Friday, December 23, 2016

Mom Hatches a Plan for a Special Little Boy


Mom Hatches a Plan
For a Silent Little Boy


When McKellan Yurcek, alias Mac by his friends at school began Kindergarten this year, his Lancaster, Wisconsin teacher, Mrs. Chambers gave him Snack Penguin to help him focus on eating.  Mac is a silent little boy who is diagnosed with Fetal Alcohol Syndrome, Autism, Involuntary Movement Disorder, immune compromise and vision challenges. He needs a high calorie intake to keep healthy. He struggles with eating and his brilliant teacher gave him a companion to help him eat and stay out of his friends snacks.  Mac's Mom wrote a Dear Classmates letter to try to help introduce and explain his needs the other Kindergarteners. 

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

Furry stabilized the movement in Mac’s arms and helped him walk without falling so often. Holding Furry was comforting.  Kindergartners like to talk and the more they tried to talk to Mac, the more anxious Mac got trying to talk. Everyday the computer screen is filled with many penguins meeting Mac for the day from his kindergarten buddies. Penguin is the language they share in common. One day, at the computer, Furry began answering.  Mac was communicating through Furry even though the professionals had struggled. Slowly his voice began to be heard and he was at times talking with his friends without a microphone.

All fall, Furry has been going on all kinds of adventures to build relationships with his classmates. Furry has been in candy stores and on reindeer rides with the Yurceks. He is a friend with Elf on the Shelf, he’s been a doctor and done rounds with Mac’s Dad, gone fishing, and he’s been a firefighter. Anything Mac does, penguin does. Every morning Furry  shows up online to say "Hi!"

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

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

With holidays coming and parents searching for Hatchibles, Mom was hatching a plan to increase integration into his classroom. Mac stood out as different. What could be done to create equality when Mac was so challenged?  In search of another Furry, Google images helped Mom find out who Furry is. He is made buy Aurora and he comes in three sizes and different colors.  But where could she get one for each kindergartner in his classroom? It took seven stores, Amazon, and Barnes & Nobel to solve the dilemma.



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

Soon, all the children’s penguins were talking and Furry said “Merry Christmas!”

For the next weeks Mac will be home to learn to avoid the winter bugs and to stabilize much needed weight.  But he will still be part of the Penguin Classroom through his computer screen and he and his classmates will be catching up on the latest Penguin Adventures in Kindergarten!

And to the 14 Kindergarteners who got their new Penguins, Thank you for being such a great friend to Mac and we hope you enjoy your new furry friend!  To the parents you have amazing children and ask them about their penguins!

Thursday, December 1, 2016

Ten Things You Can For A Special Needs Family at Christmas


The holidays can be tough for special needs families. You can make their holiday a little brighter with  remembering their family.

Anny

Thursday, September 8, 2016

5 Things This Special Needs Mom Wants the Team to Know


It's back to school and fun has begun.  Many special needs Mom's come to dread the beginning of the year and we are back to advocating and trying to proactively teach and educate the school about our amazing children.

This morning's graphic and post inspired by an graphic on Facebook that peaked my interest.
The Huffington Post shared
Back to School: The Top Five Things Teachers Wish They Could Tell The Parents. 

Talking with another Mama Bear... we came up with our rebuttal.
If we listen to each others voices, we can have a great year!

Anny

Tuesday, August 23, 2016

Day 73: Kids with FASD Can Learn: 10 Things These Kids Need From Us



Finally back from the craziness of my summer with launching the next Series.

Kids with FASD Can Learn:  10 Things These Kids Need from Us.

Come back each day  beginning tomorrow I will take 1 topic for the next 10 days.

Anny

Day 73: Kids with FASD Can Learn: 10 Things These Kids Need From Us



Finally back from the craziness of my summer with launching the next Series.
Kids with FASD Can Learn:  10 Things These Kids Need from Us.

Come back each day  beginning tomorrow I will take 1 topic for the next 10 days.

Anny

Sunday, July 31, 2016

Day 50: The Lessons Stuck.

Day 50

Our daughter Detamara nearly 24 stayed home with support and dog sat her brothers two dogs and one of them a 10 month old puppy hound named Copper.   Mackie just came up with his dolls toe chewed off and wanted help fixing his doll named "appointment".

She talked about not being able to leave Copper alone. He chewed up some of Mackie toys and his baby doll appointment big toe.  She noted he only gets in trouble when no one else is around.  She told him "no" and he wasn't able to learn and control himself without someone watching him.  So she just kept him with her the rest of the time and there were no more messes or destroyed belongings.

I looked at her and told her now she knows what it is like to be a parent of a toddler or a child with FASD.

She told me, "Mom, Where do you think I learned it from! Mom you kept me from getting into trouble, teaching me right from wrong and in time I learned to be able to control myself and now I can help Mac and the dogs to keep them from getting themselves in the doghouse and timeout!"

