Click an Ambassador’s name below to read their story!
Say hello to Mackenzie, one of our 2021 Walk With Me Ambassadors!
Mackenzie was born 24 weeks early at only 15 ounces in November 2018. After spending almost a year in the NICU, Mackenzie returned home dependent on a ventilator and feeding tube. She’s also had motor skill developmental delays due to her long stay in the NICU. 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 is a workshop that 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’s made steady progress ever since!
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. Her parents hope to see her walk unassisted soon!
“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.” – Lindsay, Mackenzie’s mom
Say hello to 5-year-old Logan, one of our 2021 Walk With Me Ambassadors!
In 2019, Logan’s mother Dominga became concerned about his overall development, so she sought out the help of Logan’s pediatrician. The pediatrician referred the family to Southwest Human Development’s Children’s Developmental Center for a developmental evaluation to assess for autism. At the Children’s Developmental Center, our pediatric specialists work as an integrated team to provide comprehensive evaluations, expert assessments and to create individualized plans for each family. Our Children’s Developmental Center team diagnosed him with Autism Spectrum Disorder as the result of the specially designed evaluation.
The Children’s Developmental Center team worked with Logan’s family to create a treatment plan that would address his communication challenges and repetitive behaviors. They recommended speech and occupational therapies as well as developmental preschool. The team also recommended DIRFloortime®, an evidence-based intervention that helps a child develop social, communication and cognitive skills through play-based interactions and relationships.
Dominga says that Logan has made steady improvements since he first started treatments with the Children’s Developmental Center. Although she was initially nervous about her son’s development and seeking professional help for him, Dominga says that she’s very grateful for the program’s support, especially that of Raquel Rivera, the family’s Care Coordinator.
“Knowing about his diagnosis was difficult, but Southwest Human Development supported us through this in my own language, which made me feel more comfortable. In addition to being able to better help my child with his needs, his diagnosis also helped my marriage. We now communicate better and I feel my marriage has gotten stronger. I’m very grateful” – Dominga.
Say hello to 4-year-old Isabella, one of our 2021 Walk With Me Ambassadors!
When Isabella’s mother Juventina became concerned about her daughter’s speech-language development and her ability to maintain attention, she sought out help. Through a referral from AzEIP, Juventina brought Isabella to Southwest Human Development’s Children’s Developmental Center. Our pediatric specialists at the Children’s Developmental Center work as an integrated team to provide comprehensive evaluations, expert assessments and individualized plans for each family. Our Children’s Developmental Center team diagnosed Isabella with Autism Spectrum Disorder as the result of the specially designed evaluation.
The Children’s Developmental Center team worked with Isabella’s family to figure out a treatment plan that would address her challenges with communication, repetitive behaviors and sensory processing integration. They recommended speech, occupational and behavioral therapies as well as developmental preschool. The team also recommended DIRFloortime®, an evidence-based intervention that helps a child develop social, communication and cognitive skills through play-based interactions and relationships.
The treatment plan created by the Children’s Developmental Center team prescribed both clinic-based treatments and naturalistic interventions that take place at home or her preschool setting, ensuring that people she knows and loves can help encourage her growth. With the help of the Children’s Developmental Center, Juventina says the Guerrero family has worked together to help support Isabella and that Isabella has become more communicative and caring.
“I am very thankful for what Southwest Human Development has done for my family. I was provided ongoing support. I think Southwest is una institución con mucho corazón [an institution with a big heart].”
We featured Carter and the Wahl family in a family story in 2015. Chris and Carrie originally found Southwest Human Development’s autism services at the Children’s Developmental Center to find solutions for their son Carter. At two years old, Carter still wasn’t speaking and was spending hours playing alone and some of his play habits were repetitive in nature.
“He wasn’t making eye contact or talking at all,” said Carrie. “He was really focused and fixated on cars and would just sit on the ground and watch the wheels go back and forth.”
Southwest Human Development therapists helped Carrie and Chris learn how to interact and communicate with their child and began working with Carter to improve his developmental progress and behaviors. The family was also able to interact with other children and families to help Carter socialize with others. Within the first week, Carter was using sign language, allowing him to finally communicate and express his needs to his parents. Over the next year, his eye contact improved dramatically, he started to enjoy playing in the sandbox – which he wouldn’t go near before – and he became social with other children, engaging in imaginary play and smiling. Carter even started speaking in short sentences, telling Carrie, “Mommy, I love you.”
