LOVE means you will NEVER stop trying

When my daughter  was a little over 2 years old, my younger sister – a (then) Special Education student at ISU, urged me to use the state services available through SEDOL (Special Education Dist. – of Lake County) for an evaluation of her developmental progress.

Mia wouldn’t call me “Mommy” or respond to her name being called.  Her hearing was to be tested, but the procedure frightened her & could not be completed.  I sat through many sessions and a 3 hour “play-time” evaluation. I watched as they (a team of therapists) assessed her abilities to: build a tower of blocks, discriminate shapes and textures, follow instruction, be attentive to what they were asking her to demonstrate or mimic, and many other “tests”.  They saw some “abnormalities”, and discussed the possibility of Mia having some SPD symptoms.

SPD is widely misunderstood and sometimes even mis-represented in the main-stream media (thanks Oprah).  To be fair (to Oprah), Sensory Processing Disorder or Sensory Integration Disorder is, like Autism, a spectrum disorder.  The way it can impact a child and how the “symptoms” or “signs” of the disorder manifest is different for each child, and is based on many variables; age, genetics, hypo-sensitivity, hyper-sensitivity, the list goes on….  The major indication is that the brain is perceiving stimulus correctly, but integrating it “incorrectly”.  An example would be, for Mia, hyper-sensitivity in the hands and scalp, this was portrayed as her pulling her hand from mine when crossing the street, or becoming upset as I would try to demonstrate, by manipulating her fingers & hand into proper form to grasp a crayon, for coloring or writing.  She would pull away as if I was hurting her, she “felt” it the same way a non-“afflicted” person would, but she interpreted it as very uncomfortable, even painful.

The Occupational Therapist recommended a book I could find at the library that was considered to be the greatest source of information on the varying combinations of this disorder.  I did as much research as I could, mostly with books, but very few are out there regarding this “condition”.  Information exists on the web, but it’s not concrete enough for me (most of the time).  The source has to be somewhat verifiable.  As a Mom, I was terrified.  My little girl was soo sweet and cute, but we could not communicate.  Most importantly, she was unable to communicate her needs to me, and would become frustrated and thus unhappy (and desires/needs unfulfilled).  You can only play the guessing game for so long…”Do you want this? (point to something)”.  So it’s safe to say we were both frustrated!!

Don’t get me wrong, these were not daily struggles of misery, for either one of us. We played, laughed, showed affection (though not much & only in the way she was comfortable giving & receiving it), she loved Elmo & the ABC’s, at a glance she was a normal, healthy, happy kid – and really what more can you ask for?  Physically, she appeared “normal”, but when you would grasp her hand, she’d quickly pull away – it was very common to have her want to play and interact, but she become very “odd” when given affection; as in a kiss on the head – or brushing her hair.  To me, it seemed she was saying “come be with me & play and have fun, but don’t touch me”.  I was concerned, confused, and a new Mom after a surprise pregnancy – I found out I was pregnant 39 days after saying “I do”.

The pregnancy itself was a struggle, I was vomiting daily throughout the almost 9 months (she decided to come early – didn’t want to be a Virgo like Daddy is my guess).  I was already considered to be “high-risk” due to mental illness, past hospitalizations and medication used to treat my disorder.  I was urged by my Psychiatrist to go off all my medications and only take Zoloft.  Which I had never been on, and was only taking a small dosage.  Having known I was bi-polar, among other labels created by the AMA, since age 15, as well as having a terribly strong family history of mental illness and substance abuse – I felt my greatest asset would be knowledge.  I educated myself by reading books, keeping mood journals, identifying when I was cycling – becoming more self-aware and less of a “guinea pig”.  It is how I am able to understand, manage & cope with my daily inter-personal struggles.  So, naturally I applied this same thought-process to the developmental delays & measurements of progress in her counseling sessions.

I watched attentively – 3 times a week – while she interacted with an Occupational Therapist (TY Kristen!), Developmental Therapist (TY Nancy!), & last, but certainly not least, a Speech Therapist (TY Dori! @ Pediatric Interactions).  These were state offered services through SEDOL and called the Early Intervention program (EI).  This program would last until age 3, when she would then enter the district’s public school system, which have Special Education classes as well.

Being a Leo, born on 8/18/2005, amidst the disaster of Hurricane Katrina, (we live in suburbs of Chicago – so no we were not in LA when it hit), she will always be one of the younger kids in the class.  Strangely enough, or maybe making perfect sense, I am a Libra, born in October, and was able to enter Kindergarten at age 4 instead of waiting a full year to already be 5 when the school year started.  So I was always younger than my classmates, but never felt inferior, or out of place…in fact, I barely ever felt challenged – intellectually.

I  know for a fact that she feels this to an expotent I can hardly imagine – she has inherited the best of me and hopefully of her father as well.  She deserves this distinction, as well as many more than I was able to achieve, and I am 34 years old.  She is merely 6 years of age, and has forced me to be even a greater a human being, a mother than I could have ever imagined I ever could be.  She gave me the strength, forced me to find & develop the courage inside, that I only ever could dream about.  Eternally the cowardly lion of the story of OZ and Dorothy, a small town girl with aspirations beyond her imaginations – and only through the fruition of these was she able to perceive and conceive herself as such a formidable heroine.

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