Speaking up for Down Syndrome: 'Super Normal' people who just want to be treated like everyone else

Speak out so you can blend in. It sounds contradictory until you hear the rest of the story. People with Down syndrome are intentionally drawing attention to themselves so they can be seen and treated just like everybody else.

Matt Bloodsworth, a 36-year-old Beaumont man with Down syndrome (DS), and his mother, Cindy Bloodsworth Jeanis, have spent Matt’s lifetime stepping out into the spotlight — speaking up and fighting for the same opportunities as other people his age.

Bloodsworth speaks to community groups and state and federal lawmakers explaining what life is like for someone with Down syndrome. He currently serves as chapter president of Southeast Texas Self Advocates and as a member of the Texas Advocates board. He wants people to see the things he is able to do, that he is living a meaningful, independent life, and that there are many people like him who contribute and bring joy to their families and friends.

“As an advocate, I think it’s about our abilities and how to make things work to make more out of our lives. Focus on abilities,” Bloodsworth said. “I talk about my life, how to feel being Down syndrome.”

And from the way he explains it, it appears he is living a typical life with some supports. He lives in a group home away from his parents, takes the bus to work, manages his budget, pays his bills and buys his groceries. Bloodsworth said, “I am more responsible and I am more independent. And I have learned how to take care of myself. I am a responsible man.”

Jeanis says she has encouraged him to keep his voice loud.

“Not everybody understands, so part of his job is to help people understand. We can’t change everybody, but we can fight for what we think is the right thing,” she said.

Bloodsworth was the first child with DS in the Beaumont Independent School District to be mainstreamed into a regular kindergarten class. Jeanis said the move was good for him and for the other children in his class.

Jeanis said, “I think all the years of inclusion in school systems are paying off. The children who had the opportunity to go to school with Matt and people like him have grown up and don’t see anything wrong with including people with disabilities.”

Teri Hawthorne, executive director at The Arc of Greater Beaumont, said, “I think that over the years, we have seen a shift in acceptance. We’ve seen, as these children are mainstreamed into classrooms and they are literally a peer with children in their grade, that just lends itself to the children becoming friends. They see this child every day, the child runs with them in PE, sings with them in choir, plays with them in band, and so why wouldn’t they see that person as an equal? So I do think that change has happened.”

“A Summary of the Evidence on Inclusive Education,” a 2016 report on 280 research studies by Dr. Thomas Hehir at the Harvard Graduate School of Education, published in partnership with Abt Associates, says, “A large body of research indicates that included students develop stronger skills in reading and mathematics, have higher rates of attendance, are less likely to have behavioral problems, and are more likely to complete secondary school than students who have not been included. As adults, students with disabilities who have been included are more likely to be enrolled in postsecondary education, and to be employed or living independently. Among children with Down syndrome, there is evidence that the amount of time spent with typically developing peers is associated with a range of academic and social benefits, such as improved memory and stronger language and literacy skills.”

The study found the percentage of U.S. students with intellectual disabilities who spend 40 percent or more of their school day in classrooms with non-disabled peers has grown from 27 percent to 44 percent in nearly 30 years.

People with DS are realizing more opportunities to be heard and understood as they are being accepted on the national stage and in media and advertising. Earlier this year, Gerber selected a baby who has Down syndrome to be the new face of the baby food company. Last fall, the first woman with Down syndrome competed in the Miss USA pageant, and the 22-year-old won the Spirit of Miss USA award and the Director’s award. Retailers, such as Target, Nordstrom, OshKosh and Walgreens, have all included models with DS in their product ads.

Hawthorne said, “For us to see that baby get selected as the spokesperson for Gerber is meaningful on many different levels. The child was just picked for being himself, Lucas. If you ask any parent, that would be the most profound thing. It wasn’t that a baby with Down syndrome was picked to represent a Down syndrome product. It was because he had an infectious smile and Gerber picked him. That is what we strive to do. You would see a person with Down syndrome as that person, not as their disability. And that’s exactly what Gerber did. And we’re happy that it has raised the awareness. For me that’s a game changer. We are now seeing past the disability, we are seeing a person and that’s what we want.”

What is Down syndrome (DS)?