Carrie says that Carter has grown up so much since the family came to Southwest Human Development – physically, mentally and emotionally. Although he’s come a long way, she says Carter still sometimes has challenges with getting frustrated, becoming fixated on specific objects and needing things to be in a particular order or pattern. As a result of everything the family learned from Southwest Human Development, they’ve been able to continue certain therapies to help Carter work on the challenges he faces.
“Thank you Southwest Human Development for giving us a strong foundation so we can continue to help our son when he needs it.” – Carrie
Programs or services utilized:
Amora received two “happy chairs,” custom seating devices from the ADAPT Shop that have helped her greatly. The chairs have allowed her to have a safe, supportive place to play, eat and learn. Her parents have also checked out other pieces of assistive equipment from the ADAPT Shop to help encourage Amora’s movement and independence.
A few of Amora’s favorite things:
Amora loves being read and sang to, music and swinging at the park. Her favorite book is “The Pout Pout Fish” and her favorite song is “Itsy Bitsy Spider.”
Hear from Amora’s parents:
The first day that we brought the happy chair home it was a game-changer. She began improving in play skills during Occupational therapy because she was being well supported in the chair. We were able to sit across and play with her and interact without worrying about her posture or her not being supported. It has been one of the tools that have helped her gain confidence and strength with sitting.
Programs or services utilized:
Benjamin received Early Intervention and DIRFloortime® services.
A few of Benjamin’s favorite things:
Benjamin enjoys math, colors, school and going to the park.
Hear from Benjamin’s parents:
I’d always felt inadequate as a mother, and I made that clear from the beginning. I felt unequipped to raise a typical child, but to raise an autistic child? Forget it. Game over. But one week, an ordinary early intervention visit with Tina changed everything. We were talking about some issue I’d been having with Ben and the solution I came up with. I don’t remember what the issue was, or what the solution was, but I will always remember what Tina told me that day: “You know, nearly every week we talk about a problem that Ben is having and I offer several possible solutions, then I come back the next week and you’ve come up with your own solution. You’re better at this than you realize.” I’d never noticed that. I was so caught up in the everyday struggles that I never took the time to see all of the clever ideas I’d come up with. Suddenly, I had some confidence in myself and that changed everything.
Programs or services utilized:
Braulio and his parents received help from the Birth to Five Helpline as well as the ADAPT Shop.
A few of Braulio’s favorite things:
Braulio likes Monopoly, cars, Nerf guns, Avengers toys and video games! He also enjoys playing football, baseball and basketball.
Hear from Braulio’s parents:
Braulio is our ray of sunshine — a happy, loud, outgoing, spontaneous, courageous, loving, very handsome boy! He has grown a lot since we started doing Walk With Me 9 years ago. Southwest Human Development has helped him tremendously with his independence and to be prepared for life!
Programs or services utilized:
Eli received feeding, speech and occupational therapy right out of the NICU. He also had a comprehensive evaluation in the CDC by Drs Kessler and Perugini and then received Floortime from Dr. Perugini after being diagnosed with Autism.
A few of Eli’s favorite things:
Eli loves learning about and riding elevators! He also loves to dance and participates in the dance club at school. He loves all things rainbows and movie credits. He likes to recreate movie logos and record the intros to the movies with his iPad.
Hear from Eli’s parents:
There are so many moments that come to mind, but the most meaningful one was probably hearing Eli say “I love you”. He didn’t start speaking until he was almost 6. We treasure his voice and love hearing what he has to say.
When Ezra was born in June 2015, his parents Lissette and Pedro welcomed their baby boy into the world with loving arms and hearts full of joy.
Shortly after Ezra was born, doctors decided to do some genetic tests after observing a few characteristics that caused them concern. A short while later, Ezra was diagnosed with Prader-Willie syndrome, a rare disorder present at birth that results in numerous physical, mental and behavioral challenges. Prader-Willie syndrome often results in a constant sensation of hunger, known as hyperphagia, which typically begins around the age 2.
The team at Southwest Human Development stepped in while Ezra was in the NICU and informed Lissette and Pedro about the importance of early intervention and how it could help Ezra.
“I’m the first member of my family to have a child with disabilities,” said Lissette. “It can get confusing, especially when it’s your first child.”
