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Archive for June, 2012

Lead with your heart…you will see us through different eyes.

What amazes me is the number of views on this blog even though I have not written for awhile. It just shows how much this is a need! I know it is. I have struggled with some things. You know us FAS folks…lol. I read a quote from Leo Buscaglia in the book Born for Love. Didn’t mean to. Just organizing books and it fell open to this page.


Love requires effort. Love never dies a natural death. It dies from neglect and abandonment. It dies of blindness and indifference and of being taken for granted. Things omitted are often more deadly than errors committed. In the end, love dies of weariness, from not being nurtured. We don’t really fall out of love any more than we fall into it. When love died, one or both partners have neglected it, have failed to replenish and renew it. Like any other living, growing thing, love requires effort to keep it healthy. 


For those of us with Fasd, love is critical. Failure to thrive runs through our veins. Love is our fuel. The simple things like a smile, a wink, an I love you makes our entire day. The look of disappointment, the shake of the head, the eye roll in disgust, those could kill our entire world. We love deeply. We crave positive. Our actions many times do not allow for those things but our hearts mean well.

A person’s words can resonate through our entire being for days. Choose words carefully when talking with someone with FASD. Security and stability are critical as well.

To us, the world is one giant cyclone. We live in constant confusion, but yet people around us expect us to know exactly what they are doing and talking about. We really don’t.

Love.

If you lead with your heart, you will see us through different eyes.

I guarantee it.

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This was written by a mom of an FASD child

Often in the nighttime I lie awake in bed; Replaying back the piercing cries and screams within my head. I wonder how my daughter can get through every day, with feelings of inadequacy always in her way. She tries so very hard to be, like other kids her age, but instead she fights confusion and blindsiding bouts of rage. Five minutes is an ‘hour’ on a clock that never stops, from morning light to bedtime, we all go until we drop. Little things are ‘crises’ so re-directing is the plan, but if her world is spinning fast, she may fall off before we can…on good days we see smiles, and a laugh that warms our hearts, the brightness of those smiles is a light when times get ‘dark’… Oh look, the sun is shining…it is a brand new day, we are determined not to let the darkness have a say. We’ll keep repeating, and re-teaching, on the clock that never ends…between her smiles and the sunshine, we’ll always find a way…Barb Tanner

Great article on FAS!!

This was posted on FASlink so I thought I would post it on here. Very informative and from what I know about FAS, personally, and from the research I have done, this is very well written and accurate. So many people do not understand FAS. I just had to put this on here for others to read. 


The term Fetal Alcohol Spectrum Disorder [FASD] embraces Fetal
Alcohol Syndrome [FAS], Partial Fetal Alcohol Syndrome and Alcohol
Related Neurodevelopmental Disorder [ARND].
The absence of the FAS facial features does not exclude the diagnosis of
brain damage from prenatal exposure to alcohol. Only 10% of those
afflicted will have the facial features. Only 15% will have an IQ below 70.
85% will have a normal range IQ or higher than average IQ. However, all
those afflicted with FASD have a low Adaptive Quotient as measured by
tests such as the Vineland Adaptive Behavior Scales.
Those afflicted with FASD demonstrate primary and secondary disabilities
to varying degrees depending on the quantity of alcohol taken, the
manner it is drunk eg binge drinking, the time in the pregnancy and the
health and nutrition of the mother.
Primary disabilities are the inevitable consequences of prenatal exposure
to alcohol.
-Impaired spacial learning
-confabulation – often interpreted as lying
-attention disorders, easily distracted and perseveration –
perseveration/transition problems
-sensory problems- self mutilation
-impaired executive functioning i.e forming, planning and achieving goal
directed task
-learning disabilities
-low I.Q. [15% only ]]
-comorbid psychiatric illnesses [previously considered to be a secondary
disability]
-memory problems, short term memory for verbal and visual recall. [
when the verbal processing is good and visual poor it is known as a nonverbal
learning disability ]
These primary disabilities lead –
-to difficulty communicating-giving and receiving information
-takes everything literally – concrete thinking
-problems with planning and organizing
-impulsiveness, poor judgment, easily lead
-failure to learn from experience
-difficulty with abstractions, idioms, humor, sarcasm
-difficulty relating cause and effect, anticipating consequences
-difficulty appreciating others point of view
-problems expressing remorse or taking responsibility for behavior –
frustration.
-bowel and micturition control problems
FASD is not just a central nervous condition. It also effects the peripheral
nervous system. Those afflicted with FASD have sensory abnormalities.
They may be over sensitive or under sensitive. Under sensory means
that they are less sensitive to external stimuli. They are less sensitive to
cold or physical pain. They have a need for sensory stimulation resulting
in inappropriate hugging and touching. Repetitive scratching, pulling hair
out, and more severe kinds of self mutilation [often interpreted as OCD
or attention seeking] provides comfort, especially in times of stress, that
others obtain from more normal sensory stimulation.
It is my observation that those with FASD exist in two states, 1 -a mind of chaotic,
uncontrolled and uncomfortable thoughts, usually described as being bored. and 2- a mind
perseverating [ super focussed ], with or without physical activity.
They seek the second to escape the first.
What they perseverate on is determined by their particular set of cognitive, emotional,
information processing, memory, expressive and sensory disabilities; as well as their early
childhood experience and their immediate environment, including how others relate to them.
What they may perseverate on to soothe themselves extends from cutting, provoking
others, to more acceptable behaviors, such as playing video games, reading and sports.
Alcohol and hard drugs are used to obliterate the 1st state of mind. Those with FASD can
often stop using them providing they have an alternative focus of perseveration.
This is not true of Marijuana and Tobacco, which generally appear to have a specific action
that reduces their multiple chaotic thoughts and allows them to focus on one process.
The ?medicinal? use of pot is lost if it is used to excess, in which case it assumes the harmful
role of other street drugs.
Barry Stanley
May, 2009.