Anny


Tuesday, July 26, 2016

Day 44: FASD No Two People Are Affected Alike

Day 44

Back after a 13 day whirlwind marathon of helping run the Noonan Syndrome Foundation Conference.  My daughter Becca has Noonan Syndrome and I work another job as well as being on the NSF board and Chief Operating Officer on the Executive Leadership Team.

With having kids like mine, I wear many hats and advocate for many causes.  Thank you to Jodee Kulp my partner on this 90 day campaign.  We have each other backs so one of us can do what we need to and we will continue to make this happen.

Today I needed a simple post and I am learning that simple graphics with information with popping images spread awareness the best.

Today's post.  No two people with FASD are affected alike.

Wednesday, July 13, 2016

Day 31: The FASD Umbrella





Today was a busy day and we are sharing a graphic to teach about the FASD umbrella!

FAS = Fetal Alcohol Syndrome
ARND = Alcohol Related Neurodevelopmental Disorder
PFAS = Partial Fetal Alcohol Syndrome
ARBD = Alcohol Related Birth Defects
ND-PAE = Neurodevelopmental Disorder-Prenatal Alcohol Exposure

To Learn more about FASD go to National Organization on Fetal Alcohol Syndrome

Mac says Thank you for learning more about the FASD's.

Anny

Tuesday, July 12, 2016

Day 30: 11,367 People Met Mac

Day 30

Mac is the face of FASD for the launch of the  90 Real People Real Lives for raising awareness for FASD. He is circulating the world for these past 30 days and his Facebook post as been picked up 11,367 times.

Mac and his little Red Shoes are traveling the world with his friends from now until September 9th which is Fetal Alcohol Awareness Day.

Let see how many people he can reach in the next 60 days!  Maybe lets see if we can ad another 0 and hit an impressive 100,000 people!

Head on over to like Red Shoes Rock and then share Mackie! 

Anny

Sunday, July 10, 2016

Day 29: Mackie's Sharing 10 Things to Know About Fetal Alcohol Syndrome

Day 29 (A Day early. Therapies and Neuromuscular clinic for Mac Monday)


The Ten Things to Know About FASD Campaign.



I just finished all 10 Lesson on our 10 Things You need to Know About FASD and here is the list with the links.


#1 People with FASD have challenges due to no fault of their own. They are the innocent victims of prenatal alcohol exposure. 

#2 FASD is complicated and no two people are alike. Prenatal alcohol exposure can cause damage to any system of the body. Recent medical literature reported over 400 different diagnoses and problems associated wth FAS.

#3 Most of the time FASD is invisible. People with FASD can look normal, but struggle with normal. Only 1 out of 10 will have the physical characteristics associated with prenatal alcohol exposure.

#4 Most people with FASD will have normal intelligence. Some will have high intellect and still struggle. The majority will need a circle of external support for their lifetimes.

#5 You cannot outgrow FASD. It is permanent and a life-long condition. There is no cure. It is a struggle to find diagnosis, support and help as there is no disability category where they fit in. Finding early diagnosis and intervention can help mitigate secondary mental health challenges. 

#6 People with FASD can have memory and processing challenges, motor control, auditory, visual and sensory processing issues. It is important to realize their world is different than ours. 

#7 The brain is complex. Just because you can say it, doesn't mean it is understood. They may  need help with cognitive translation. Often times it is not they won't do it, they may need a different way to be able to achieve it. 

#8 We just think beyond chronological age and meet them at their developmental, social, and emotional stages with respect. They learn well with experience in safe and fun guided steps.

#9 Persons with FASD just want to be understood, cared for, included and most of all loved like everyone else.

#10 It's 100% preventable. It is the number one cause of prenatal brain injury and lifelong learning challenges. 

Thank you for taking the time to learn more about Fetal Alcohol Spectrum Disorders!



Mackie and Anny

Day 28 Raising Awareness for FASD, Help Mackie Spread the Word!

Day 28



There are a whole lot of kids like Mackie and his siblings with the FASD's.  More than you would ever think!

Check out the Data on FASD


"In person newer estimates puts the prevalence of FASat between 6 and 9 children per 1,000. And that’s is "just" for full Fetal Alcohol Syndrome on the far end of the FASD spectrum. By far more people who fit into the FASD category. Results of one study suggest that 2.4 to 4.8 percent of children in a midwestern community were affected by FASDs. Another larger-scale analysis paints a similar picture, putting the rate of FASD among schoolchildren in the U.S. and some western European countries at 2 to 5 percent."
 Everyone thinks FASD is not a huge problem.  This article is telling us that 2 to 5 percent of all children are affected by this condition. "That FASDs affect more kids than both peanut allergies and diabetes? And that who is talking about this?"  Mackie is!
Schools have become very peanut allergy aware and are taking precautions to help those children affected.  Schools work hard to make sure kids with diabetes be accommodated at school. If we have higher levels of kids than both!

