The Face of Fetal Alcohol Syndrome. The Innocent Victim.

This is McKellan. He has Fetal Alcohol Syndrome. He is an Innocent Victim of Prenatal Alcohol Exposure.

Today is National Fetal Alcohol Syndrome Awareness Day. In many places around the country bells will ring at 9:09 am. This day was chosen for the 9th month, the 9th day, and the hour of the bells 9:09 to represent the length of pregnancy. Please do not drink when your pregnant.. You will save your child a LIFETIME of struggling and hardship!

Mackie's Ringing The Bells for FASD Awareness 9-9-13

McKellan has Fetal Alcohol Syndrome.

He was one of in 40,000 who was born with Fetal Alcohol
Syndrome in the United States each year.

The estimated lifetime cost for someone born the FAS will exceed
$2 million dollars.

Mackie is an Innocent Victim of Prenatal Alcohol Exposure.

Zero For Nine Months

For More About FASD Read: The Innocents, FASD, Victims

My Facebook Favorite and I Designed My Shirt

I found this picture on Facebook and it is so true.  Parents who have complex kids have to do their searching for answers. It is just part of the job description.  Parents with Special Needs kids know their childrens needs. As the internet has opened the doors, parents are becoming the experts in their  children's disorders. The online support forums are full of knowledge and interventions and we share our children's lessons that others may find answers. Google scholar, search engines, we read, we research and we learn to read medical jargon.

Order Here

Tonight I searched out a site for designing my own t-shirt or sweatshirt. I will wear it with pride.

The ABC's of Living with My Noonan Syndrome by Becca Yurcek

The ABC's of Living with My Noonan Syndrome

by Becca Yurcek

Anxiety
Bruising and Bleeding
Contractures
Drinking--- It hurts and I choke and Dr. Sheirlie lectures me.
Eating and Esophagus-- It hurts and it gets stuck.
Failing-- Schools and some Doctors don't get it.
Gagging-- gagging and wretching that hurts my chest and ribs
Heart Racing and Headaches-- which I wish would go away
Intense Pain
Joint Pain
Keeping Weight Up Challenge
Lymphedema Is painful and keeps me sitting my feet up
Migraines
Nissen falling apart and food gets stuck on top of it
Osteoporosis
Pain
Questions no one can answer
Respiratory issues Sleeping-- too much or have trouble sleeping
Teeth I wish I could smile because my teeth are so awlful
Ultrasound on my elbows and hip.
Vitamins for my anemia, folate, Vitamin B12, C and D deficiencies.
Walking I can't, I need my chair
Xanax for my anxiety
Yo Yo, the ups and downs of my days
Zofran for my nausea and wretching. My favorite Medicine.

Copyright 8-22-2013

The ABC's of School With Noonan Syndrome

                   The ABC's of School With Noonan Syndrome
                   By Becca Yurcek

                   Advocate and Attention Problems
                   Behavior = Language
                   Caring Teachers and Friends
                   Dyslexia and Dysgraphia
                   Expressive Language and Executive Function Deficits
                   Fatigue and Fine Motor Problems
                   Gym Class Needs Modification
                   Hypotonia and Hyperacusis
                   IEP and Illness
                   Just Want To Be Included
                   Kids Learn Differently
                   Learning Disorders and Limit Writing
                   Modified Assignments and Maturity Delays
                   Not Going = Not Meeting The Needs
                   Overstimulating Environments
                   Pain Interferes with Learning
                   Questions Answered Verbally
                   Resiliency, Rest and Repetition
                   Social Skills, Scribe and Shut Down
                   Technology and Talents
                   Understanding
                   Victim of Bullying Too Often
                   Writing is Difficult
                   Xtraordinary and Xtra Time
                   Yo Yo Ups and Downs of Living with NS
                   Zero Teasing

                   copyright 8-25-2013

 If a child does not learn the way you teach, 

teach them the way they learn. 

 

                                          

                              Advocate, Adjust, Encourage 

                           Educate About Noonan Syndrome

Ring Around the Medical System

These past couple of years, I have been playing Ring-A-Round the Medical Beaucrasy.  No matter how hard I try I still keep running in circles. As families we are trying to make sure that we do what we are supposed to do to manage our childrens/adults with disabilites care.  I document, fight, and think I have it problem solved only to find it wasn't fixed or another roadblock happens.