With the help of the early childhood specialists at Southwest Human Development’s Children’s Developmental Center , Lissette was able to access the programs and services Ezra needed. The Children’s Developmental Center provides integrated care to children to ensure that evaluations and treatments are coordinated.
After working in partnership with Ezra’s family, the specialists at the Children’s Developmental Center recommended that Ezra visit the ADAPT Shop for a physical evaluation. The ADAPT Shop’s mission is to help young children with disabilities, from birth through age 5, develop the competence and confidence they need to become independent and active participants in their home, school and community.
Though Prader-Willie syndrome is a complicated diagnosis, Lisette and Pedro never gave up hope of a bright future for their son. He and Lissette worked extensively with the Southwest Human Development ADAPT Shop to work with specialists and help manage symptoms.
The results of ADAPT Shop evaluations provided a life-changing step in Ezra’s life. The first time Ezra tried out his ADAPT Shop happy chair, customized seating solution that supports young children with physical disabilities, he was able to lift his head up and was able to look around.
“I was just overcome with joy like a little kid at Christmas jumping up and down,” Lisette said. “I wanted to record everything. It was overwhelming to the point where I had tears in my eyes.”
Ezra’s first moments being able to lift his head on his own were just the beginning. Lisette continued working with the ADAPT Shop to ensure that Ezra would continue his development so he could have the best possible quality of life.
“It was a very emotional time for me because it gave me strength as a mother to be strong for him so he can be more strong,” Lisette said.
As Ezra grew, the ADAPT Shop professionals were able to make adjustments to his custom chair so the equipment continued to meet his needs.
“What really impressed me is that the ADAPT Shop therapists actually caught onto Ezra’s scoliosis before the doctor did,” Lissette said. “They’re really aware of Ezra’s body, movement and contouring.”
Programs or services utilized:
Parker received services from the ADAPT Shop as well as speech and occupational therapies.
A few of Parker’s favorite things:
Parker loves school, Sesame Street (especially Elmo), swimming, music and playing piano with his dad.
Hear from Parker’s parents:
Parker has experienced numerous breakthroughs working with his Occupational Therapist, Connie. She’s worked tirelessly on his fine motor skills. He can now effortlessly use a pincer grasp to turn on a light switch, pick up food and even turn the key on his jack-in-the-box toy. He’s also learned to clap, which used to be so difficult.
Babies typically learn to sit independently between the ages of 4 and 7 months old, and at 8 months old, most babies are able to sit well for several minutes without any support at all. Tarah and Scott learned during their first ultrasound that their daughter Harper had spina bifida, but didn’t know how it would affect her mobility later down the road.
When Tarah and Scott noticed Harper, was old enough but not strong enough to sit up on her own, they immediately sought help and learned that Harper had a rare disorder called spina bifida with hydrocephalus. Spina bifida is a treatable malfunction in the neural tube that develops into the spinal cord and brain.
Hydrocephalus is caused by either increased production of excess cerebrospinal fluid or impaired circulation and absorption in the head. These disorders cause functional obstruction, making it difficult to for those who are diagnosed to be independently mobile and active.
“We were looking for creative solutions to the challenges Harper faced,” said Tarah. “We needed people who understood her unique needs and would not take a one-size-fits-all approach. We heard about the ADAPT Shop at Southwest Human Development and decided to give it a try.”
Since opening in 2011, the ADAPT Shop has served hundreds of children and their families and created thousands of custom equipment solutions for young children with disabilities that improve their participation in daily life, developmental skills and better overall health.
Southwest Human Development’s first solution to Harper’s unique needs was to create a custom-made “Happy Chair” to allow her to sit up to eat on her own, play and be more active in family activities without having to only be held. Since Harper received her “Happy Chair,” Tarah and Scott turned to Southwest Human Development for all their daughter’s adaptive device needs.
“We were instantly surprised with how much the ADAPT Shop did for our little girl,” said Scott. “They made her exactly what she needed to allow her to sit up straight in her high chair and on the floor. This was the first sign that gave us the feeling we had gone to the right place.”
The ADAPT Shop had several other design challenges to undertake to meet the family’s day-to-day needs, which included creating a shopping cart insert, floor sitter and a table for Harper.
“It’s hard to express how huge of an impact that had on her confidence and development of motor skills,” said Tarah. “Whenever we needed adjustments, feedback or advice, Southwest Human Development was there for us – listening intently and were always open to new insights.”
