As a caregiver to a child with intense and profound special needs, I know that my voice is relevant in this space because of my experiences.
I know that I sigh deeply when people who have no experience with autism offer suggestions on behavior modification.
I know that I want to throttle well meaning folks when they say to “hire help” when there is very little help to be hired or the available help comes at a hefty price tag that a family of ten can not easily afford.
I know that I want to scream when people suggest that we “take him with us – he’ll be fine” knowing he won’t be fine and will instead holler “ALL DONE!” until we agree to leave.
I know that it broke my heart as we tried different medications to thwart the aggressive behavior that resulted after the abrupt ending to Luke’s school year.
I know that it drives me bonkers when my experience with Luke is compared to raising a toddler. No, it’s not the same. A two year old kicking and screaming – kind of cute. A fifteen year old violently thrashing and screaming, not so cute.
I know that my heart often races as passive guilt is heaped upon my already heavy shoulders when we decline an invitation because of finances or weariness or just plain lack of giddy up.
I know that the gossip whispered about time spent away from my children – frequent getaways in order to be a somewhat sane mother who is able to do this exhausting endeavor day after day, hurts.
I know that I could weep every time I think about Luke’s future, my future, – fearful of what opportunities or resources await or don’t await us after 18.
I know what it’s like to be a caregiver of a teenage son with profound and complex and difficult needs. I know that my voice matters. My vulnerability matters. My experience matters as I speak into this space.
I hope and pray that my voice will be a part of many voices that will create change that is desperately needed in America.
I do not know what it’s like to be black and so I will quiet my voice, quiet my judgmental thoughts, quiet my preconceived ideas and opinions, and I will listen. I will listen to the voices of wisdom who can teach me. I will listen to their experiences and their stories, and I will learn.
This I know.
To learn more about how you can help caregivers please visit www.thelucasproject.org