Spirit Kiddo’s

Big Sis and Little Buddy-June 2013

My Spirited Daughter

ELIAH’S BIO:

Eliah “Elli” 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’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.  Until then 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.

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.

JAMES’S BIO:

James sitting independently at 5 months old

I love having a daughter and a son.  It has been a unique experience with each of them, but James is my little buddy.  He has always had the most enthusiastic facial expressions and gives me the biggest smile in the world every time I look into his eyes.  Of course there has been a catch to that extreme happiness of emotion.  Just like his big sis, James had intense colic for the first 3 months of his life coupled with significant reflux and swallowing/eating issues.  The difference between James and Eliah was that his crying seemed to be more related to pain than to emotional and sensory over-stimulation, however his ability to sleep has been much worse than with Elli.  Because of the sleep deprivation, crying, feeding issues and stress I unfortunately went through a period of significant postpartum anxiety and insomnia with James.  I had similar issues with Elli but the mental effects were not as extreme or scary.  I think I was just so overwhelmed with “another screaming baby” and I was so scared I couldn’t handle being a good mom to Elli by helping her with her issues as well as being able to help my newborn handle his issues.  Fortunately my husband quickly recognized I was crashing and he really stepped in to help with the mothering role of these two kids.  James and Elli are so lucky to have a father that was willing to sacrifice so much of his sleep and work for them.  We are all doing better now but it was a rocky start.  We had a lot to learn to help James learn to eat- included clipping the skin under his tongue at 2 months old so he could swallow, as well as finding medication and natural remedies to help with reflux and colic.  One thing I knew for sure right away though, and that was James was most definitely as “spirited” child as well.

James was born with those familiar wide open eyes that we saw with Elli and incredible head/trunk control.  He was so active he rolled from belly to back by 6 weeks and back to belly between 8-10 weeks.  He was fully independently rolling around the house by 12 weeks.  He was already beating Elli’s amazing mobility records.  By 5 months he could sit independently and 2 weeks later he started crawling! Yes, before he was even 6 months old.  That’s where we are at now.  James will turn 6 months next week.  He is one big muscle baby.  His nickname is “Dynamo”!  I can’t imagine what he will do this month.  I’ve read the Guiness world book of records states the earliest independent walker at 6 months.  We’ll see what James can do…

So the question is lurking in my head, “Will James have the right-brain dominance like Elli that can result in regulatory disorders?”  The early mobility is really amazing to see, however it really scares me as well because I know what may lie ahead for all of us.  The good news is that I’m learning so much about what helps Elli, which will only better prepare me to help James as well.  I will be able to recognize the signs earlier and act accordingly.  The great thing about Elli is that her energy and active nature is so entertaining to James that I hardly have to do much to entertain him myself, which is much easier that it was with Elli when it was just me at home with her all day.

James and Elli are truly meant to be siblings.  They are going to do many great things together because they both have a similar nature; as Dr. Seuss says  “Oh the places they’ll go”….

Elli (2y.o) and James (3 months)

4 thoughts on “Spirit Kiddo’s

  1. I just started reading your blog and I’m amazed at who you are. I’m amazed at the extraordinary children that you’ve been sent to nurture in love. You and Mike are so devoted. And I am sure that it is your will, your intelligence, your commitment, your tenacity and your love has made you worthy to receive these 2 extraordinary children. I cannot wait to see who your kids become as they respond to your love and nurturing.

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    1. Thank you Tracey. I appreciate your comments and interest! It has been a tough ride for us, but as they always say, it’s life’s hardest challenges that give that can bring the best moments of joy as well. I sure hope you are doing well also. We missed hearing from you the other night at our relief society activity. Hope you are feeling better!

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  2. Wow…your daughter sounds exactly like my son. Except for the fussy baby part. His melt downs started around a year and he has also been diagnosed with Lyme. He has sensory issues and is just considered too social to be on the spectrum. With Lyme treatment and lots of therapy he is doing really, really well. I would love to stay in touch and compare notes and info if you are willing.

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    1. what have you done for treatment for LYme? We did 2 months of amoxicillian and she was doing great but now she is really bad again and I think it screwed up her gut, she has some malabsorption issues and is really tired alot. I’m getting her tested for SIBO (gut bacteria imbalance).

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