Friday, April 12, 2013

#FASD the lonely hearts club?

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.

Terry Quinn

Shopping is a Drug? A spending plans demise!

What can we do to give more Live Abilities
to avoid trouble and trauma
Guest Blog by Terri Quinn

Yes! It sure is!
The  brain LOVES new things. 
It can give a person a high to shop.  
Shopping can be like a drug. 

Granted it is safer then Crack, but in some instances it can put a person on the streets, just the same as other drugs. Kids with FASD often have this problem. They don’t understand money. They can’t do the math. They don’t honestly think about responsibilities such as bills etc.  They can spend and spend and love doing it.

Eyes see and fall in love. 
Impulse control is often not there. 
They buy. They are not keeping track of their spending. 

Wow, could this be dangerous?

If your kiddo or young adult  with FASD, cannot manage a budget, on their own, then they often can’t manage their spending on their own.

So last week Desi decided she wanted to have a debit card. She wanted to be like other “Adults”. We went to the bank and got the card, but I was unsure how this was going to work.  It didn’t really. She already over spent what she had to spend. 

I had asked her to keep receipts and add them up in her calculator. I really felt this would be hard for her and it would take organization skills that she doesn’t have. I went into the bank account online tonight.  It happened. I texted her  not to use the card again until next paycheck. She is upset. She wanted to buy food for dinner on her work break. She texted me back. “So what am I going to do about food?”

I texted back. “Pray”.  :)  I am not trying to punish her, but if I allow her to keep spending, her money for bills is gone! She can eat at home when she gets off work.
If I give her all her money that is above her bills, she will spend it all in one day and have no money to purchase food. No thought is taken about emergencies, or other needs, before the next paycheck. 
So now at least, I take the food money out and hold it for her until we hit the grocery store.
WOW!  Our kids with FASD need an exterior brain for this! 

They can’t remember what they spend their money on, as memory is damaged. They buy on impulse without thinking about the price, budget, or if they need to pay a bill, or buy groceries.
A credit card looks like free money to these kids.  I am not sure if we are going to be able to keep managing with this card, but I won’t give up trying to teach her how to handle it. She hates that she can’t be like other “adults”.
Jon gets disability and he has a part time job. I manage his disability and pay his bills with it. He manages his job money and he has to purchase groceries with it.  
He had some savings because he wanted to purchase a car. I don’t feel comfortable with Jon driving, but I have helped him try and save for a car.  This week alone he has taken 260.00 out of his savings. For what? Oh one night he wanted a new tattoo. Two days later he decided he needed cash because his employment credit card was empty.

Today he called me and asked for 60.00 to lend to a friend who promises to pay him back in 24 hours. Right…….  I gave it to him though, as when it is gone, no car. :)
I asked him if he really thought he would get paid back and he said. “YES mom, this is my DUDE”.

Right………..Bottom line, our kids that are FASD effected have great trouble manage money. They are lacking in memory, organization skills and have little impulse control.
This is brain injury.  I never say never, but if someone wasn’t helping them, both would be living on the streets.
OH and one more, SO important thing!  
Did you know that shopping is an antidepressant? 

Loads of people do RETAIL THERAPY.  It gives you a high, adrenaline rush, to get something new. Our kids are trying to feel good most of the time. Doing Retail therapy on a credit card can be very addicting. Our world is full of people who have huge credit debt from this antidepressant. 

Adrenaline is a pretty potent drug of it’s own. We all know adrenaline junkies. It makes you feel good. Anything that will produce an adrenaline rush can be potentially addicting for our kids.
Even acting out can produce an adrenaline rush. Oh my, I touched on a new blog subject. :)
Just sayin’.  Our kids need their exterior brain to keep them from starvation and the streets. Keep in mind that they are about half their age emotionally. So my two are ten year old’s. 

Could a ten year old manage a budget? 

Not! a ten year old wants every thing that they see in the store and on TV. If we gave our ten year old’s a credit card???????  OMG!  Imagine the damage? lol. They don’t understand about the price of things. They just see the item, want it, and buy it.  This is how our kids often think.  

Lord help our kids, to always allow their external brains, to help them.
Help them to find other ways to FEEL GOOD that are healthy!
Also keep them from the temptation to steal, which also can become like an adrenaline drug to their brains.  
Thank you Lord!

