Small headed

                                                  Small headed

My name is Lexi O'Malley aka Sexi Lexi my friends say I am not a big shot not the type to have a big head and I am here to tell my story and teach more about my condition. When I was a few months old my right hand started to shake, my mom said it looked like I had Parkinson’s Disease.  My feet were toed in and I was very stiff.  She said she knew there was something wrong but no one else believed it.  The top doctors at Columbia Children’s Hospital in NC said I was a healthy, alert, age appropriate baby.  That I would outgrow my feet turning in when I started to walk…well that never happened.  At 8 months old we went to a neurologist in Westchester we lived in Rockland County then who said I had a neurological disorder.  He also said I had microcephaly and was high muscle tone.  Most said I had cerebral palsy but he thought it was an umbrella term and wanted to find out exactly what I had.  Every week they took blood and would tell me another terrible disease they thought I had.  Finally when I was a few years old they did an MRI and discovered I had a rare neurological disorder called closed lip schizenchepaly.  It means the clefts in my skull did not close all the way..  They were small and bilateral and they told me I should be alright.  Each doctor told me a different age I would walk, they all said I would but I never did.  They would dangle a carrot in front of my parents with each surgery they suggested.  Muscle transfer with a body cast for months in a reclining wheelchair left me with a hole in my spine. Hip surgery,, leg casts on leg casts off, Botox injections, alcohol blocks but still I never walked. 

I am unable to walk, use my right hand or talk.  All the doctors said I would do everything.  What they were wrong about is microcephaly and low IQ.  They seemed to think I would never be able to learn anything, especially new concepts. I am in college, on the Dean’s List, Honor Society for Psychology and in the 90% for abstract concepts on IQ tests.

I am never sick (knock on wood) and only go to the doctor 1x year for my check up.  I go to prompt therapy for speech and am able to make some words.  I should go back for physical and occupational therapy since I stopped when I graduated from High School.

Emotionally I am happy most of the time.  I am lucky because my mom always believed and fought for me.  I was discriminated against in High School by the administration who thought I would never pass state exams or go to college.  I think they just didn’t want to be bothered figuring out the proper accommodations. Finally in 11^th grade they wanted to to go to a vocational school even though I was only 18 and had until 21 to graduate.  I left that school and all my friends in my senior year to go to a school for the physically disabled.  I got all 90’s and 100’s passed not just 6 state exams for 7 and got 1 wrong on the English regent multiple choice.  I graduated became student of the year for all Nassau County and my old school that threw me out, gave up on me brought we dozens of roses. 

People see me in a wheelchair and look so sad.  They always stare and my mom says “take a picture, it lasts longer”. They don’t talk to me or if they do they talk in a low, slow, baby tone.  Pity and sadness from others is the hardest.  Being non verbal separates me even from my disabled peers.  I worry about my future more than I think the non disabled.  I feel discrimination on a daily basis, whether it be physical obstacles or from people.

My condition has not gotten worse but the predictions the therapists told me when I was young and didn’t believe did come true.  I need constant assistance with most everyday life chores..

I have done what nobody thought possible with Kids of Courage though for example they took me jet skiing . I have Made friends who consistently have my back and I love like family. Thank you KOC and I hope I taught you something throughout my writing.