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.


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.

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.


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.


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. 


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!

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. 


** 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.

Tuesday, June 21, 2016

Day 9 Fetal Alcohol Syndrome Does NOT Resolve

Day 9

I was cruising one of my adult kids medical records and discovered one Internal Medicine Doctor wrote on her records from her visit that her Fetal Alcohol Syndrome has RESOLVED.  I wish!

I think we need more education for the Medical Providers on FASD's.

Quote from the Texas Office for Prevention of Developmental Disabilities.

"FASD is a brain-based disability. As such, FASD is life-long and cannot be cured. FASD is a birth defect that is 100% preventable."

 Just correcting for the record!


Monday, June 20, 2016

Lessons from Mackie and Finding Dory for this Special Needs Mom

Day 8

Yesterday I planned a topic to write about for my 90 challenge, but last night changed that.  This morning reading a post from my favorite threads "The Mighty" had me thinking and writing. "What Finding Dory Taught Me as Someone with Autism" about my last nights's adventure to the movies with Mackie.

A couple of months ago, Mackie had found the trailer for Finding Dory and we began the long awaited arrival for the film. He has watched every thing he could find on Finding Dory, in english, Spanish, French, and whatever languages he found while cruising the internet and bringing to my attention all things Finding Dory.

 Mackie has Autism, Fetal Alcohol Syndrome and is medically complex and adopted from the foster care system. Mackie can recite his favorite scripts in multiple languages and sings the theme songs from his favorites in many languages.  But some days loses the ability to speak and often times cannot control body due to involuntary muscle movements due to his neurological challenges.

Mackie has been asking for over a month  "Is it is Friday June 17th yet?" Many times a day.  No Mackie, not yet.  Somedays more times than others.  We even were counting down the days to the long awaited release at the "Movie Feater" on the calendar.  He loves going to the movies.  We have had to buy the books, Ty stuffed beanie babies Dory, Nemo, and Destiny. We have stocked up on all the pool toys for Finding Dory and he has been practicing swimming with Dory and playing with his friends. Color books and stickers to practice his Occupational Therapy Goals. Anything to buy some time and help with the obsession and to help him have fun all the while doing therapy to strength his body and skills.

We  all now know parts of the story and his questions and remarks have been keeping us busy while we wait. Mommy "Dory lost her family."  I lost my Mommy and I found a family with you and Daddy! Dory forgets, Dee forgets, I forget and talk too much.  "Yes Mac we all have things we are good at and things we struggle with."  My now memorized response.   I love to hear that soft little voice reciting "Swimming, swimming, keep swimming!" chasing his Finding Dory water toy swimming in the bathtub or the big ocean swimming pool. Nemo has a bent fin and his lucky fin swims a little differently. Mackie struggles to walk and walks differently, but it doesn't stop either of them.

June 17, The long awaited opening of Finding Dory arrives!

When he was tiny and not talking, going to the movie's was easy.  He quietly sat there.  But no longer.  He is full of curiosity and questions.  We worked long and hard he has cost thousands of dollars in early intervention to get him to talk and develop skills and today I want him to be quiet!  With his autism, he "scripts" the movies and memorizes as he goes.  Now he has progressed to asking questions and with his impulse control affected, it is not always at the appropriate times. We will be hearing the movie script words and questions for weeks to come, especially at his 3:30 am wake times.

He had been asking and asking as soon as Friday June 17 finally arrives.  No I didn't tell him. He seems to have a thing for having a sixth sense when it comes to calendars, days and times and he knew it was today.  I would have rather waited a few days to the crowds thinned down before telling him.

We promised him that we would go and it was NOT going to be delayed.  Distracting him with Meet the Robinsons on Disney Junior a half dozen times so he would quit obsessing over wanting to go. We had procrastinated as long as we could.  So Sunday night it was.  Our small town movie theater was a much better choice than heading to one of the theaters in one of larger towns surrounding us.  He had been in that theater a dozen times already, less sensory stimulation as he knows the environment.  This is one challenge I would be able to take out of the equation.