Harper is now 4 years old and accomplishing many things on her own with the tools provided by the ADAPT Shop and Tarah and Scott say they owe it all to Southwest Human Development.
“They continue to help us on our journey to discover and create custom fittings for Harper with the goal of one day helping her, not only learn to walk, but also have the strength to succeed in doing it on her own,” said Scott.”
Tarah added, “We don’t know what we would do without them. They treat us like family and that is a rare thing to find.”
Seven years into their marriage and raising their three young children, Richard and Emily Howell were asked by the Department of Child Safety to temporarily foster her sister’s three children while her sister was in rehab for substance abuse.
Unfortunately her sister did not complete rehabilitation, and the children stayed with the Howells. Two years ago Emily got another call informing her that her sister had given birth to a little girl who was born premature and substance exposed, and DCS asked them to foster the baby girl as well.
The Howells decided they would foster the little girl, named Sophia, who was still in the hospital because she was detoxing from the drug exposure.
Southwest Human Development received a referral through the Arizona Department of Child Safety to complete an inspection of their home and observe the care and welfare of Sophia. Nicole, a Family Support Specialist with the Kinship Care and Adoptions Program was assigned to the home assessment.
Nicole provided the Howells with emotional support, but also coached them on how to go through the Arizona Early Intervention Program (AzEIP) and work with her medical provider on how to address the symptoms Sophia was having. Southwest Human Development coordinated services for Sophia through AzEIP including physical therapy, occupational therapy and speech therapy should she need it as she gets older.
The Howells and their three children provided Sophia with the ongoing support she needed to thrive. They welcomed Sophia and her three brothers into their home to have a forever family. Sophia was officially adopted in May of 2015, and a year later her three brothers in May of 2016. Sophia enjoys spending time with her six siblings and learning new skills.
“Sophia is a very independent little girl who lives life to the fullest each and every day,” Emily said. “She can count to 20 and will sing a handful of songs!”
Emily and Richard say that if they had not received the guidance and support from Southwest Human Development it would have been tough to provide what Sophia needed.
Programs or services utilized:
Max has utilized a walker and a custom-made chair from the ADAPT Shop.
A few of Max’s favorite things:
Max loves to vacuum, ride the school bus, play outside and watch PBS Kids.
Hear from Max’s parents:
Max loved his chair from the ADAPT Shop. It really helped him to sit up straight and do tasks at the table while in his chair. It gave him the motivation to learn to stand so he could climb into his chair by himself.
An exciting part of being a parent is waiting for your child’s special “firsts:” first smile, first word, first steps. For Alexander, his first steps marked an extra special moment of pride and excitement for his mom, Rachel, who worried that her son might not grow and develop as other children do.
Alexander was born prematurely and was diagnosed with a milk protein allergy and severe gastroesophageal reflux disease, a chronic digestive disease that results in significant acid reflux and heartburn. This made feeding very uncomfortable for him and impacted his growth.
The Smooth Way Home specialist educated Rachel on a variety of supports and community resources that could be specifically tailored to meet Alexander’s needs. These included Arizona’s Early Intervention Program, military support, childcare, Southwest Human Development’s Feeding Program and more.
During Alexander’s time spent in the newborn intensive care unit (NICU), staff referred Rachel and her son to Southwest Human Development’s Smooth Way Home program, a program that supports a successful transition for fragile infants and their families from the NICU back to their home and community.
Upon making a connection, Rachel’s Smooth Way Home specialist worked diligently to be sensitive to Alexander’s immediate developmental needs. Rachel received the support and guidance she needed as a parent to help Alexander thrive and meet his goals. Throughout Alexander’s time working with Smooth Way Home, Rachel found comfort knowing that a fragile infant specialist was only a phone call or visit away.
“Our Smooth Way Home specialist was so patient and helpful,” said Rachel. “The program staff’s flexibility and knowledge of resources meant a lot to us, especially because it was a very hectic time in our lives.”
“Not only did the staff help me gain a better understanding of Alexander’s feeding issues, but they also were the first to tell me that I was doing something right,” said Rachel. “It seems like a small gesture, but it was incredibly encouraging to hear as a parent.”
Alexander’s drive for adventure helped him overcome his health challenges. A special and surprising moment for Rachel was when Alexander began to walk right on time, just like a typically-developing child.
“Due to his prematurity, he was a little behind on sitting up and crawling, so I was so worried that he was never going to walk,” said Rachel. “We were so surprised and happy when one day he just got up and did it on schedule and without any assistance.”
