10 Things Parents of Children with Developmental Disabilities Should Know

Featured: 10 Things Parents of Children with Developmental Disabilities Should Know June 2015 Understanding Developmental Disabilities. Developmental disabilities are a group of conditions with a variety of causes that include language, behavioral, physical and mental impairments. About 15 percent of children aged 3 through 17 years old have one or more disabilities that began during the developmental period of a child’s life and will usually last through their lifetime. Developmental disabilities are divided into specific conditions, including: Autism spectrum disorders, cerebral palsy, epilepsy, Down syndrome and others. These types of disabilities may cause limitations in major life activities such as caring for oneself, learning or living independently. Kids with developmental disabilities experience delays in reaching milestones such as taking first steps, smiling and learning to speak, or show other signs. Children should be monitored by their parents and primary care providers for possible developmental disabilities. If you or your child’s doctor has concerns about the child’s growth, he or she should be screened for developmental disabilities at 9, 18 and 24 or 30 months old. Essential Early Interventions. While not all children meet each developmental milestone at the same pace, extreme delays in reaching these markers may be a sign of a developmental disability. Parents should learn the signs of childhood development so they can act early if they are concerned. Families on Medicaid can take advantage of the Early and Periodic Screening, Diagnosis, and Treatment program. Seeking services as soon as possible about possible developmental disabilities means your child will receive essential early interventions. Early interventions are intended for infants and toddlers who have a developmental delay or disability that is determined by evaluating the child. When the early intervention system receives a referral about a child with a suspected disability or delay, there are 45 days to complete critical steps. Learn how your state defines developmental delays so you can get the best possible treatment as soon as possible. Find your state’s early intervention contact to get the process started and familiarize yourself with key terms and language. Special Education and Related Services. Students with developmental disabilities may be eligible for special education and related services that provide Individualized Education Programs (IEPs). The Center for Parent Information and Resources breaks the IEP process down into 10 basic steps. A teacher, parent or doctor noting that a child struggles in the classroom will kick off the referral process for an IEP, during which the student is evaluated with parental consent. The update to the Individuals with Disabilities Education Act (IDEA) made parents a member of their child’s education team. Now, within 30 days of your child becoming eligible, you can partner with the school to develop an IEP that outlines goals and supports to help your child succeed. Assistive technology is often used in the classroom to benefit students of all ages with a developmental disability. For more information, Understood.org’s extensive section on school and learning has details on your child’s rights in the classroom, choosing or changing schools, tutoring and more. If you still have questions about special education read “Questions Often Asked by Parents about Special Education Services.”

Close family, who died within days of each other, will have joint funeral

by Kevin Allenspach from SCTimes.com
Funerals are a difficult time for any family. Friday could be specially taxing for Kim Butkowski and her three brothers.
Their sister, Sandy Schulte, died last Friday at 57 after a long illness. Less than 24 hours later, their mother, 76-year-old Sharon Schulte, succumbed to complications from lung and brain cancer. And on Tuesday, their father, 77-year-old Thomas Schulte also died after a stay at Quiet Oaks Hospice Home.
A joint funeral is scheduled for 11 a.m. Friday at Williams Dingmann Family Funeral Home in St. Cloud.
“Sandy was born with Down syndrome,” said Butkowski, 56. “She was the oldest of us kids and my mom and dad promised they were going to keep her at home with them as long as they could. She functioned at the level of a 4-year-old ... Sandy’s health had deteriorated the last couple of years and she got real weak. She had trouble walking and was to the point where she couldn’t feed herself. I think she aged very rapidly...

a place that four women with disabilities can call their home

by Phil Garber from the Mount Olive Chronicle:

MOUNT OLIVE TWP.  – Four women with developmentally disabilites from the area will soon have a new home thanks to the parents of a young woman with Down syndrome and a statewide advocacy organization.

And while the new home is no doubt a God-send to the four women, an estimated 8,000 other people with disabilities who cannot live independently remain on a waiting list for group housing that is expected to last for another 15 years.