Model school for kids with FASD

Wanted to share this information. The United States is so far behind Winnipeg in educating FASD kids. I will provide a video link about this school as well. Pretending FASD does not exist does not help anyone. It does. We need to add it to IEP’s and get kids the help they need. 
Winnipeg division has model programs

Elsewhere, there’s a patchwork — or nothing

Maddy Sinclair works in a rocking chair in the Bridges program at David Livingstone School, which is primarily aimed at children with FASD.

Maddy Sinclair works in a rocking chair in the Bridges program at David Livingstone School, which is primarily aimed at children with FASD.(WAYNE.GLOWACKI@FREEPRESS.MB.CA)

Alex Everett works one-on-one with education assistant Sylvia Armenti in the Bridges program at David Livingstone School, which is primarily aimed at children with FASD.

Alex Everett works one-on-one witheducation assistant Sylvia Armenti in the Bridges program at David Livingstone School, which is primarily aimed at children with FASD. (WAYNE.GLOWACKI@FREEPRESS.MB.CA )

Storm Whiteway responds in class in the Bridges program at David Livingstone School, which is primarily aimed at children with FASD.

Storm Whiteway responds in class in the Bridges program at David Livingstone School, which is primarily aimed at children with FASD. (WAYNE.GLOWACKI@FREEPRESS.MB.CA )
If you’re a kid with FASD, you better hope you live in the Winnipeg School Division.
Its programs and classes are a model for teachers across the country, the province and the rest of the division.
It’s the only school board in Manitoba that has special classrooms for kids diagnosed with FASD. The Right program at Shaughnessy Park School and the Bridges program at David Livingstone offer classes designed for kids with FASD who aren’t able to learn in a traditional classroom.
“The ultimate goal is for kids to be integrated into regular classrooms,” said David Livingstone principal Debbie Lenhardt Mair.
In the fall, the school division extended the Bridges program to junior high and Grade 9 students at R.B. Russell School.
It also created a new position for one of the program’s pioneers to help all 77 schools come up with learning plans for students with FASD (Students don’t need a formal FASD diagnosis.)
“It’s getting busier and busier,” said Deb Thordarson, who is still based at David Livingstone School. “The strategies we use are good for all kids.”
Outside the Winnipeg School Division, there are many children with undiagnosed FASD who could benefit from the teaching tools and methods they’ve developed, she said.
“I’d like to see Bridges and the Right program in every school,” Thordarson said.
But elsewhere in the province, services for kids with FASD are a patchwork.
None of the other 38 school districts in Manitoba has anything like a David Livingstone School. Several school divisions contacted by the Free Press didn’t know how many kids in their regions were diagnosed with FASD or suspected to have it.
For overworked teachers, kids with FASD are seen as disruptive, willfully lazy and slow. Parents say it can be tricky convincing schools to make adaptations for kids with FASD. Adaptations, a catch-word in the FASD world, could mean anything from allowing a student to use a calculator to modifying assignments, to avoiding group work.
“The hardest time for our kids is middle school and high school,” said Val Surbey, who has adopted and fostered several kids with FASD.
“Very few finish school, many drop out at the middle-school level or aren’t able to progress beyond that level,” she said. Her youngest in the Seven Oaks School Division ended up switching schools because his school wasn’t willing or able to work with him, she said.
People in education are often uneducated on what fetal alcohol spectrum disorder is, Surbey said. “It’s organic brain damage.”
The dad of a teenaged son with FASD once brought in an FASD expert to speak to teachers in his son’s school and the turnout was terrible.
And parents say getting funding for the most basic form of aid, a teaching assistant, can involve endless wrangling between the school division, education and child-welfare departments.
Steinbach mom Jennifer Friesen ruled out the public school system for her adopted daughter because she’d likely get lost in the shuffle in schools already bursting at the seams.
“It just seems to be really hard to crack into the education system,” said Friesen.
“How do you revamp a whole system? If I think the school system needs to be way more FASD-focused, how do you make that happen when each individual kid is so different?”
Educators say they’ve made huge strides in dealing with all kinds of learning disabilities, including FASD.
“It doesn’t matter to us what package the child arrives in,” said Judy Dandridge, the student services co-ordinator at Fort La Bosse school division in Virden. “The label doesn’t always define what we do.”
There are resources that teachers and parents outside the Winnipeg School Division can access, said Thordarson in Winnipeg.
Helping students with FASD develop the tools they need to learn and cope is an investment that will benefit them for a lifetime. “This is a lifelong disability,” said Thordarson. “They won’t grow out of it. We’ve all got to be advocates for these kids.”
Republished from the Winnipeg Free Press print edition February 26, 2011 H3

