When Parents are Caregivers
In 2005, a national survey of children with special health care needs found that there were 10,221,439 children between 0 and 17 with special health care needs.
Of these, 94.8 percent live with their parents.
Since the statistics for 2005 are broken down by the size of the family, those 9,689,924 children were cared for by 15,678,331 parents. In total, we're talking a population of the United States equal to over 25 million citizens represented by children with special health care needs and the parents who are taking care of them.
Yet this enormous minority population isn't included when people start talking about "caregivers." The three major national associations for caregivers all emphasize children caring for their aging parents, but don't cover parents caring for their children with equally debilitating special health care needs. And by not recognizing the needs, they are also not educating families about the solutions, EPSDT in particular.
It's partially understandable. If someone called me on the phone for a survey and asked me if I was a caregiver, I'd say no. I'm a mom. But all us moms and dads out there caring for our children with special health care needs need the lobbying, legislative, judicial and civil rights support that other caregivers are receiving.
Just because we're parents taking care of our kids doesn't mean we aren't suffering from the same increased stress, depression and anxiety, with lowered immune system and a shortened lifespan as has been found typical of adult children caregiving for their parents.
And many of you will probably agree with me that the additional grief of a parent coming to terms with their child's special health needs, and for some, the constant struggle between life and death of our children, serve to intensify horribly the levels of stress, depression and anxiety.
We need help. Our children need their rights protected. In many ways, we're the worst possible candidates to advocate for our children because we're so busy taking care of their daily needs (along with the needs of the rest of our family) that time during business hours to research, make phone calls, pull together medical records and send emails is in extremely short supply.
In 1996, the mom of a child with multiple disabilities wrote a story called "Where are the Parents." It's still true today.
Where Are the Parents?
By Sue Stuyvesant, Parent
Hey everyone. For those of you who don't know me (I'm only an occasional poster) I am mom to Michelle, 9 years old, microcephalic, athetoid/spastic CP, cortical visual impairment, seizure disorder -- and CUTE! OK, now for the reason I'm posting.
To make a long story short, earlier this week a question was asked by some nitwit official as to why there weren't more parents (of special needs kids) involved in the local PTA and other issues that have come up that directly involve our kids. His question, which was passed on to me was, "Where are the parents?" I went home that night, started thinking - and boy was I pi**ed - and banged this "little" essay out the next day on my lunch break. By the way, I took copies of this to the school board meeting that night, gave it to a couple of influential people and it WILL get around.............
Where are the parents?
They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.
Where are the parents?
They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.
Where are the parents?
They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, "Is this the time when my child doesn't pull through?" They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.
Where are the parents?
They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.
Where are the parents?
They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.
Where are the parents?
They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.
They are busy, trying to survive!
Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this document is granted with the provision that the document remains intact.
Sue passed away in October 2003. Michelle passed away a week before she as to turne 18 in September 2005.
|