The newest group home in Harmony Township is under the auspices of Advancing Opportunities, formerly known as Cerebral Palsy of New Jersey, with its northern office in Budd Lake.  It is the organization’s sixth group home in the region, serving  41 residents. The first home opened in Randolph  in  August 2002 while others have opened in Roxbury, Parsippany, Emerson and Demarest.

The latest home was named in honor of Melissa Gentle, a 37-year-old woman with Down syndrome.  An open house to celebrate the completion of the home was held on Tuesday, Oct. 22.

Valerie Weber, residential coordinator at the Advancing Opportunities Budd Lake office, said the opening comes four years after Gentle’s parents first began seeking support for a new group home for their daughter.

The residents range in age from 28 to 60 and have varying degrees of disabilities, though none require constant one to  one support.

Olympic runner’s world record attempt to benefit Nat’l Down Syndrome Soc.

By Catherine Holland from AZ Family.com:

PHOENIX – When professional runner Andrew Lemoncello and his wife, Julie, welcomed their first child, Isla, in June, they were stunned to learn that she has Down Syndrome.

“It kind of took us by shock,” Lemoncello, who lives in Flagstaff, told 3TV’s Kaley O’Kelley.

Couple accused of neglecting daughter with Down syndrome

from WHAS11.com:
CARROLLTON, Ky. -- A Carroll County, Ky. couple was arrested Wednesday afternoon on allegations they neglected their daughter who has Down Syndrome.
Police said an investigation showed that the victim’s father, Billy Ray Mertz, 46, and step-mother, Robin Mertz, 34, allegedly kept their 23-year-old daughter in an upstairs bathroom for weeks at a time.
The victim was also kept in a basement bedroom that was closed off using boards that were screwed into the wall to keep the door from opening.

During the investigation, police said they learned that the victim was deprived of food while she was locked in the rooms.  She reported weighed approximately 189 pounds when she first came to live with the Mertz family in 2009 and weighed only 86 pounds when she was removed from the home, police said.
The victim is currently in foster care with Adult Protective Services, but family members are questioning the validity of the story from police.

Registration For Learning Program Online - a great opportunity

September 2013    We are pleased to invite you to participate in 2013-2014 LP Online, the online learning community based on DSF's The Learning Program™. The Learning Program™ utilizes current research on best practices and effective teaching strategies to improve educational outcomes for children with Down syndrome.  For more information, visit www.dsfoc.org or click here. The LP Online will consist of ten sessions from our Level 1 class offered through Webex seminars in live and recorded formats.  Level 1 is for parents of children with Down syndrome between 3 and 6 years of age who are interested in support with vocabulary expansion, sight word acquisition, sentence building, personalized materials, and early number concepts.   PROGRAM DATES/TIMES:  (All live sessions are broadcast at 9:30 a.m. PST) September 16 October 11  November 15  December 6  January 10  February 7  March 7  April 17  May 9  June 6

Jenny Hatch, woman with Down syndrome, can live with friends

from USA Today:
 A 29-year-old Virginia woman with Down syndrome has prevailed over her parents in a guardianship case that allows her to live with her friends instead of in a group home.Margaret Jean "Jenny" Hatch has been fighting for nearly a year for the right to move in with friends, couple Jim Talbert and Kelly Morris, who employed her at their thrift shop.
Hatch's mother, Julia Ross, and stepfather, Richard Ross, filed for guardianship against her wishes. The Rosses argue Hatch needs the support and safety of a group home.
In their request for guardianship, Hatch's mother and stepfather asked for the right to decide where she lives, what medical treatment she receives and who she can see. They believed the group home setting offered the safest environment, The Washington Post reports.
On Friday, Newport News, Va., Circuit Judge David Pugh ruled that Hatch is incapable of being independent and requires a legal guardian for her care, but that he must consider her wishes regarding whom her guardian should be.
The judge gave Talbert and Morris custody of Hatch for the next year, a victory for disability advocates.
After the hearing, an elated Hatch called Talbert and Morris her "family" and said it was great to be going "home" with them, the Daily Press in Hampton Roads, Va., reports.
During court proceedings, Hatch sat on the opposite side of the room from her parents, next to Talbert and Morris. Behind Hatch sat more than a dozen supporters from the Hampton Roads area, several with the words "Justice for Jenny" written on T-shirts and bracelets, The Washington Post reports.
Facebook group Justice for Jenny has more than 3,500 likes.
Susan Mizner, disability counsel for the American Civil Liberties Union, said, "This decision is a big step in the right direction. ... Guardianship raises grave concerns because it strips people of their fundamental right to live with independence, freedom and dignity. Disability is no excuse to deprive someone of her basic civil liberties, and we are thrilled that Jenny will get some control of her life back."
Contributing: The Associated Press
Follow reporter Natalie DiBlasio on Twitter at @ndiblasio.

