Eight years ago, when Pam Floyd's son, Chaz, was a newborn, Floyd suspected something was wrong — Chaz didn't seem to be getting enough nourishment from breastfeeding. But when she voiced her concern to doctors and her home health nurse, Floyd was told to relax, that nothing was wrong. When Chaz was 6 days old, he suffered a stroke — caused by severe dehydration — that left him with cerebral palsy and a global developmental delay.

“I was furious,” Floyd says. “The medical community refused to talk to me. Everyone told me everything was okay, when obviously it wasn't.”

Floyd was so angry she took her story to her local newspaper. Then, national news organizations interviewed the family. “The next thing we knew, parents were calling from all over the country, saying ‘This is what happened to my child,’” Floyd says.

Thrown into the role of parent advocate, Floyd began a newsletter called “The Special Needs Club” for parents of children with special needs. And, in 1998, Floyd established the non-profit advocacy organization called the Special Needs Assistance Program for Children.

Based in Norfolk, Va., and administered solely by parents of children with special needs, SNAP provides assistance to families across the United States. “Most of the time, parents will call needing information about or help with a [program or type of equipment],” Floyd says. “And if we don't know the answer, we know where to find it.”

The program's outreach efforts range from educating parents about Medicaid waivers for assistive technology and diapers to educating the abled population about the rights of individuals with special needs. “One of our issues is the Americans with Disabilities Act, especially as it concerns parking spaces,” Floyd says. “The spaces aren't wide enough, or the blue lines for wheelchair ramps are on the wrong side of the spaces. And we've started printing notices to place on the cars of people who are parked illegally in handicapped parking spaces that say, ‘We know you probably were in a hurry, but your parking here was an inconvenience for a person in a wheelchair.’”

“Parents of special needs children have to fight for everything,” Floyd notes. “Stuff you would think is common sense, is not.”

SNAP also provides grants to the families of disabled children for therapeutic and medically necessary equipment and supplies. To qualify for the grants, parents must provide a letter or certificate of medical necessity, along with a denial from the family's health insurance. SNAP grants frequently cover non-reimbursable items such as car seats for larger children, bath chairs, tricycles and wheelchair ramps.

Money for the equipment comes from donations and from the proceeds of an ongoing, online celebrity auction. The auction, accessible at www.snap4kids.org, has been a hit, Floyd says. “We've received items from authors, actors and musicians,” she says. “Paul Newman is our favorite. We got $10,000 for one of his cookbooks last fall.”

In July, SNAP will begin the process of opening parent education and information centers in all 50 states. After a two-year training period, Floyd hopes to employ 10 SNAP representatives to oversee centers in five states, as well as one parent in each state to maintain the centers.

Though Floyd acknowledges other organizations that provide education and advocacy for parents of special needs children, she says “parents are not going to get the honesty there that they will through us, as parents ourselves,” she says.

Please do NOT confuse us with an organization called SNAP.  We are Snap4kids and have a totally different mission than them.  Plus they don't like it when people confuse them with us.  Thank You!

                             THE VIRGINIAN-PILOT 
                                    Copyright (c) 1994, Landmark Communications, Inc.
                                    
                                    DATE: Tuesday, October 4, 1994               TAG: 9410040024
                                    SECTION: DAILY BREAK              PAGE: E1   EDITION: FINAL 
                                    SOURCE: BY DEBRA GORDON, STAFF WRITER 
                                    LENGTH: Long  :  231 lines
                                    

MOTHER WITH A MISSION CHAZ FLOYD HAS CEREBRAL PALSY BECAUSE, DOCTORS SAY, HE DIDN'T GET ENOUGH MILK FROM BREAST-FEEDING. HIS MOTHER, PAM FLOYD, IS ON A NATIONAL CRUSADE TO STOP THIS FROM HAPPENING TO OTHER NEWBORNS.

CHAZ FLOYD slowly stretches his small body and moves his arms over his head. Then, with a small push, he rolls over onto his stomach.