I decided to write my frustrations and document my journey to get Becca help.

Becca told us it hurts to eat and "things" are getting stuck behind her sternum in her esophagus.

1. Becca says it hurts to eat and things are getting stuck in her esophagus and its sitting on top of her Nissen fundoplication.
2. I take her to her primary care doctor who puts in a referral for a GI doctor.
3. Called several in network GI providers. 
4. Checked on a Pediatric GI due to Becca's stature.  Denied to see because she is over l8.
5. Referral to out of network provider. The Doctors office put in a Prior Authorization for Out of Network Referral
6. Insurance company denied Out of Network GI Doctor.
7. Appealed insurance company denial.
8. Insurance company approved.
9. The Out of Network GI triage  called said they will decide if they want to see her. They will let me know in 3 to 4 weeks.
10. Out of Network GI triage said they did not feel she needed to be seen. She does not have a GI History is their reasoning. (Becca saw GI for 16 years and had a GI, 2 GI surgeries etc. and l7 years of a gastrostomy tube).
11. Insurance company Out of Network authorization ran out.
12. Reapplied for Prior Authorization Out of Network appointment.
13. Resubmitted information to Out of Network GI.
14. Insurance company denied the Prior Authorization.
15. Wrote a letter and got the insurance company Case Manager involved.
16. Got approval from insurance company to see Out of Network GI.
17. Got a phone call that Becca was scheduled for a scope the next week (without seeing the doctor?)
18. Called the GI office and asked if it is normal to not see the doctor before a procedure.
19. They explained that the Doctor felt this is what needed to be done and they don't always see the 
20. patient first.  I explained that Becca has complex needs including heart problems and  bleeding  disorders and they need to plan to do anything. They haven't even talked to her or us about the problem.
21. The Office called to say they needed proof that our insurance company approved the out of network.
22. Faxed the out of network approval out.
23. Called to double check so can make the appointment.
24. Had to resubmit to see the doctor at the GI triage
25. GI triage had to talk to Becca's primary care provider to see if she still needed to be seen as it was over a year ago.
26. Primary Care Doctor's office resubmitted paperwork
27. Triage Called and scheduled the appointment
28. Called the Health Insurance Company Case Manager to see if the referral is still good. 
29. Resubmit the changed Out of Network Prior Authorization date.
30. Got the Prior Authorization Approval Letter and called to make an appointment with GI triage.
31. Waited 2 weeks for returned call and got an appointment.
32. Got a phone call from reimbursement and had to fax in the Insurance Company approval.
33. Drove in for the appointment 2.5 hours from home. Arrived to find out they had called to move the appointment an hour up and we were now late. (I was already gone when they moved it up). They saw us during the lunch hour and the Doctor kept using foul language.
34. Doctor says she needs a GI scope and needed pre-surgery physical. GI ordered a swallow study.
35. Took Becca to see her Primary Care Doctor for physical and gave them the order for the swallow study.
36. Doctor made recommendations based on bleeding information from her Hematologist in MI.
37. Doctor arranged the swallow study and we got it done.
38. Scheduling called and said that I needed to go to our In-network Hospital for the treatment via IV for the procedure and then be admitted to the other hospital for the scope. I asked why they couldn't just bill Medicaid for the medications etc. They said that if she had Medicaid only they would have to take the Medicaid reimbursement, but not if we had insurance they wouldn't.
    Coordinating two hospitals for the procedure with 1 hour administration of IV antibiotics and platelet transfusions was not feasible
39. Doctor called up to the GI to give recommendations on why you cannot go back her stomach as her risk of duodenal hematoma because of her platelet defect. The doctor refused to admit her overnight per recommendations.
40. Met with Primary Care for Becca's monthly visit and we fired the Out of Network GI.
41. Asked Becca's Adult Congenital Cardiologist in another major hospital system about who should see her.
42. Took recommendations to her primary care doctor. Put in the referral to the Pediatric GI.
43. Put in the Out of Network Prior Authorization for the Pediatric GI.
44. The insurance company miraculously approved it.
45. Put in a referral for the Hematologist who was recommended by Becca's Cardiologist. Saying that Becca needed a medical home with specialists who were in the same system to coordinate her complexities.
46. Submitted the Hematology Referral.  Prior Authorization for an Out of Network Approval to insurance
47. Pediatric GI would not see her due to her age and scheduled her with an Adult GI.
48. Doctors office put in another Out of Network Prior Authorization for the GI in a different department in the major hospital.
49. Insurance company now denied the Prior Authorization.
50. Called the Insurance Company Case Manager but Becca's worker had retired. Had to fill her in on all the troubles we were having with insurance. Told to resubmit and attach the old approval with a letter and the documents on why she needs this.