Parents Help Detect Sleep Problems In Children With Down Syndrome

from About My Area:
A recent study has found that parents play an important part in screening for sleep problems in children with Down syndrome.
These children often suffer from obstructive sleep apnoea, a condition which affects their breathing during sleep. Health professionals rely on parents' reports about their child's sleep, including restlessness, snoring and other forms of noisy breathing, when screening for the condition.
In the past, there has been some uncertainty among health professionals about the accuracy of these reports. However, this study, by a researcher at the University of Portsmouth, shows parents' reports are backed up by objective measures of activity during sleep and sound recordings.
This finding could help health professionals diagnose the condition, which can lead to an improvement in a child's ability to learn. In some cases, specific behavioural problems are attributed to a child's learning disability, when the cause is obstructive sleep apnoea, a treatable condition. 

Growing up with Down Syndrome

from Longview News-Journal by Robin Aaron:
Meredith Brooks is the mother of two little girls, Halle, 4 and Kate, 14 months. Both her daughters are a joy she says, but one of her daughters requires a different type of developmental attention. Kate has Down Syndrome.

Having grown up here in Bowie County as the daughter of Bates Family Funeral Home Director Robbie Bates, she says she had little exposure to the condition that would become closely related to her family.

“I did know a little bit,” Meredith said. “Sadly unless you’re in that situation dealing with a Down’s child, you can’t know what it’s like.”

Meredith Brooks now resides in Colorado. Two months after she and her husband moved there in June 2011, Kate was born.

The family was overjoyed at her arrival and say she looked exactly like her big sister.

“We had no idea she had Down’s till three days after her birth.”

Doctors also found out that baby Kate had four holes in her heart. As of now, three of those have healed. Doctors believe the final one will heal on its own.

According to Brooks, there are a great many misconceptions about Down Syndrome. One of these is the belief that it mainly strikes children whose mothers are ages 35 and older. At least 80 percent of parents of Down’s children are under 35.

The Brooks chose not to do all the invasive prenatal tests because of their faith.

“We had no reason to believe she would not be healthy,” Brooks said.

Since that time, the Brooks say they have learned so much from their youngest daughter about how to look at life and they can’t imagine being without her.

As long as children with Down’s are enriched they can do most anything normal children can do. Infact, Meredith says, Kate beat her sis on some of her developmental Milestones.

It is a misconception that children like Kate are stupid. Now these children are helped early on and are able to do anything most children are able to do. Proper training and therapy are important. Many of them still have decent IQ levels.

“Down Syndrome is a condition, but she is a child just like anybody else and deserves opportunity just like anybody else,” Books said.

According to Meredith, she and her husband have been saddened to discover that early testing produces a lot of false positives and negatives. Sadly 90 percent who learn that their child will be born with Down’s choose abortion.

“That is one of the saddest things to us,” She said. There are about 6,000 Downs children born in US annually. There is no particular race, nationality or religion that it affects.”

Kate’s song, her mom says is sung by Bill and Gloria Gaither. It says “I am a Promise, I am a possibility.”