Down syndrome is a genetic condition in which an extra copy of the 21st chromosome is produced. It is not caused by anything either parent did or did not do. About 400,000 people in the United States have DS. One in 700 U.S. babies is born with it. Currently, the average life expectancy for people with DS is about 60 years. It is marked by cognitive delays, intellectual disabilities and increased risk of other medical conditions.

“Because of their genetic disorder, they’ve got extra information and it puts them at risk for several things. Depending on how much extra information they’ve got, you can have kids that are profoundly delayed and kids that are moderately delayed,” said Carl Hubbell, M.D., of Beaumont Pediatric Center, a pediatrician who treats children and babies with Down syndrome as part of his practice.

Dr. Hubbell continued, “They are going to be delayed and they are going to reach their milestones at different times than the average child without (DS). Within the population of (DS) themselves, they are likely to have variability when they obtain their milestones. None of them are alike.”

Their medical issues can include but are not limited to heart defects, hypothyroidism, blood disorders particularly leukemias, laxity to ligaments and tendons, weak muscles, ear and sinus problems and sleep disorders, he explained.

Early start improves capabilities

Dr. Hubbell emphasized the importance of early intervention to give them a better chance of catching up.

“You have got to be very intensive with them. You’ve got to get them into the early childhood intervention programs. You’ve got to get them into physical therapy, occupational therapy, speech therapy, because the more you expose these, kids the better outcome it is,” he said. “When I was a kid, the Down syndrome kids were institutionalized for the most part. Most of them went to institutions where they were locked away and nobody paid any attention to them. Those kids suffered terribly because they didn’t get the stimulation that they needed to develop their milestones.”

From birth to age 3, the Early Childhood Intervention program (ECI) at the Spindletop Center in Beaumont is a key step offering a variety of services including physical therapy, occupational therapy, speech and hearing therapy, and nutrition services in the child’s home setting. Sarah Hardin, the program’s public awareness coordinator, said, “Each child has their team and everybody is on the same game plan. After they sit down with the parents and family, they are always working toward reaching the goals that have been set. Whenever the child is coming up on their third birthday, if they still need therapy, we help transition them to the school district.”

ECI services are covered through Medicaid and private insurance.

When they reach their third birthday, the school districts accept them into specialized education programs and create individual education plans that guide the child’s learning and development until the age of 21.

Jeanis recalled, “Matt was able to enjoy a balanced public school education at Beaumont Independent School District. Those were really great times. I didn’t realize it at that time, but that was the most support that we would ever have for Matt’s lifetime.”

Smoothing the rough patches

Because the support is less and the funding is inadequate after public school drops off, adults with Down syndrome are still struggling to find organized programs as they seek to achieve balanced, independent and fulfilling lives.

Jeanis said, “Once (Matt) graduated from high school, it was like falling off a cliff. He went from having a routine and structured activities, access to being engaged with other people every day, to being home alone. His dad and I both worked. He had the phone and the TV to keep him company all day while we went to work. It was a very painful time for him and for us to have the harsh social isolation that occurred with him leaving the public school system.”

Because of experiences like that, The Arc of Beaumont was launched in 2006 by a local group of concerned parents, including Jeanis, who were looking for social and recreational activities for their adult children. The Arc offers social and recreational programs, as well as support and outreach, for 300-400 Southeast Texas families touched by DS and other intellectual and developmental disabilities.

Hawthorne said, “What we really try to do is education and support for families. If you are a young family and have a child with a disability, as much as we want to encourage you and support you and show you that there is going to be joy, we also know that you are going to face some bumps in the road that you may not have otherwise faced.”

Rose Garcia, whose 3-year-old, A.J., has Down syndrome, values the recommendations and information that her family has received through The Arc’s support group.

She said, “You have so much support. At the very beginning, it’s scary, just because you don’t know what to expect, but just hearing all the different stories, it prepared me. Especially as he’s getting older, I’m expecting certain things. I’m not as worried. I think he’s got a good start, especially with all the people we know.”

Hawthorne said The Arc transitions with the families as needs change, “And then, as their children grow, we provide those social and recreational activities that they need. Everybody loves to have a good time. We have our dances and our social club that provide that opportunity in an environment where they can be themselves and know that they are around a community of people that accept and love them.”