We asked the girls to join us, at 23 and 26 with their own disabilities. Going to the movies is one of our favorite outings. But they politely declined. They have learned that Mackie can be a little distracting and the word they use "embarrassing" at moments during a movie, especially when it is at a climax of excitement.  So much for Family movie outings.

I had been at the school and community playground for a meeting brainstorming with others about how to build an inclusive playground for children with disabilities in our small county seat community when Mac and Dad picked me up.

Pulling up I gasped when I realized when we could not find a parking spot on main street that we were in trouble and following up on the promise we made.  Breathe Mom, breathe.  We pulled into the empty handicap parking stall next to the City offices.  Doc and I looked at each other without saying anything, we knew we were in for an adventure.  Unfastening Mac and picking up  his blanket Dad and I talked to him about the rules.  "We are quiet while the movie is playing so others can watch the movie and not be disturbed."   Finding Dory  here we come, praying for Mac to be quiet and praying that those around us would not be too annoyed.

Many parents with autism and obvious disabilities do not take their children out.  I learned early on that we needed to get them out.  Practice learning opportunities, and expose them to the sensory world of the greater community.  Temple Grandlin a renowned expert writer and speaker living with Autism says we as parents need to push them out of their comfort zones.  We had to push Detamara to expand her tiny safe little world and going to a movie would provoke a tantrum of that would hit a 7 on the richter scale.  We worked for many years and finally as an adult she likes going to the movie theater except with her little brother!  For Becca she loved to go, but we had to wait until there were fewer people and it was not for sensory issues with her autism, but for exposing her to the bugs floating in the community with her immune compromise.

As Doc carried Mac towards the door, his little arms began flapping and he was squealing "Finding Dory".  His involuntary movement disorder triggered by his excitement and he was too happy!

Approaching the ticket counter we ran into his primary care physician who manages his complex care and her family.  Saying hello and I mentioned that this is going to be an adventure and hoped that he would be somewhat quiet.  Never expecting perfection.

Popcorn, sodas in hand and grabbing on of the booster chairs, we were at "Finding Dory" after the hundreds of requests for the new favorite movie. I was silently hoping that the popcorn would keep his mouth busy and quieter!

Picking a seat down front, off to the side, fewer people, an empty space in front of us before the last two rows down front, Mom on one side and Dad on the other. Mom on the aisle, ready to make a break for it in case he "just" got way too excited and loud.

The trailer had him already talking all the while eating popcorn. He has now mastered doing two things at once.  "Mom is that a pelican." Pelican's like to fish in the water. No Mackie in a whisper, that is a "Piper". "But Mom it is Pelican".  "No Mackie, it is Piper. Pelican's have huge beaks and this little guy has a small beak." "Mom when we get home can we learn about Pipers on google?"  Yes Mackie.

He quieted down and then just before started, he started in on the exit sign.  "Mom that is an E and an X and an I  and a T" and announced the newly found letter sounds he has discovered. " Good job Mackie, but remember we have to be quiet in the movie theater!"

The movie started with a startle. He whispered "Finding Dory" and his chorea had his arms flailing and body moving and he nearly fell out of his booster seat with the excitement.

The beginning of the movie, he was mesmerized, he had settled down and patiently watching and taking in the movie.  He was moving his head to different angle to take in the screen.  Mackie has been recently found that his prenatal exposure to alcohol has caused his eyes to be damaged. He has floating blind spots, he is missing peripheral vision on both sides and cannot see things in the bottom 1/3 of his vision.  He sees best 6 to 12 inches away and his vision for distances a blur.  He is seeing and understanding what is going on we believe mostly with limited vision and his keen hearing.

Soon Mackie was quietly scripting, repeating what his favorite characters were saying. I would give him the "shush" sign and quietly whisper in his ear "Quiet in the movie theater" and he would stop.  Over and over again I would quietly prompt him. I believe he repeats to help process what is going on as I have learned from his other adopted siblings who has an FASD.

