Loose Anagen Syndrom · Motherhood · Sensory Processing Disorders

Eliah- My Fire-Blazing Princess

Eliah’s spirited smile

(This post is an excerpt from my “spirit kiddos page”)

I love my kids and my husband.  I love that they all have incredible zest for life, especially our two-year old Eliah (Elli).   She was born with a fiery spirit that truly was a force to be reckoned with.  She also has a soft heart that is full of compassion and emotional understanding.  As a baby she seemed so aware of the people around her.  She wanted see and move and feel everything.   And then, around 10 days old, the crying started.  And it didn’t improve until she was able to crawl freely and move at around 6 months.  Those agonizing early months of trying to understand Elli’s intensity brought on much self doubt, shame, fear, frustration, exhaustion and loneliness.  It was during this time that I first stumbled across the word “spirited” as I read countless mothering books and blogs about babies who seem more aware, alert, active and sensitive.  These babies are also labeled high-demand, intense, colicky, fussy, etc.  I chose to think of her as spirited, for that is the truth stated in a much more positive way.  Trust me though, there were days when nothing but negative thoughts flowed thru me.  I blamed myself, “I worried too much in pregnancy”.  I blamed my husband, “He’s the active, ADHD one, these are his genetics!”.  And, unfortunately, I blamed God, “Why me? What did I do to deserve such a intense baby?”.  I realize now, 2 years later, God gifted me with the opportunity to raise a chosen vessel.  I think that with Elli’s strong willed nature she will be able to accomplish much in her life, if channeled correctly.  That thought is a daunting responsibility for a mother.  I know that I need to do all I can to help her see her “spirited” self as a blessing.

The main condition that we have been learning about and dealing with since Eliah’s birth is commonly known as a regulatory disorder or sensory processing disorder.  Some practitioner’s may even label it an autism spectrum disorder but she doesn’t really fit into that category.  Elli has been an outlier since the beginning.  Her birth was an excruciating 46 hour natural labor, water birth with a full dilation period lasting almost 12 hours (yep, no meds…crazy).  Somehow she survived and was born without issue.  She was silent for 10 days, and then she “woke up”.  Since has been “awake” ever since.  We noticed she was different from the get go.  She could lift her head and look around with ease as a new born.  Those wide open eyes noticed every movement, every person in the room.  She hated confinement in a car seat, stroller, or carrier.  She wanted to be bounced all day, all night.  And she wailed.  She had a pitch that could almost shatter glass; it did shatter my mind for several months.  She would get overstimulated and scream in any crowd-grocery stores, church, and even family gatherings.  She demanded to be held, nursed, bounced continuously.  She did smile though.  It was either full out screams or radiant laughter and joy with Elli.  There was no middle ground even as a babe.  The big change and clue that she had a special talent came around 6 months when she started crawling.  The cries decreased and her smile widened.  Then between 7-9months her walking started and her little spirit really started to show it’s nature.  She wanted to move! She needed to move!  Her sensory system needed kin-esthetic input to regulate.  And boy was she gifted in that arena.  It was dumbfounding to see a little 10 month old run circles around other 2 year olds.  She could jump several inches high by age 1.  She once hiked 2 miles without stopping up the side of a 4000 elevation gain hike at age 13 months.  However her system still could not fully regulate.  She would still scream at social gatherings, around men especially, and other places with too much stimulation.  She could not regulate her mood.  She was still an extremist with emotion- either happy or frustrated.  She was not able to self soothe with a toy for more than 30 seconds or so.  She demanded attention and trying to discipline really only added fuel to the fire because, as I understand now, she needed to have a sensory need met before her brain could process appropriate behavior output.  Her other issues.  She would lick or suck on anything.  She loved to smear her food in her hair, face, etc at every meal no matter what the consequence was.  She loved water though, it was like giving her a valium pill.  She would play and then become the most serene calm child afterwards. (We did a lot of water play for mommy sanity).

The good news is that things are getting more manageable as we are learning about sensory integration issues, regulatory disorders, and general autism spectrum disorders.  We are getting occupational therapy now and she is attending a co-op preschool.  The school has done wonders for Elli.  I have realized that Elli learns a lot by modeling other children’s behavior and she is learning about how to sit, how to play nicely, how to eat and how to have appropriate facial expressions just by watching other kids.  When I first became a mother I thought the idea of home schooling would be neat, but now after seeing Elli thrive in social settings with other children I am realizing that homeschooling may not be the best choice for her or myself.  The occupational therapist has helped us to realize how much of a visual learner Elli is and so we have made changes at home in how we communicate and explain things to her.  This has also been life changing.  It is helping her become more verbal and less frustrated because we are learning to “speak” her language.

The other issue is more of a cosmetic issue.  It’s called Loose Anagen Syndrome, a rare hair disorder that affects about 1-2 in 1 million girls, usually blondes.  It usually affects girls ages 2-9. It’s a hair shaft defect that causes the hair follicle to be malformed and also stunts the hair from growing beyond the neck line.  The hair is unruly and cannot tolerate any clips or bands because it will fall out with the slightest tug.  Most of the time the child’s hair will start to change by puberty once hormones set in.  Often it’s a sad experience for little girls with this condition because they are unable to have normal hair.  Often these girls will wear wigs.  It is my hope that I can help Eliah feel confident in her short, pixie hair style enough to believe that being a pretty girl doesn’t mean you have to have long hair.  Maybe I’ll even cut my hair short as well just to help her believe that.  Until then, I will have the opportunity to try and teach her to find a sense of esteem that is separate from physical features, in hopes that her hair will not be the deciding factor as to whether or not she feels beautiful.  She is beautiful.  She has the most gorgeous eyes and radiant smile.

Overall Eliah is an amazing child.  She has so many brilliant attributes that will serve her well in her life.  She also has challenges that she will have to learn to overcome and channel in a positive direction.  I have hope that great things are in store for both Eliah and James and that their spirited nature will be a blessing in their lives as well as those they are surrounded by.


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