Yurceks in the Media: Little Mac Teaches Family

Here is a copy of the recent article first print in the Grant County Herald, Lancaster, Wisconsin.

Little Mac Teaches Family, The Yurceks Find Joy in Adopting Special Needs Child
April 19, 2013

http://www.swnews4u.com/section/125/article/12480/

FREEBIE: A Daily Guide for Living: Parenting Children Affected by Fetal Alcohol Syndrome

This is a must print or bookmark guide which is FREE
by the British Columbia Ministry for Children and Families

A Daily Guide for Living: Parenting Children Affected by Fetal Alcohol Syndrome

This 72 page FREE resource guide is a great resource for helping us and others understand and help our children. It gives us concrete tools to help our children.

A Lesson from Detamara

Dee has really grown understanding her Fetal Alcohol Spectrum Disorders. She is now 20 and at 17 the Neuropsychological Assessment finally revealed her profound memory disorder. She forgets, she doesn't plan ahead, she couldn't put together what to do.

When Dee said for the longest time "I forgot", in time I realized that she did forget. It took until she was l7 for others to understand that.  When she told me that she was "bored", meant.... she didn't know what to do next!  When she fought me with doing a chore, was not that she didn't want to do it, she was CONFUSED or OVERWHELMED on the project.  Often the answer was "it will take forever".  Which translated into it was too much, too long, and too confusing.  They only way to do it was to support her and encourage her.

We started talking short and often about translating her responses into her understanding that I understood.
In time we began to see progress in those episodes. I have a more compliant, more easily transitioned daughter.

The other day I noticed that she without prompting had taken on the project of cleaning up the long winter of dog droppings inside of the dog pen.  WHAT?  Dee noticed something that needed to be done, and then DID IT!  I praised her for well done project.

I was talking to a friend and told her what Dee had accomplished.  Dee piped up, "Mom you can't expect it from me all the time now. Some days I can and some days I can't."  That day everything connected right and when will it happen again? I do not know. But what I have learned is that I celebrate and empower her when she can and support the rest of the time.

Since that day, I have seen her step out to try more, notice more, and her confidence is building.  It is multi-prong connections that have to be made.

• First, she needs to see what needs to be done or know what needs to be done.
• Second, she has to know the steps to get it done
• Third, she has to be able to have the confidence and stamina to do those steps and brain connections to make it happen. 
• Fourth, through doing these steps she is embedding it into her memory, maybe. 
• Fifth, will she be able to retrieve it when she needs it, or will it imprint?

For her, the simpliest tasks can be so complicated. It took age, maturity and much practicing for us to get to this point. Before now she was not ready. So we just keep practicing, prompting, supporting and encouraging.

She made it through all these steps I am proud..... I am so proud, flabbergasted and shocked.

But also what I learned is that she did it today, but she may not tomorrow.  So today we celebrate,
tomorrow is another day.

Adoption Day 4/16/13 : An Even Dozen. Meet McKellan Edward Yurcek

Meet McKellan Edward Yurcek 

Born: March 2, 2010 

Placed: August 25, 2011

 Adopted: April 16, 2013
 

McKellan has Fetal Alcohol Syndrome, Autism Spectrum Disorder, an Unknown Genetic Defect and just like his sister Becca, he is defying the odds.

 

Adoption Hearing with Doc, Judge Day and Mom at the Grant County Wisconsin Courthouse

Big sisters Detamara, Becca and Auntie Jane waiting outside the courtroom for our turn.

                                         Daddy's Boy

          
                                          Mom and Mackie

We have our even dozen, and by the way they really do not come Cheaper by the Dozen.

But instead come with Blessings by the Dozen.

THEY'RE NOT DONE YET: The Jury is Still Out on Light Drinking Does Not Cause Damage

The internet was buzzing yesterday with the new study out of the UK on light drinking not causing any learning problems for children.  In their study they studied a group of 7 year olds and found there to not be any statistically differences with non-affected peers.  So many news articles citing that light drinking is safe, but every article has a small disclaimer from the original study.

I write my questions and rebuttal to make people and the media think. The headlines are too misleading.

Here is a news article about the subject:

Here is another one which they state the the jury is still out

Where I have questions are and believe that the study and its news coverage is giving a false security?

First and foremost, lighter neurological damage from the effects of prenatal alcohol exposure will probably not become apparent until after at 9 or 10.  Early children are very concrete thinkers, and often children who are on the FASD spectrum will have trouble with abstract thinking.