Let's raise AWARENESS and help Mackie spread the word!

Anny

Saturday, July 9, 2016

Day 27 10 Things You Need to Know About FASD #10 It's Preventable

Day 27



The one thing I hope you learned from our 10 Things About FASD campaign is that it is a life-long disability and the numbers of those affected are staggering.  Most do not know they were affected.
Many of those who are affected by FASD's  find help and diagnosis under one of the Alphabet Soup of co-occurring disorders.

The best thing we know about Fetal Alcohol Spectrum Disorder that it is 100% preventable.
No one need to suffer the long term affects and struggles caused by prenatal alcohol consumption.

Think about it, from statistics 50% of all pregnancies are unplanned. By the time the Mother finds out she is pregnant and STOPS DRINKING ALCOHOL is may already be too late.  But stopping any time along the line can help lessen the effects.

No amount of alcohol is recommended for a pregnant Mother.  It may be her right to drink, but STOP and think about the baby who may have their full potential lessened by drinking while pregnant.

You have probably seen the 049 in some of the graphics and here is the explanation.
SUPPORT - 049
0 = Zero
4 = Four
9 = Nine
for Nine Months - Support Friends and Family's Sobriety through their Pregnant Pause to encourage building better baby brains.

Spread the word and thank you for taking the time to learn about FASD.

Anny


Thursday, July 7, 2016

Day 26: 10 Things to Know About FASD #9 Wise Words

Day 26 (Early for Friday as we are on the road again)



We asked those participating with the  90 Real People with Real Lives campaign we asked them their one wish.  This slide is not for me to write.  It is their voices, their wishes.

"Anna wishes to be seen for who she is and not for her disability."  from her Mom

"To help others like him in the same way many individuals helped him." from an adult with FASD

"For people to understand that because I look ‘normal’ my brain is not. I am not a ‘bad’ kid or a spoiled brat my brain just cannot process things like yours can. I want friends and can be very loyal. Take a chance and get to know me!"  from a child with FASD

"I just wish my Mom had cared more about me than drinking alcohol. She made it hard for me and it didn't need to happen."  an young adult with FAS

"Jonathan has many wishes!…no more babies born with FASD’s, healing for those who have it, unconditional friendships and acceptance by others." from Johnathan's Mom

"Angelo’s wish would be for no other mom’s to drink while they were pregnant so that other children would not have trouble thinking like he does.  He wishes that he could ‘think straight’."
from Angelo and his Mom

"I wish she knew how much she was loved".  from a parent of a child with FASD

"She just wants to be loved and accepted for who she is, and not feared for what she is capable of doing. To not be loud or lose control. To not get so mad she hurts the ones she loves but can’t remember why?"  from a Parent of an adult with an FASD

"For people to understand and not judge, for people to not assume that just because I look and can act neurotypical, that I am not neurotypical. (That can be really frustrating). And to be treated the same as everyone else." an adult with an FASD

"To never have anyone go though what I did with living with FASD." an adult with an FASD

"Tiana wants people to know that just because I have FAS and have some problems that I am no different from anyone else."  a wise young lady with FAS

 "My wish is that people living with FASD receive SERVICES AND PROGRAMS. Services that accommodate, and programs that coach them to manage their FASD, help them to move forward with their dreams and goals, to understand FASD even if its a little bit at a time. For the world to understand what FASD is like, LIVING ON A ROLLER COASTER THAT NEVER STOPS BUT WE CAN RIDE THE RIDE WITH JOY, LOVE, EXCITEMENT, AND STAY HEALTHY!" well said by an adult with an FASD

"Educate to Erase #FASD"  Thank you Rebecca an adult with an FASD


Thank you to the adults and children/parents and caregivers for helping us share your voices in our campaign to raise awareness, teach and advocate for those living with FASD's.

Anny








Day 25: 10 Things to Know About FASD #8 Think Beyond Chronological Age

Day 25



With working with kids and adults with FASD's we need to look beyond chronological age. We need to meet them where they are function and adjust our expectations.

A child's chronological age is their age based on their date of birth. Their developmental age is the age at which they function emotionally, physically, cognitively and socially.  While a child with FASD may be 8 years old, they may be functioning very much younger.  Often times kids with FASD are functioning at half their chronological age.

 Think about it.                                          
                                             Developmental Age Equivalent
Actual Age                            18 years
Expressive language             20 years
Comprehension                      6 years
Money and time concepts      8 years
Emotional maturity                 6 years
Physical maturity                  18 years
Reading ability                      16 years
Social skills                             7 years
Living skills                           11 years

*Streissguth, A.P. & Kanter, J. (Eds.) (1997). The Challenge of Fetal Alcohol Syndrome: Overcoming Secondary Disabilities. Seattle: University of Washington Press.

