Meet Our Thrive to 5 Playfest Ambassadors
At Southwest Human Development, our services improve lives and help families by supporting young children and their caregivers during the first five years of life. These services are supported in part by our upcoming Thrive to 5 Playfest on Saturday, March 12.
Here are just a few of the children whose lives have been positively impacted by our programs and services:
Jaxson
Meet Jaxson, a resilient 2-year-old with a fabulous smile!
From birth, Jaxson has experienced numerous evaluations, procedures and support to reach his developmental goals. His family was initially referred to Southwest Human Development to support his mobility needs.
Jaxson was born with Spina bifida and is not able to walk. While he was able to crawl, his family knew there had to be a better solution. The team at the ADAPT Shop was able to explore various wheelchairs and adapted equipment to help Jaxson be more independent! In addition, the team fabricated a custom seat to help provide the “just right” support for feeding and fine motor tasks.
Jaxson’s mother was concerned about his choking, vomiting and slow weight gain. The family was connected to the Feeding Therapy and Nutrition experts at Southwest Human Development. Through his weekly feeding sessions, Jaxson has progressed with his self-feeding skills, sensory aversion and oral motor skills. He can now suck from a straw and puree pouch. He is also working on drinking from a small open cup.
Despite a significant sensory aversion to certain flavors and textures, Jaxson is now interested in tasting foods like chunky mashed banana and strawberry. He will also touch more foods and most recently started to take bites of Gerber Star Puffs! He chewed and swallowed the crunchy texture safely and efficiently.
Jaxson’s family has faithfully followed the guidance and strategies his care team provides and despite a rigorous schedule of appointments and therapies, they are seeing progress. When asked how life has changed since Jaxson began his feeding services this past year, his mother Amanda can’t help but be excited that he can now self-feed and is gaining weight.
Just like any other two-year-old, Jaxson loves to spend time with his dog, Barney, explore outside or visit with Grandma. And if he gets upset, he only needs to hear the music of Moana to calm down.
Mackenzie
We introduced you to Mackenzie in 2021 and she has (literally) made some great strides since that time! We are happy for her return as a 2022 Ambassador to share how her life continues to evolve.
Born 24 weeks early at only 15 ounces in November 2018, Mackenzie spent almost a year in the neonatal intensive care unit and returned home dependent on a ventilator and feeding tube. When Mackenzie hadn’t started crawling or walking by her second birthday in November 2020, her therapist recommended her parents seek out the ADAPT Shop.
Southwest Human Development’s ADAPT Shop identifies, modifies and builds customized equipment for children with disabilities. Mackenzie and her parents worked with Beth Rank, an occupational therapist, and Jacob Sustayta, the ADAPT Shop’s fabricator, to find a mobility device to help Mackenzie learn to walk. They fitted Mackenzie for a pacer gait trainer and she was on the move!
Ironically, when a gait trainer was separately approved by insurance and received by the family nearly eight months later, Mackenzie was walking on her own. Not only did she return the loaned equipment to the ADAPT Shop, but she gifted them with her new gait trainer that was no longer necessary to the family.
Mackenzie loves anything outdoors, like going on walks or going to the park, and loves playing with musical toys like her piano or toddler drum set. Now that she’s walking unassisted, her parents are having trouble keeping up!
“After several weeks of working with her to help her get comfortable with [the pacer gait trainer], one day, she just decided to pull herself up all on her own (which she had never done before) and just started kicking her legs out to walk! Ever since then, she LOVES her walker and uses it all the time – she’s developed leaps and bounds with the help of her walker and we’re confident she wouldn’t have progressed as quickly without it,” says Lindsay, Mackenzie’s mom. Not only is Mackenzie now walking on her own, but she was also able to have the tracheotomy removed and she is beginning to explore more of her world without concerns for the external equipment that was needed.
Christian
Meet Christian, a 3-year-old who loves to explore the outdoors, go for car rides and snuggle with his family.
As Christian grew, his mother Bertha, sensed that something was different with his communication skills and overall development. It was challenging for Bertha to understand his needs and as she sought help, she was met with closed doors due to the COVID-19 pandemic.
