Toni
Hager


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My Story
 By Toni Hager

          I have always been drawn to people with disabilities.  In eighth grade I wrote notes from the board for a partially sighted friend.  In eleventh, I the blind students at our school.  taught me Braille, how to use a white cane, and do many things without looking.  Their special teaching has stayed with me even today. 

My mom always said “God has a plan for you”!! Guess He did!!

         In April 1976, our daughter, Nadine was born eight weeks early.  Her birth weight was almost six pounds and 21 inches long, good thing she was early, she would have weighed ten pounds (ouch!).   Nadine didn’t breathe immediately, squeaked instead of cried, couldn’t suck, and had low muscle tone. She “looked different” and her left eyelid drooped.  The doctors nor nurses had any clue why Nadine couldn’t move her mouth, suck or cry; they basically sent her home at two weeks and said “good luck”.

Thanks guys, I’m 23 yrs old and a first time mom!

            Mothering Nadine wasn’t easy.  Feedings took forever, she didn’t turn to noises. There were no baby smiles or grins, she just laid there.  One day, while we were outside a car horn honk close by… there was no response of any kind.  At her doctor visit we were informed she couldn’t hear and told it was not uncommon for preemies. 

            Nadine’s development was behind in everything.  But, her face still “look different”, it looked like she was suppose to have a “cleft lip” but God changed his mind and there were NEVER any baby facial expressions… just a mask look.  I did learn how to get her to suck, swallow and even chew as time went by.    

            We were sent to 35 different doctors… genetics, chromosome specialist… trying to find some diagnosis—nothing.  At 18 months of age, we went to Loma Linda Medical School, in Southern California.  Within ten minutes they told us what she had  -- Moebius Syndrome.

           Moebius Syndrome is a very rare neurological disorder of missing or undeveloped cranial nerves.   There wasn’t much other information in the medical books, SO I would have to do my own research and searching.  OK FINE!

            Nadine went through EVERY possible type of therapy -- Infant Stimulation programs, 5 years of speech therapy, PT, OT, and 3 unsuccessful eye surgeries.  School was a nightmare.  She was in regular education class and then was pulled out for all the different therapies. She ended up out of class more than in class.  Speech therapy helped her in learning to read, but math and physically writing were like Greek to her.   

          Poor Nadine was given every label they could think of LD, ADD ( a new term in the ‘80s), developmentally delayed; everything but what she really was ... BRAIN-INJURED.

            In ’83, Roseanne, our new arrival was born with the same problems (I knew as soon as I saw her in the delivery room); only this time we were with a HMO with a lactation on staff.  He wouldn’t let me out of the place until he taught me the difference between bottle feeding (use cheeks) and breast feeding (use tongue and back neck muscles) and gag reflex.  Rosie’s right side of her face was paralyzed, she had TWO droopy eyelids and low muscle tone.

  Yet, Rosie’s birth was the answer for solutions to all of Nadine’s problems.  
(left- Rosie pre-neurodevelopment 
right - Rosie two years later)

            When Rosie’s specialist discovered Nadine also had Moebius, she was immediately enrolled into a Sensory Integration program.  Sensory Integration tackles problems neurologically not cognitively (PT, OT).  

            Nadine gained success in several areas but not all… there was still a missing piece. In ’84, I started home educating Nadine.  Public school had become a nightmare for her, she was extremely stressed and had no self-esteem.  

           The Pastor at our church,  was also the principal of a private school and he taught me about “hands-on” learning and gave me wonderful ideas. This was a perfect solution.  I did the academics and sensory integration activities at home.  We did this for years and years.  Nadine has spent her entire life doing some type of therapy.  Everything was going good until…

            At age 15, Nadine couldn’t walk without support and her feet didn’t lay flat anymore. She started having problems using her hands.  She went back to primary grasp (whole hand) and no pincher grasp.  She required metal leg braces to walk.

            Meanwhile I had  taught Rosie to hold her eyelids up to see.  I did it just to allow light into the pupil, since I didn't want her to go blind. At about 6 months she started holding the right one open to see.  Developmentally she was a bit behind normal but not much. Eye doctors were unable to know what or how she saw since her pupils didn’t dilate.  Even using the machines not enough light went into her pupil to get any reading.  So, we waited until age seven to start schooling with books. 

            Math was fine… but at age eleven she couldn’t read.  She could sing all the vowel songs but in print they were like Greek.  Hmmm.  Another challenge.

            Many people began recommending a professional knowledgeable in working with nuerodevelopment with special children like mine. I finally called her and she had already heard of my family and had been encouraged to contact us.  She explained about Neurodevelopment and some of the possible reasons why Rosie wasn’t reading.  It all made perfect sense.

            Rosie had a Neurodevelopment evaluation Spring of ’95.  I learned better ways to teach her to read and all academics.  Our evaluator explained how Rosie sees, explained how the nerves and muscles work (no eye doctor ever did that) and answered many other questions I had.  In three short months, Rosie was reading at a second grade level!! 

            Today, Rosie’s eyelids are more than half open, without surgery, they dilate to normal size, don’t turn out (strabismus), and tract/converge.  The weak side of her face has expression and the lip turns up slightly for a smile.

            Nadine had her first Neurodevelopmental evaluation on her 21st birthday two years ago.  She hasn’t worn the braces in a year and a half.  Today, her walk is almost perfect, she has foot reflexes (never before), is more coordinated, and for the first time can run and jump.  Her hands are much better but still need work.  She volunteers at our local VA Hospital.  The staff and guys love her, she’d be wonderful in patient relations or hospice.

            I was so impressed with the hope and future Neurodevelopment methodology gave my daughters. It became my personal quest to share it with others,  like you.

            In ’95, I returned to college to earn degrees in Applied & Developmental Psychology then went on for training and certification in Neurodevelopment and learning.  I am a Neurodevelopmental Specialist and founder of Children’s Academy for Neurodevelopment & Learning.  I do Neurodevelopment evaluations, develop in-home programs, and empower parents with the necessary training and expertise that enables you to assume primary responsibility for your child’s maximum growth, development and education.

            I sincerely hope this site and articles have answered your prayers and end your personal quest for solutions for your struggling child. 

If I can answer any questions or to schedule your appointment please contact me.

Blessings, Toni Hager

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Being the 'Best I Can Be'  learning to live with prenatal exposure brain damage.
Alcohol - meth - cocaine - heroin - marijuana exposure in the womb.

PARENTS NOTE: "Programs and activities are recommendations only and are not medical, therapeutic or psychological prescriptions. They are based on the experience of a Neurodevelopmentalist and represent suggestions to the family. Every parent needs to assume the responsibility for their own child and make their own decisions as to the techniques and methodologies to use with their child. "
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