51. Prior Authorization was approved.
52. Primary Care Clinic called to say it was approved and they made the appointment.
53. Becca finally saw the Adult GI. He ordered us to come back for an Upper GI.
54. Called the clinic to put in a referral and pull the paperwork for the Out of Network Upper GI.
55. Insurance company denied. But with having the denial, the Out of Network Hospital took the Medicaid payment.
56. Test was done.
57. GI Nurse Practioner called to say they found that Becca has a Paraesophageal Hernia and they need to Scope her. But not until she is given clearance from Cardiology and Hematology with their recommendations for treatment.
58. Resubmitted for the Hematology Prior Authorization at the the GI and Becca's heart doctors hospital. 
59. Insurance company denied the Out of Network Hematology consult. Saying she can see in network people. But the hospitals in their network cannot manage her care.
60. Called the Hematologist who the insurance company wanted her to see. His office told us that he was not wanting to continue as her physician as Becca wanted a female.
61. Asked for an Out of Network Referral to the Recommended by her Cardiologist in the same hospital system as the current GI.
62. Clinic put in a Prior Authorization to the insurance company for the Out of Network Hematologist.
63. Insurance Company Denied.
64. Put in an Out of Network Referral to a Out of Network Hematologist who saw Becca 1 time and never let us go back.
65. Insurance Company Denied.
66. Appealed, Denied until I see every Hematologist in the In Network system. Told to go back to the assigned in network Hematologist who did not feel comfortable seeing her.
67. Made an appointment to the First In-Network Hematologist, who was not comfortable with Becca. Argued with him about Becca's bleeding disorder. He says she has "Normal numbers of Platelets" and nothing should be a problem. I handed him the records from the Out of Network Specialists recommendations and her prior Hematologists. Explained that her Platelets do not work and he told me I was wrong. I asked for him to arrange a second opinion and left in tears while Becca made the appointment.
68. Saw the New In-Network Hematologist who got a stack of Hematology records. She had begun to talk about the First In-Network Hematologists recommendation.  I showed her the Platelet Studies from the UW of Michigan before we moved. She then said she was not sure she could handle our daughter's case but wanted to talk with some of her collegues from her training at the UW (Where Becca went once) about bleeding findings in Noonan Syndrome.
69. Waited 6 weeks and then called back to find out if the Doctor was going to be Becca's doctor or not.
70. Doctor called a week later and said that the colleague wanted more testing.
71. Took Becca for more testing.
72. Got the results from Becca's Primary Care Provider which now adds 3 abnormal clotting factors.
73. Called the Hematologist to see if she wants to see Becca or go over the results and whether she wants to be Becca's Hematologist.
74. Still no returned phone call to Mom.
75. Talked to Primary Care to find out what to do with Hematology at an appointment for Becca.
76. Primary Care Provider called and talked to the Hematologist who says that Becca will need Fresh Frozen Plasma, Clotting Factors, DDAVP, Platelets for the procedure and then Amicar every 4 to 6 hours for several days following.
77. Put in a new Prior Authorization for an Out of Network Referral for GI.
78. Put in a Prior Authorization for the Out of Network Referral with the insurance company.
79. Insurance Company Denied.
80. Put in a new Prior Authorization for the Scope.
81. Put in the Insurance Company Prior Authorization for Out of Network
82. Waiting.
83. Received a call from the Hospital GI lab and said that they were reviewing the Hematology notes and will call when they get it all coordinated.
84. Week later received a call from the Hospital GI lab scheduling saying that they will be following the recommendations of Dr. A......  the GI who was fired.  They had been faxed the new Hematologists name and it is in the Epic medical on line system with her hematological diagnoses.   I explained that we fired the doctor and what I was told. Reading her the notes that Becca's primary care doctor had told me would be necessary.
85. The GI Nurse Practioner called and they tell me that they need me to get the New Out of their network Hematologist to fax up the cover page, the detailed recommendations, the diagnoses and all her chart notes from Hematology. I asked just from the second or the records from our two prior hemologists.  All of it.
86. Then she tells me that they will decide at that time whether they will do the scope because she does not have a hematologist in their network.
87. This Mom has had enough, and cries.
88. Becca's primary care provider a family friend called tonight and I explained.
89. Tomorrow we call Hematologists office to get them to fax in the required paperwork.
90. Then wait.
91. Becca's Dad's clinic was bought out, on 10-1 we get a new insurance company and start all over with who they see, and learn a new process and hopefully it is better than our managed care insurance company.
92.  To Be Continued ?????
93. After 3.5 years of us arguing with Miss Becca to get her to eat despite the pain maybe they will finally get to someone to figure out what to do to help her pain with eating and her esophageal hernia.  