Bracing for the moments of climatic excitement, I would pick him up out of his booster and get ready for the ensuing storm of movements and unpredictable what was about to come out of his mouth.  We made it through the first three quarters of the movies without a huge event.  Going through the pipes a wrapped him in his always calming best friend blanket, hugged him with deep pressure, prompting, coaching, prompting, now using my finger on his lips to prompt, quiet.  Soon he was putting my finger on his mouth to help himself from talking.  He was trying, we were trying to hold it together.  But my own anxiety was now probably making it worse.  Breathe Mom, breathe.

At the moment of Dory not finding her family, he lost it.  "Mommy she went to far and didn't find her family and Nemo and Marlin are getting taken away."  That was it.  He was sad, he was worried and he was now loud.  Mackie was talking and sobbing and asking loudly they need to get Nemo and Marlin as we scurried up the movie theater aisle.

I was happy to have gotten him out, but quietly hoping that he had not disturbed too many people. I just hope people understood.  With Mackie it is obvious that he has differences.  Thank heaven people will not judge me for my parenting like when we would take Detamara when she was tiny and acting up.  But knowing that some would judge us for bringing a child like him out.

Mac was happy looking at all the movie posters in the lobby and naming the Angry Birds on the poster of the movie that we had missed seeing. Knowing that it was going to be too much.  His birthday wish movie date with Dad and Kung Fu Panda 3 had taught us that lesson.

We visited with the movie theater manager who was busy turning off the movie poster lights and getting ready for the end of the movie.  I immediately apologized for Mackie's disruptions to the manager.  Mac was taking asking what happened in the movie. I prompted him to ask the man for the answer. Mac asked him "Did Dory find her family and did they save Nemo and his Dad?" Maybe he could answer the curiosity as he has been listening through all the multiple opening weekend showings.

The manager did not answer his question, but pulled out his business card and told me that Finding Dory; was going to be at the theater for two weeks and that Wednesday evenings there is usually a thin crowd. He told me to give ticket counter the card and we can come back and watch the movie to find out what happens for FREE.

Living in a small town this movie theater manager has had opportunities to meet my kids. He has been there when Becca would go night after night when the Twilight obsessed young lady would spend her own money feeding her OCD. He even gave her the movie theater poster on the last night for being the biggest fan! I have had conversations with him about volunteer opportunities for my daughters and hopes that someday they could have a small part-time job.

He was generous and understanding and the offer of finishing the movie at another time and after having this exposure, he may be a little less excited and exuberant!.

Doc and I headed up exhausted with a happy little boy who went to the movies and saw Finding Dory.  Scripting lines from the movie and "Swimming, Swimming" he was happy. He didn't need to see the end, he had seen it.  Scripting and questions he was bouncing, flailing and a mile a minute everything was in fast motion.  Until he slowed down and  asked,  "Does Amazon say when the DVD will be released and will we get it Mommy, will we get it Daddy? Will the mailman bring it?"

Yes Mackie we will buy Finding Dory!  All the while we got him into his pajamas and getting him his medications, and doing his neb treatments, nose sprays, we chatted about the story.  He has it all down.  Snuggling him to sleep he scripted the story.  He drifted off to sleep I am sure dreaming of Finding Dory.

After setting down for a my stress relieving chocolate bar and Diet Pepsi.  I was tired, I was exhausted and  I had tried my hardest to do every little trick I knew to keep him calm and quieter so not to disturb others.  My head was spinning with wondering if I done the right thing taking him to the movie?  Should I have made him stay home or wait depriving him of the opportunity because he is different?  Part of what I have learned to do is to reflect on things, look at what worked, what were the struggles, and how I can help them be more successful next time.  Tonight my head was spinning.
my stress relievingI asked Doc "If Mac was as disrupting as it seems?"  Was I just frustrated, my perspective was clouded.

Doc replied.  "He was just Mackie."  Most people will understand and if they don't, they are the ones missing what this movie was all about.

Acceptance, understanding and they just keep swimming against the odds.

