Labor of Love
By Sonia Duggan
Whether by experience or keen observation, many of us know motherhood is not a walk in the park. Every stage, from infant to early adulthood, presents a new set of challenges that eventually they will grow out of. But for mothers of children born with or diagnosed with special needs, the challenges and care are ongoing, often lasting a lifetime, requiring extra doses of love, patience, perseverance, faith and true grit.
Faith not fear
The saying “God has a plan” is one that resounds with Jenger McTee. How else could one explain how she was picked to be the mom of Jarren 12 years ago? After a traumatic delivery, she was told her newborn son had hypoxic ischemic encephalopathy (HIE) as a result of being deprived of oxygen.
Thankfully, Jarren was born to a loving family that included dad Jason, sister Jensen, and a mom who was equipped with a special set of skills that just doesn’t happen that often.
Up until Jarren’s birth, Jenger was working as an occupational therapist, and had been for five years, helping adults with brain injuries. She learned all about different neurological issues unaware she would one day need her skills to help her own son.
“God definitely prepared me,” Jenger said.
Having a baby with disabilities, and not knowing the extent of how severe they were, was difficult for the Farmersville couple in the beginning. Positioning Jarren properly and feeding him posed challenges. “He cried for the first six months so we finally took him to a neurologist and the doctor finally recommended a feeding evaluation where they could watch his ability to swallow,” Jenger said.
The specialist conducting the evaluation guessed almost immediately what was happening. Jarren was crying to protect himself from aspirating so it was suggested they thicken his milk to help aid in swallowing. The results were immediate. “We knew there was issues (feeding) but didn’t know how severe.”
Caring for a child with special needs is expensive and often insurance doesn’t cover what is needed. When Jenger asked about the cost of the therapies Jarren was receiving, she was told their insurance benefit was unlimited. They soon found out that wasn’t the case, and after only 1 ½ months of therapy Jenger got a letter saying she was at her max limit on their policy. Jarren was not even one year old.
The McTees quickly had to figure out how to fund Jarren’s care for the rest of the year. Her sister Jennifer Fetty, extended friends and family stepped up to help and planned a family friendly event. The first year it was called a FunFest and held under the Onion Shed. They had a bounce house, silent auction and sold hot dogs and drinks.
The next year the benefit grew to include a FunFest and a softball tournament. This year will be their 12th year of hosting the fundraiser that now includes a cornhole tournament, 5K and 1-mile fun run, bounce houses, face painting silent auction, barbecue dinner and co-ed softball teams. “We involve as many people as we can,” she said. “It’s kind of grown.”
As a result of the yearly benefit, the McTees opened Jarren a special needs trust to use for therapies, equipment, extra caregiver time and basically anything not covered by insurance.
Insurance challenges are ongoing says Jenger. “After the first year we got on Medicaid program for medically dependent children,” Jenger said. “They were much more accommodating until all of a sudden one year (when he was about 7) he did not qualify.”
The family contacted a disability rights group but were unsuccessful despite continued efforts. As a result, it became even more important than ever to keep doing the benefit.
“Because we have that benefit, we are able to live a normal life and provide for him,” she said. “The brake broke on his wheelchair recently and insurance will pay for upgrades but not repairs. It cost $3,000 for brakes on a wheelchair. Anything that says, ‘medically special’ – they just rack it up – even if they pay 80 percent, my portion is high.”
Communication is vital as a parent but learning ways to do it when your child cannot speak is difficult. At age three Jarren got his first communication device with help from his mom and speech therapist. “His eyes could tell you stories for days,” his mom said. “We just had to figure out what they are saying. Now he has an amazing device and he’s going to town.”
Jarren has also been diagnosed with Cerebral Palsy, a disorder that occurs as a result of a brain injury sustained during fetal development or birth. It is the most common motor disability of childhood according to the CDC and about 1 in 323 children has been identified with CP.
About 2-3 years ago the family met with neurologist and Cerebral Palsy specialist Dr. Jan Brunstrom-Hernandez, known for treating CP patients, and a CP patient herself. “She put him on a couple of medications that helped with muscle issues and the main thing that changed was his head control greatly improved,” Jenger said.
Jarren will soon be a teenager and ‘is one smart cookie,’ says his mom. He attends Farmersville Junior High where he is in resource classes just for basics. “He’s very social and loves to be around the other kids. They (the school) really wanted him to get more of the social aspect as well,” Jenger said. “It’s worked out really, really well.” His mom says he is finding his independence. He can often be found in the stands watching his cousin Reese Fetty playing multiple sports along with his sister, now a freshman at Farmersville High School, and cousin Rendi Fetty.
Jenger says over the years her prayers have even changed. In the past she asked God for Jarren to walk and use his hands, then asked for Jarren to talk to her because ‘he’s got so much to say.’ Then one day Jenger reflected on her prayers she had when she was pregnant. “I asked God that I have kids that are happy, healthy, smart, funny, caring and that’s what he gave me. If I’d have known God would have provided it – that’s what I would have asked for.”