Terry Quinn

Wednesday, April 10, 2013

5 Star Approach to Healing #FASD by Victoria Deasy




Guest Post - Victoria Deasy

Whether a child has a diagnosis of Fetal Alcohol Spectrum Disorders (FAS, ARND, Partial-FAS, or anything in between) or a suspected exposure, the few professionals who know something about FASDs, along with the literature, talk about the 'permenant brain damage" that ensues. Damage to the brain is certainly accurate but 'permenant' may no longer be true. We have learned a lot in the last 5-10 years about how plastic the brain is, how different parts can heal or take over for other parts, and how new neurons can grow over time. 

Because of these new neuro findings, we need to look at FASD a bit differently.

It should be noted that the alcohol that damages the brain damages different parts of the brain in different people. Some of this can be because of the amount of alcohol ingested, the time just before and during pregnancy in which the mother was using alcohol, the number of occasions in which the woman drank, the nutrtional state of the mother before and during the pregnancy, whether other drugs were also ingested, if the mother smoked, lived an unhealthy life-style, received pre-natal care or not, what kind of emotional life the mother was experiencing (whether she was abused, under stress, etc.) and many other things that could affect the fetus at anytime, with or without the alcohol exposure. Add these things to the alcohol exposure, and the direction of the damage is on its course. 

There are also the things that happen to a child after birth. 

There are traumas: 
  • 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.

I often have people ask me what we have done to try to heal my son's FASD. I can tell what we have done but I cannot tell others that all of this will work for them. I feel very strongly that what we have done (some learned from the autism community) has been very effective. I also have to say that it took years and years of trial and error to get all of this put into place. I can't help but wonder if we had done all the interventions earlier, if things would be even better. But, one cannot dwell on such conjectures. We did this on our own, unable to find doctors who knew anything that would help us. Now a days, there is more help out there and I would suggest that finding doctors who can help, would be the best route. 

Some of us will need to teach some of those doctors and some of us will need to forge our own paths.


There are 5 intervention strategies that I think are vital: 
  1. Nutritional Therapies (diet, supplements, chelation, etc.) 
  2. Neuro-Movement Therapies (NeuroReorganization, Musgatova, Rhythmic Movement Training, HANDLE and the like)
  3. Therapeutic Parenting (Heather Forbes, Bryan Post, Howard Glasser, and others), including psychologists/ psychiatrists, when needed
  4. 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)
  5. 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. 

Nutritional Therapies: for us, this started with eliminating all food dyes (Red#40 made my son almost bi-polar!) and to keep them out of shampoos, lotions, toothpaste, etc., because these are absorbed through the skin; eliminate all chemical sugars, all corn syrups (not just high fructose corn syrup), and to go as organic as possible, eat grass-fed beef, eat chicken and eggs that are hormone and anitbiotic free and which are free-range. A lot of children may need to be taken off casein (most dairy products) and/or gluten (most grains). For those who are nervous about their child not getting enough calcium from milk, just remember that calcium can be found in many other sources and there are many substitutions for cow's milk. 
  • 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,, 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 
his very disorganized brain and nervous system. 

Each part of my star helped to fortify the other points. I chose the right schools (I only knew this for sure after the fact, of course) and found other people, at school and at a church I joined just for what my son needed, to nourish my son, to help him along the way, to understand him in all his 'differences,' to give him the examples that his 'chameleon self' needed. 

Is my son "cured" of his FASD? 

No. There is no cure, as of yet. But, healing can take place. It's like children who have polio: do we leave them in an iron lung or do we do something so they can be in a wheelchair or using a walker or crutches or even, to get through life with just a limp. We are working towards the limp! 

Is any of this easy? 

Heck no! Trying to raise a child with FASDs is probably the most difficult thing any of his will have to do. We have children no on seems to understand, we get no help, we seem to have to fight for every little thing our child needs, we are blamed for their behavior, we are blamed for not parenting them well, we are blamed for letting them get away with poor behavior....

So, let's be the change we want to see. 

We will do whatever we need to do to heal our children. We will fight for them, guide them (even as they try to get us off their backs), support them, and keep them close and safe for as long as they need us to do this. 

And then, let us give them a chance to spread their wings and try life on their own... but knowing that we tried everything we knew how to get them to that place.