What you need to know about children with Down syndrome

by Anne Hart from Savannah Now:
When it comes to explaining her son’s Down syndrome to the general public, Wendy Tobiasz’s approach is refreshingly simple and downright honest: Joshua is “more alike than different,” she says.
“A child with Down syndrome is much more like you than different from you,’’ the Wilmington Islander said of her son, a first-grader at May Howard Elementary. “They love their family and friends and want to be loved back. They have things they are great at and things that are hard. They are funny, silly, energetic, naughty and sweet. They get their feelings hurt. They are proud when they accomplish something good. They get into trouble. They want to fall in love, have a job and live independently — and the list goes on and on.”
Which is why it makes so much sense that children with Down syndrome are in mainstream classrooms and playing mainstream sports. Many adults with the condition have jobs and live independently.
“If you feel it, struggle with it or want it, then someone with Down syndrome does, too,” Tobiasz said.
A photo of Joshua, 7, smiling in his karate uniform was among 200 chosen from 1,000 worldwide to appear in the New York City Buddy Walk Times Square video presentation this year. The video presentation will be followed by the NYC Buddy Walk.
The goals of the Buddy Walks — held in 250 cities nationwide in October, including Savannah — are to promote acceptance and inclusion of people with Down syndrome and to positively influence local and national policy and practice.
Despite huge efforts for public education about Down syndrome, Tobiasz said, unfortunately many antiquated stereotypes persist — including that children with DS can’t learn or “do” what typical kids do.
Her son and other children with DS daily shatter those stereotypes.
Joshua’s knack for sports — mainstream karate, basketball, T-ball, soccer — particularly helps to extinguish any misconceptions.
“People with DS are life-long learners,” Tobiasz said. “They may need adjustments in their learning style or to progress at a slower pace, but they can learn and ‘do’ just about anything.”

What parents need to know
In anticipation of the Seventh Annual Lowcountry Down Syndrome Society Buddy Walk Festival in Forsyth Park on Oct. 6, local parents of children with Down syndrome shared what they say parents of a child newly diagnosed with the condition need to know.
“First and foremost, they should be congratulated on their new gorgeous baby,’’ Tobiasz said. “Then they should simply love and care for him or her as any baby needs. The path they find themselves on isn’t the path they expected, but it is a beautiful and magical path. The emotions are overwhelming in the beginning, but rest assured that they will love their baby fiercely.”

Joe Marchese, a well-known local advocate for Down syndrome awareness, treasurer of the Lowcountry Down Syndrome Society and the father of three girls including Ella, who has DS, shared the following tips for parents:
1. Start speech therapy at 3 months old. “I know that they cannot speak, but the muscles needed for speech in the mouth and tongue need to be developed.” Always use a sippy cup with small round spouts.
2. Encourage swinging and spinning during play time. The sensory movements develop connections in the brain.
3. Communicate appropriate stages of development. For example, tell her grandmother that Ella will not walk until she is 3. Then when she walks at 2, it is a great success.
4. Teach your child sign language. Knowing where it hurts is a great help in making it better.
5. Find a doctor who loves all children.
6. Watch Aimee Mullins’ “The Opportunity of Adversity” on TED.com.

7. Stand firm on inclusion.
8. Remember that your child is perfectly made.

And I have to add: Join the Lowcountry Down Syndrome Society, because this group’s enthusiastic, informative and positive families are certain to be a huge support. Contact the Lowcountry Down Syndrome Society at ldssga.org or email jmarchese@ldssga.org

Passing love on: Families cope with continuing care

By Lois M. Collins, Deseret News:

Julie Kvam does a stiff-legged little hop down the staircase, skipping the last two carpeted steps. She lands upright with a curtsy and a slight nod of her curly blonde head. Then she grins as if she'd just aced an Olympic hurdling event.

"Ta-da!" the 51-year-old proclaims loudly before walking to the dining room table to ruffle her dad's hair.

Russell Kvam is the most important person in her life these days. He cooks for her, takes her places, speaks for her, keeps her safe and loves her whole-heartedly. But he is also 83 years old and he knows he won't always be able to care for her. Both are healthy, but she is aging at an accelerated pace, common for someone with Down syndrome. And he is, he admits, growing old as a natural course of events.

