A Handful of 3, 4 Make a Family

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October 29, 2001 News Morgue Search www.feat.org/search/news.asp

AWARENESS

* A Handful of 3, 4 Make a Family

* Letter to the WSJ on Mercury

A Handful of 3

[First in a two-part series. By Carol Harper

carolharper@.... Thanks to Velten.]

http://www.sanduskyregister.com/cgi-bin/LiveIQue.acgi$rec=46410?frontpagewee

kly <-- address ends here.

Bell sits half slumped over, propped up with pillows on a couch

in her living room.

It's lunchtime for the dark-haired girl with dainty features.

Sitting at 14-year-old 's feet is her mom, , who pokes a

small bite of ham sandwich into 's mouth, asks her to chew and wipes

her chin and mouth with a towel.

's 13-year-old sister, , sits cross-legged on the floor with

a tub of broken crayons and a notebook. She chooses one crayon after another

and presses hard on each stroke, creating rich, repetitive designs.

A third daughter, , 18, walks in from the kitchen and asks her

mom why she went out there. She had forgotten.

Caring for one disabled child would be a challenge for any mom.

Bell has three.

was diagnosed with Rett syndrome, a degenerative disorder, and

must use a wheelchair. [see website reference below.]

is autistic.

has attention deficit disorder.

" This is not what I had planned for my life, " Bell said. " I'm

distracted. I'm moving three different directions. I don't have time to be

real social with people.

" I never thought in my life that I had a good mother instinct. Now I

find I have an over-developed one. "

It is common for Bell to be up at 2 a.m. trying to control 's seizures

or coughing. is an early riser, always up by 7 a.m.

The three girls' disabilities keep from working, and the family

survives on Social Security disability benefits.

The girls' pediatrician, Dr. Glenn Trippe, New Beginnings Pediatrics,

Norwalk, said Bell does the best job she can with the resources available to

her.

" These kids for this mother are an absolute full-time, intensive-care

job, " said Trippe. " I don't know how she does it. "

Bell was adopted as a child and raised in a dysfunctional home in Cleveland.

At age 28, she gave birth to .

Bell used to drink alcohol. As a result, showed some symptoms

of fetal alcohol syndrome. She cried constantly and developed rather slowly.

's other symptoms include a short attention span, frustration,

forgetfulness and learning difficulties.

She was diagnosed with attention deficit disorder, a condition she

will carry for life, Trippe said.

When Bell quit drinking, she dealt with feelings of guilt over

's struggles.

However, seemed normal when she was born.

's development marched from her first smile through her first

steps and first words until she turned 18 months old. Then a degenerative

disorder began stealing her toddler milestones.

Bell remembers waking at night thinking she heard laughing. To

her horror, tiny was having seizures.

At first, specialists thought had autism. She began toe walking,

pulling hair and biting. She seemed aloof, distant from people.

A year later, 's condition worsened. Her walking and hand

movements were clumsier. She would scream for 15 minutes to an hour each

day.

" They couldn't figure out what was wrong, " Bell said. " We went to more

doctors. "

At age 2 or 3, started a hand-wringing pattern typical of Rett

syndrome. She also began hitting her teeth with her hand.

" () lost functional use of her hands because her hand wringing

took over, " Bell said.

About the time Bell realized had problems, was born.

lives in her own non-verbal world -- created by autism -- of

water, cheese slices and richly colored, intricately patterned drawings.

However, from the time she was a baby, 's behavior reminded Bell

of , because she also was pulling hair and biting. was aloof, with

wild mood swings.

can be physical, violent and destructive, qualities of a

high-energy child who cannot understand social boundaries.

Once, broke a sink while trying to play in water.

Though 's body developed normally, she cannot

communicate.

" is very intelligent, " Bell said. " She understands everything you

say. She just can't repeat it back to you. "

While Bell was coping with her babies' problems, was attending

regular school and regular classes and falling way behind, Bell said.

The struggles of the family often are misunderstood by outsiders who

watch from a distance.

" We have people calling

children's services on us because they don't understand the family, " Bell

said. " Everybody has their opinions. We get criticized if I get sick and I

don't keep the house perfectly immaculate. I get criticized if 's hair

is a mess. "

's activity distracts , who says " Look at what she's doing with

her hands ... "

's arms move repetitively from her chest to her mouth, hair and cheeks.