Tuesday, April 9, 2013

Live Abilities with #FASD —Changing the meaning of success

From one of my readers -

Then tell me, how do we get funding for our kids who will need it. It’s all nice and sweet to wish for this, but you of all people should know better. 

Our kids need life long support. That is a disability. What we should be concentrating on is having the diagnosis be a death sentence. Change the meaning of what success looks like.


My Response:

Yep, that is exactly what we are doing... changing the meaning of success... finding abilities to build companies that these adults can work in...
            and you are right there IS no money
- this idea began because I went after an 18 month grant to build job opportunities for persons with FASD and I pulled six (semi functional adults in with me as information support) --- we did not get the grant, but I could not let them or the project down as we had been working on this in the building of the concept and they trusted me...

            and I listened to them.

They begged me to NOT stop and abandon them as everyone else had - they have all experiences in supported living - losing jobs - chemical issues and they are now sober and faith based adults 26-36 years old. So I said ok I will keep going and I developed and designed the website with them as my art directors and guides.... the site took me four months of my free labor for all the programming so it could work with their smart phones and Ipads if they have them.

So what is success—
it is feeling like your life has a
purpose and you matter.

One tried for college entrance - her scores needed to be 35-35-35 - she studied she did her best and she got 34-34-46 - her dream still exists but how can it be achieved - she is probably capable to work 3 hours a day, maybe 4 as long as the environment is manageable... and that is not college — so we moved on to another do-ABLE opportunity that everyone can participate in.... from the next idea we hope to build something for others to participate. We have to start somewhere...

Another two got jobs over the holidays—that lasted through the holidays and the fall out from having those jobs is incredible and something most people never ever think about until you are behind the scenes

Another moved from assisted living to independent living with his fiancé and is working.... yes a glorious job of dancing as the Liberty Lady and the Little Caesar Sign persons --- he does both jobs extremely well -- and handles the community hecklers quite well too... Purposeful? yes he is given extra money to get a few things like save for a small freezer so he can buy food cheaper.

Another has spent almost a year untangling from the justice system for an offense he did not do, walking the walk with cognitive translators to make a difference—what he also has accomplished without a job this year is— was Santa, spoke to the governor about his 100% preventable disability, explained Live Abilities to a Senator and what the difference in thinking is when you have hope, is mentoring a young man struggling with chemical use, gave his testimony to the mission for homeless... yes his life is now purposeful and not punitive!

And all those are successes....
Is there money - no - no money.
I am working two jobs at $10.00 an hour to help make a difference - and using every minute I have that I am not working for others to help make a difference for the adults with FASD - is it easy - no this is the hardest most difficult job I have ever tried to accomplish.

The diagnosis is not a death sentence—in state commitment under the care of professionals my daughter almost died - on her own in the streets she needed to be defibrillated two times.... yes it can be a death sentence - without the right supports—but you and I are going to die too and we will die sooner than later if we don't take care of ourselves... if we don't figure this out... Warehousing our kids in prisons or hospitals or on the streets is not a solution...

First we have to figure out what success is for them.... and that can't come from our minds and hearts it must come from their hearts and brains. All three adult couples I am working with are living with supports -- and with the right natural supports they are functioning as purposeful adults.

It is not easy. It is not pretty. But they mostly like their lives...

Please consider joining us on this journey. I am interested in your viewpoints.


Friday, April 5, 2013

Money and FASD - Create Live Abiltities - Spending Plan

Spending Plan

The word BUDGET
does not fit in with FASD jargon. 

Guest Blogger - Ann Yurcek -
originally published at
Keeping Up with Tiny Titan

One of the hallmarks of FASD is their inability to understand money.
  1. It takes planning skills.
  2. It takes abilities to think on many different planes
  3. And of course impulse control is another struggle for those who are affected by prenatal alcohol exposure. 
Too many steps, too much abstract thinking and of course too much planning ahead for someone struggling with executive function deficits.

With my adopted sib set, I have had many lessons in what to do, not do, and what to expect with money and their FASD.

First, a REP PAYEE or SPENDING MANAGER needs to be in place or they will face many problems that can have huge ramifications. Bill collectors, homelessness, hunger and too many phone calls home to Mom and Dad.  My phone rings way too often from bill collectors who were given our numbers trying to find one of my FASD adult children who have no concept of money, no job, and no ability to pay back the bill. 