``Yeah, Chaz,'' applauds his mother, Pam Floyd. ``Isn't that great? He just started doing that yesterday.''

Chaz Floyd is 15 months old.

At 15 months, most babies are walking, running, climbing, jumping.

And Chaz Floyd has just rolled over.

Chaz has cerebral palsy. When he was 6 days old, he had a stroke. Caused, say doctors, by dehydration. Chaz wasn't getting enough breastmilk to nourish his 10-pound, 4-ounce body.

And so now Pam Floyd, 29, is on a mission. To tell women that some babies just don't get enough milk from breast-feeding. To tell women that sometimes your doctor isn't listening. To tell women that, like having a baby, breast-feeding isn't for everyone.

It's a message she'll deliver nationally later this fall when she appears on ABC's ``20/20.''

``All women should try breast-feeding,'' she says. ``But if their gut reaction is that this isn't working out, they shouldn't let a person talk them into doing it.''

You could say it's guilt that's catapulted Floyd into the national spotlight on this issue. Guilt that she didn't trust her own instincts when her baby kept crying. Guilt that she didn't ignore the professionals who

kept telling her, ``Oh, you're just a new mother, it's normal. Everyone can breast-feed,'' and rush Chaz into the emergency room. Guilt that she played the nice mother and good girl, while her baby was starving.

But it's anger that keeps Pam Floyd going, that's prompted her to take on this politically incorrect topic. A slow, steady burn that never goes away. That flares up every time Chaz, a blue-eyed, blond little boy with soft ringlets and a dimpled smile, tries to do something he can't, like crawl over to her for a kiss.

``And that's when it literally rips your heart out, and you go back through it; `why didn't I listen to myself?' '' says Pam. ``But a lot of it is just plain anger, because no one listened to me, took me seriously.

``No one wanted to take 10 seconds to listen to what I had to say.''

They're listening now.

Since a column in this newspaper about Chaz when he was 6 months old, the Floyds have been featured in a front-page Wall Street Journal article; interviewed for the ``20/20'' show; and appeared on the Los Angeles-based, nationally syndicated talk show ``Marilu Henner.''

Their story also prompted a similar feature on ABC's ``PrimeTime Live,'' although they weren't interviewed for it, and has been the basis for more than a dozen articles in other newspapers and magazines about potential problems with breast-feeding.

The media attention has been exciting for Pam and her husband, Frank, 30, who live in a working-class Norfolk neighborhood in a run-down HUD home Frank is restoring. The free trip to Los Angeles. The limousine ride. An afternoon spent with ``20/20'' reporter Lynn Sherr.

But when the television lights are turned off, when the reporters put away their notebooks, and when the phone stops ringing, they are still left with the reality.

Chaz. A 15-month-old baby who's just learned to roll over.

When your son has cerebral palsy, you learn to deal with doctors, hospitals, test and drugs. You learn to control a seizure without panicking, to bathe a limp child who can't hold his head up.

But Pam Floyd never realized that she'd learn another skill - how to wend her way through a bureaucracy. For the very people who are supposed to make this hell a little easier, often just make it worse.

``What do you mean Medicaid denied the claim? I have a letter right here approving it. I'll send you a copy.''

Pam Floyd slams down the phone. It's been five months since she ordered the bath chair for Chaz, a blue-webbed device into which he can be strapped for baths.

The medical supply company lost the order. Never bothered to call and tell her, though. But Pam has come a long way since people ignored her concerns about Chaz 15 months ago.

These days, she keeps a detailed list of every phone call she makes, every person she talks to, writing reminders to herself to double-check any promises made.

``I tell them my name and I can just hear them cringing on the other end of the phone,'' she says. ``I've got quite a reputation as a bitch.''

Like with Chaz's prone stander, a $1,270 device into which he is strapped standing up. It's supposed to strengthen his trunk muscles and enable him to use his arms to reach and play like any other child.