Caring for her is very different than it was when she was a baby whom he or his wife Pat could pick up. Pat died a few years ago. He has swapped youth and vigor for experience. While time has increased Julie's size and some of her physical abilities, she will never grow up in a traditional sense. Nor will she ever be able to live independently. While he's done his best to line things up, eventually her care will pass to others; he's confident her two older brothers will see that her needs are well met.

Disabling conditions

Family provides the bulk of care for individuals with severe disabling conditions who cannot take care of themselves. Sometimes, the sheer work of physical care changes as small bodies become adult-sized. Time doesn't stand still for their caregivers, either, who may find a task that was doable at 40 quite daunting at 70.

New Yorker Patrick Donohue thinks about that a lot as he carries his daughter Sarah Jane, now 7, with him. She suffered a traumatic brain injury at the hands of a nurse when she was five days old and has never walked or talked or fed herself, though he hopes someday she will. He is 41 and throws all of his energy into a foundation that bears her name to help drive policy and research he hopes will let her one day be independent. In the meantime, he worries that because she's an only child who should live a normal lifespan, he will likely not always be her main source of support. No one waits as backup in the wings.

Who will take over care and what it will look like is never far from the thoughts of aging caregivers, a population nearly impossible to quantify, though there are hints. For example, 400,000 Americans live with Down syndrome, their disabilities a spectrum from mildly impaired to dependent. Brain injuries also cross a spectrum, but each year, 750,000 Americans suffer one severe enough to require emergency care. Hundreds of thousands of Americans live with severe developmental disabilities and physical injuries and diseases that mean they will likely always require care.

As health care and education options improve and those who are frail live longer and more fulfilling lives, even more parents must plan care for when they can no longer provide it. With Down syndrome, for instance, the life expectancy was 25 in 1983; some now live into their 70s, said Beth Finkelstein, executive vice president of the New York-based National Down Syndrome Society.

"It's really important for families to plan ahead for aging and for the transition," Finkelstein said.

The plan itself hinges not only on the individual's disability, but the family's resources, whether other relatives will step up and much more. Details combine to determine if someone needs a group home, in-home assistance or nursing home care and whether resources exist to make it possible. It all involves adjustment and perhaps a physical move.

"It needs a purposeful trajectory," said Finkelstein, who noted that love and companionship flow both ways and such an intertwining of lives must be handled with care.

Beyond family

Society, including governments, need to plan, too. Expanded lifespans, a growing population and budget-crushed economies make it hard to meet all the needs for assistance, Finkelstein said. Out-of-home placement is not easy to find, waiting lists long. Still, she said, the solution that's chosen may be less important than coming to it before there's a crisis.

Mary Noble did that. The retired school teacher from Idaho Falls, Idaho, moved her daughter Patti, now 46, into assisted living a decade ago because her health and medication management had become too complicated to handle at home.

Noble was pregnant with twins when she contracted rubella. Patti, the smaller twin, suffered the effects while her sister, Becky, didn't. Patti is legally blind, has dwarfism and a disease that affects joints and muscles. She has had four joint replacements — three for her hips and one knee — and uses a wheelchair. She was born with one kidney, which has created other complications.

Her parents, who are divorced, share guardianship and have provided for her in their wills. Twin Becky looks after her, too, Noble said. One day, the responsibility will be hers.

Different conditions and paths

Osteogenesis imperfecta — a collagen disorder whose primary feature is brittle bones — brings no mental impairment, so those who have it experience a very different trajectory than, say, someone with a developmental disability. Most with OI will attend college and have careers and raise families, said Mary Beth Huber, director of program services for the Osteogenesis Imperfecta Foundation, based in Gaithersburg, Md.

Still, some will require care their entire lives. Planning and preparation matter.