I have learned any money in their hands is NOW MONEY and it will be GONE in an instant. So lets get started in helping our young person...

Free Downloaded Printed Money to work with

What I have learned....

Money is abstract... 
they need to see the money. If the money is automatically drafted into a bank account they cannot see it. They do not understand something that is not tangible. Debit cards, checks, credit cards are a disaster. 

They need to have CONCRETE RULES around money.

The word BUDGET does not fit in FASD jargon. A friend of mine suggested  SPENDING PLAN.

What do they do with their money? SPEND it.

  • FOOD and Personal care items SECOND.

What do they need to save for next? 
  • Clothing savings, 
  • Phone replacement
  • Whatever they really want. 
THEN the allowance or fun money!

Slowly dole out the remainder in short increments on the same day of every week to avoid the "I need more money" phone calls.

But how do we help them understand money and how much and where it all goes when they do not understand math, or time, or planning.

I watched the Cosby Show with my younger boys when they were teens and a light bulb went off when Cliff Huxtable was trying to explain how little money he was going to have if Theo did not get a good job because he did not want to attend school.  Cliff used Monopoly Money to give Theo the money he would earn on a mediocre job and where it would all go. Cliff pulled the money for Rent, Theo said he would live in a less attractive apartment and pulled some back, then he pulled the money for the car and Theo said he would ride the motor bike, and asked about clothes, and of course Theo gave up some money as he wanted to dress well. Then Theo pleased with all that was left and Cliff reminded him he still needed to eat. There went another two hundred dollars and Theo took back another hundred and said he would eat bologna and cereal. Then Cliff asked him if he was going to have a girlfriend and after a YES, a smiling Dad took the rest of his money. (The Episode of Cosby we watched with my boys ).

My boys were shocked by the episode on TV and it sparked a learning moment that I will never be more thankful for. They understood the concept of spending plans.

I have used it to help explain where all their SSI checks would go, I have used play money to represent the real money sitting in the bank. It has made an impact.

My favorite Money Set to help with my kids  
I used this set to teach my kids to count change, make change, and figure out anything to do with money. 

Otherwise go hit up the dollar store for play money to use to show where the money goes.

** Note always use play money as real money may be too tempting for many of the kids with FASD, I learned early on that my counting change jar would turn up missing and no one had done it, even when confronted with the change in his pockets.

Granted any money left, would be spent in a moment of impulsivity.

The Innocents... FASD.... Victims

The Right to a Healthy Brain

award winning author Tiny Titan
Keeping Up with the Tiny Titan -
original post April 3, 2013

I was talking with a friend today about a conversation with Miss Dee who was talking about her FASD.

"Why did she and Little Guy not have the right to be born with healthy brains?"   

How can I answer that question?

We  were venting about the unfairness of FASD.  Those who have FASD are innocent victims. Innocent Victims of being exposed to alcohol prenatally and further victimized by the lack of appropriate services. There is no place for people on the spectrum to fit. Mental Health services, Developmental Disabilities, Autism, are the silos where they can garner support for their prenatally acquired brain injuries. But for many who are on the spectrum they "just" don't fit. FASD is not even in the DSM as a disorder. So many service silos require a fail first mentality, you have to fall so far to get any help. We need preventative early intervention services from birth on and life long support for those affected.

For the fortunate few, they can fit someplace. They fit on the DD if their IQ's are low enough, or on the Autism Spectrum if they have enough social inadequacies or sensory issues, or on the Mental Health Spectrum when they have floundered and failed enough to fall into secondary mental health issues. People who have a Traumatic Brain Injury have a silo to garner services, but not FASD.

But also, why can't we get help for those with FASD's. It is a shame based disorder. Most will not get diagnosed to the root cause. It is OK to have ADHD, ADD, Autism Spectrum Disorders, LD ( learning disability), or other mental health problems in our society. But to get diagnosed, there has to be confirmation of drinking alcohol during the pregnancy which then becomes someones fault. In our legalistic society, we blame the parents, we blame something for outcomes.  What parent is brave enough to admit they caused their child's brain injury? There are a few courageous Parents who love their child enough to do it. But most who are diagnosed are not the families of origin.