Luckily she did not give up and found help with Southwest Human Development’s Children’s Developmental Center (CDC). The team at the CDC worked alongside the family and helped them with assessments and options to receive tele-therapy.
Soon Bertha’s anguish turned to hope as she learned techniques for communicating and interacting with her son through the DIRFloortime® therapy. Through this intervention, Bertha was able to understand Christian’s individual differences as it relates to his Autism diagnosis and promote his social-emotional, language and cognitive development.
As the sessions progressed, Bertha and the family learned ways to understand Christian’s needs. Christian is a non-verbal communicator but is now able to alert his family to his wants and desires through eye gaze and guidance by the hand.
Christian is not yet able to walk and the family received additional support through the ADAPT Shop in the form of a loaned gait trainer and wheelchair. He also receives occupational therapy, speech therapy, feeding therapy and dietary guidance as he continues to grow.
Despite having significant delays, Christian continues to show small progress in how he relates and engages with his family. His mother is so thankful that she can now connect with Christian and “be in his world.”
Leonardo
Meet 3-year-old Leonardo who loves playing with his older brothers and helping mom by letting everyone know what needs to get done.
Leonardo was the second preemie born to the Velazquez family, but he had the added title of “micro” and spent 125 days in the neonatal intensive care unit. Initially, the family received support for the care their son needed, but when the COVID-19 pandemic hit, everything stopped.
Leonardo’s mom, Laura was concerned because the family had little in the way of financial resources and found it difficult to navigate care over the internet. But Laura is a believer in early intervention, so when Leonardo was diagnosed with Cerebral Palsy, she struck out on a journey for support.
When they were no longer able to receive care in their home and Leonardo continued to grow without the ability to move, Laura became desperate. However, once she found Southwest Human Development and the resources available at the ADAPT Shop, she “saw light at the end of the tunnel.”
When they were no longer able to receive care in their home and Leonardo continued to grow without the ability to move, Laura became desperate. However, once she found Southwest Human Development and the resources available at the ADAPT Shop, she “saw light at the end of the tunnel.”
From the moment they came to the ADAPT Shop, the family felt an overwhelming sense of comfort and genuine care from the team. Leonardo was able to borrow a gait trainer to help him walk. The family also tried an adaptive bike to help with strength and coordination. Leonardo excelled at the bike and soon began to walk more on his own.
Laura truly believes that Leonardo would not be able to move if it wasn’t for the equipment and the therapeutic exercises he received from the ADAPT Shop. She is thankful for the safe and positive environment she encountered.
Leonardo continues to receive therapy and is now getting ready to begin preschool in the fall. His family is excited for his growing confidence and the new friends he will meet.
Nora and Katie
Meet the dynamic duo of Nora and Katie, two-year-old twins on a mission to explore everything in their sight.
During this high-risk pregnancy, Nora and Katie’s first-time parents were often told “worst case” scenarios regarding their babies’ developmental outcomes. That’s where Southwest Human Development’s Side by Side program entered the picture. From the twins’ births, parents Lindsay and Brent Barentine were supported by a Parent Coach who provided them support in their transition from the neonatal intensive care unit to home.
As the family settled in at home, Nora and Katie’s parents expressed concerns around communication, feeding and sensory issues. Working in tandem with other early childhood specialists, such as a Speech Language Pathologist and Occupational Therapist, their Parent Coach provided ideas and activities to support the twin’s communication and sensory development.
Not knowing what to expect with twins, nor the developmental milestones they may need assistance with, Lindsay and Brent found comfort in the team that supported not only their babies but them as parents. Being available to guide new parents with newborns and children at risk of delays is exactly what the Side by Side program is there for. Parent Coaches are there to lend an ear, answer questions and facilitate screenings and interventions as needed. It’s a true partnership that provides a circle of support to the families the program serves. The family will continue to receive support until the twins reach 5 years of age.
Today, the twins are full of energy and display typical toddler behaviors. Nora tends to be more stubborn and takes the lead, while Katie is more deliberate and quiet in her personality. They have a special bond as twins, but they are also learning to gain independence as they grow.
Learn more about the Thrive to 5 Playfest and how you can fundraise for programs that support Arizona kids at swhd.org/playfest.
Photos courtesy of Rebecca Evenson Photography.