The best dad for someone with fasd

Yesterday was my dad’s birthday. He died when he was 55. That was over 30 years ago now. I just realized how much more living he had to do. My dad, was one to meet me where I was. Neither of us talked much. We would sit on the couch together and just be silent. I would trace his tattoos on his arm and play with his ring. He was special to me. He was my world.

Having FASD makes your world so confusing, but we find places and people that can be calming. We find solace in things that others do not understand. when you live in a world of such confusion, it is such a breath from fresh air when you have someone who just gets you. Just for who you are and does not expect you to be different.

Swimming was what got me through some of my tough times. I had this energy that would not quit and i was ADHD and everything else…lol. My dad would be waiting for me at the end of the blocks when i would get done with an event. His smile said everything to me. He didnt have to speak a word. I knew he was proud.

When he found out that my disabilities were permanent and significant, he made me a chalk board and an entire basement for my eyes exercises and balancing problems. He made me a balance beam so I could practice. With the chalk board, he had me take 2 pieces of chalk and make them meet in the middle to make my eyes work together.

He never, again, had to say a word. He did it with me. He loved me. He cared. He wanted me to be my best, but he never made me feel less than for having these disabiliies. He knew I did not understand the way other kids did. I was only 11 when he died. but he spoke my language.

He just loved me where I was for who I was. I always felt accomplished even though I was so much lower in abilities than others. He focused on my strengths and would just shoot me that smile and the whole world was okay.

I couldn’t read like others. In fact, I couldnt read a book until I was older. Much older. All the words blended together. Each line seemed like one long word. I did not see separations.

I could not write like other kids. I never saw the whole page and I would cut about an inch of the line I was supposed to cut. My brain was just different. He was my adopted dad. He made me feel ok even though the world made me feel bad.

He was the best man in the world. I could look at him and just know that I was important. I had worth.

He died when I was 11, like I said. My world was never the same since.

It’s okay.

I know when he died, that I was his angel.

In a world where all you do is struggle, we are constantly looking for places that we fit.

Him and me…we fit.

Part 2 and 3 a book on a girl with FASD…

Part 2

“HELLOOOOOOO,” I scream into the air.

I don’t know who I think is going to answer. If somebody did, I think I’d scream.

It’s been a long time since I’ve been around anyone. Sometimes, I run to the end of the tree line and watch life from a distance. I see cars whizzing by and people walking as if they are late to something important.

They dress nice.

Days turn into nights and nights turn into days as I sit and try to figure out how to reenter into a life beyond these trees.

I want to reenter, but I feel safe in here.

The people, out there, all seem to have purpose.
They move so fast.
I watch them sometimes as if I’m watching a movie.


I really don’t think I will ever fit into their world. I am that evergreen trying to fit in with a slew of birches.

I have always felt different.
Never blended.

Even the thought of transitioning is scary.

The closest I have ever come to reentering is my daily sprint to the dumpster that sits behind the plaza.

It’s not far.

I go in the middle of the night so no one can see me. They throw away lots of bread. Sometimes, I even get some pretty good sandwiches.
It’s amazing what people consider trash.

I never thought I’d ever be living out of a dumpster, but it is better than where I came from.
I’d rather be eating trash than be trash.

