Unknowingly, I spent my entire adult life preparing for my son. Throughout college and my first career I worked with children and adults with disabilities. I earned a master's degree in education, and taught for five years. When he was born so early, so inconceivably small we knew there was a possibility he would have issues. But he was strong, he was healthy, and we knew we could take whatever came our way.
Danny's diagnoses unpeeled like an onion his first year of life. Danny was diagnosed with spastic, quadriplegic cerebral palsy, septo-optic dysplasia, and cortical vision impairment. Just as we would get used to one diagnosis, we would get hit with another at the next appointment. As we prepared for his feeding tube surgery when he was 15-months, I finally broke. I wept for the life I thought we would have, I was tormented by the unknowns of the future, and I struggled to accept the reality that my life was never going to be the one I imagined. There were a million questions, a million versions of Danny's future, and I wallowed. Mightily. For about five minutes. And I stopped.
There is not a life lived that could have prepared me more for Danny. I have known, worked with, and loved hundreds of people with disabilities. All roads led to Danny. While this life is unanticipated, it simply is. I could wallow or embrace. I could lie and say we were able to embrace this uncertain future on our own, but that is simply not the case.
Aside from the very emotional aspects in learning that your child has a significant disability, there are practical matters to consider. What therapies are best? What equipment do we need? How do we get him to eat? In walked a team of professionals from Infant Toddler Services of Johnson County. Their constant, compassionate, professional home services have been instrumental in Danny's achievements. Danny received physical, occupational, and speech therapies. He saw a dietician and teacher for the visually impaired. I cannot imagine where we would be without their support, expertise, and guidance. All of this was possible through Tiny-K, a state and federally funded program that operates through local infant and toddler services. These are our tax dollars at work.
I have often reflected on our personal experience when thinking about the current tax policy and subsequent cuts to state services. There are many in leadership who expound on government waste and excessive government spending. They proclaim we are spending more than ever, and use ridiculous phrases like "a reduction of an increase". It's as if faceless boogey men are hiding behind curtains, burning tax payer dollars. That is not what I see.
I see Kim, our vision teacher, teaching Danny as a nearly blind infant, to recognize our faces. I see Linda and Harrietta, amazing friends, caring for adults with physical and intellectual disabilities in their homes. I see other friends, too many to name, working tirelessly and lovingly, as teachers and administrators in our schools. There are no bogey men. There are only hard working, honest people fixing our roads and bridges, teaching our children, inspecting our food and water, presiding over our courts, patrolling our streets, and serving our elderly and disabled. They work everyday for the common good, and their good work is being undone by a failed tax policy that benefits a privileged minority.
Lest you believe this is entirely emotional, "We are the World" diatribe, let me supply some facts. The Kansas Board of Regents reports that every dollar invested in higher education results in almost twelve dollars of economic activity in the state of Kansas. Infant Toddler Services' research concludes that for every dollar invested, seven is saved down the road. High school dropouts are sixty-three times more likely to be incarcerated than college graduates. Melissa Rooker, State Representative, reported at the Mainstream Coalition forum on February 17th that if you counted every conceivable dollar spent on education, it would total around $13,000 per student. It takes over $25,000 to house a prisoner. Their refusal of Medicaid expansion will cost $2.6 billion dollars from 2013 through 2022. We are missing the big picture. We are not looking to the future. We live in a state governed by a narrow vision of prosperity and we are on the titanic. Spoiler alert: it sinks.
My family's need for government funded services was certainly not expected. We planned, received excellent health care, and made good choices. We simply drew the preemie card. We are all one fall off of a ladder or a premature baby away from needing help. I would argue that none of us can live safely and happily in the limited government bubble. We all want good roads, demand safe communities, and an education system that allows our children to reach their highest potential. These are core responsibilities of government. We should value public servants and celebrate institutional knowledge with a single-minded focus on providing quality services. They are professionals who are able to work toward our best interest and remain unmotivated by profit. These services are valuable, necessary, and save tax dollars in the long run.
Our communities deserve it. Our families need it. Our children are worth it.
Amazing!
ReplyDeleteWhat a great read. Really makes you put your thinking cap on. Very eye opening. Thanks for sharing. You definitely still have a way with words...so good!
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