Ordered. Never came in. Salesman said her insurance had a $1,000 limit on medical equipment. But Pam knew better, and when she got confirmation and called the man back, he hemmed and hawed his surprise.

``He hadn't even bothered to check,'' Pam says disgustedly in her deep Southern accent, the byproduct of a childhood spent in the hills of Lynchburg.

You see, these people think she's stupid. Maybe it's the accent. Maybe it's the fact that, during his first year, when the family didn't have any private health insurance, Chaz was on Medicaid.

But Pam Floyd is not stupid.

Four years of college, jobs as a legal secretary, a claims processor, a bookkeeper. She never planned to be a stay-at-home mother, always thought she'd head back to work a few months after Chaz was born.

The family could definitely use the money. Frank works as a clerk at Food Lion, and his salary is stretched thinner than a politician's promise.

Chaz does get $446 a month disability from Social Security. But don't get Pam started on that.

She's been fighting with Social Security for three months now. They think Frank makes $1,800 a month, and told her they were cutting Chaz's benefits in half to compensate for Frank's ``raise.''

She tried telling the woman over the phone that he didn't make anywhere near that much.

Couldn't get anywhere.

So she gathered up Frank's pay stubs, packed Chaz into his special car seat ($250), drove downtown and spent a couple of hours waiting, trying to entertain a toddler who can't walk in a sterile government office, so she could prove her husband doesn't make $1,800 a month.

Then they lost the paperwork.

She made the same trip again, gave them the same copies.

A week ago, they told her it was all fixed.

Then she gets a letter saying she owes $642 in back payments because her husband makes $1,800 a month.

It's not even the idiocy of the system that gets to Pam; it's the way people talk to her. Like the Social Security office. ``Are you sure you understand that we're talking about gross pay, not net pay?'' asked the woman. Pam explained that she had done payroll for six years, that she knew about gross pay.

``And darn if she didn't ask me the same question five more times during the conversation.

``When you deal with these organizations, they talk to you like you're the dumbest, most uneducated person there was. You already feel low enough asking for help; they don't have to treat you like dirt.''

Chaz Floyd is lying in Karen Miller's lap, a red rubber ball in his mouth. This is one of two weekly physical therapy sessions he has to strengthen and develop his muscles.

Miller, Chaz's physical therapist, puts him on the floor and rings a bell near his right ear. He turns toward the sound and rolls over, a big grin plastered on his face.

A year ago, even six months ago, these sessions were hell. Chaz suffered from nearly constant seizures, was on two different medications, and was just plain miserable. He couldn't hold on to toys, let alone reach out and pick up one. Couldn't roll over. Didn't want to play.

Then the medications kicked in. The seizures stopped. And the unbelievable happened - a clear brain scan.

Now, he's a happy child who sits in a blue plastic chair ($550) on the couch next to Pam, playing with a musical toy and babbling nonsense.

``He keeps me sane,'' says Pam. For no matter how angry she gets, how frustrated she is, just sitting next to Chaz calms her down. She never yells in front of him, never loses her patience with him. He's like some drug she needs to balance the craziness of her life.

Unfortunately, he's also the catalyst that causes that craziness.

Sometimes, all Pam can think about is running away. Leaving her husband, her baby, leaving everything and heading for some deserted beach where she can sip pina coladas.

Especially when she gets hate mail from women who are so obsessed with breast-feeding that they think nothing of calling her a liar, accusing her of being paid by the baby formula companies and telling her to shut her mouth.

For the past 30 years, there's been a national movement to get new mothers to breast-feed. And in the past decade, it's begun working, with 56 percent of women leaving the hospital these days as breast-feeding moms.

But a story like Pam's - it has the same effect on breast-feeding that the Alar scare had on the apple industry, when reports of cancer-causing chemicals sprayed on apples led to a national boycott.

``Women used to say, `I'm going to try and breast-feed;' now they're saying they won't even try,'' says Laurie MacPherson-Smith, a certified nurse-midwife in Norfolk. ``It's like they have a good excuse not to even try.''

