Monday, August 26, 2013

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.

Sunday, August 25, 2013

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

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

Bruising and Bleeding
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
Nissen falling apart and food gets stuck on top of it
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
                   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