Understanding that there is often a difference between a child's chronological and developmental age will help caregivers and professionals have more realistic expectations for the child with an FASD.

Age Appropriate Expectations versus Developmental Age Appropriate Expectations

It can be easy to think of kids who don't meet typical milestones as being younger than they are or  if they are small and appear much younger.  But it can be confusing for all when a child physically and cognitively appears to be say 13, but emotionally acts like he is 6.  They child wants to be like everyone else, but struggles with peer relationships and emotions due to his developmental lag which makes it even harder on everyone.

For parents and caregivers we need to set up a child for success by meeting them at their developmental age with fun, learning and structure.  All the while taking into account the individual strengths and challenges of each individual child with FASD.

For adults with FASD because of the developmental lag a delay in the full responsibilities of adulthood may be a protective factor.  Imagine sending a 9 year old into the real world with little to no support when they are 18. For adults with FASD we need to meet them where they function and give them the circle of support tailored to their needs for life.

Anny

Day 24: 10 Things to Know About FASD #7 We Talk Too Much

Day 24



One of the biggest challenges about working with adults and children with FASD's is that often need help with interpreting what is being said and they need it presented in a way that they can understand.  

When talking with my daughter, she tells me the teachers talk like the teacher from Charlie Brown. Unlike Peppermint Patty, my daughter would sit there quietly trying to process what was being said.



She would watch what the others were doing to see what book to take out, what page to turn to or whatever they were doing for a cue to know what to do next. In first through third grades, she did great in a classroom where she was mainstreamed with kids with hearing challenges due to the interpreter and the all the visual instruction!  When they took away what worked she struggled.

Sometimes we speak too fast and part of the dialogue is lost in translation.  Think about missing key words in an instruction and to later learn after the fact that you did exactly opposite what was expected due to missing part of the instruction.   For my Mackie, he does not process Do not. He hears the instruction first and completely misses the do not.  So he does the vary thing you asked him not to do again and again.   So if we tell Mac  "Do not hit the cat."  He will hit the cat again and again again until we we change the command. We have learned that we need to tell him what to do instead. "Be nice to the cat!"

We talk too much with persons with FASD. We need to talk slower, simpler and know how the person with FASD needs us to communicate. We may need to give 30 to 45 seconds for processing and then allow more time for them to  access their response.   Others may need repetition or it written to process the understanding.

With my 6 with FASD's each have their own individual strengths and challenges. No two are alike. While one may be able to process normal spoken language, when disregulated or off balance,  he may need back up written messages.  Texting with my adults with FASD has been a very wonderful tool for me to use when communicating and they can go back to double check the instruction if they forget.

A couple of my kids are athletic.  But for one, she was fast!  She as an eighth grader ran times that would have qualified her for the state meet her brother attended.  She has a processing delay.  She was always late off the starting line.  She didn't hear the starting gun.  She didn't go until after the racers were off their mark.  She still moved on to win the race. But she was getting yelled at by the coach for her delayed starting.  I stepped in and talked with the coach and we got someone who gave her a hand signal (accommodating her the same they would a deaf runner).  She shaved seconds off her time.  She shined.  But high school happened, state rules interfered and she once again was frustrated by not knowing when to go and quit track. Today I would have known better how to fight for her right to accommodation.

The saying "Hear it and they often forget. See it and they may remember it."  It is a must to remember with many with FASD's as they use visual memory much better than anything given auditory.

Advice from someone who had to learn the hard way.  I thought they understood. Sometimes he could tell  me verbatim what I said right after the fact.  Other times they would agree and would tell me they will do it or they could do it. But not.

 Just because a person with FASD can answer the question and know the answer does not automatically mean they understand what you said.  Double check for understanding and be ready to explain -- connect the dots for what they are missing.

In some with FASD's  due to executive function deficits, cause and effect challenges what they know and say cannot always be put into action.  It may even be understood in one way and may not even work in reality. And what one day they can do, may not happen tomorrow. What is known in one setting may not be translated into another.

Can I say this is complex stuff?  Think about how frustrating it is to have processing challenges in our complex world due to no fault of their own.

We would not expect a deaf person to go to an appointment with out an interpreter have a tool to hear. Persons with FASD need help with cognitive translation in ways for them to process and have full understanding of our complex fast moving world.

I have gone with my adult children to SSI, Medicaid, coaching job interviews from afar. I have helped connect the dots with the justice system and translate the legal jargon to my child. I am there as their interpreter, coach and friend to make sure that they expand their confidence and supported.

It has been a l9 year learning curve and I am still learning.  My adult kids with FASD are more open now to helping me understand.  They have developed many tools and ways to help compensate and they are amazingly resilient. They each have incredible gifts and talents and we need to help support and accommodate the challenges.