Rachel continues to work with Southwest Human Development’s programs and services to provide the best possible care and support to Alexander as he grows, develops and reaches his developmental milestones.
“Smooth Way Home is a wonderful support to connect you to community resources, assess your child’s development and gain knowledge and information,” said Rachel. “I would absolutely recommend Smooth Way Home to other parents.”
Sophia is a musically inclined 2-year-old who’s adored by her mother Bianca as a little “rock star.” Being a rock star in Sophia’s world means much more than having a passion for music, but also embodies a determination to live life to the fullest each and every day.
When Sophia was born, she was diagnosed with congenital CMV, a virus that can result in hearing loss, vision challenges, seizures, lack of coordination and weakness using muscles in infants. Because of Sophia’s congenital CMV, she has cortical visual impairment, pale optic nerves, sleeping challenges, asthma, spastic cerebral palsy and is prone to seizures.
Sophia’s Arizona Early Intervention Program physical therapist referred the family to Southwest Human Development’s ADAPT Shop for an evaluation to explore what assistive technology could have a long-term impact in Sophia’s life.
“Our experience with the ADAPT Shop blew me away,” said Bianca. “From the beginning, the team really worked to collaborate with me and our physical therapist to understand Sophia’s specific medical needs.”
At home, Sophia’s parents had been doing their best to help their daughter with makeshift cushion and towel positioning. Despite their best efforts, they knew Sophia needed equipment designed by experts with the purpose of helping to increase her engagement with people and toys.
The ADAPT Shop worked to understand Sophia’s needs and created assistive technology designed just for her. The ADAPT Shop fabricator designed and fabricated various pieces of equipment to promote safe swallowing, muscle development and body alignment to support reach and grasp. The ADAPT Shop team also worked with Bianca to prevent risk of injury and how to safely use the equipment.
“It was so cool how the ADAPT Shop staff collaborated as a team while including me in the discussion,” said Bianca. “The resulting final products were amazing.”
Assistive technology has already made a long-term impact in Sophia’s life. A custom-built activity chair helped Sophia build the skills to reach for toys and interact with people, while a crawler assistance tool helped her to build motor skills and develop the ability to crawl.
Over time, Sophia’s progress transcended from tummy time and stretching to sitting up with assistance for longer periods of time and playing with toys. Sophia continues to work with the ADAPT Shop to build her skills, play with toys and build connections with people in her life.
“Before working with the ADAPT Shop she was not at that level of development,” said Bianca. “It’s really exciting to see her grow and change. We see Sophia connecting with people and tracking objects now more than ever.”
Holding pencils and crayons has not come easy for 2-year-old Penny. While in utero, she was diagnosed with arthrogryposis multiplex congenita, a condition that makes physical movement difficult and ranges in severity. In Penny’s case, the condition resulted in challenges using her hands and holding her head upright.
Penny’s parents, Bethany and Brandt, first began working with Southwest Human Development’s Children’s Developmental Center when Penny was 9 months old. The center later connected the family with the ADAPT Shop, a unique workshop where young children with disabilities can get the customized assistive technology that they need to become independent and active participants in their home, school and community.
“We were really impressed by how we were treated when being introduced to the ADAPT Shop,” said Bethany. “Every child is different. We really appreciated the time that was taken to understand our daughter’s specific needs.”
ADAPT Shop therapists and fabricators formed a clear understanding of Penny’s conditions and lifestyle in order to understand the full scope of how the team could collaborate in helping Penny reach her fullest potential.
Throughout Penny’s time with the ADAPT Shop, she received customized equipment including two chairs, which each significantly helped with self-support following reconstructive surgery. ADAPT Shop staff also collaborated with Penny’s in-home physical therapist to design her seating that would comfortably support Penny’s shape with the cast.
“Our fabricator had impressive attention to detail while making our dreams come to life in a short amount of time,” said Bethany. “If the ADAPT Shop didn’t exist, we would have had to attempt to build our own equipment, which would have been nearly impossible.”
To create a product tailored just for Penny, the ADAPT Shop used a combination of cameras and digital imaging to help carve foam support and a wood frame for stability. The shop’s 3-D printer helped to create a headrest and adjustable knobs for the device so that Penny’s parents would be able to adjust tilt angles and help make Penny feel most comfortable. The shop also loaned the family a wingbow tummy time swing to help Penny learn to roll from her back to her belly and to hold her head up.