Kids from the foster care system or adopted from one of the countries known for their alcohol comsumption are sometimes fortunate enough to get diagnosed at a good diagnostic center. But many will still be missed. For many of the others, it is the other "little" d's that they will be their umbrella.  ADHD, ADD,  ODD (Oppositional Defiance Disorder), AD, SID, ASD, BD, DD, OCD, LD. So many little d's that they will find a label, but never the underlying cause.

But finding the root cause does not help our kids/adults,if we can be fortunate enough to find a diagnosis. They still will have to be served under one of the umbrella's that often times are a poor fit.  Many will not.

But there is no place for them to find supportive services that really address their unique needs.  They are often too bright to feel comfortable but will not qualify for services under the Developmental Disabilities Category. They are not Mentally Ill enough to qualify for MH services until they really fall apart. Sometimes when their predisposition for Substance Abuse Issues gets them addicted enough, they may qualify for their services, but they can't manage to learn and keep the sobriety they teach.

Many a parent calls who have that young person who barely passed high school, who cannot hold a job, they may or may not have gotten special education services and they were adopted or live with a kinship caregiver and know that their young person has been prenatally exposed and they are floundering on where to go next. They do not have enough documentation or they have been held together by the families support and they know that their loved one cannot make it on their own. They want to know what to do, where to go for help? 

I have heard some professionals who actually think these kids can outgrow their Fetal Alcohol Spectrum Disorders???   There were those who told me that it was TOO LATE to help my children and just write them off.

We need HOPE, we need HELP, and we need to recognize FASD.

They were innocent victims of prenatal alcohol exposure and they will pay a lifelong price for their mother's drinking. 

Thursday, April 4, 2013

Steps into Live Abilities - We take ''DIS out

Purposeful Living - Striving for the Best

Sam giving MN Govenor Dayton one
of our Live Abilities introduction cards
My father often said, "If you have a problem, shake it out, shake it up, turn it upside down. Problems are opportunities to solve." And solve my father did - rising to managing the construction of high rise construction and building a round house with scraps of this and that - because he could—the we in family could. 

My father lived a purposeful life filled with Live Abilities without a 'dis among us. Why? Because he believed it wasn't where you came from that mattered, what matters is now you do your today. 

- Jodee Kulp, Trail Guide for Live Abilities

Purposeful living is how you live in your NOW!

So how does one achieve purposeful living? 

The first step in our Live Abilities program is discovering your strengths and being truthful about all the challenges you face. 

We get our challenges off our hearts and onto a piece of paper where we can pick them up at anytime we feel the need or leave them there. We put them in a safe place for rediscovery as we grow.

Then we brainstorm our strengths:
  • What are we good at? 
  • Where in life have we found the most enjoyment? 
  • What was happening? When? 
  • What do we really have fun doing? How come?
Then we find two or three sober and faith based people to become our Braided Cords -  Each of these individuals will provide additional strength, support and flexibility to allow change to occur. 

Join Us on our Journey - Liz and Sam

We just relaunched our revised website for adults with hidden differences at 

Wednesday, April 3, 2013

Create Live Abilities - Can’t not won’t, but not impossible! - Money Management

Learning that my kids with FASD actually cannot do some things and are not willfully, or intentionally, NOT doing those things,
was the biggest relief to me!

Money Management Strategy

GUEST POST by Terry Quinn with Ann Yurcek
Originally posted in Parenting FASD Kids on April 3, 2013