Anny


Wednesday, July 6, 2016

Day 23 10 Things about FASD #6 The Struggle with "Normal"

Day 23





Prenatal alcohol exposure can cause permanent life long challenges and each person is affected differently.  Those with FASD can have memory difficulties, processing, auditory, visual and sensory processing issues.

For those affected, no two are alike, but these common difficulties in some degrees affect the majority.

Prenatal alcohol exposure can affect any system of the body including they eyes and the processing of visual information and there are over 428 different diagnoses associated with FASD's.

People with FASDs have a hard time with memory and learning. More than not, a person with FASD is living a moment to moment existence .  My youngest daughter was found at the age of 16 through her a neuropsychological examination to have a profound memory disorder.  I knew that she would often live in the moment and she really does forget. My daughter is just like Dory from Finding Dory. She tells me that she has young people's Alzheimers, except she never could remember in the first place. But she is amazing with electronics.

The reason for these memory and learning problems is that alcohol exposure interferes with brain development. It can reduce the size of certain regions of the brain and can hamper communication between the different parts of the brain.  When that communication throughout the brain doesn't work smoothly, people tend to have problems with executive function.

Executive function is the mental processes that allow us to plan, focus, learn from experience, prioritize and in other words get things done and remember to get things done and why. Persons with FASD will have executive function deficits in some way or another.

Executive function deficits:
https://www.understood.org/en/learning-attention-issues/child-learning-disabilities/executive-functioning-issues

Auditory processing disorder:
Auditory processing disorder (APD), also known as central auditory processing disorder (CAPD), is an umbrella term for a variety of disorders that affect the way the brain processes auditory information.
http://www.asha.org/public/hearing/Understanding-Auditory-Processing-Disorders-in-Children/

Sensory processing disorder:
Sensory processing disorder (SPD; also known as sensory integration dysfunction) is a condition  when multisensory integration is not adequately processed in order to provide appropriate responses to the demands of the environment. 
http://www.sensory-processing-disorder.com

Receptive and Expressive Language disorders:
An Expressive language disorder is an impairment that makes it hard for someone to find the right words and form  clear sentences when speaking.  A Receptive language: It can make it difficult to understand what another person says. Some may have both.
https://www.understood.org/en/learning-attention-issues/child-learning-disabilities/communication-disorders/understanding-language-disorders

Persons with FASD due to no fault of their own, everyday will struggle with what comes easily to the rest of us.

When a person with FASD is stressed, they will struggle more with accessing, processing information and regulating their emotions and life can be even more complicated.

Patience and understanding will go a long way to make it easier for them.

Anny





Monday, July 4, 2016

Day 22: Happy 4th of July-- Keep it Simple and Prompt to Success

Day 22



Happy 4th of July to you all. For some of our kids, the lack of routine and the changes lead to a very tough holiday for all of us.

Watch your child for signs of stress. Be reassuring and prepare to exit before meltdown.

Parents can help.  Keep it simple, provide structure, prompt the changes and expectations at every step, and praise for their success!


Have a great day!

Sunday, July 3, 2016

Day 21: FASD and Nutritional Intervention

Day 21



There is much written about parents with Children with Autism and the Gluten-free Casein Free diets trying gluten-free casein-free diets. For some it works and others it doesn't.   Some parents with those with the FASD spectrum are finding the the same success.

I have been gluten-free myself for the past 35 years and gluten in my house is rare at this point.
Our little guy Mac came to use with huge food, dairy and protein intolerances and we kept him gluten-free due to our gluten-free home and an article I read long ago.

Now that Mac is older, he is fast and he inadvertently manages to get gluten or casein containing products.  My calm, non-violent child turns into a complete extremely hyperactive monster with just the ingestion of one gluten/casein dye containing Cheeto!  If you don't believe me, just as the therapists to have witnessed it with a impulsive hitting Mac and a regression into autistic behaviors.

Red dye is even more horrible than gluten or casein for him.  We have him dye-free, gluten-free, casein free and he thrives like others on the FASD spectrum.

Today I am sharing an article I found long ago, which has helped him help Mac.

Nutritional Interventions for Children with FASD by Diane Black

If anyone has any questions on how to go gluten-free, casein-free please feel free to email me at Anny458@aol.com.

Anny

Saturday, July 2, 2016

Day 20 Fireworks and Sensory Processing Disorders

Day 20



The 4th of July Holiday may be enjoyable for many people.  But for some of my kids, it is time to shut all the windows, grab the noise blocking headphones and enjoy fireworks displays from as far as we can to muffle the noises.

July 4th, Fireworks, and the Sensory Sensitive Child

Helpful Hints for Enjoying Fireworks with Special Needs Children

Happy 4th of July and we will be grabbing the noise blocking headphones and enjoying fireworks from in front of the television set with the Boston Pops.