As a result of the equipment created by the ADAPT Shop, Penny has been able to advance from laying down propped up by pillows to now utilizing her customized seat to sit up and even stop using the seat’s headrest she once relied on. She has also developed the skills she needed to grasp objects and interact with toys.
“Since the time we began working with Southwest Human Development’s services, our daughter’s progress has made incredible strides,” said Bethany. “Having the ADAPT Shop team as a resource changed Penny’s life.”
When Quincy was born, his parents Tessa and Joe knew that he was special.
Quincy was diagnosed with Sotos syndrome 2 when he was a baby, which affects his physical and cognitive development. Throughout his early childhood, Quincy suffered from seizures and has undergone surgeries for his eyes and breathing. He also faces language and communication delays.
It was no question that Tessa and Joe would stop at nothing to ensure his happiness and well-being.
As Quincy’s parents worked through his diagnosis, they struggled with the continuous advice that doctors were giving them: “Just wait and see what happens.”
“We were overcome with grief when Quincy was diagnosed,” said Tessa. “We weren’t sure what to do, but we knew we would do everything and anything he needed.”
Quincy’s parents held true to their commitment.
When he was just over a year old, Tessa and Joe learned about Southwest Human Development’s ADAPT Shop through their family’s service coordinator at the Division of Developmental Disabilities. After their first visit to the ADAPT Shop, they had a newfound hope of a brighter future for Quincy.
During his initial evaluation, an ADAPT Shop therapist visited with Quincy and his family at their home. The therapist recommended a customized chair, table and pull up bar to help meet his unique needs.
“The ‘Happy Chair’ that the ADAPT Shop made immediately helped Quincy sit on his own and enabled him to concentrate better,” said Tessa. “It was amazing that she was able to evaluate Quincy and immediately recognize his needs. I (was) so grateful.”
The customized seating system, referred to as the Happy Chair, is designed specifically for children with physical disabilities to help build upper body and core strength. The stand-up bar given to Quincy also aided him with gaining strength for standing by himself.
“He loved it!” Tessa recalled.
To complement the equipment created by the ADAPT Shop, Tessa and her mother-in-law also attended an assistive technology seminar for helping young children with disabilities communicate. Quincy is slowly, but steadily, learning to use an iPad and other tools to better communicate with his family and others.
“Quincy has the most amazing personality and I love the happiness he exudes,” says Tessa. “We celebrate each tiny step of progress he makes.”
Dylan was born a healthy and happy baby boy, but shortly after his birth, he began having difficulty feeding. After a few days, his parents took Dylan to the hospital where he was diagnosed with pyloric stenosis – a condition that affects the gastrointestinal tract – and he needed surgery to correct it.
During the initial incision, Dylan’s heart stopped for nearly 45 minutes leaving him with brain damage, cerebral palsy, difficulty managing seizures and cortical blindness.
“When you have children and they’re born, you have all these hopes and dreams,” said Lauren, Dylan’s mom. “He was 22 days old when a nurse told me he was brain dead and they wanted a chaplain to come pray with us. We were then told to go home and decide if we wanted to donate his organs. He was just so little and all of our hopes and dreams for him were taken away in an hour.”
Doctors told his parents that Dylan may never be able to sit, stand or walk and only time would tell what other disabilities he would have in relation to sight, hearing, cognition and behavior.
At 4 months old, Dylan’s parents found Southwest Human Development after he was beginning to show postural instability and visual delays. His doctor felt Dylan would work better in a home-based environment instead of an inpatient hospital. Dylan began receiving in-home weekly occupational therapy from Southwest Human Development and just a few weeks after beginning services Dylan learned to sit on his own. This was something his parents never thought would be possible.
“I’m a nurse practitioner so I’m used to dealing with situations like this, but this was the first time in my life that I felt completely and utterly helpless,” Lauren said. “These early intervention services give me the hope that I’m not helpless, I can support Dylan.”
According to his parents, the services have given them the knowledge and skills to be able to help his development on a daily basis. Where they once felt helpless, they now feel empowered to give Dylan the tools he needs to grow.
“What I liked best about this program is that the early intervention is geared toward working with us as a whole family so that we can continue to work with him every day,” Lauren said. “We’ve had to rebuild everything for him so he can someday have the best quality of life, and every opportunity available to him.”