When Julie deGruy’s third daughter, Angelle, was born with Down syndrome 16 years ago she was not surprised. Both Julie and her husband Edwin were aware of their daughter’s diagnosis prior to her birth. Although somewhat frightened what the future would bring, the couple embraced her with open arms. “We had a wonderful support system in both our families, friends and church community,” she said.
Like Jenger, Julie had her own unique set of skills. As a nurse specializing in case management, she knew the potential complications that could arise in a child with Down syndrome.
“Her birth 16 years ago was a bit of a challenge as at this point we may have researched too much -knowing many children with Down syndrome do not make it through the whole birthing process,” she said. “We were well aware of a heart defect prior to her birth and were concerned about what other challenges she would bring.”
Angelle came into the world on October 28, 2002 kicking and screaming, says Julie. “She remained in the hospital for 11 days while being closely monitored as well with hope she would be able to breastfeed,” Julie said. “That was not to be as she was sent home with a feeding tube down her nose.”
At the time, Julie was the sole breadwinner and a lengthy maternity leave was not an option. At four months Angelle had her first open heart surgery to fix two large holes in her heart. Although the surgery was successful, her daughter would be on medications for life. In addition, she required close monitoring because her valve did not form correctly allowing oxygenated and unoxygenated blood to mix leaving her at risk for pulmonary hypertension.
Julie said Angelle still has heart disease and also suffers from Celiac disease, so diet is constantly an issue.
“Being a nurse, I have educated many people about Down syndrome including my own family,” she said. “I have fired physicians who treated all children with Down syndrome the same whether that treatment was needed.”
Ironically, Julie’s job as a nurse involves assisting a physician in identifying patients with extra needs and education. As for her own daughter, the deGruys, Sachse residents since Angelle’s birth, decided to forgo public education, picking a different route that would give her room to flourish.
Angelle went to daycare from almost 2 years old until age 5 at Rise School of Dallas, a school known for its early childhood education services for children with Down syndrome and other developmental disabilities.
“It is modeled after the program Gene Stalling and The University of Alabama put in place,” reported Julie.
“She then attended St. Paul Catholic School for one year prior to transitioning to Notre Dame School of Dallas where she has been since she was 6.”
The family was fortunate, said Julie, to have come up on the HCS waiver list and have a caregiver who assists Angelle with homework, community services and transportation so she can attend Notre Dame School of Dallas. HCS is Medicaid funding to assist with care and needs.
Despite the fact Julie has worked full-time most of Angelle’s life, her daughter clearly is not missing out on any opportunities – her activity schedule just might surpass that of any other teenager.
Angelle participates each year in Special Olympics and belongs to Girl Scouts and the Wylie Elite Joy Cheer Team for youth with Down syndrome.
“She was in Girl Scouts for several years being the only disabled child and now belongs to a group of girls with Down Syndrome,” she said. “We have met many great people through her.”
Angelle has been involved in several local pageants for special needs youth and has been a runway model for two events. “She has participated in Tim Tebow’s Night to Shine Prom as well as her own school prom,” her mom added.
In the summer, the activities don’t stop for Angelle. She’s busy with camp opportunities for youth with Down Syndrome including the Texas Lions Camp in Kerrville under the sponsorship of the Sachse Lion’s Club, an overnight week-long camp hosted by the Methodist Church, and the local H.E.R.O.E.S. day camp in Richardson.
“She loves her activities, and these are her choice, but it also keeps her off her iPad all day as weight gain is always an issue with a child who has Down syndrome,” Julie said.
While no one knows what the future will hold, the deGruys have prepared their older daughters for the fact that they will be her guardian/caregivers in the future. Julie said Angelle is very close to them and texts them almost daily. Alyssa is 26 and lives in New Orleans and Ryan is 24 and currently lives at home while pursuing an advanced degree in the medical field.
“I would not trade my daughter in for anything,” Julie said. “She keeps me young. She makes us laugh. She may have hit major developmental skills later than others her age, but she has reached them. She has friends, she goes to dances, she will be able to work. Overall, she is pretty darn amazing.”
Champion for Autism Awareness
Every April for the past 8-10 years, Lisa Henry-Weaver has tinted her hair blue and painted her nails a broad spectrum of colors. While some people might wonder if she’s having a mid-life crisis, she’s not. She is simply making a statement to raise Autism Awareness.
Lisa, a Wylie real estate broker, knows a thing or two about the disorder. She and husband Mike Weaver, also a realtor, are the parents of a son who was diagnosed with Asperger Syndrome at 6 years old. Although Andrew “Drew” recently turned 26, Lisa doesn’t hesitate to encourage discussion and offer help to other educate parents of autistic children.
“I love doing my hair blue and my nails like the puzzle piece for Autism Awareness every April,” she said. “I get to talk and educate someone every single day of the month and everyone loves it.”