Yesterday I sat in on a Webinar sponsored by the ARC and done by Kathy Mitchell from The National Organization on Fetal Alcohol Syndrome where she talked about the optimum time to test for FASD's is ages 6 to 12.  So what that means is that until that group of children age we will not know if they have any statistical neurological differences.  They have to wait to see if they begin to fall from being unable to learn abstract learning or have any executive function deficits, or when they don't meet the next several typically developing markers in development.  Until they meet that milestone which happens at ages 9 to 10 and prove that their executive functions are developing appropriately,  we will not be certain they do not have some learning differences.

What this study does tell us, is that light drinking does not cause the most severe learning challenges seen in FASD. But it does not say even from their own quote that they give the GO AHEAD and these children are not affected.

I believe that from what I have read they

QUOTE:   " Kelly stressed, however, that long-term data is still needed. “While we have followed these children for the first seven years of their lives, further research is needed to detect whether any adverse effects of low levels of alcohol consumption in pregnancy emerge later in childhood,” she said.

BINGO.... until later.   Kids with more severe exposures are identified earlier on because of the more severe findings of their FASD.  I have met many a family, child who did not get diagnosed until much later, even after high school when they could not meet expections.

Second, what is light drinking to one person may be more than they think. What are they saying are the perimeters for light drinking?  Drinking till you pass out is binging for some, but for someone light drinking may be more moderate drinking.  What is one drink? a 4 ounce, 8 ounce, 16 ounce, 32 ounce, which kind of liquor?

Third, there are studies going on right now where they study why some children are affected and some aren't. What are the dynamics for who is more at risk for having prenatal alcohol damage?

ARE YOU WILLING TO TAKE THE RISK WITH YOUR CHILD'S LONG TERM ABILITIES?

Little children do things naturally, and until as they develop and these certain areas are keeping up with the typical peers. This group of kids until they are not developing more abstract thinking, and they are not growing and maturing in the areas of processing skills, memory,  following through on instructions more independently, organization, impulse control, learning lags, and will unable to develop or have problems with higher order thinking.

We also have to wait until they hit the plateau and  until they fall from expectations we will know.  Emotional problems develop as they age, little children can throw tantrums, but as they age they should mature out of them. These group of children have not yet gotten to the age where their  emotional and learning differences still stand out.  Also the emotional toll of the stress which disregulates behavior and when they cannot keep up with the expectations that is when the secondary mental health/emotional issues such as depression and other childhood issues begin to appear.

I have seen so many kids not be diagnosed until not just the age 9/10 marker, but the next place where some plateau is at middle school and puberty, the next marker where some fall is at high school when they cannot meet the demands of even higher level thinking.

 For me, my adopted son all who assessed him thought he was spared.  The young star athlete, never a day of special education with typical A, B, C's for grades. A college entrance testing got him into a four year university and he can't manage money, he struggles with too much complexity and depression ensued. He flunked out of school. I was told his genetics prevented him from the prenatal exposures his siblings all have. He was going to be the survivor of the group and the professionals told me to watch him for survivors guilt. I knew he had struggles, he thrived on our direction, he could handle much more than his siblings, but our structure of our family and support gave everyone a false sense of his abilities.   I have a friend whose child got a four year scholarship to a prestigous University with his genius, but he struggled with the executive function and abilities to manage just normal life losing his scholarship.  These kids were diagnosed much later if at all.  All known to have prenatal alcohol exposures.

I cringe when I see reality TV where they talk to Mom's who knew they drank while pregnant and the baby turns out fine.  They see a perfect baby, but will not see the hidden learning difference that may not appear until much later in life.  Then we will also struggle with the fact that they may just have lost a couple of points of IQ, where would that child had landed if the Mother hadn't drank at all.

Until the study is concluded and I pray they follow those children all the way to adulthood and at that point we will be able to really tell if or not they were affected.

My daughter who struggles with the effects of Fetal Alcohol Spectrum Disorders she tells me why would anyone knowingly make her life harder?  For my little Guy will FULL FAS, he will pay a lifetime price.
For my son who everyone thought would skate away and be spared, he wasn't and it was not apparent until age l8, along with so many others I know.

WHY TAKE THE RISK?  Give you child the most advantageous start possible. No amount of Alcohol is Safe.

