Monday, December 5, 2011


Some little known facts about parents/caregivers of special needs children (courtesy of National Family Caregivers Association):

*More than 65 million people, 29% of the U.S. population, provide care for a chronically ill, disabled or aged family member or friend during any given year and spend an average of 20 hours per week providing care for their loved one.

*Caregiving families (families in which one member has a disability) have median incomes that are more than 15% lower than non-caregiving families. 

*Family caregivers experiencing extreme stress have been shown to age prematurely. This level of stress can take as much as 10 years off a family caregiver's life.

*The divorce rate for parents of special needs children is reported to be as high as 80%.

I have the same worries as every Mother:  the mundane things like grocery shopping, laundry, and paying the bills, as well as the bigger worries of money, well-being of my marriage, and health of my children.  However, as a Mother of a special needs child, I also advocate for my daughter's right to an education, dispute the insurance company's refusal to cover the costs of my daughter's necessary medical supplies, and ensure that the doctor's office called in that prescription because my daughter can not miss one single dose.  

Then there is the daily grind of caring for a special needs child:  the lack of sleep due to a child that wakes up screaming throughout the night, the physical demands of caring for a 35 pound child, the constant measuring of medications, and the worry about their future with a rare neurological disorder.

So with all that taken into consideration, why does it always feel that things are stacked up against parents of special needs children?  The school systems rarely make it easy for an equal education, the doctors' nurses need to be constantly called, the agencies that are set up to assist individuals with special needs are understaffed and running out of funds.

Today I am bitter and angry.  I am fed up and exhausted.  Today I want to quit.  Today another girl lost her battle with Rett.

"Be kind, for everyone you meet is fighting a hard battle."  Philo



  1. today i am hugging you from nh and hoping tomorrow will be better. i know most things about your day WON'T be any different, but hope you'll have the strength to take another step. give that reagan a hug for me!

  2. Dawn, I hope things get better for you. You and your family are always in my prayers and my heart. Love Aunt Barbara