Lauren says that Southwest Human Development programs have played a major role in setting Dylan up for success. Three-year-old Dylan makes his parents proud as he continues to learn, develop and thrive.
Even before Santino was born, his parents, Bobby and Amanda, nurtured a foundation of optimism to help their son have the best life had to offer.
During Amanda’s second trimester, doctors discovered that Santino had arthrogryposis multiplex congenita, a rare condition that leads to contracted joints including bilateral club feet and a shortening or distortion of muscle or connective tissues in the elbows, wrists and fingers. Shortly after Santino’s birth, Bobby and Amanda received the news that their newborn also had a very rare brain abnormality called bilateral perisylvian polymicrogyria that caused him to have low muscle tone and weakness in his arms and legs which would prevent him from sitting, crawling, standing and walking on his own.
Despite the odds, no doctor, diagnosis or thought of uncertainty could hold Santino and his family back from making successful strides towards adaptive solutions. The family spent time learning about Santino’s conditions and taking steps to receive the support they need to provide him with a quality life.
One of the challenges Bobby and Amanda faced was the struggle of finding seating that provided Santino with the proper support he needed. After several physical therapy appointments, the family was referred to Southwest Human Development’s ADAPT Shop. The ADAPT Shop is a unique place that provides a variety of different solutions for different needs, such as seating systems, trays, easels, toy and standing bars, light tables, feeding and crawling supports, tummy wedges, and more.
“The ADAPT Shop was probably one of the first places that we got to that actually showed results and solutions that would actually be beneficial for Santino,” said Bobby.
While the family was happy to experience improvement, the progress doesn’t remain at ADAPT Shop. An ADAPT Shop therapist visited Santino at his home to measure him for his Happy Chair. The Happy Chair is a customized seating system designed specifically for children with physical disabilities to help build upper body and core strength.
Amanda recalls that she loved when Santino’s therapist was able to understand her concerns and quickly offer suggestions for the home regardless of the challenge.
“She was a remarkable therapist with a ton of experience and had a wonderful way of making things work,” said Amanda.
The family also had the opportunity to borrow various equipment to encourage Santino’s strength and stability. Santino used mobility equipment like the Zip Zac to improve his movement while the family fundraised for one of their very own. Life-changing equipment like the Zip Zac provides mobility for Santino so that he can explore and play with his brother and sister.
“We feel very blessed to have connected early on with Southwest Human Development in order to provide adaptive solutions for Santino,” says Amanda.
When Annabel was a toddler, her parents, Emily and Johnathan, always joked that she acted like a teenager because she always ignored them.
“When ‘Bells’ was 18 months old, we could barely wait for the ‘word explosion’ the baby websites told us would be coming soon,” said Johnathan. “It never came.”
Shortly after Annabel’s second birthday, doctors told Emily and Johnathan that she had failed her ABR (auditory brainstem response) test. Their toddler was not ignoring them but instead had bilateral sensorineural hearing loss.
Emily and Johnathan began looking for services for Annabel and the Children’s Developmental Center at Southwest Human Development was there to help.
A team of Southwest Human Development early childhood specialists visited Annabel and her family in their home to do a full developmental evaluation. From there, a Southwest Human Development speech therapist continued to work with Annabel every week to help improve her language skills and provided her family with tools to continue her growth at home.
“With all of the support that we had from the team at Southwest, she was able to learn to articulate more clearly so she could communicate with us and her friends,” said Emily. “Her frustration level is so much lower and she feels such a sense of independence and pride.”
Now that Annabel was able to hear and was better communicating, this opened up a whole new world for her entire family.
“Annabel had gone almost two-and-a-half years without hearing a dog bark, her sister’s giggles or the birds chirping,” Emily said. “We got to experience those sounds with her for the very first time.”
Specialists from Southwest Human Development helped the family advocate for Annabel’s education when it was time for her to transition to the public school system.
“It provided a united front for Annabel,” said Emily. “Our therapists and case coordinator attended every meeting with us and helped us organize our goals for Annabel. She ended up being placed at Desert Voices to continue her speech and language services, which was our goal from the beginning. We couldn’t be happier that she is there.”
Anyone who meets Silas can see that he is loving and curious. He walks, laughs and plays like every other child. However, as he navigates through the milestones of childhood, he faces different challenges.
Silas was born with arthrogryposis, a condition in which some joints don’t move as they should and may be stuck in one position, restricting range of motion. Often muscles around the joints are thin, weak, stiff or even missing. For Silas, his arms and legs limit his ability to move about in the way that most children his age can.
