SPECIAL-NEEDS CHILDREN REQUIRE SPECIAL PARENTS10/29/09

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SPECIAL-NEEDS CHILDREN REQUIRE SPECIAL PARENTS10/29/09

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

CINDY: 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.Dear

Abby is written by Abigail Van Buren, also known as Jeanne ,

and was founded by her mother, ine . Write Dear Abby at

www.DearAbby.com or P.O. Box 69440, Los Angeles, CA 90069.

Here is the original article:

Dear Abby: My 8-year-old nephew was diagnosed with autism at the age of 3. He

has made amazing progress with therapy and has advanced so he is practically

functioning at his age level.

Our entire family has teamed up and joined a charity that raises money for

autism. We have devoted our time and energy to this important cause. My sister

(my nephew's mother) refuses to get involved! She says she is " too busy. "

We all work and have other activities, yet we still make time to devote to this

cause. She doesn't work and has no other responsibilities outside her family

that prohibit her from participating. She says raising money isn't something she

likes to do.

I don't have much time for it either, but our family MAKES the time because this

cause is important to us. It makes me furious that she won't help raise money

for her own child's disorder. How can I talk to her about this without seeming

confrontational? †" Raising Money in Florida

Dear Raising Money: I urge you to refrain from doing so. For heaven's sake, your

sister is the mother of a child who is working hard to overcome a disorder. She

has a full-time job †" one that lasts 24 hours a day, seven days a week. She is

not malingering, so stop judging her.