The musings and rants of Julie Marie Miller, Special Needs Specialist, Parenting Expert & Mental Health Caregiver
  • Julie Marie Miller

Nine months

Nine months ago I was hit with the profound acknowledgement that my son was going to graduate at age 20. Yes, we held him back in kindergarten not because he wasn't the brightest boy you'll meet; because he was advanced in so many ways that a teacher decided his God given gifts and talents should be highlighted. This created a circus like forum for my son to experience bullying. My beautiful, bright 5 year old boy whose skills were so advanced physically - fine motor, gross motor, insight and intellect - was featured “to inspire other students,” with half a wall of his artwork for all to see as they waited in line for their lunch. The subsequent teasing, torturous for him, amidst accolades from staff only stopped when I attempted to explain to his kindergarten teacher that I would be dis-enrolling him from the school after an 8th grader threatened him physically in the unsupervised, shared boy's bathroom. I also offered to her, in the future, that the fact that my son exceeded benchmark expectations for 5 1/2 year olds to draw two eyes and a mouth to represent a face-while my son's art included eyebrows, freckles, ears, hair and a neck with shoulders - is what ostracized him. That using my son as an example of gifted created extreme isolation for him, so he became home-schooled to receive a SARB letter three days after his sixth birthday. I knew he was slated to graduate at 19, not 20.

These advance, “G.A.T.E.” skills remain with him and so does his learning disability. In May, 2018, as he lost access to his work permit privileges due to a 1.0 GPA, after years of rejection letters to performance arts schools despite his recognized talents, I made the decision to end this madness called public school.

IEPs, CDE and OCR complaints recorded and documented, an abundance of apologies from school board members resulting in a summer spent in a psychologist's office to conduct a district funded ERMHS IEE to formally diagnose Autism and educationally induced Anxiety. The culmination of years of brilliance and struggle right there in 34 pages of black ink on white paper. 11 years of fortitude and diligence is what lead to publicly funded private school, 49 miles away from our home within the district of residence to finish with three months of HHI for acute anxiety - home tutoring 24/7 at home with his struggling sister and overwrought mom...

49 miles equals four and a half hours a day in my car. Two and a quarter hours singing along with my boy interrupted only by wise-beyond-his-years profound thoughts, to return to “Ain't no mountain high enough...” and “can't smile without you...” Although he only started on January 14th, this tedious task requiring 5:30 am alarms has been a gift - the gift of time with my soon to be 17 year old son, a Sophomore in the best private school the district's money can buy. Time is my most valuable asset. Time is money, and we're rich in one area, lacking in the latter...

Desperate number crunching of costs combined with time off work, as I call in my third leave of absence in a six month period... IHSS, denied. SSI, denied. SDRC, approved four hours A YEAR of respite care but there are no respite workers in north county. On a recent Monday afternoon, sister in tow as she's still on active suicide watch, I observe my son interview with yet another disability benefits provider in his confident, well spoken, calm, cool and collected manner and know, just know, the next rejection letter will arrive in 4-6 weeks, and I state as much as I turn the ignition in my car. I say, “Lucas, why can't you just drool a little. Sit with a slouch and don't maintain eye contact. Hell, throw something,” to which he responds, hiding none of his disdain or disapproval of my requests, “mom. Are you serious? That is lying. I can't even believe you would say that. You're ridiculous. And it's the school district's responsibility to get me to school anyway...”

He was right. He's always profoundly right.

And then the letter came in the mail. I assumed it would go into the pile of rejection and denial letters, but wait... “conditionally eligible for services,” is what I am reading. I read it again - “ELIGIBLE.” His disability acknowledged right on this paper. Right in front of my eyes. They believe me. They believe him. We did it. I got it. Right there in black and white they acknowledge his disability despite his grace and obvious talents. They get him. They SEE him. All the beautiful, confusing things about his hidden learning deficit.

I cried, sobbed, for 20 minutes. Something finally went right. I achieved something for my boy. Not just someTHING but his future is right on track. And, only in hindsight, I acknowledge that my tears were a combination of relief that my job here is complete with 9 months of hard work paying off, mixed with emotions of loss of valuable time spent on the journey to his independence and freedom. A mixed bag of 11 years victory and loss came pouring not just from my tear ducts but my soul. To be seen, to be heard, to be acknowledged all because my boy is only capable of telling the truth as he embraces all the beautiful, confusing things about Lucas.

The most common thing I find myself stating when consulting other special needs parents is, "our kids are 1.9% of the population [struggling with hidden disabilities] but they are 100% of our world."

I have a fire in my soul, burning to alleviate the burden of the caregivers; please help me form a nonprofit to become the person that my children believe I am.

Acronym references can be found in my online support group.

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