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

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.

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

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

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

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

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

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

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!

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

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

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