There is no playbook for raising a disabled child. Parents triumph and parents fail. Boundaries are blurred and often crossed. Love and good intentions can interfere with growth and independence.
This week’s episode of Speechless addressed this balancing act disabled children and their parents face as the years go on. In my own situation, after 25 years, my mom and I continue to search for the proper boundaries between independence and enabling. There are many times my mom oversteps and many times I allow her to.
In the Speechless episode R-U-N-RUNAWAY, JJ overhears a conversation between his parents and his siblings. They were discussing JJ’s future, including “who was going to get him” after the parents were gone. JJ left unnoticed and went to Kenneth’s (caregiver) house. He was furious and hurt that this discussion happened without his involvement.
In true DiMeo form, Maya tried remedy the situation by helping JJ runaway. Of course, she could not help herself and continued to overstep the boundaries. In the end, she met a disabled man aka “wheelchair badass” living a full, independent life. Maya arranged for him talk to JJ alone. The wheelchair badass gave insight on gaining independence and also on dealing with “passionate moms”.
To my delight the character of the disabled man was not only played by a disabled actor, the character was portrayed by Zach Anner! Zach Anner is a comedian and YouTube star. He is also one of my role models!
In my own experience, I don’t ever remember my parents making decisions about my future without involving me. My mom and I discuss her fears about my future. Currently, I rely on her quite a bit. We are working toward becoming more proactive and independent. However, old habits die hard!
I do appreciate the fact that my parents respect me as an adult. I pretty much make my own decisions. However, my mom still “strongly suggests” and sometimes begs me not to order the “Erupter” at Erbert & Gerberts.
My advice to parents of teenage or adult disabled children is to view them as the captain of their ship. Every captain has a crew. Be a crew member. Most disabled adults do rely on family members to provide some sort of care. However, the captain should always be involved in setting the course.
Sometimes the best lessons we learn are after we fall. As hard as it is, parents sometimes need to let go. You may be surprised at how far your disabled child can sail!
Until next time, Keep Rollin’ and Keep Smilin’
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