Maybe I will live here the rest of my life.
At least, in my protected haven of trees, love doesn’t come with a cost.

I have no idea why, but there is still a part of me that wants what’s out there. Love has to be somewhere on the other side of these trees.

Day after day, I walk along the treeline, looking for a safe place to reentter.

Day after day, I step out.
Day after day, I step back in.

It’s not going to be today.

No, it’s not going to be today.

Staring at a tree that seems like it’s dying, I lie down for the night.

I feel my favorite log against my back and curl into a ball to sleep. It makes me feel safe for some reason. I take my coat and pull it over my worn body. I listen to the random noises in the woods. They used to scare me, but now I recognize them. Just like knowing every creak in a floorboard of a house. I understand every sound in my woods. I know what sound goes with what animal. I know what chirp goes with what bird.

I think they are used to me being here.

They seem to accept me.



Part 3

I have spent many nights, under these stars, wondering if I have any worth. I try to make sense out of things that don’t make sense at all.

When I see how vast the universe is, I know there has to be a God.

I don’t know. Maybe there isn’t, but if there is one, I just don’t understand some of the things he does.

He can create an ocean and disturb nature with thunderstorms, but he can’t answer my prayers.

I look up and wish upon the stars.
I look in front of me and no wishes coming true.

They say God is love, but yet I can’t seem to find it.

He made the man on the moon AND a man who sells drugs to make you feel like you’re on the moon..

He can make the most colorful sunrise AND the darkest of people…dark enough to rape a child.
He can make make a life AND he can make people who take lives.

He can make a rainbow AND he can make…………………………………………………….me.

I came up with a word.

Crehation

Some people make love to make a kid.
My parents made hate.  

I was Crehated.

In other words, the sperm definitely worked way too hard to get to the egg.

I had two strikes against me before I was even born.

One, the egg and the sperm met because of a rape.
Two, I drank alcohol before I was even born.

Well, my mom drank.

I guess that means I drank, too.

At least that’s what they say.

I got this thing called Fetal Alcohol Syndrome.
I don’t really know what it is.
I just know that because my mom drank when I was inside her, I have disabilities.
My brain does not function like other kids.

I look like the average 14-year-old, but my brain isn’t normal.

I also had a lot of health issues when I was younger, but I’m pretty healthy, now.

I don’t have much to show for my life.

I only have one bag that holds everything I own.

I might not have much, but what I have is very important to me.

There is a book I take everywhere I’ve lived.

Are you my Mother?
A classic Dr. Seuss book.

The little bird walks the globe going from object to animal looking for its mother after it was displaced from its nest.

This story gives me hope.
The bird found its mom.
It found a place to belong.

You know, I have never wanted material things.
Those things don’t even matter to me.
 
Love.
Security.
Safety.
A listening ear.
A loving touch.
Unconditional love.

Now those things are important.

I’m loyal to my birth mom even though she told me she doesn’t want me and never has. I have to believe that somewhere deep inside she does.

That little bird didn’t give up.
That bird didn’t sit and wait for its mom to come. It went out searching for her.

I know I am going to have to go out there.   

I have to admit something though.

I’m scared.

There are parts of me that’s lost hope.
There are parts that don’t believe.

Even Noah was cradled in a strong boat when God released the floodgates on this earth.

I was left to fend for myself when the floodwaters of my mother’s womb was opened.

A couple years ago, I wrote a poem. The only hope I could see was on the other side of my bedroom window in an old foster home.  Life was pretty bad back then. I keep the poem tucked in my Mother book. Right where the little birdie finds its mama.  It’s all crumpled and hard to read now, but I will never forget the words.

I remember many a night
When I would pray in the midst of fright
To a God I did not know or understand;
Who I wished would reach down with a gentle hand,
Wipe away my tears of desperation,
Rescue me from my world of isolation,
From the four walls in which I dwelled.
Looking out the window from a world I knew well
Wondering exactly what it would be like
To be in one of those other bedrooms still lit by light.
I would stare at them through the hazy mist from my breath
Till their lights went out as though it were a death…
A death of a dream that gave me hope
That in the midst of chaos would help me cope.
Laying back down with a tear on my cheek
Praying Father, I lay me down to sleep
In hopes for a new Family in which I seek.
I know I don’t know who they are,
But I pray with much faith that they are not very far!

                                                            

Life hurt when I wrote those words, but I think it hurts more now.
 



Part 1 if you missed it…Shadow in the Dark…a girl with FASD…http://hopefasd.blogspot.com/2012/06/shadow-beginnings-of-my-book-about.html

The rest will come out in book form. Working on publisher so I hope its soon. If anyone knows of anyone that will publish a book about FASD, let me know. Thanks. 