Anny


Friday, July 1, 2016

10 Things to Know about FASD- #5 FASD It is Life long!

Day 19

For those with FASD diagnosis is paramount. For those who grow up with having an FASD and have early diagnosis and intervention we give them a step up and hopefully more resilience and a better future.


Fetal Alcohol Spectrum Disorders is a permanent life-long condition and there is no cure.

Having FASD will not go away!  No not ever!

For those with FASD diagnosis is paramount. For those who grow up with having and FASD and have early diagnosis and intervention we give them a step up and hopefully more resilience and a better future.

Most of my adult children with FASD due to their normal IQ, have had to fail first before getting help.  The only hope for services is when their secondary mental health needs go into crisis.  mental health they use the recovery model.
Recover from FASD?

I have seen that my adult kids do better once services are put in place.  Once the secondary mental health needs get stable, the systems pull back the vary services that led to the stability.  Thus creating a roller coaster of failures.

For the persons with FASD who fall into the developmental disabilities services it is far more understanding.

We need a CATEGORY under the disabilities Silos of support that persons with FASD can find appropriate services without having to find their services after they fail enough to develop secondary mental health and secondary disorders.

FASD does not need to be HOPELESS!

Anny








Thursday, June 30, 2016

10 Things To Know About FASD- # 4 Most People With FASD have Normal Intelligence

Day 18


Most people with FASD will have normal intelligence and their are those who have high intelligence and are gifted but they can still struggle. Prenatal alcohol exposure is a leading cause of prenatal neurological challenges.

According to one study, 86% of individuals with FASD have an IQ in the "normal" range and do not qualify for services for developmental disabilities.  They nevertheless have impaired mental functioning caused by brain damage that is permanent and irreversible.

According to Streissguth and other studies, the higher the IQ the more persons with FASD are misunderstood and have poorer outcomes.   Those with the hidden neurological challenges and appear normal are set up for expectations that they cannot meet.  Schools, society and employers cannot see their hidden challenges.

Think Developmental Age and Chronological Age.  This can be hard as they are often times functioning well below their Chronological Age.  But they do not want to be treated differently.

Understanding in Adults with FASD from Nofas

Often times their strong verbal skills can hide or mask the deficiencies and it can be confusing to those working with them.  My kids would have memorized the answers and may not be able to put into practice what they know.  Executive function, memory, social skills, cause and effect are all can be affected.  I have learned in my 20 years of working with those with FASD that they can be good actors. They have learned to mimic normal and when you double check for understanding often times they cannot explain.   People with FASD can be vulnerable to suggestion and wanting to be accepted can lead to victimization.  They can struggle with predicting outcomes and having a trusted people to coach and problem solve need to be part of transition and lifelong planning.

Secondary Disabilities in FASD.
Over 90 to 98%  of those with FASD will have or develop secondary mental health challenges.

According to research only 8 percent of those with an FASD will live independent successfully. The rest will need a spectrum of support geared to their own unique needs.

What happens when we do not support those with FASD in adulthood adequately?

Check out the statistics

Families know all too well.  On our Parenting FASD Teens and Adults caregivers and parents share our challenges and our grief at just how hard it is to find support and understanding for our Teens and Adults with FASD.   Most will struggle with jobs, qualifying for disability services and their "normal IQ" The adults with FASD especially in the transition years of 17 to 27 the lessons are often learned the hard way by all involved.

Persons with FASD need a circle of support.  As we advocate for those with Fetal Alcohol Spectrum Disorders we lifelong person centered supports tailored to each individuals strengths, challenges and choices so they can live successfully in our communities.

Anny









Tuesday, June 28, 2016

10 Things About FASD #3 Most the Time FASD is Invisible

Day 17

It is estimated that only 1 in 10 kids with an FASD will have full Fetal Alcohol Syndrome.
In our Parenting FASD Group the parents who have children with the invisible signs of prenatal alcohol exposure struggle with getting diagnosis and help for their children who were prenatally exposed.  Often times parents struggle with knowing that their child has an FASD and will find many closed doors to diagnosis.
The children with full Fetal Alcohol are often diagnosed much younger and have the classic FAS features and growth failure.  With that they get more earlier intervention and understanding.
In Fetal Alcohol Syndrome the diagnosis is made by looking for the visible signs:
Abnormal facial features.
A person with FAS has 3 distinct facial features:
  1. a smooth ridge between the nose and upper lip (smooth philtrum),
  2. a thin upper lip
  3. a short distance between the inner and outer corners of the eyes making the eyes look wide spaced.
Growth problems:
  • Children with FAS are at or below the 10th percentile for height and/or weight.
    Some children with FAS can outgrow their growth failure later in childhood
  • Central Nervous System Disorders
  • Requires confirmation of prenatal alcohol exposure.
To get an FAS diagnosis the child needs to have all three of the above.
For the MAJORITY of the kids with Fetal Alcohol Spectrum Disorders you cannot tell by looking at them and even professionals struggle with diagnosis.
From Nofas
“Although it has been over 40 years since the harmful effects of prenatal alcohol exposure were identified in medical literature, the majority of individuals with FASD—of any age—are not properly diagnosed.”
Those with most FASD’s are often times diagnosed with any of the little d’s of the Alphabet Soup instead.
Anny

