Taneka Gillard, founder, iReign Special Needs Support Group Alabama, with daughter, Reign. (Amarr Croskey, For The Birmingham Times)

” data-medium-file=”https://www.birminghamtimes.com/wp-content/uploads/2023/11/TanekaGillard-5-300×200.jpg” data-large-file=”https://www.birminghamtimes.com/wp-content/uploads/2023/11/TanekaGillard-5-1024×683.jpg” />

By Je’Don Holloway-Talley

The Birmingham Times

It all started with a bow, said Taneka Gillard, founder of the iReign Special Needs Support Group Alabama. Her daughter, Reign, was born two months premature and spent months in the neonatal intensive care unit (NICU) in 2009 at St. Vincent’s Ascension Hospital in downtown Birmingham. To pass the time while her daughter was in the NICU, Gillard began to knit.

“I wanted to make her something special that she could wear while she was in the incubator, so I made her a bow,” Gillard said.

Reign was diagnosed with several conditions, and “she will never walk, or talk, or make any of the milestones that [typical children] do within the first days and years of their lives,” said Gillard. “As a parent, all the dreams you had for [your child change].”

While sitting with her daughter, Gillard said, “One bow turned into two”—and soon she’d created a variety of bows and knitted accessories in different colors to represent various conditions and disabilities in advocacy of special needs babies and children.

“Nurses and other mothers in the NICU would notice the bows in Reign’s hair and would ask me to make one for them or make them some booties,” Gillard said. “When Reign was about 3 years old, [in 2012], I started Reignbows, [an online accessory boutique].”

Starting the brand was not easy for Gillard, 50, a Long Island, New York, native, who said she often felt alone, under-resourced, ill-informed, and overlooked throughout the journey she and Reign, now 14, shared.

Click to view slideshow.

Becoming a Resource

Gillard not only created the bows but also established the iReign Special Needs Support Group Alabama, a Facebook-based advocacy and support group designed to be an interactive community for parents and caretakers of children with special needs.

“I’m trying to grow the group,” Gillard said of the online community that was founded this past spring. “I’m trying to spread the word to other parents because this group is for them. It was created by a parent for parents, and our motto is ‘We get you because we are you.’”

She added that iReign is a private Facebook group. “It’s not an open group because I’m trying to build an online community that is a safe space where caretakers can feel comfortable sharing their struggles, engaging, and being honest about their journeys. It’s a lifelong journey because many of our children’s diagnoses are chronic and will [span their lifetimes].”

Gillard created the group because she realized that it was difficult to find information pertaining to services for children with special needs.

“iReign is the group that gets information to the people,” she said. “We [provide] education on different disabilities from week to week. We look at and discuss different topics, different wins, and different struggles that parents and caretakers go through. The group is supporting families, giving them education, and, of course, advocating and teaching them how to advocate for themselves and their child’s needs.”

The group also gives parents and caretakers the opportunity to learn from one another.

“I learned early that I had to find resources for myself. I had to make the calls and do the research myself over the years, and it was overwhelming,” Gillard said. “[iReign allows] parents to learn from each other. One parent told me I could get doctors’ orders, [a sort of prescription], for diapers after Reign reached a certain age. Another neighbor told me about the Embrace Watch, [a U.S. Food and Drug Administration-cleared smartwatch that can be worn as a seizure alert system to detect some types of seizure and send an alert signal to caregivers]. … That’s why I started the iReign Special Needs Support Group Alabama—we need each other’s support.”

Being an Alabama-focused support group is intentional, the founder said: “When you talk about resources, you have to be specific to your state. When a group is generalized [in regard to location or demographics] you can’t just throw in a question because everybody lives in different states, so everybody’s going to have a different answer.”

Family Struggles

The name and phrase “iReign” represent strength and triumph, said Gillard, who also has two adult sons, ages 18 and 28. “Special needs children have a lot of struggles, but families as a whole struggle,” she said. “There are hurdles you have to jump over, and you have to reign over those obstacles by any means necessary.”

“[Reign] has a lot of disabilities and conditions,” Gillard said of her daughter, who has “quadriplegia, a form of paralysis that affects all four limbs, plus the torso. Her conditions also have included Dandy-Walker syndrome, (more here Dandy-Walker Alliance); hydrocephalus, (more here Hydrocephalus Association); cerebral palsy, (more here Cerebral Palsy Foundation); and epilepsy (more here Epilepsy Foundation).