The state's public health department is trying to do damage control. It sent out a press release in August, noting that ``despite recent media reports that breast-feeding puts babies at risk for dehydration, breast-feeding remains the healthiest way to nourish your baby.''

Pam Floyd agrees.

``I'm not against breast-feeding,'' she says, over and over again. ``But it's not for everyone. No one would tell you that every woman should have a baby, or can have a baby; why do they say every woman can breast-feed?''

Instead, she wants her story to convince doctors, nurses and the people who write breast-feeding books to be clearer about the danger signs. And to listen when a mother calls and says something is wrong.

And for those who have accused her of being uneducated, of not having prepared for breast-feeding her son, who send her hate mail and make threatening phone calls, Pam wants them to see the 3-foot-high pile of books, pamphlets and videos she keeps on her kitchen counter. All read and watched before her son was born.

She knew about checking for six to eight wet diapers a day, a key indication that a baby is getting enough milk. And Chaz had wet diapers. But she didn't know they were supposed to be wringing wet. And her books didn't talk about the signs of dehydration in a baby - like a sunken soft spot on the top of the head.

Now she knows. But there won't be any more babies. Two weeks ago, if you asked her why, it was because she didn't know where she'd get the time or energy to care for another child; because she was afraid a ``normal'' sibling would make Chaz feel inadequate; and because she's terrified of having another disabled child.

But last week if you asked her why, the answer was different. Because Pam Floyd may need a hysterectomy. Fibroid tumors and an elevated estrogen level concern her doctors, who worry she has a higher risk for uterine or ovarian cancer.

She has no regrets if she has to have the operation. This decision, like every other decision she makes these days, is tied directly to Chaz.

``I'd rather be here for 40 years for him, than just be here for four years.''

Some good has come out of this story. Because of the publicity, the medical profession is beginning to talk more about the topic at conferences and in journals.

La Leche League International, which assists women with breast-feeding, is being more vigilant with its advice about checking for wet diapers and noticing the signs of underfed babies.

And last week, Pam Floyd had a call from a pediatrician in Denver. She wanted Pam to know that she'd just seen a mother with a 3-day-old, dehydrated, breast-fed baby. The mother had recognized the signs, the doctor said, because of Pam's story.

Mother and baby are doing fine. ILLUSTRATION: BILL TIERNAN/Staff color photos

Pam Floyd watches her 15-month-old son, Chaz, during his physical

therapy at Easton Preschool.

Frank Floyd plays with his son during a session with physical

therapist Karen Miller.

Chaz with his father. Chaz has just learned to roll over.

Graphic

IT'S YOUR TURN

The Floyds are trying to raise money to take Chaz to a special

center in Birmingham, England, called the Foundation for Conductive

Education. Donations may be sent to First Union National Bank, in

c/o of Chaz Floyd, 7912 Halprin Drive, Norfolk, Va. 23518.

KEYWORDS: BREAST-FEEDING CEREBRAL PALSY

                             THE VIRGINIAN-PILOT 
                                                  Copyright (c) 1994, Landmark Communications, Inc.
                                    
                                    DATE: Tuesday, October 4, 1994               TAG: 9410040079
                                    SECTION: DAILY BREAK              PAGE: E5   EDITION: FINAL 
                                    SOURCE: BY DEBRA GORDON, STAFF WRITER 
                                                                                 LENGTH: Medium:   94 lines
                                    

TIPS, WARNING SIGNS FOR BREAST-FEEDING MOMS

THERE IS no question. Breast-feeding is the best way to feed your infant. Breast milk contains all the nutrients your newborn needs and is more easily digested and assimilated than any other infant food. It provides a safeguard against allergies, protects the baby against infection, causes your uterus to contract after birth and even helps a woman lose her post-pregnancy weight quicker.

Insufficient milk syndrome, which affected Chaz Floyd, is extremely rare, affecting less than 5 percent of breast-fed babies.