See It, Write It, Remember It. TEXTING TO SUCCESS with FASD

With my kids with organic brain damage from their prenatal exposures along with all the other alphabet soup of diagnoses, I have learned that they learn better by seeing what they need to do. 

Many of our kids can have normal IQ's and can handle more concrete learning information.  Often they do well early in their school years on when the information is presented in a CONCRETE easily understood format.

God gave me the gift of understanding that my children use visual memory much better than any other medium of getting things to stick. They can remember vividly what someone was wearing, what they did, and all sorts of information from an event. But cannot remember some of the simplest other things.

Think in the terms of a camera. They can capture the images they see, but they can't see themselves so they never know what they did.  (Another blog post for another day).  But what that taught me was to help them see just like they now are teaching in autism with picture prompts etc.  I used simple notes, cannot be too complex or they shut down and are overwhelmed.  Short and sweet, concrete and to the point.

For years I have been teaching teachers, principals and anyone who works with my kids if they want them to remember something they need to TALK LESS and use a simple bullet reflection system to help them see and retain the information into their memory.  Talking to my kids the message becomes jumbled and often lost in translation as it processes through their damaged brains.

My house became a series of notes put up as reminders. There were times even though still needed the kids removed them as they didn't want to be treated differently or have their friends see anything that will get them noticed for being a different.



Often kids/adults with FASD have auditory processing disorders. But in our world and society we talk too much. When I talk to my kids with FASD I have to talk simply, with three or four words with a slight pause which allows their brains time to process the information that I give them.  Then double check for understanding.


If I wanted my child to bring me or put something away right I would use a post it note reminder. Go get me french fries from the freezer.  I had to do something as too many times they got to the freezer and brought in corn instead of peas. or whatever and it ended it in my frustration and their feeling bad that they got it wrong.

I know that my adult kids can remember what they receive via text message, what took me so long to get on the text to remember kick?

Becca and Dee have been texting each other room to room. They were texting in the same room the other day. I wondered why?  Becca figured out Dee understood instructions better texted than communicated. It took Becca with her Autism and understanding of not hearing what is being said in a room full of too much noise for her to know what to do to help Dee understand instructions.

I was talking with a friend lately and talking about we talk to much. She has been emailing her daughter with discussions instead of deep conversations and they seemed to make a difference in her understanding and her remembering.

LIGHTBULB moment:  With our teens and young adults we need to use their mediums to help them.

I just tried an experiment. I texted Dee up in her room and asked her if she could please make Mac a bottle.  I received a reply, I am all the way up here!  I texted back that I was writing and I would really appreciate her helping me. Okaaaay.

 Normally anything you tell Dee needs many steps going like this.
1. Ask her to do a simple chore.
2. Wait 3-5 minutes to see if it processes and is understood by asking the question again.
3. Now wait 3-5 minutes to see if she responds.
4. Carefully prompt her again if not moving.
5. Double check for understanding.

To make the said bottle would require me to have 15 to20 minutes of intervention. Not because she is being oppositional like so many would think. It was just because it would take that much intervention and complex processing for her to be able to hear it, transition, and get moving.

The bottle arrived in less than 5 minutes.

Want something done, want them to remember, quit talking so much and put it in writing.

TEXT to SUCCESS.  But first sign up for UNLIMITED TEXTING.