I have been parenting in the special needs world for now 26 years with 7 of our children with various learning and medical diagnoses and a long proponent of inclusion.  There are now special movie performances where parents like me can take our children in a few places and not have to worry about disturbing others, but for those kids, they have to wait until it is at the end of a movie run and those movie theaters are few.

But we cannot learn to accept the differences of others when we they are out of sight to the greater community.  Inclusion means at times, we may make others a little uncomfortable to make wishes and dreams come true to those with differences.  For Mackie's future he needs to practice skills in the greater community for a better future.  Lessons from Finding Dory for this Special Needs Mom and lessons from Mackie and his enthusiasm.

We have not decided to if we will go back, but Wednesday June 29 at 6:45 we will drive by the theater and see just how many cars are there and make a decision without telling Mackie. No disappointment if it is busy.  He is content for now, to wait for the the mailman to bring his Finding Dory and he will wear it out until the next movie love begins.

The girls and I have talked about the lessons from Finding Dory. Detamara has a profound memory disorder from her birth mothers prenatal use of alcohol leaving her with the only intact memory is facial recognition. Becca remembers everything with her autism and her Noonan Syndrome and has short term memory issues and they both struggle with executive function deficits.  Mac has an incredible memory, but he will struggle with many things and the lessons of Finding Dory will be talked about in our home for months and years to come.

This morning Mackie told me that he wanted to talk about something.  He began talking and I flipped on my video camera to catch part of our conversation.  He was upset about breaking the rule. No one had faulted him, but he is  rule guy and he is worried.  Sharing Mackie and my conversation.

I know Mackie will try harder next time.  I know that every time we practice he will feel more confident that he can do it.  He tries his best everyday living with the effects of Fetal Alcohol Syndrome and Autism and this traumatic beginning.

Thank you Disney for Finding Dory and Thank you to the Grantland Theater for the chance to finish the movie.   (Sunday June 19 at 7:00 pm) To the movie goers who joined us on our adventure,  I want to  Thank you for your patience and understanding while Mac watched Finding Dory!
From a very grateful Mom.


Sunday, June 19, 2016

Day 7 Happy Fathers Day to all the Amazing Fathers Making a Difference

Day 7

Today I am taking a break from writing and the blog post will be short.  Today is Fathers Day and I need to spend it with my children and my husband Jim (Doc) as I often refer to him.  Today is his day and he gets to spend it doing what he wants.  No chore list, no watching Little Mac.  He gets to spend his day as he wishes.

He comes home after long day of working helping people to relieve me from the 24/7 of Parenting Complex Children.  Taking his turn in hanging out with the girls and Mac and working his second job at helping Becca and the girls. We are partnering in helping our children.

Together we have and are raising our dozen children.  It has now been 37 years since he has been a dad, and  nearly 27 years of adding a Special Dad to the title and 19 years of being an Adoptive Dad children from the foster care system.

He is calm, patient, and when they have crossed the line, the kids have come to know that that "Dad" voice comes out and they stop and listen.  He is a amazing role model who have taught them well.

Happy Fathers Day to you Doc and Happy Fathers Day to all the Extraordinary Fathers who are making a difference in their Children's Lives!


Saturday, June 18, 2016

Day 6 A Giggle and Success With Emotional Regulation

Today's post inspired by last nights "Mackie's Moment".

Mackie's Moment

Mackie was in the room while I was watching the news. He saw Mr. Trump on TV and told me "That man is in the "Red Zone and he needs to go find some tools to get into the Green Zone!

Mackie is not only mastering reading his own zones of regulation, but seeing it in others!

Aha... There is an idea for Mom's Day 6 Writing Post on FASD and the Alphabet Soup of overlapping diagnoses!

Emotional Regulation 

I learned very early on that my kids with their FASD and the alphabet soup had emotional regulation problems.  My kids needed external support to keep them from  the highs of bouncing off the ceilings or the lows where they function as slow as snails.  I had to learn early on what works to get them moving and what tools were helpful in the process.  With five children from 5 to 15 with their FASD's and their alphabet soup and of course Miss Becca at 7 with her ADHD, autism and her own alphabet soup I had to do something!   I ended up being everyone's external brain and if I left the room for a minute, things could quickly spiral out of control and chaos ensued.