Feeling lost

Uncertainty is probably one of the hardest things for people with FASD to deal with. We feel so deeply. We long for love. We strive to be our best. It might not be other’s best, but it is ours. If you are happy with us, we are happy. If you are disappointed in us, we are sad. It’s that simple. We rely on other people being honest to us. I know in my world, I don’t think like someone who is neurotypical. It is hard for me to understand how they think. I can’t speak for all those with FAS, but I am not one to be deceitful. What you see is what you get. I wear my heart on my sleeve. I give my all.

We truly do play on a different playing field than neurotypicals. Our brains are just wired differently. I have a brain of a 12 year old most of the time. When an adult tries to get me to think like they do, I just cannot do it. All that happens is I get confused. If they get upset with me cuz they feel that I did something wrong, I just get more confused. Meeting me where I am, as someone with FAS, expecting me to react and act as someone with FAS helps me so much. I’m just not able to play the game of life like others. I truly do not understand.

I love deeply!
I care deeply!
I feel deeply!
I hurt deeply!

I mean core hurt!

And all I want is to be loved for who I am. Be accepted for where I am at in life.

I will do nothing but love you…deeply!
Just love me back.

I have people try to get me to understand something that I did was not the way society should have done it. Why is your way the right way? Why is mine, wrong?

I’m not upset at you for thinking different.

I know for me, I am really trying to do the right thing. the right thing to you and the right thing to me are just different.

I want to please you with all of my heart.
It hurts me when I don’t please you.
I know for me, I would do anything to make you happy.

All we want…is to be loved right where we are.
We really cannot help that our brain thinks so much differently than yours.
We can’t help that we are unable to understand your ways.

I know many of us go through life feeling lost. I have talked to many of them.
I have some great friends who are FAS and they want nothing more than to have a love that meets them right where they are and understand that their brain simply does not operate like theirs.

The thing is:
We can love…probably deeper than most neurotypicals.
We can help…with our entire person, we want to.
We can be in relationships. Deep, long-lasting relationships.
We probably will give you more than we expect back.
If you make us upset, we will be over it very quickly. We want nothing more than for you to just love and accept us.

It can be frustrating. More on your part than on ours. We just get confused. You, i think, get frustrated with us because we just don’t see the world the way you do. The neurotypical world really wants us to see the world and operate the way they do.

I don’t mind operating the way I do.
I love seeing the world through, I guess you could say, rose-colored glasses.
I love operating at a younger mentality.
I might be naive, but I’m not dumb.
I know our ways our different.
I know that no matter how much you explain it to me, I will never understand your way.
I know no matter how much I explain it to you, you will never know mine.

BUT…

it is okay.

if we agree to just get to know each other and accept that our brains operate differently.

Accept our differences.

Love us anyway.
A meeting of the minds.

Me?
I’m not going to be deceiving.
I say it exactly what it is.
You see it differently.
I really am not trying to be hard or difficult.

Sometimes, I cry at night.
I cry because I feel so lost.
I am lost in a world that I do not understand.

Sometimes, it can be very scary.
It’s not just that everybody in the room gets it but me.
I don’t understand your world.
I don’t understand underlying messages.
I don’t understand if someone says one thing, but means another.

I will give you my all…in all things.
I hope you want to give me yours.

I can’t operate on fast.
I have to take things slow. That is how I process.

I so need people to sit with me and talk to me about what is going on, before it happens. Things that are thrown on me without warning, send me into shock. My system shuts down and then I’m expected to operate like everyone else in the room, but its just not possible.

We are easier going than you think. I know we need routine, but if you explain things that are going on, we will do our best to go with the flow. it’s just when we don’t know at all what’s going on that we get really agitated and can act out.

I know for me? I hate to act out. I don’t see it as acting out, but I know you do. You do and think like someone with a different brain. I know you don’t understand that I need to know all the details before the day happens because changes can be hard for me to adapt. If I know ahead of time, I’m good.

I know for me, I will always be trying to meet you where you are and be my best for you. It doesn’t always seem that way because the way we do and think are so different.

Meet me where I am.
I am trying to meet you where you are.

My heart is in the right place.
I know yours is.

Let’s try to do life together and just understand that our brains are wired differently.

Ask me questions.
Make sure I understand

Please don’t make me feel like I did something wrong just cuz it is the way I do things and the way I understand.

We, sometimes, feel like the world is angry at us for something we cannot help. We did our best, but you are still mad. We don’t understand.

I operate, understand, think, and feel differently than you.

Now, let’s go from here…