While raising up my nine, I had expectations of all of my children, but it seemed that Jon was always falling short. I was frustrated often, along with his teachers. I didn’t realize he had FASD until he was in high school, so we did not understand all that we were dealing with. It was quite painful on a constant basis. There were often upset teachers, principals, friends and classmates, with Jon.
He never stopped talking. I mean NEVER!  He never had alot to say but he found a way to talk all the time anyway. Most of it was silly talk. I found it odd that a kid who would never stop talking, had nothing to say to me when we were alone in the car. This same thing happened if he was at a doctor’s office, psychological doctor etc. So, doctor’s didn’t recognize a problem with ADHD. He was always this quiet little thing with them.
I think I figured that out now that we have learned so much about FASD. When Jon was with his friends, he was very stimulated all the time. Therefore his response was to talk and talk and talk.
When he was with me alone, things were calm. Since his talking was usually nonsense and goofy stuff, I wasn’t going to chat like that with him. So I would always ask him things to draw him into a conversation and he would give me simple answers. Often those simple answers were , I don’t know, I don’t remember, or he might tell me a lie because that is often the way kids with FASD cover for their lack. They make stuff up. If they don’t know, or can’t remember, they find out that they can make stuff up. It seems to satisfy mom and dad until one finds out that it is a lie, and then they are in trouble, but they don’t remember what they lied about, so they lie again.
Parents are often frustrated when their child lies because they want their kid to become an upstanding and honest citizen and they feel like they are a failure if their kid is lying to them.
What I didn’t understand then and I do now, is that my child could not tell the truth all the time because he either didn’t know it, didn’t remember it, or didn’t want to be in trouble because he has had so much pain in his life already that he has to protect himself.
I sure wish someone would have explained that to me when I was raising up my kids with FASD. It would have saved me a whole lot of frustration and pain.
However, here is where I often see today’s parent of kids with FASD missing the mark. They are now getting the message that their kids “Can’t not Won’t” , so they are accepting that their child is brain injured and that is the end.
NO NO NO!!! We cannot do that. If we do, we are going to stunt our children’s growth and possibilities.  Maybe at that point in their life, they truly “can’t not won’t”, in some area, BUT we must still continue to teach and discipline. I do not advocate that we live in frustration and discouragement over what our child cannot do. I never knew that my kids had FASD, so I treated them all the same. YES there were times when we are far more frustrated and upset then we should have, or could have been. BUT I continued to teach and give my kids consequences for their digressions and today I have some pretty awesome young adults who CAN in alot of areas that they use to not be able to. They did learn.  My daughter Desi RARELY lies to me now. She no longer steals from me. She learned. I didn’t just accept that she could not learn these things. I kept working at it. I would say that she and Jon required twice as much work as any of my other kids, but it was so worth it. All things are possible if we believe and work at it.

My kids are young adults now and there are still areas that they “Can’t, not Won’t”, struggle in. I am still educating and learning new ways to help them. I believe that there is a whole lot out there that I am just now getting myself about FASD. 

It is a complex issue.
I am now studying the book that Jodee Kulp wrote “Our FAScinating Journey” available at: It is very educational about the brain. It was a bit deep for me when I first read it, but now it is clicking with me. I am FAScinated by it. lol.  Our brains are so complex. I will be adding some more of my understanding about the brain as I continue my series on parenting kids with FASD and individual issues relating to it.

Every day Desi is an education for me. As she has grown older and her peers passed her in high school with development, I began to see where she was struggling the most. It kind of just showed up when she peaked in certain areas and didn’t seem to be able to get passed them.

The biggest areas that she struggles with today are memory and organization. These two struggles effect every area of her life though.

So in these areas, Desi “Can’t not Won’t”. She cannot do math in her head. She cannot get all that I say to her at one time. Her processing ability is slow and her memory doesn’t save the first words with the next words.

Have you ever listened to an auctioneer? Do you get every word that they say? You mind has to go really fast to pick it all up. One thing that helps is that they are speaking the same thing over and over, so you can get it. But let’s pretend that an auctioneer was trying to explain to you how to fix a washing machine.  They gave you ten tasks in a row that were step by step fixes for the washing machine and they gave it to you really fast in their auctioneer language.

Did you get all those steps? 
Do you remember them all? 
Could you now go and fix the washer? 

I would certainly be lost on the first step, because ONE, I don’t know how to fix a washer, TWO, they spoke it so fast that my mind couldn’t process it all that fast and Three, I have no interest in fixing a washing machine. I am going to hire someone to do it, so forget that.

So in that instant, I “can’t, not Won’t”, but I am also Won’t because...

I am going to hire someone.
I refuse to learn all that stuff.

Well now let’s take one of our kids and their slower processing brain and tell them to "Do the dishes" which actually means... (the WHOLE "do the dishes" package)
    ....Now you wash the dishes dry the dishes
   clean out the dirty sink
                ...then you wash off the counters 
                   ...and clean out the dish cloth.

My Desi has heard wash the dishes, but the rest was too fast for her brain to process AND she doesn’t want to do the dishes, so it doesn’t interest her to remember the rest.
Of course her memory struggles anyway, but some of us parents are going to see that our kids will get things that are important to them and wonder how they got that and not the dishes.