"There is much more training for independence than in the past," she said — a truth that crosses medical conditions. Even language reflects it. What were called "pediatric conditions" in part because one sometimes did not get to grow up are now called "pediatric onset," meaning it started, but does not end in childhood.

A rehabilitation expert at the Virginia Commonwealth University Medical Center in Richmond, Va., Jeffrey S. Kreutzer, professor of neurosurgery and psychiatry, helps whole families cope with the aftermath of such brain insults as traumatic brain injury, Parkinson's, tumors and prefrontal dementia, among others. His team looks at emotional, cognitive and physical well-being of the affected person and those who support him.

"One of the core concepts of care is to understand where people are in the life cycle," Kreutzer said. Regardless of the condition, families need education to understand its characteristics and available resources, along with emotional or psychological support and skill building. That three-part approach to managing chronic illness or severe disability helps families hold it together and move forward, he said.

Kreutzer has noticed a progression with caregiving that's fairly typical. He talks of a 40-year-old who was assaulted; the resulting bleeding in his brain left him dependent on others. For a time, he lived with his parents. After they died, he moved to another state to live with his sister. "That's one rule of thumb," Kreutzer said. "Immediate family members tend to take care of the person. A person can get 'passed down' to family members."

Because she has no siblings, 7-year-old Sarah Jane's prospects could be more limited, Donohue said. It bothers him that systems of outside-of-family help focus so heavily on long-term care designed for the elderly. If something happened to him, his daughter would not belong in nursing homes designed for geriatric cases, any more than a young soldier wounded in war belongs with octogenarians, he said.

Crafting transitions

Whatever happens to Julie Kvam, it will not be her first transition. When she was young, she went to a specialized school and lived for several years in a small group home, her family near. They lived in Washington then, where her dad was a railroad station agent, her mom the postmaster. They moved to Arizona when they retired and it was there that Pat Kvam suffered a stroke and Russell Kvam cared for her, too. Pat never recovered from the stroke. Eventually, they moved to Utah to be near one of their sons and, finally, Pat moved into full-time care.

They always encouraged Julie's interests and talents, something that matters in spite of disability. Huber said as children age, it's crucial to nurture their spirits and help them grow up as much as possible, to take risks that are appropriate, to live full lives. She likes a book, "Reflections of a Different Journey," a series of interviews with adults with disabilities. The authors asked what the subjects wish their parents had known. "Time after time, they said that 'when my parent encouraged me to be my best, to follow my dream, even though it was hard for both of us, those are the things I'm most grateful for,'" Huber said.

It comes down, she said, to accepting some risk. Allowing a baby with brittle bones to roll over is both risky and emotionally hard. But it's an important milestone. The challenges just get bigger. "What do you do when a child does not want an aide in school any more, when the child is ready to drive. ... Every stage requires assessing risk," she said.

The Kvams taught Julie to swim and bowl. She's pedaled "probably 40,000 miles." He takes her with him to the store, where she lights up and strangers smile at her infectious demeanor. "She's a happy girl," he said, who likes to hide his stuff and giggles and talks to herself. Her "pacifier" is a pair of sticks from pompoms now long gone. They are always nearby, a soother.

Such details are part of care's transition. Finkelstein said families sometimes make know-me books that outline not only medications and mannerisms, but words that will calm when the child is upset or what television shows or treats bring pleasure. It's knowledge only a caregiver can share. And it, like the person being cared for, can be passed on with love.

Ad Campaign Casting Call for Infantino and Step 2

from Parents by Jessica Hester:
Everybody plays. That’s the motto of a campaign from kids’ gear companies Infantino and Step 2. Infantino brand manager Colette Cosky became committed to celebrating the awesome uniqueness of every child after giving birth to her son Dexter, who has Down syndrome. It’s also a message that we take to heart at Parents: we’re proud that our stories and photos feature kids of all abilities and appearances. (Check out the sweet sibling story “Dake” from our recent August issue.)
That’s why we’re so excited that Infantino is hosting an open casting call for kids of all shapes, sizes, and needs to star in an upcoming ad campaign. Even better: the photos will be shot by our friend Kelle Hampton, a mega-popular mom blogger and author whose second daughter, Nella, was also born with Down syndrome. (Kelle shared Nella’s birth story with us—it’s a tear-jerker!) Kelle shot this cute photo for last year’s campaign.
Is your child ready for her close-up? Kids must be 5 years or younger, live in Southern California, and not be represented by a modeling agency. If your tot fits the bill, send her name, age, date of birth, and a recent close-up and full-body snapshot to castingcall@infantino.com. Submit your kid’s photo by 09/10/12 for a chance to be considered.

