Autism / Autism Spectrum Support Group

Special-Needs Children Require Special Parents
By Abigail Van Buren – 2 hrs 45 mins ago

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 fundraising with her and 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.
Very few parents (thank goodness for them, though) have the emotional energy, not to mention time, to advocate for their child's special needs. I commend you for giving the writer of that letter 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 around 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 can assure you, that woman is already "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 the number of times I have cried in my car out of sheer fatigue (I now carry tissue in the glove box).

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, comforting 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. It cycles over and over. If you're not crying, you're angry. Some days you can accept and breathe; other days you just can't. Anything can set you back, and suddenly 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, many of 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 the school system 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 must 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.
Posted on 10/29/09, 05:10 am