Wishes Come True-- A Build A Bear Autism Miracle

Becca was so excited when Build A Bear announced that on March 27, 2013 they were going to have special Limited Edition Autism Bears benefiting Autism Speaks. Becca has for the most part outgrown her need for bears and animals to make her pokes and procedures better. She has moved on to electronic rewards. But Build-A-Bear is the stylish boutique for Miss Morgan her 4.5 pound Morkie Service Dog to shop. The store in Madison knows her well over the 6 years of frequenting the store way too often after too many doctors appointments, too many procedures and too much anxiety. It is my distraction tool. With now having Little Guy, Becca is on a new tradition, trying to get him to like the Bears and animals that have comforted her over the years. When Dr. Sheirlie had a new baby, Becca knew right what to buy... a Build A Bear and outfitted the baby's bear in a lab coat, scrubs and included a prized doctor kit for the bear.

I had to put in my preorder the day they were released to ensure getting one... no two would only do. One for each her and Little Guy as she reminds me they both have Autism, and Autistic kids/people do not like sharing.  Nice try Becca, but you can share, but you and Little Guy can both have your own.

I had planned on picking up the bear on the 27th of March, but my bout of stomach flu kept us home from Madison that day. The Easter weekend we were occupied with Nathan, Stacey and Brody with Ian home, a trip for a bear was not on the agenda. I finally took my preorder paper to the Mall Build A Bear store and only to find out they held them through Easter weekend.  They were sold out. Holding my temper, I made a statement, "that I was going to have a very disregulated and crushed Becca to deal with when I get to the car". I am so glad that I had left her to babysit a sleeping Little Guy in the parking lot while I ran in to retrieve the special Autism friends. The normal store friends were not there and I was out of luck.  Surprizingly mature, she did not melt down, get sad, just told me "It is OK, you tried!"  Who replaced Miss Becca with this reasonable young lady? I remarked.

Two hours a special text message arrived on my Iphone. How did they look up my cell phone number?  I usually use my home phone number on my orders? They had asked my name when they went to ask a question about the bears and they must have looked up our Build-A-Bear rewards info is the only thing I can think of. But how did they get my cell phone number?

The young man talked to his supervisor and they then  realized who the bears were for and that they called their Wisconsin Dells store and found two for Becca and her brother.

They were getting them ordered in and would ship them to me for FREE if I wanted them or I could pick them up at the store.

WANT THEM, I need them. 

Calling the store, I thanked them for going out of their way to make a very special young lady with Autism really happy and that she and her brother both have Autism Diagnoses and they according to her needed their own bears.

Customer service, going out of the way to care about Becca.  Build A Bear created a miracle and gave me faith in caring humans who were bear angels to fulfill a wish for a very grateful Miss Becca.

I am not so sure, Little Guy shares in Becca's love and obsession of stuffed animals, or if he just doesn't like to look at the camera. But anyway, we have  two Autism Build A Bears in honor of my Becca and Little Guy who came by way of a miracle....  from some very special angels at the Madison, Wisconsin Build a Bear store.

Since finding the special bears, they have put up a few on the Build-A-Bear website and I ordered the t-shirts and two more bears. One as Becca says is for Matthew, Dr. Sheirlie's son with autism and one for the Noonan Syndrome conference as some of the kids with NS fall onto the spectrum like Becca.

A Dog's Love and Another Day

A dog's love for her master is so powerful... overcoming so many obstacles to love her Dee and for Dee lessons in love that have healed her trauma.

Miss Dee had a hard day yesterday when she woke up she realized her old rescued yellow lab/golden retreiver had a stroke during the night. Holly could get up on her front feet but her back legs were definitely affected, but she would walk, but so wide and wobbly. After big tears and lots of questions (thank God that Doctor Dad was home when it was discovered) we decided to "just" see how she was doing before heading to the vets.

As the day wore on, she gait is steadily improving and today she is walking pretty well considering. She just can't do stairs. Dee carries her best friend.  She is drinking and eating and the tail is always wagging when Dee is in sight.  
 
We have talked to her that as long as Holly is comfortable can get around we will just help her, but when it is she is suffering, we will have to make decisions. But we almost lost her last year from infection and she recovered not wanting to leave her Dee.

So for now another day and love for Holly and her master!

The Innocents... FASD.... Victims

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. 

Money and FASD

One of the hallmarks of FASD is their inability to understand money. It takes planning skills, it takes abilities to think on many different planes and of course impulse control with 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 MANGER needs to be in place or they will face way too 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, no ability to pay back the bill. 

I have learned any money in their hands is there for a moment and it will be GONE in an instant.

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 words BUDGET do not fit in FASD jargon. A friend of mine suggested  SPENDING PLAN. What do they do with their money? SPEND it.

BILLS FIRST
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,  then 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.