" () messes (her hair) up all the time. has her problems.

has her problems, " Bell said. " We work good together as a family. "

Huron County Sheriff's Lt. Randy Sommers said his contacts with the Bells

were not negative.

" People who didn't know the situation would call us to check on the

kids, " Sommers said. " There was never a problem. "

Several years ago, was outside. A passerby saw running with some

horses and thought she was running from the house.

" She was just having fun, "

Sommers said.

One of Bell's biggest frustrations is finding dependable, long-term,

handicap-accessible housing for a family of four. Metropolitan Housing

recommends three bedrooms; most handicap-accessible housing that will

accommodate 's wheelchair have two bedrooms, Bell said.

Also, needs room to run and distance from upsetting noise, like

blaring radios.The family needs to settle in one place so can have

back surgery on her scoliosis and dental work on broken teeth.

Sometimes, Bell just needs peace and quiet.

The Bell family includes pets -- two ferrets, a black and white

orphaned dog named Socks and a Quaker parrot -- for a purpose.

" Pets are a very important part of our lives, " Bell said. " They're

therapy for my kids. And I always liked animals. I communicate with them

nonverbally -- it's kind of like God prepared me for the children I have. "

Trippe pointed out the girls are now the size of adults. Despite this

physical maturity, 's coordination and body control are at an infant

level; 's mental development is at a toddler level.

" Take the size of those children, add a little pubertal stuff to it,

and you're off to the races, " Trippe said.

" has her hands full, "

Sommers said.

Bell considers the 'round-the-clock fullness of her life and gives a

mother's glance.

" Raising the kids is a joy, " Bell said. " I love them dearly. "

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4 Makes a Family

[This is the second part of the two-part story.

www.sanduskyregister.com/cgi-bin/LiveIQue.acgi$rec=46442?frontpage

Two weeks ago, Bell talked about the uncertainty her 14-year-old

daughter's condition called Rett syndrome.

The degenerative illness that showed up when was 18 months old

slowly stole her ability to walk, talk and feed herself.

" Every day, it's like living with someone with a terminal illness, "

Bell said. " could die at any time from choking. It's like anyone who

has a child who is sick and dying. I feel like that every single day. "

Last week, 's health plunged.

For two days, screamed in pain and could not sleep. Unable to

talk, could not tell her mom what hurt. So at 5 a.m. Tuesday, Bell

rushed by ambulance to Fisher-Titus Medical Center in Norwalk.

A gastro-intestinal specialist admitted to Toledo Childrens'

Hospital for tests Wednesday.

What was stressful already worsened Friday.

Bell received a three-day eviction notice from their apartment on Ohio

113.

Bell cried.

Her problems are piled higher than her resources this time.

She decided to focus on her daughter.

" I can only take so much stress in my life, " Bell says. " It is too

pitiful when 's crying. One tear will come out. This time, though, she

was screaming. She hardly ever screams. We don't know what is wrong. "

Children who develop Rett syndrome eventually revert almost to a pre-infancy

stage of development, said Dr. Glenn Trippe, the family's pediatrician from

New Beginnings Pediatrics in

Norwalk.

Scientists found a chromosomal link, but no cause, no cure, Trippe

said. All of Bell's daughters -- , 18-year-old with attention

deficit disorder, and 13-year-old with autism -- will live with their

conditions for life, said Trippe.

On a usual day at the Bell household, is propped on pillows at

one end of the couch so she can see the television screen. A country music

video of Dolly Parton is playing. Bell is trying to wake .

" She's my little teddy bear. I just love her, " Bell coos as she

strokes 's face. " She's very sweet.

" You're the princess. Mommy's girl. Any angels in the room? Are they

talking to you? Are you having angel dreams? "

had struggled with sneezing and coughing from allergies since 3 a.m.

the night before. For the next two weeks, her eating and sleeping would be

off schedule, Bell said.

McEowen, a caregiver who has helped with a couple of days

each week for about five years, was visiting.

played the part of the wiser big sister to , who

sometimes wants to learn to drive, but then changes her mind.

is " directionally impaired, " they explain together, finishing

each others' sentences. She could be in Monroeville or New London and think

she was in Norwalk. alternates between wanting to drive and being

scared to drive.

" But then I miss going places like the mall, " said.

