Murray, Denise and Ryan
My name is Denise Hastings. My husband Murray and I have 3 children. Alison, 31, Kurtis 27 and Ryan 25. Ryan has been diagnosed with severe developmental delay with autistic tendencies. The diagnosis is purely descriptive as in spite of years of doctors and testing and pleading and probing we only have a long list of what he is not. What he is is a highly active young man who functions at about a two or three year old level. He has little speech (a few words), a few signs and an unwavering insistence to communicate about his obsessions with anybody who will listen (usually me)-all day long! As a child he was a terror (cannot begin to describe the burnout of dealing with his first 10 years) but with proper medication and age outgrew many of his behaviors. Today he is a pleasant affectionate young man who requires constant supervision. He needs to be bathed, dressed, toileted and helped with nearly all tasks. I am now in my 31st year as a constant caregiver. Ryan receives 8 hours per week through SSAH and as well attends a day program at LCDS (5 hours per day) weekdays. We also receive 10 weekends per year respite, but at this point they are not nearly enough. Although Ryan is the best he’s ever been, my energy level and ability to cope has ebbed to its lowest. I am 53 and see no relief in sight for I long as I am able to stand. Things most 50 year olds are starting to look forward to - retirement, time for themselves, time alone with their spouses, vacations, sleeping in (past 6AM), freedom - I fear I will never experience. Resources (eg) group homes, are on a priority basis. So short of a complete breakdown I guess this is our fate. Sometimes lately that breakdown seems terrifyingly close.
February 16, 2010