Mom still advocating for her son and others with Down syndrome

from the Daily Herald by Susan Dibble:

From the moment Marjorie Sullivan Lee learned her newborn son, Kevin, had Down syndrome she became his advocate.

Dismissing her pediatrician’s suggestion that Kevin be placed in an institution, Lee and her husband, John, decided Kevin would grow up at home with his five older siblings and be part of the community. That wasn’t necessarily the norm in 1960.

Lee battled school officials for years to let Kevin attend a regular school until he became the first person with Down syndrome to graduate from Glenbard East High School in Lombard.

After his graduation, she rejected the idea his only source of employment could be a sheltered workshop. She worked with other parents to start the Parents Alliance Employment Project that, 30 years later, still is finding job opportunities for people with cognitive disabilities.

At age 90, Lee isn’t through. She’s still Kevin’s caregiver and recently published a book, “Bloom Where You Are Planted,” the story of their family and their love for Kevin.

“I have a message to let people realize you can have a good life in spite of being diagnosed with Down syndrome,” Lee said.

She said she believes that message is needed in a society where parents have the option to abort if they learn their child will be born with a disability. She also wants parents who have children with disabilities to realize that, despite the progress, all the problems with providing inclusion aren’t yet solved.

Finally, she emphasizes that people with cognitive disabilities want to be part of the larger community, despite arguments from some quarters they would rather be with their “own kind.”

“I want my son to be part of the normal community, but I don’t believe in working just for my son; I believe in working for other people like him,” Lee said. “I have often rubbed people the wrong way. A lot of people don’t agree with me.”

Lou Brown, professor emeritus of special education at the University of Wisconsin-Madison, said Lee was in the forefront of those working to include people with cognitive disabilities in society when her son was in school.

Madison already was practicing inclusion in its schools, but northern Illinois wasn’t when Lee sought his help and advice.

“She took on the establishment. She was a pioneer. She was tenacious. She was smart,” he said. “She was part of a movement.”

Challenge the norm

When Kevin was born, Lee said she had little personal experience with people with disabilities despite a stint as an administrative assistant at Easter Seals.

“Kevin was a whole new world to me,” she said.

She jumped into that world with both feet. She became part of a group of mothers who contacted other mothers of newborns in the hospital to urge them to take home their Down syndrome babies and love them as their other children. The program led to the founding of the National Association of Down syndrome, with Lee’s husband as its first president.

Lee will have a table displaying her book when the group holds a “Celebrating Down syndrome” conference Sept. 29 in Rosemont.

Her Catholic faith led her to take the stance she did, but even the religious establishment didn’t always get it right, Lee said.

She and her husband rejected a young priest’s offer to give Kevin a private baptism. Instead Lee encouraged a friend to tell everyone in their parish and neighborhood that her newborn son had Down syndrome.

Later, she and her husband worked with a group of other parents to provide religious special education for children who previously were denied access to confirmation and the Holy Eucharist.

Education was an ongoing battle. During Kevin’s formative years in Lombard, he was sent to four or five different schools, all well outside his neighborhood. Only when a federal law that was passed in 1975 emphasized that students should be placed in “the least restrictive environment” were the Lees able to argue successfully — after a two-year appeal process — that their son should attend the neighborhood high school.

Kevin entered Glenbard East High School at age 17 and graduated four years later in 1982.

Being around peers his own age led Kevin to assert more independence, Lee said. He began choosing his own school lunches and pushed the plaid pants his mother had bought for him to the back of the closet. Lee rejoiced in her son’s development.