Does this make sense?  Ok, this is going to sound like I am taking my adult child back to kindergarten, but our kids are visual learners, not so much audio. Their minds can see pictures better then they can process words.So if I make a chart with a small picture of each step of the dishes and put it in front of Desi, she can easily understand how to do the dishes.

If that same auctioneer made me a chart with pictures of how to fix the washing machine, well I might actually get the idea that I can fix that washer, if it is physically possible for me to do those things.

Is this making sense?  It is to me and I SO WISH that I knew this when my kids were little. 
Ann Yurcek author of Tiny Titan, Journey of Hope, also available at: ,is a close friend of mine. She has raised five adopted children with FASD and now currently has a sixth little one.  We brain storm together often about how to help our kids. She has some pretty awesome ideas and I am learning a lot from her. And, what ever I learn, I am sharing here because we all need this. 

So we have been discussing about our kids with FASD and how we just talk too much to them.  We need to go back to kindergarten and find out what kindergarten teachers use. They work a lot more with visuals. You will see a kindergarten class room is full of wall pictures. The alphabet is on the wall. Numbers are on the wall. They use flash cards.

This is because our younger kids are visual learners, not so good with audio. WHY? Visual is concrete. Audio is not always concrete and often abstract. Our kids very often are stuck in concrete thinking. Their brain’s are not able to visualize abstract understanding.
Often people with Total Brain Injuries (TBI) have  impaired abstract thinking  that is frequently associated with reduced foresight, judgment, insight, reasoning, creativity, problem solving, and mental flexibility.

Ok, for today we are concentrating on abstract thinking.  Math requires abstract thinking, which is why our kids often have great difficulty with math.

Desi cannot add things in her head. She gets very frustrated with very simple numbers if she has to add them in her head.

This week we had a huge issue with her paycheck. I have been trying to help her understand how bills operate since she got her new job in September and is not 18.
So in my educational mind, I am telling her if she has a pay check of 309.00 and her bills add up to 200.00, her food is 50.00 for two weeks, she has 59.00 left. But again in my “educational mind, that thinks this is just so darn freaking easy to figure out, I just simply ask her to do the math. She can get the 200 plus 50, then she struggles to figure out what is left. Not easy for her at all. I plug in “Terry she cannot do this” into my brain and recognize that she “Can’t not Won’t” add numbers.

Then she says, wait Mom, that can’t be right. There has to be more. OH YEAH, I get 50.00 allowance too. WHAT?  Where did she get that?

Well before I started trying to teach her how to budget her money, I simply gave her 50.00 from her two week paycheck and I paid her bills.

Some how she put that together with her money and thought she had both!  I wanted to laugh and freak out at the same time. My poor girl cannot figure this out.  What am I going to do?

That is when Ann came up with a SPENDING PLAN because that is what Desi needed to dospend what money she has wisely... There is no way BUDGETING was going to be the answer - we had to call it what it is in Desi's mind - she is spending HER money!
  1. Get her some play money. Since her check is direct deposit and we don’t have the money in hand, we needed a visual.
  2. So, I got the play money.... with FREE DOWNLOADs I printed
And I counted out 309.00 and she paid her bills out of it. 

 It worked! She got it! She could see the money. She could not get it from me telling her she had 59.00 and actually thought that she had 50 more because she can’t reason all that in her own mind.

It was confusing to her, but when she had the money
right in front of her to see, she got it.

So Desi honestly “can’t, not won’t”  do math in her head, but when given a visual, she can do the impossible!!!!!!!  She can also use a calculator pretty well.

So yes, knowing and understanding that our kids have areas from brain injury in utero, where they honestly “can’t not won’t”, helps us parents so much with our frustration and pain over their lack and behaviors that are puzzling.  However just because they appear to “can’t not won’t” in a certain area, does not mean that it is impossible to teach them. We need to keep trying and try different if there is a different way. It may seem a lot harder with them. It may take a lot more effort. It may be totally again’st what we believe or think, but we can change too. We can learn what works with our child and put that into action. It is when we are willing to put those things into action that our “can’t not won’t” child, CAN!!!

Thank you Lord that with YOU,

Terry Quinn