Children with attention deficit disorder can vary widely on an

intelligence quotient scale. However, usually they lack social reasoning and

the ability to make good judgments, Bell said.

For those with autism, repetitive behaviors are common. When

asked if she wanted to watch a movie, grinned. She sat on the

floor and flapped her arms enthusiastically about shoulder height. Her body

bounced up and down.

Some of 's favorite movies are " Little Mermaid, " " Land Before

Time " and " Dumbo. " But she watches " Labyrinth, " starring Bowie, every

day.

The Bell family moved from Lorain because people noises like bickering

and blaring radios would upset . Traffic noises in the country don't

seem to bother her. However, sometimes she can still become

overwhelmed.

While a United Parcel Service truck delivered boxes of diapers for

, Socks, the family dog, barked and wagged her tail.

sat on a love seat, pulled her knees up to her chest, lowered her

chin and plugged her ears with her fingers. She frowned.

Bell asked what was

bothering her.

" Do you want to go to the store? "

No response.

" Do you want to see the horsey? "

No response.

climbed down from the love seat and sat on the floor near

.

After scrunched her face into a mock angry look, teasing

, the sisters touched noses. smiled.

" Where's your sign book? " Bell asked.

jerked out a 3-ring binder with photographs of common household

items cut from magazines and glued onto pages. She points at an ice cream

cone. Bell says the words verbally and with sign language for the deaf. As

she jabs at other pictures with her finger, signs some of the words

with Bell.

" , are you beautiful? " Bell says as she signs a ring around her

face.

signs a ring around her face, frowning.

" Yes, you're beautiful, " Bell says and signs.

still seems angry.

Suddenly jumps up and paces between the kitchen and living room,

half running, half walking.

The behavior is common for autistic children, Bell said.

opens the refrigerator door. Slams it.

Bell explains that a medicine to prevent 's violent behavior makes

her voraciously hungry. She eats 24 slices of American cheese each day. Part

of 's therapy is learning how to perform simple household tasks like

warming food. Not having microwavable food likes makes her angry, which

she expresses like a 2-year-old child in an adult's body.

Hearing a slam of another door and creaking of faucets, runs

to the bathroom to keep inside.

is fascinated by water. She takes from up to 10 baths each day,

and doesn't understand she should wear clothes around other people, Bell

said.

Ten minutes later, trudges out of the bathroom with wet hair;

she's wearing a denim dress and smelling like VO5 shampoo.

reports had dumped out three-quarters of the bottle of

shampoo, and had chewed holes in the neck of a purple T-shirt she was

wearing minutes earlier.

" She eats clothes, " said.

Trippe explained extreme behavior is typical for autistic children.

One patient in the Sandusky area gnawed on a rubber chew ring when he was

upset, otherwise he would chew anything and everything near him. The chew

ring was approved by a neurologist, added Trippe.

's legs sprawl in front of her as she sits on the floor with a

notebook and a bin of broken crayons.

" We call this aggressive coloring, " Bell says. chooses bold

colors and draws spiraling ovals that overlap and form designs. moves

fast. A drawing session of six or seven pictures lasts a couple of

minutes.

From 's full-speed-ahead activities to 's acute need for care

and 's attempts to find her way in life, Bell manages to keep

her family together.

" We have been through a lot of really hard times, " Bell said. " This is

a 24-hour-a-day job.

" But I like my job. "

MORE ON RETT SYNDROME

For a web source on Rett Syndrome, try the Rett Syndrome Research

Foundation at www.rsrf.org. You can subscribe to their newsletter,

RSRFNewsAlert, by sending and email to RSRFNews@... with your full

name.

* * *

Another Letter to the Wall Street Journal Editor over Mercury

The time has come for the governmental agencies responsible for

protecting and helping our children to stop worrying about whatever backlash

they fear - and remove thimerosol, and other potentially dangerous chemicals

from vaccines - and focus on SAFE vaccination policy.

Most certainly the time has come for reporters to stop reporting on

something they know little about unless they have thoroughly researched the

subject - and the only way to do that, is to spend time in the life of a

child with Autism.

I applaud those parents and organizations such as SAFE Minds for being

persistent in pursuing their cause. Because of their persistence, my future

grandchildren may never have to experience what my son has.

Guppy - mom to , TGuppy@...

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