In addition to fun social times and the active 60-member self-advocacy group, the Arc of Beaumont hosts the annual Buddy Walk and a fashion show to raise awareness and funds.

Another group, Adaptive Sports for Kids, hosts sports activities year-round for 250-300 children and adults with special needs, including DS. All the events — baseball, soccer, basketball and cheer — are held at C Doornbos Park in Nederland.

“Most of these kids get a very limited amount of exercise. Their socialization skills need to be worked on. And then the parents, when they come out, they are able to network with other parents and different agencies,” said ASK Board President Allen Nation. “We just disguise all those things into sports.”

A desire to make a difference

Many adults with Down syndrome are able to work and contribute, and just need the opportunity. The Ben Rogers Training Center, a division of Spindletop Center, provides the opportunity for people with disabilities to learn job skills.

Patricia Bowlen, consumer relations specialist at the Spindletop Center, said, “There’s a misunderstanding (that) they are not capable of doing things. They want to stay busy; they want to contribute. When it comes to people with disabilities, they are no different than you and I. They want the same things that you and I want. They want to work and make money so that they can buy their own things.”

Bloodsworth is among the 50 individuals who gather at Ben Rogers every day developing their job skills and working at the facility assembling and packaging products for sale, as well as cutting cloths for rags. Some individuals work on job assignments at other off-site locations providing janitorial services and lawn care.

One of his experienced co-workers, Phyllis Dunbar, explains that she enjoys coming to the training center every day. Her face lights up when she talks about the people there and what they accomplish together.

She said, “I like learning how to do the work because I like making money. I learn how to get a job and work in the community. They look up to me because I have been here a long time.”

Another co-worker, Mike Morrison said he enjoys working at the center, as well as taking part in the entertainment activities available to them, such as a haunted Halloween party, bowling, and going to Astros baseball games.

Parents prep for life’s next stage

Parents of children and adults with Down syndrome are always looking ahead to the next stage as life changes and new situations arise.

Jeanis said, “My goal is always what happens next? What is the next challenge for us? Depending on how long I live, as long as I’m able, I want to try to facilitate the next best arrangement for Matt because life changes. What works this year may not be the best solution for us next year. As a parent, I’m always looking for what other opportunities are out there, trying to prepare for the next phase of life. I’m beginning to think now about who the successor guardian will be for Matt. I’m almost 60 years old; you begin to think about those things.”

Additionally, Jeanis noted the challenge never ends. “There’s always a risk that the … state or federal legislature could change laws that take rights away from our children. It’s our job as voters and as advocates to stay alert and be engaged to fight cuts to services, programs and support for people with disabilities.”

And there’s still prejudice and bullying.

Jeanis recalls the time when she and her son were attending a comedy show in New York City. The comedian’s routine centered on laughing at people with DS. But instead of leaving, they stayed, held their heads high and enjoyed the other comedians in the show. When the evening was over, many audience members who were aghast by the off-color performance made a point to speak to Jeanis and Bloodsworth, showing support and love. It was a learning experience for everyone.

Despite the rough patches and scary journey, parents of people with Down syndrome speak of the rewards and tremendous joy they have encountered.

Jeanis summarized by saying that now is a great time to have a child with DS.

“I think the world is a kinder place. I have found humanity in a lot of people. It has been rewarding to find people, more often than not, are kind to Matt,” she said. “I suspect, based on the feedback I’ve gotten from people over many years, that people generally feel rewarded when they take some time to get to know somebody with a disability.”

ECI’s Hardin, whose 6-year-old daughter Annie has DS, said, “I never would have wanted to have a kid with Down syndrome, but now, I would not change a single hair on her head. It’s a blast. It’s given me the opportunity to teach other people about kids and adults with Down syndrome. They just see her as Annie. She’s super, super normal.”

— Karen Stubblefield

Photo courtesy of the Rotary Club of Beaumont - Matt Bloodsworth and his mother, Cindy Bloodsworth Jeanis, step away from the podium after Matt shared his story of what it’s like to live with Down syndrome at a Beaumont Rotary Club meeting Oct. 25, 2017. Matt wants people to see the things he is able to do, that he is living a meaningful, independent life, and can contribute.