10 Things About FASD-- #2 No Two People are Alike and It's a Spectrum

Day 16

Fetal Alcohol Spectrum Disorders is an appropriate umbrella for the wide variety of ways people exposed to prenatally alcohol are affected. Depending on the how much consumption, the time of consumption, stress, nutrition and all sorts of still being determined ways alcohol affects the development of the baby.  Add individual genetics, the timing of the exposure, there are so many things that come into play.

It's complicated.   Think about the new article where they gleaned information from the scores of articles on just Fetal Alcohol Syndrome and they found over 400 differing diagnoses and medical problems.

"Researchers at the Centre for Addiction and Mental Health (CAMH) have identified 428 distinct disease conditions that co-occur in people with Fetal Alcohol Spectrum Disorders (FASD), in the most comprehensive review of its kind."

To see the article in the Lancet from March 5, 2016

Comorbidity of Fetal Alcohol Spectrum Disorders: A Systematic Review and Meta-Analysis

At least we are beginning to understand and acknowledge just how complicated FASD can be. For those who are affected and the families understand that prenatal alcohol exposure causes challenges that are different for each person who is affected.

Anny

Guest blogger at the Lighter Side of FASD: "Literal Language Interpretation"



When I tell my daughter she is in the “doghouse”. This is what she thought.

I did not say that she is in TROUBLE. For my kids with special needs the English Language and its abstract meanings of words can be confusing.

Think about all the different interpretations that we simply understand that “throw” our kids.

Check out my writing on the Lighter Side of FASD with Jodee Kulp.

Anny

Sunday, June 26, 2016

10 Things You Need to Know About FASD-- #1 People with FASD have challenges due to no fault of their own!

Day 13 and 14


My friend and I were venting about the unfairness of FASD. I was sharing with a friend one day about a conversation with Miss Dee who was talking about her FASD.  "Why did she and Mac not have the right to be born with healthy brains?"  

How can I answer that question? She wanted to know "Why people made her feel bad that she had Fetal Alcohol Syndrome? It's not her or Mac's fault!"  Talking further, "I get in trouble for forgetting. I get told to try harder. I can't learn like everyone else." 

She added, "Why do people not care about us until we are born?  "Why would anyone care more about having fun drinking alcohol than their baby? A loaded question. 

Dee and Mac's  birth mothers had challenges of their own and they had their first drinks long before they took their first breaths. Both mothers had learning problems, mental health issues and had substance abuse dependencies and both Mac and Dee have full fetal alcohol syndrome. I  have learned that they all have complex challenges and trauma.

Those who have FASD are innocent victims. Innocent Victims of being exposed to alcohol prenatally and further victimized by the lack of appropriate services. . Misunderstood and blamed for their hidden neurodevelopmental challenges. 

There is no place for people on the spectrum to fit,  Mental Health Services, Developmental Disabilities, Autism, are the silos where they sometimes can garner support for their prenatally acquired brain injuries.  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 a circle of support and understanding for life.

For the fortunate few, they kind of fit someplace. FASD needs a category all of its own. 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.  Services and understanding by professionals who understand FASD's are hard to find and expensive.  It is said one person with full Fetal Alcohol Syndrome may cost over two million dollars in a lifetime. 

How many people are living with FASD?  We do not really know.  From the CDC statistics, "based on community studies using physical examinations, experts estimate that the full range of FASDs in the United States and some Western European countries might number as high as 2 to 5 per 100 school children (or 2% to 5% of the population)." 

How many kids are prenatally exposed to alcohol and are diagnosed under the Alphabet Soup of co-occurring diagnoses like ADHD, autism, bipolar, anxiety and learning disabilities?

Statistics of FASD. 

Why can't we get diagnoses and 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?  Some may not even know. There is conflicting information on how much alcohol is safe and up until recently, no dire warnings.  There are a few courageous Parents who love their child enough to admit to alcohol use but most who are diagnosed are not the families of origin. Foster parents, adoptive parents, kinship parents are in the majority getting diagnoses and that is never easy to find and get. 

Causing FASD is not just a problem of chronic substance abusing parents.  It is a much larger problem. A women binge drinking before she knows she is pregnant prenatally exposes the baby to alcohol.  

What we can do?  Spread awareness about FASDs and be supportive, caring and understanding to those who have FASD's. 