But breast-feeding is a learned skill. Both the baby and the mother have to learn how to do it. And with most hospitals sending mothers home 24 hours after the baby's birth; with relatives and older women far away, or uneducated about breast-feeding; and with a dearth of training in the medical schools about breast-feeding, a new mother often finds herself frustrated.

Help is usually only a phone call away. Call your pediatrician, call the hospital where you delivered and ask for the lactation consultant, or call La Leche League (548-3794 in South Hampton Roads), where trained counselors will answer your questions and, if necessary, come to your home to help.

Tips for breast-feeding

Stop using soap or lotions on the breasts toward the end of pregnancy and throughout lactation. The breast's own secretions provide the best lubrication for keeping the nipple area moist as well as more resistant to irritation.

Think about letting the nipples rub against outer clothing for a little while each day during pregnancy (wear a nursing bra with the flaps down) so they will be used to chafing when the baby arrives.

If you are taking any medications, either by prescription or over the counter, ask your doctor if they are safe for the baby. A small amount of all drugs taken by a nursing mother will end up in her breast milk.

Consult your physician about whether the baby should be given vitamin D and/or fluoride supplements. Breast milk is very nearly nutritionally complete, but it may not have enough of the two nutrients for your baby.

Once the breast-feeding has begun, drink adequate amounts of fluids and get as much solid rest as possible. Both are essential.

Make sure the baby takes the entire nipple and most of the areola (the dark ring around the nipple) into his mouth so he can achieve good pumping action and thereby stimulate the release of a sufficient supply of milk during the feeding. As a rule of thumb, use both breasts during a feeding and let the baby suckle as much (or as little) as he wants. Infants can actually suck 80 percent to 90 percent of the milk from a breast within four minutes, but they may decide to nurse longer. That's fine, because the sucking itself is believed to stimulate lactation.

Don't let cracked or bleeding nipples keep you from breast-feeding if you want to continue. (The amount of blood that gets into the milk is negligible.) To heal sore breasts, expose them to the air for a few minutes after nursing. Pain can also be minimized by feeding from the not-so-sore breast first, because the baby will tend to suck harder on the first nipple offered. Then, too, vary the position in which you nurse - sometimes sitting, sometimes lying down. That will vary the parts of the nipple that get the greatest stress as the baby nurses.

Call your doctor should any of the following symptoms occur: a generalized achy feeling, fever or other flulike symptoms, or redness or soreness in the breast. All these may be a sign of breast infection (mastitis). Sometimes, antibiotics are needed but, in many cases, the dose is low enough to cause no harm to the baby, and the infection is mild enough that breast-feeding can (and should) continue uninterrupted. In fact, an infant's drawing off milk will relieve pressure in the infected area (the baby will not become sick because the infection is not in the milk-producing glands themselves).

A newborn, breast-fed baby who is getting enough to eat should be nursing 10 to 12 times in each 24-hour period.

Keep a careful check on the number of wet diapers. You should be getting six to eight really wet diapers and one or two bowel movements a day. A good idea is to keep your baby in cloth diapers the first few days home, so you can gauge how wet the diapers are.

If your baby is nursing at least 10 to 12 times in 24 hours, and is content, alert and gaining about a pound a month, he is probably getting enough breast milk. Also, you can tell by listening to him as he nurses. You should be able to hear him swallowing. And your breasts should feel softer and lighter at the end of each feeding if he is getting enough.

Here are the signs of dehydration in an infant. Contact your physician if you notice any of these signs in your baby:

Dry mouth, cracked lips.

Tears dry up

Urine output decreases, eventually stopping.

The soft spot on the top of the head sinks in.

Lethargic, not responsive

Flushed, heart rate increases

When the dehydration is especially severe, the skin can be pinched and it will remain standing up. Urine output stops, and the child can go into a coma.

- Sources: Prevention Magazine, ``The Womanly Art of Breastfeeding,'' and ``Why Should I Nurse My Baby.''

Little ones grow and eat veggies

Botanical garden project is a hit

By Kathy Van Mullekom Daily Press

February 28, 2002