“We have multiple diagnoses, and we can’t focus on one, and that’s part of what iReign is for,” said Gillard. “We’re telling parents, ‘Hey, we get it. We know [you can’t put a] basic blanket over all the conditions.’ There are more conditions and disabilities than cerebral palsy, epilepsy, Down syndrome, and autism. There are so many other conditions that are overlooked, and we don’t want to overlook any condition because they’re all important. That’s why we look at both the intellectual disability and the physical disability when we talk about children with disabilities or special needs.”

Gillard, a Pinson, Alabama, resident, who is also a twin, decided she would name her daughter Reign while she was pregnant.

“She was my first girl, and I already had two boys. I would say, ‘Reign and I are going to reign all over this house,’” Gillard said with a laugh. “I had all the dreams a mother has for herself and her baby girl. I knew she would be strong, and I knew she would take life by the horns, so I decided on Reign for her name.”

Despite the challenges, Gillard said Reign’s strength is exemplary, and she has triumphed over every surgery and obstacle they’ve faced. Still, those initial diagnoses, surgeries, and long hospital stays can be daunting.

“You go from living your everyday life to having to make sacrifice after sacrifice to take care of your child,” the mom said. “I had to sacrifice my job [as a licensed practical nurse (LPN) working as a school nurse], and I had to sacrifice school when I was going for my registered nurse degree. … I think that’s what pushed me to go back to school [in 2017] and major in psychology. … All of the stress takes a toll on you mentally, and I wanted to learn how to cope with it and help others.”

Becoming a Specialist

Gillard earned a Bachelor of Science degree in psychology in 2018 from the University of Alabama at Birmingham (UAB). She also attended American Public University online, where she obtained a child life specialist certification in 2020 in which she is clinically trained in the developmental impact of illness and injury.

“I went back to school to get my psychology degree and child life specialist certification because I want to help families and give them resources,” said Gillard, adding that spending time in hospitals helped her understand the importance of child life specialists.

“It’s the psychology of dealing with the family dynamics of special needs children or special treatments, children with cancer, or any health issue that going to have them in a hospital long term … to try to make their life in the hospital as close to at home or normal as possible,” she said.

Having been a rehabilitation nurse (a professional who assists individuals with a disability and/or chronic illness to help them attain and maintain maximum function prior to her daughter’s birth gave Gillard the skills she would need to administer home care to Reign.

“When I go to see the doctors and all the specialists, I like for them to give it to me straight, don’t sugarcoat anything, give it to me raw, and let me take it in and process it the way it needs to be processed,” she said. “I always tell people that God prepared me for my daughter and prepared me in my career, as well.”

Gillard wrote a book titled “iReign” just after her daughter was born: “[It is] about my struggles, what I’ve seen in other families, how I’ve seen it affect the family dynamic if you don’t have a support system, how it affects you [as an individual], and how it just changes your whole life.”

Gillard is also a licensed cosmetologist. “Doing hair really got me through a lot because I’m creative, and it gives me an outlet. When I had to give up my job and quit school, my hair career is what took me through, and it still gets me through a lot,” she said, adding that doing hair remains her side hustle.

“During the summer and breaks from school, I’m not able to work full-time because I don’t have in-home nurses and [Reign] is not in school, but I can always take her to the shop with me,” she added.

In addition, Gillard still runs the Reignbows online accessories boutique, which has been in existence for more than a decade. Through her brand, she advocates for and gives back to the special needs community, both of which are among her priorities.

“On the Reignbows side, it’s the same thing [we do through the iReign Special Needs Support Group Alabama Facebook community]—we’re educating and advocating—but it’s more of a sales platform,” Gillard said. “We always donate back to the community from the sales we make from Reignbows, whether it’s to a school, hospital, or any type of organization that’s local within Birmingham. … We’ve also donated to other states in the past, it’s just wherever the need is.”

To join the iReign Special Needs Support Group Alabama Facebook community, visit https://www.facebook.com/groups/specialneedssupportgroupalabama. To shop at the Reignbows online boutique, visit http://www.shopreignbowsonline.com, and follow Reignbows on Facebook and Instagram @reignbows. To get more information about both iReign and Reignbows, join the mailing list at http://www.shopreignbowsonline.com.

This article originally appeared in The Birmingham Times.

The post Taneka Gillard’s Advocacy for Her Daughter and Children with Special Needs first appeared on BlackPressUSA.

admin

Posts by admin