Over the years, Silas’ family has remained committed to helping him in every way possible. His mother Jen is by his side every step of his journey, keeping his spirit vibrant. Their road to find the “right” solutions led them to the ADAPT Shop, a special Southwest Human Development workshop that customizes supports and equipment for children with disabilities.
“We’ve been on quite a journey over the past few years,” said Jen. “Before we came to the ADAPT Shop, Silas would roll on the floor to move from one place to another because he couldn’t physically sit up on his own or bend his elbow.”
After visiting the ADAPT Shop, Silas began using his custom-fit Happy Chair, which aids him in sitting on his own and building core strength, a Zip Zac and a motorized scooter.
Jen describes her son as having a “real knack” for understanding anything mechanical.
“He watches and absorbs it all so that when we give him that scooter or that new toy he has a good understanding of what it’s going to do and how it’s going to benefit him,” Jen said.
As Silas grows and advances, so does his treatment plan. In 2016, Silas underwent his fifth surgery and seventh procedure, allowing him to finally bear weight on his feet. Through each step, the ADAPT Shop was on standby to adjust Silas’ equipment and help him master his next step of development.
“No one ever says, ‘It can’t be done,’” Jen recalls. “They find a way. Just take a look at the shelves in the (ADAPT Shop). They’re full of ideas that were born from the needs of children just like Silas.”
After trying various models, the ADAPT Shop helped identify the best walker that would meet Silas’ needs. When his family ordered the walker, insurance estimated that it would arrive in six to eight weeks. Unfortunately, the wait turned out to be 30 weeks, but the ADAPT Shop refused to let insurance waits hinder Silas’ development so they provided him with a customized walker for him to use immediately.
“That’s 210 days of progress that Silas would’ve missed out on if the ADAPT Shop hadn’t been here for us,” said Jen. “Whatever is needed, we know the ADAPT Shop is going to allow us to move forward. If Silas needs something that doesn’t exist, I call the ADAPT Shop.”
When Harmony was born, she was diagnosed with spinal muscular atrophy (SMA), a genetic disease that affects the part of the nervous system that controls voluntary muscle movement. SMA hinders her physical strength by impacting the nerve cells in her spinal cord, taking away her ability to walk, eat or breathe on her own.
Since birth, Harmony has conquered many challenges associated with her condition, always with her mother Tasha by her side each step of the way. When Harmony was 7 months old, Tasha contacted the Children’s Developmental Center at Southwest Human Development to begin therapy services that would help her better reach developmental milestones.
Children Developmental Center therapists worked with Harmony on a weekly basis to build muscle and increase her strength. They later introduced the family to Southwest Human Development’s ADAPT Shop team with the hope that customized assistive technology supports could further make a difference in Harmony’s life. An ADAPT Shop therapist and fabricator worked with Harmony and Tasha to develop a plan for customized equipment that would meet her unique needs.
“We needed equipment to help with her ability to stand, so the ADAPT Shop used 3D printing to modify a piece of equipment that we could use at home,” said Tasha. “Now she’s up to two hours of standing. It’s incredible.”
Tasha recalls a time when Harmony was unable to hold her head up or even roll over. When Harmony first rolled over at age 2, Tasha was overcome with joy. She credits Southwest Human Development staff with ensuring that Harmony would not miss out on any developmental gains at the hands of medical policies, processes or other “red tape.”
“One time we had to wait eight months for a piece of equipment, but using loaner equipment from the ADAPT Shop’s Loan Closet helped Harmony continue to grow and not lose valuable progress,” said Tasha. “It’s difficult to get what you need with all of the mandatory processes and paperwork. We are thankful the ADAPT Shop was able to help us.”
Therapy in conjunction with assistive technology equipment and services helped to make a lasting impact on Harmony’s development and quality of life.
“Just a year ago, Harmony lost all of her ability to sit and hold her head up, but Southwest Human Development has helped us challenge her and now she has progressed to where she’s at today,” said Tasha. “It was pretty amazing to see her go from having no mobility, to being able to sit and use her wheelchair. Her growth between then and now is night and day. I was blown away.”
Harmony and Tasha continue to work with Southwest Human Development’s Children’s Developmental Center and ADAPT Shop as Harmony makes strides in her development and explores new ranges of mobility.
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