Anny


Friday, June 24, 2016

Day 12: 10 Things You Need to Know About FASD-- Thank you Parenting FASD Kids

Day 12

Over the next 10 posts I will be breaking down the 10 Things You Need to Know About FASD.

 I did not come up with these alone. I want to THANK the 69 Parents at PARENTING FASD KIDS for stepping up to help me raise awareness and spread the word about FASD.

Parenting FASD KIDS is a closed Facebook group over 2600 strong that Terry Quinn and I started three years about for Parents and Caregivers to share our journey's in FASD with our Kids and find support, understanding, and hope for our families.




Have a great weekend everyone!
Anny

Thursday, June 23, 2016

Day 11: Meet Mac

Day 11














I received an email from a long time friend asking to use a picture I had recently posted on my Facebook thread to raise awareness about Fetal Alcohol Spectrum Disorders. Of course I said "yes"!

We cannot raise awareness about FASD's and rallying for supports for those affected unless we find the courage to step up and put it out there.  Brainstorming with Jodee we planned and launched the 90 Real People Real Lives campaign.  We day by day would reach out to the FASD support groups on Facebook to find people, parents and kids courageous enough to share about living with FASD.  I launched a blog that I had owned since 2008 and began writing again.  It has now been 10 years since releasing our families memoire "Tiny Titan, Journey of Hope" and being honored with a Gold Award from the Mom's Choice Awards and given a 5 star Dove Rating.

Most people do not know that Jodee Kulp helped me publish my book and we have been long time friends and partners in the quest to raise awareness and help families find hope and help living with FASDs.


Meet Mac... Day 1 of 90 Real People Real Lives and also Meet 89 Real People with Real Lives
affected by prenatal alcohol exposure.

Mac came to us at 17 months old and was soon diagnosed with full Fetal Alcohol Syndrome. His birth mother had Tourette Syndrome and learning challenges of her own. She had mental health disorders and substance abuse issues.  He was the third child, born in three separate states who would be taken away and put into foster care/adoption.

He is our "second time around kid" and he got a second chance at a new life. He has the benefit of all our years of learning with our medically fragile daughter Becca and the lessons from our adopted sibling set and their FASD and the alphabet soup.

He is our gift.  Others say he was won the lottery ticket when it comes to families, but we say we won having him.  Maybe we are both right.  God chose Mackie the family who he needed and the family that never gives up and we our gift and a chance to use everything we have learned to help him and maybe out of that, maybe what we learn with Mackie will help others just like with Becca and her Noonan Syndrome.

More about Mac

Little Mac Teaches Family, Yurcek's Find Joy in Adopting A Special Needs Child


Thank you Jodee for sharing Mac and for helping me launching my blog and for the Red Shoes Rocks and for tirelessly raising awareness about FASD.  Maybe with teaming up we can lighten the workload and make a difference for persons affected by FASD and their families.

PS:  I absolutely love the Cartoon Mackie graphic you designed and look forward to what adventures  Mac and the cartoon Mac travel!






Wednesday, June 22, 2016

Day 10 Ten Things You Need to Know About FASD (Fetal Alcohol Spectrum Disorders)




Ten Things You Need to Know About FASD  (Fetal Alcohol Spectrum Disorders)

l. People with FASD have challenges due to no fault of their own.  They are innocent victims of Prenatal Alcohol exposure.

2. FASD is complicated and no two people are alike. Prenatal alcohol exposure can cause damage to any system of the body.  In recent medical literature there were found to be over 400 different diagnoses and problems are associated with FAS.

3. Most of the time FASD is invisible.   People with FASD can look normal, but struggle with normal. Only 1 out of 10 will have the visible physical characteristics associated with prenatal alcohol exposure.

4. Most people with FASD will have a normal intelligence.  Some will have high intellect and still struggle.  The majority will need a circle of external support for their lifetimes.

5. You cannot outgrow FASD. It is permanent and a life-long condition. There is no cure.  It is a struggle to find diagnosis, supports and help as there is no disability category where they fit in. Finding early diagnosis and intervention can help mitigate secondary mental health challenges.


6. People with FASD can have memory and processing challenges, motor control, auditory, visual and sensory processing issues.  It is important to realize that their world is different from ours.

7.  The brain is complex. Just because someone with FASD can say it, doesn’t mean its understood.  Just because they can tell you what to do, doesn’t mean they can actually put it into practice.   They may need help with cognitive translation.  Often times it is not they won’t do it, they may need a different way to be able to achieve it.

8. We must think beyond chronological age and meet them at their developmental,  social and emotional  stages  with respect.

9. Persons with FASD just want to be understood, cared for, included and most of all loved like everyone else.

10. It’s 100% preventable.  It is the number one cause of prenatal brain injury and lifelong learning challenges. 


Anny

** Thank you to all the parents and caregivers at Parenting FASD Kids for helping me brainstorm this list!  You are all experts, loving and living with your loved ones with FASD.