant companions. And if Mac can’t go to school that day, Furry may show up online to say “Hi” in penguin speak.

Mom hatched a plan. What if all the children could have their own penguin, just like Furry? Then the penguins could become friends and all the kids to talk through and about their penguins with Mac – maybe; just maybe Mac would soon transition to talk back to children. Mac is able to speak, but only when he is not anxious and speaking on what he knows. He has trouble with conversation.

Socialization is an important part of growing up and Mac has attended only five days of school in December. He was home bound for most of his 4K year due to his health challenges. All the bugs at school came home with him and throughout November and December he was very sick. Each morning the Kindergartners sign on to the computer. Mac can hear everything the kids say, even though he can’t always see everything. Mac struggles even with the computer and has been working hard to talk back and forth with the computer. He often listens in
silence.

With holidays coming and parents searching for Hatchibles. Mac’s Mom was hatching a plan to increase integration into his classroom. Mac stood out as different. “What could be done to create equality when Mac was so challenged?” In search of another Furry, Google images helped Mom find out who Furry was. He is made buy Aurora and he comes in four sizes and different colors. But where could she get one for each kindergartner in his classroom? It took seven stores, Amazon, and Barnes & Nobel to solve the dilemma and special permission to break classroom rules to buy presents for the other children—all without his teacher Mrs. Chambers knowing the special Christmas secret.

On Thursday, Mac finally got to return to school. He was on antibiotics and had already lived through all the school bugs. Mac’s autism therapist joined him with his mom delivering fourteen bags, a big wrapped package for Mrs. Chambers and a teeny tiny package for Snack Penguin.

Mac went around the room, child by child and with prompting wished each and every one of his friends “Merry Christmas”.

Not in penguin, but with his voice. Soon, all the children’s penguins were talking and Furry said, “Merry Christmas!”

FREE GIFT FROM THE YURCEK FAMILY TO ALL OUR READERS DECEMBER 24, 2016

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FASD – Born addicted

Thank you for this article on #FASD – you share the story of so many others. Your words speak volumes.

LeeHarveyHeath

So 5 years ago today I had my last alcoholic drink, why is that important….I was an addict, 10 years of drinking from the age of 16. I started after being placed in a hostel because I no longer wanted to live at home, I became addicted to alcohol in a very short space of time, but I was born addicted.

What fuelled my addictition at that age was the death of my father due to his addiction, I was 10, and around two years later the murder of my classmate, both deeply traumatic for me at that age, not to mention all the early neglect I had been through that I mentally tried to block out constantly.

As the years past through my addiction, nobody detected my FASD, why???? Because the alcohol and drunken behaviours mask everything that was wrong with me, it covered my memory, anxiety, depression and…

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FASD is so tiring

Thank you Lee for an inside look at how it feels to live with the sleep issues involved in the challenges of fetal alcohol. I am reblogging this and also adding it to a resource for parents under by SLEEP STRATEGIES page – appreciate you sharing your wisdom – it will take all of us together to figure solutions out… our experts (the people with FASD who have the inside experience), caregivers (who have the outside experience) and professionals (who have access to resources and tools) – again thank you… if you want to see the sleep strategies here is the link http://realmindz.com/jodeekulp/2016/10/12/my-best-sleep-strategies-for-energizer-bunnies/

LeeHarveyHeath

So yet again I’m sat here wide awake at 2.50am. I’m tired, I’m always soooo tired, but that doesn’t mean my FASD brain is going to say ‘oh we’re tired now Lee, let’s get some sleep before our busy day tomorrow.

Nooooo, of course its not, MY brain is saying ‘oh your tired, your body aches with tiredness, your so tired of being tired you want to cry, and that melatonin isnt going to work tonight, oh what about this idea, or what about if we did that, yes and we must do it right now because our cognitive impairments won’t let us remember if we go to sleep, so we HAVE to do it right now’

Going through this most nights, is not fun, especially when its been going on for so long that you can no longer remember when you actually woke up feeling like you got some…

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Chronological Age vs. Developmental Age

Because this affects so many of the individuals we love – recommended reading.

help4yourfamily

written by Kate Oliver, LCSW-C

Having a blog on WordPress is so nice in that I got a nice little report for the end of 2012 letting me know which of my posts has gotten the most attention, etc. By far the most popular post was this one! So, in the spirit of sharing and refreshing for the New Year, I thought I would update and repost this blog, since it was one of my earlier ones and may have been missed by some of the folks who are newer to my blog. I keep my comments open and would love to hear if people are getting what they are looking for from this post even if it has been a while since I originally posted. Enjoy!

Chronological age vs. Developmental Age

When figuring out how to best meet the needs of our children, it is important to understand their…

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The Maiden and Managing Money

A delightful and REAL read from our favorite Maven and Maiden… keep posting and welcome back on you 900 km Red Shoes Rock Journey

our sacred breath

The Maiden became an adult in the world when she turned 18 in August. And with that comes a whole new set of challenges, difficulties and exciting new possibilities. However it also comes with new learning curves for both of us. Understanding money and math can be a challenge for many people, including those with FASD.

She has difficulty understanding money, as has been the case for as long as she has had an allowance. I’ve tried to give her the freedom to spend it on what she wants. She needs to learn that when it is gone, it is gone. She has little self-control and is not able to save. No matter a dollar, ten dollars or a $100 – if she has it she will spend it. And not always wisely.

She has been approved for ODSP (Ontario Disability Support Program). Every month she receives financial assistance. We agreed that…

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Day 6: Red Shoes Rock (across Canada) to Stop FASD

Thank you for your trek of 900 miles across Canada and sharing your RedShoesRock journey with all of us…

our sacred breath

No travelling today for the red shoes.

Red Shoes Cold Lake
We are in Cold Lake, Alberta to attend a memorial service for a close family friend of my boyfriend.

I don’t know the family, but it was a very moving service and this woman sounded like she was a wonderful woman. Many spoke of her love of life and people. She accepted everyone and focused on the good in everyone. For those of us with children or family members affected by FASD, we need more people in our worlds like Kay. Many of us live lives filled with judgement and rejection.

The service also reminded me how fleeting life is. Although this woman had a full and long life, a study published a few months back did not hold much hope for people with FASD.

FASD Life Expectancy

While the statistic is disturbing and at first frightening, the Virtual Relay of the Red Shoes Rock to…

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34 – A Number Key to FASD Awareness

Hey = Savanna Pietrantonio, Val L Bate, Taliona Mai Hajisalad, R.J. Formanek and all you wonderful others – You are PROOF we can make this happen differently. We got our 90 RUNNERS we did this thing guys

FASD: Learning with Hope

Copy of Life Expectancy for Person With Fetal Alcohol Syndrome-2By @FASD_Mum

34

I can’t stop thinking about this number.  I try to shake it.  I walk away from the computer.  I divert my attention.  I try to block it out.  But eventually, there it is again.  Stark.  Cold.  Flawed, perhaps.  But it cannot be ignored.

According to a March 2016 study based on data from Alberta, Canada, this is the average life expectancy at birth of a baby born with Fetal Alcohol Syndrome.  It means that statistically, using standard scales used to estimate these things, the professionals assume that half of the people with Fetal Alcohol Syndrome will live longer than 34 and half will live less than that.  This is a limited figure, a guess.  It deals with only one part of the Fetal Alcohol spectrum.  Quite probably the people you and I know with FAS will live much longer than this number.  We shouldn’t dwell here for…

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