WHO'S TAKING CARE OF THE CAREGIVERS?

(June 13, 2009). I read the most heart-rending, tragic story today about a British couple whose five year-old son, who was paralyzed after being in a car accident at 18 months, died suddenly of pneumoccal meningitis.  As it would be with any parents whose beloved child died before expected, these parents were mentally and emotionally devasted because their whole world was centered around caring for their son--more than others in their immediate circle obviously recognized. 

This couple had both quit their jobs to care for him and seemed to keep themselves somewhat isolated from others. Upon the death of their son, the story said that less than 48 hours later they took their son's body (it's not clear why they still had their son's body more than a day after he died) and a knapsack filled with his toys, drove to an area where there were cliffs and jumped off in a double suicide.  

Obviously their grief was too much to deal with and perhaps they felt in some way that they would never be rid of the pain and decided this was the best way to deal with it. As is the case with parental caregivers of children with disabilities or caregivers of elderly parents dealing with Alzheimer's or dementia, the mental, emotional and physical stress can be tremendous. In their desire to help their family members with disabilities have the most productive and fulfilled quality of life possible, caregivers tend to neglect their own physical, emotional and mental well being.

(June 5, 2009) My daughter graduates from high school next year at age 22 and after years of fighting the Georgia special education public school system to ensure a quality education for my daughter, I now find out that the fight has only just begun.

You would think that after all these years, at long last the anticipation of seeing our young adult daughter in her cap and gown being rolled across the auditorium stage in her wheelchair to accept her special education diploma, could be relished as a family achievement and it will for a while.

However, there is yet another fight to come, another race to win, which is the fight for placement in the limited day programs available to ensure the continued mental and physical stimulation needed for Sierra's ever progressing mental and physical development.  As most parents like us know, our children never stop learning, some of them may just do it a little slower than others and this is a fight that hundreds of thousands of families like mine face across the nation.  We want that regular educational stimulation to continue.