In addition, Lisa tries to post daily social media tidbits of information during Autism Awareness Month.
The autism awareness organization Autism Speaks explains the names and classifications for the disorders on its website stating, “In the past, psychologists and psychiatrists often used the term “pervasive developmental disorders” and “autism spectrum disorders” (ASD) interchangeably. As such, PDD-NOS became the diagnosis applied to children or adults who are on the autism spectrum but do not fully meet the criteria for another ASD such as autistic disorder (sometimes called “classic” autism) or Asperger syndrome.”
In 2018, the Centers for Disease Control and Prevention determined that 1 in 59 children in the United States currently has autism spectrum disorder.
For parents like the Weavers, the diagnosis often comes long after initial concerns are raised.
Lisa noticed issues with Drew before he turned two, not uncommon for the typical age of onset for ASD.
“He had very repetitive behaviors, but because he was not classic non-verbal the doctor didn’t know what it was,” she said. “When he was around 4 years old we had several tests done and they just came back with ‘something is off, but we don’t know what it is – probably will have to wait until he reaches school age.’”
One-third of people diagnosed with ASD are nonverbal like Drew. “When he was 18 months old he was doing 20-24-piece puzzles and didn’t talk at all until age 2 ½,” Lisa said.
ASD can affect the entire body, but it is typically marked by repetitive patterns of behavior, interests or activities. Difficulties with communication, intellectual disabilities and impaired social interactions are also noted. Many people are simply unaware of the types of behaviors in children with ASD and will often rush to judge.
“Friends and family thought it was a behavior issue,” Lisa said. “I would say, ‘Here you take him for a week and see if you can do better.’ Once he was officially diagnosed it was much easier.”
After the diagnosis, life became even more challenging for the Weavers.
“Since Drew was so young and we didn’t know anyone else with Asperger’s Syndrome we were on our own,” Lisa said. “We had a very difficult time finding help until middle school age.”
Research implicates genetics as the cause of ASD in the vast majority of cases. Generally speaking, children born to older parents are at a higher risk for having autism than those born to younger parents. After years of controversy about immunizations and ASD, there is no definitive link between the two.
There are many misconceptions about the disorder. Some identify individuals with autism as being like Dustin Hoffman’s character in “Rain Man” or Russel Crowe’s portrayal in “A Beautiful Mind.” Lisa said one key misconception is that they don’t feel anything. “They do,” she said. “They just don’t really express it like you or I would. People on the spectrum or classic autism have the same feelings we all do, it’s just different.”
Over the years, the family have spent a large chunk of time with doctors and social skills groups. Therapies for those with ASD are varied, and a common misnomer, said Lisa, is that therapies are covered by insurance.
“We paid so much out of pocket over the years, and still are, because most insurance companies exclude autism treatment,” Lisa said.
Finding the right educational fit for students with ASD can be a challenge as well. Lisa said it took a lot of research and phone calls. As Fairview residents, Drew initially attended Lovejoy Elementary and resources were limited at the time. The Special Ed department had to send teachers for training and the Weavers filed a 504 plan with the school district so Drew could have access to the educational services he needed.
In addition to the Asperger’s diagnosis, Drew was later diagnosed with dysgraphia and ADHD plus speech and behavioral issues.
“We fought the public school system for years,” Lisa said. “Finally, in 6th grade we pulled him out and he attended Great Lakes Academy in Plano, a school for children with learning differences and he thrived!”
Unlike public schools, the Academy afforded opportunities such as theatre where every student is included in the school play. “He was so literal in the 6th grade they had a dress rehearsal and he didn’t understand why he had to do it again so he wouldn’t even get out of the car,” Lisa said. “By 9th and 10th grade he had the lead and even played a girl.”
Lisa pushed Drew to learn basic life skills including driving which he has been doing since he was 16. “He can do tasks such as grocery shopping with a list,” Lisa said. “He does all his own laundry and has always assisted with household chores.”
In 11th grade Drew attended Richland Collegiate College but struggled and wanted to graduate where he started, so he went back to Lovejoy. After graduation he attempted to go college and live in a dorm. “Colleges are not set up to help adults on the spectrum,” Lisa said. “Once they are 18 the schools no longer communicate with the parents and leave it up to the kid to ask for help. In Drew’s case, he would not ask.”
The Weavers started working with the disability office in McKinney and were assured that they would help Drew find a job if he got his phlebotomy certificate. “They didn’t,” Lisa said. “So, he went back and got his CNA and was able to find a job.”
A challenge for those with ASD is holding a job because employers don›t understand autism and, in Drew’s case, they wouldn’t work with him said Lisa. “He is now back in school going for radiology and we are back with the disability office getting therapy so he can learn job coping skills,” she said. “Hopefully this will help him keep a job if we can find someone to work with him.”
Lisa and Mike are hopeful that someday Drew can live on his own.
“If you are a business owner, offer them a job – any job – Lisa said. “Treatment can help, but this condition can’t be cured.”