I found a good therapist  for both them and me who recommended us getting the younger kids into occupational therapy. At 7 and double 10,  Becca, Dee and Bean were exposed to the Alert Program and their How Does Your Engine Run.  We spent many weeks figuring out that spinning makes Becca hyper and off the charts wild.  While that if you spin her the opposite way she unwinds and her moods settle down.  Crunchy foods in the morning wake her up and Power sitting (a Mom learned trick) calms Bean and Detamara right down.  (Sitting Criss Cross Applesauce with your hands the legs with the pressure of your body down).  When I saw the things were spiraling out of control, Mom commanded "Power Sit" and they dropped wherever they were and we all calmed down.

I found that I had to teach and model emotional regulation.  I had to tell them what mood (zone) they were in. Red Zone, Yellow Zone, Green Zone and then see if they could identify which zone they were in.  Helping them connect the dots to what zone and what they could do to change it.  I had to learn to model the zones for them.  Teach by example.   "Mom is in the Red Zone (someone broke something), Breath Mom, in and out, in and out. It was an accident and no ones fault. Just clean it up and go take a break".  Soon I saw that the younger kids were learning from the lessons and they began to realize their own moods and were using the tools that we taught.  I was also becoming aware that my moods affected my children and try to come up with my own strategies to calm down to not stir the pot.

When we got Mac many years later , he was l7 months old.  He couldn't yet sit up and only a teeny tiny 13 pounds, but he could say simple words.  We realized by 21 months he was loosing his speech and I had already picked up on the sensory processing issues.  We knew he had partial Fetal alcohol syndrome.  For the most part he was a happy little guy, quiet, but his moods swung from an over stimulating sensory environment.

I worked with his PT therapist who agreed that he was somewhere on the autism spectrum and I needed to find a way for him to "tell" me that something was bothering him but also begin early to teach him to understand his zones.  Sometimes in FASD  and the Alphabet Soup of other diagnoses, the lack of emotional regulation is gets them into too much trouble.  So I knew I had to start early and I had learned the hard way that once they found their "own tools" to cope, it took ten times or more work to change it.

We started with modifying the Alert Program for a toddler.  Pooh Bear, Tigger and Eeyore. Pooh Bear (just right), Tigger (too high) and Eeyore (too low).  He learned them and could point and identify his emotions by the age of 2 with no speech which had left him at 21 months overnight.

When he was 4 he started in The Wisconsin Early Autism Project and I asked for help with one of the goals that I had for him. I wanted him to be able to tell the therapists his zones and identify tools.  He could do it for us, but would he do it for others.  He needed to generalize it to other environments.

He at the age of 6 he is proficient in his naming his zones, identifying them correctly in himself and regulating himself most of the times. We do have moments which he speed up from 1 to 100 in a couple of seconds, but with us prompting him or using a tool.  We can get him down quickly and back on the even keel.  We also speed him up when his body and processing is just not moving by using the tools we know help him "wake up".  Crawling, spinning, crunchy foods, hanging him upside down his the best one to flip his moods.

Mac has even asked for his sensory breaks at school and will head to his sensory box in his own spot for a time to put himself back together.  He has asked to be put in his medical stroller to have a break when he is getting tired.  He knows and he has learned to help us manage his regulation. He will just go sit and calm himself down with his blanket and iPad at the times when it gets "just" too much.  Asking for his headphones to block out the noise, wearing his sunglasses when it is just too bright.
He automatically uses his tools many times a day to keep regulated.

Mackie is mastering the  Alert Program and their How Does Your Engine Run Alert Program for Self Regulation and the Zones of Regulation.

They often say in FASD they can't learn.  They learn in different ways and times.  They can learn, but we have to begin early, use tools and programs, repetition, modeling, strategize many differing ways of teaching until it works and catch those early behaviors before they get stuck proactively. Early intervention and applying what I have learned from the others does work, and with the right supports and understanding our kids can have a better chance.  Mackie is proof!