Parents sacrifice to care for kids with disabilities
DEAR ABBY | Aunt who urged one mom to do more triggers angry response from readers
DEAR ABBY: On Aug. 10 you printed a letter from an aunt who was upset because her sister, the mother of a child with autism, doesn't have time to join in fund-raising with the rest of the family. While I commend the writer and her family for raising money for autism research, that woman needs to cut her sister some slack.
Few parents have the emotional energy or time to advocate for their child's special needs. I commend you for giving the letter writer the answer you did. I would challenge anyone who thinks he or she could "handle it" to walk a mile in our shoes. Our entire lives center on our children and their doctors' appointments, therapy, special schooling, adaptive equipment, etc.
The last thing we need to hear is some self-righteous know-it-all putting us down for something we were hand-picked by God to do.
Special-Needs Mom
in Alabama
DEAR MOM: I heard from the parents of many special-needs children who echoed your sentiments. And you're right -- it does take a very special parent not to crack under the stress. Read on:
DEAR ABBY: I am the mother of two boys with special needs who are around his age, and I know that woman is "very involved" in a way her sister cannot even begin to imagine. It is a labor of love that requires intense attention to their every action and potential need.
Perhaps "Raising Money" should spend an entire day being the primary caregiver for her nephew while trying to complete household responsibilities or work. I cannot tell you how many times I have cried in my car out of sheer fatigue.
The most charitable thing this aunt could do is to show up on her sister's doorstep with dinner, an offer to do the laundry and a long hug.
Cindy in Austin, Texas
DEAR ABBY: No one fully understands what a parent with a child with a disability goes through from day one. First there is the emotional aspect. We grieve. It's not the kind of grieving you do after a death. This is grieving that never ends. If you're not crying, you're angry. Some days you can accept and breathe; other days you can't. Anything can set you back, and then you're sobbing again.
Not only is there the day-to-day caring for the child -- feeding, dressing, hygiene, to name a few -- but also phone calls, meetings, doctor visits, therapies. When the kids are little, these things aren't too bad. But as they get older, larger, stronger, it breaks the caregiver's body and spirit.
There is also the problem of not being able to get needed services. In many states, once children are out of school and on the waiting list for adult services, they sit and languish at home with no services until they qualify for accommodations. In some states that can be many years. And there's no portability of services between states, so if you relocate, you go to the bottom of that state's waiting list.
Living with that, we often can't get or hold jobs. Day care is a huge problem for us and our kids. If that woman really wants to help, she should offer respite care and get involved with the waiting list issue, which is as important as research.
Sonja in Colorado
DEAR SONJA: In this time of draconian cutbacks everywhere, I hope our politicians will direct their thinking away from divisive politics and being re-elected to what must be done to help our most vulnerable citizens.
Dear Abby is written by Abigail Van Buren, a k a Jeanne Phillips, and was founded by her mother, Pauline Phillips. Write Dear Abby at www.DearAbby. com or Box 69440, Los Angeles, Calif. 90069.