Kevin also joined the high school wrestling team and, despite a lot of bench warming, rode the team bus to other schools and participated in some demonstration matches.

Lee said school administrators who once resisted her insistence that Kevin be part of the regular student population later became supporters of inclusion.

“Eventually over the years, people suddenly were on the same team as me,” she said.

Kevin’s graduation from high school brought new challenges. A Special Education Parents Alliance she and her husband helped create started focusing on finding employment opportunities for young adults, and eventually changed its name to the Parents Alliance Employment Project.

Lee served as the unpaid program director for six years and will be honored as the keynote speaker when the Lisle-based group celebrates its 30th anniversary in October. Brown said the Parents Alliance Employment Project helped serve as a model for other programs.

“What they did there was influential all over the country,” he said. “She (Lee) doesn’t really know the effect she’s had on other people locally and nationally.”

Views on inclusion

Jane Hodgkinson, the former executive director of Western DuPage Special Recreation Association, served on the Parents Alliance Employment Project board for 16 or 17 years.

She laughs when she recalls how Lee asked her to join. A proponent of full inclusion, Lee considered the special recreation programs WDSRA offered a type of segregation.

“I just want you to know I don’t agree with what you do, but your constituents really like you,” Lee told Hodgkinson.

Hodgkinson said when the fledging organization needed a desk, the Lees might take one out of their own home, and on a few occasions paid the one staff person out of their own pockets.

“Marjorie was absolutely the driving force for the board,” Hodgkinson said.

She and Lee became friends, although they never reached an agreement on their views of inclusion. Hodgkinson said parents should decide when inclusion is appropriate for their children, and sometimes separate activities give children with disabilities opportunities they would not have otherwise.

“In Marjorie’s quest to find Kevin only inclusive activities, it’s held him back,” she said.

But Hodgkinson has never doubted Lee’s love for her son. She admired the Lee family’s togetherness and said she held up Lee as an example to other parents of how to be advocates for their children.

“She is a remarkable woman,” Hodgkinson said. “She is not waiting for anything. She is still going to be an advocate at her age.”

Life today

Lee and Kevin, now 51, now live in a condo near the College of DuPage in Glen Ellyn and have long taken advantage of its programs. Kevin has a transcript covering 30 years of physical education and individualized reading credits.

Jeanne Madoch, a former adjunct instructor at COD, worked with Kevin in a self-structured fitness program for about a dozen years. Madoch said she met Lee and her husband when they were taking a water aerobics class and Lee began talking about Kevin.

“She’s always searching for more things for him to do,” she said. “She’s a go-getter. She has a cause.”

Although not as outgoing as his mother, Kevin clearly has enjoyed the contacts his COD activities have given him, Madoch said.

“He’s funny. He’s got a real sense of humor. He’s quite the character,” she said.

Paid employment didn’t work out for Kevin, but for the past 20 years he has volunteered one day a week shredding documents at a government agency. He’s traveled independently by plane to visit his siblings in other states and shares housekeeping duties with his mother.

While he doesn’t drive, he’s mechanically adept. When the family had a vacation home in Michigan, Kevin drove the small tractor mower. He’s an expert on the remote controls for the TV, DVD and VHS, and has limited skills on the laptop computer.

After Parkinson’s disease required his father to use a wheelchair, Kevin became adept at folding the chair and assembling the lift that allowed the chair to be loaded in the trunk of the car.

Kevin’s father died seven years ago. Lee said the need to be responsible for Kevin has kept her going, but she is realistic about her own mortality. She said her hope is that Kevin will be able to continue to live in their condo with some support after she is gone.

“He is a good man,” she said. “He has a great deal of empathy for people ... He’s accomplished a lot more than we dared to hope.”

Lee’s book, “Bloom Where You Are Planted,” is available from the publisher at www.Tau-Publishing.com and at Bundles of Books & Gifts, 560 Crescent Blvd., Glen Ellyn.