Iowa Family Story Project Iowa Family Story Project One in five of Iowa’s children and youth has a special health care need – a chronic physical, developmental, behavioral, or emotional condition that requires more than routine health care. The Iowa Family Story Project illustrates the daily joys and struggles of caring for children, youth, and young adults with special health care needs or disabilities. Photographer Thomas Langdon shadowed eight of these Iowa families. They reflect Iowa’s diversity and include those living on rural farms, in small towns, and in bustling cities. The children, youth, and young adults range in age from one year to 28 years and have a wide range of diagnoses, including autism, cerebral palsy, Down syndrome, and genetic conditions. Although the families are different in many ways, they share a set of common experiences. They must navigate a complex and fragmented System of Care, endless piles of paperwork, financial stress, and sometimes long drives for appointments that are booked months in advance. But they also share a deep, unconditional love for each other and feelings of joy and accomplishment when overcoming obstacles. The Hild Family
“Lucas needs to be challenged every day.”
ucas Hild is 27 years old and the Person provides support people recognize him. People has intellectual disability, to states to increase the use of in Walmart will give him hugs Lautism, and attention- home- and community-based and Cy, the Iowa State mascot, deficit/hyperactivity disorder. services and reduce the use of often sits next to him at He currently lives on his own institutionally based services. basketball games.” along with 24-hour support “I don’t know what we would staff. His parents Mark and have done without Money Nancy live nearby and visit Follows the Person,” said Nancy. Lucas often. Lucas enjoys riding “Lucas is better and so much his bike, swimming, and visiting happier living alone.” One the dog park. When Lucas was of Lucas’ main challenges is in school, his parents advocated communication. “His receptive for integrated classroom ability is much higher than his settings so he would learn how expressive ability,” said Nancy. to interact with others. “I think “Lucas needs to be challenged our other children learned how every day as it sometimes to be more compassionate to becomes easier for others to other people with disabilities,” do things for him rather than said Nancy. When Lucas was allow him to grow.” He does a teenager, his behaviors use some sign language, but became more challenging at still struggles to communicate home, and school struggled his needs and emotions. Mark to meet his needs. To receive and Nancy are grateful that the more behavioral supports, Ames community has embraced he moved to ChildServe in Lucas, and they hope that he Johnston, Iowa. After he turned can continue to be a part of the 20, the family was able to community and know that he utilize funds from the Money is loved by family and friends. Follows the Person program “The people of Ames have to help Lucas transition into been wonderful to him,” said an apartment. Money Follows Nancy. “He’s very friendly, and IOWA CITY
The Shaw Family
“Our typical day is beautifully chaotic.”
rianna and Parrish Shaw have two sons, Amaren and Arden, and their typical Aday is “beautifully chaotic.” When he was 2 years old, Amaren was diagnosed with autism. “I’m an ‘on the go’ person,” said Arianna. “So I had to learn how to slow down for him.” Following his diagnosis, Amaren received occupational therapy and along with his mother, completed Parent-Child Interaction Therapy. He had an Individualized Education Plan for a while, but was able to achieve all his goals, so the plan was discontinued. Amaren’s parents have always encouraged him to participate in activities that interest him including engineering camp, wildlife camp, swimming lessons, and soccer. Arianna applied for “summerships,” grants, and scholarships to fund some of these activities. “The public library is our second home,” said Arianna. “We make weekly trips to find books about Amaren’s new interests.” Amaren is in first grade and is doing well, but he still has challenges. He won’t eat a lot of food with textures, including meat, fruit, and vegetables. “And he can’t get wet,” said Arianna. “The other day he got a drop of water on the wrist of his shirt and insisted that he had to change.” Arianna attributes Amaren’s success to the early interventions he received and the support of her extended family. “My hopes are that he never lets anyone determine what he’s capable of,” said Arianna. “His dream is to be a train engineer, doctor, or police officer.” NORTH LIBERTY
The Schminke Family “Grayson is happiest when he is at home, with familiar surroundings, and with his puppy Milo.”
rayson is 2 years old and treatment, Grayson’s overall lives with his parents, prognosis would not change. GDion and Kristin. In “They said that although January 2018 Grayson was Grayson’s brain was only diagnosed with Late Infantile mildly affected, his peripheral Metachromatic Leukodystrophy, nerves were very affected,” a disorder that affects both said Kristin. “The transplant the brain and the nervous may slow the disease down, system. Although Grayson but the deterioration is going started walking when he was 15 to happen. Grayson’s best months old, his parents started time is right now.” After four to notice balance issues three days of consultations, Dion months later. At first his mother, and Kristin made the difficult Kristin, thought it was an ear decision to take their son home. braces and wheelchair that infection causing his balance “We want Grayson to have Grayson will need later. Dion issues, but that wasn’t the quality of life, not quantity,” and Kristin have both had to case. Doctors then did a blood said Kristin. “He’s too smart. cut back on their work hours test for Muscular Dystrophy. A He wouldn’t want that.” and are grateful that both sets couple of weeks later his eyes of grandparents live nearby crossed and he was admitted The Schminke’s welcomed and have been able to support to the hospital for a suspected Milo the puppy shortly after the family. “Every day is an brain tumor. Eventually the Grayson’s diagnosis to be a increasing challenge,” said results of a broad scan genetics companion to Grayson as his Kristin. “He’s losing function, test revealed the diagnosis of mobility decreases. The family struggling to sit up, struggling Late Infantile Metachromatic is now receiving a number of to roll over. It’s like when I had Leukodystrophy. The family services and supports including an epidural during his delivery traveled to Pittsburgh to talk physical therapy and palliative where eventually I couldn’t with specialists about managing care, and Grayson is working move my legs. It’s like that. He’s his symptoms, and since with a developmental teacher trying to roll over and his upper Grayson’s symptoms were through Early ACCESS. He body will go, but not his lower still mild enough at the time, is enrolled in the Medicaid body. People are having a hard they offered an experimental for Kids with Special Needs time understanding how fast treatment involving a bone program, but his parents are it’s going to go.” marrow transplant. Their doctor still not sure if these services explained that even with the will pay for the therapeutic SHELL ROCK The Sauer Family “Respite care without a doubt is one of the most important supports that we have found and use almost every day.”
aetra is 9 years old and which has been remodeled to lives with her parents meet Paetra’s changing needs PFritz and Charlene, her and to accommodate multi- grandparents Jo and Bob, generational living. and her 5-year old brother Fulton. Paetra has a number of Paetra and her family have conditions including intractable been active in their community, epilepsy, dysphasia, chronic participating as a mentor family bronchitis, microcephaly, for Wartburg College students and developmental delay, but enrolled in a Working with no formal diagnosis. Doctors Different Abilities class and call this “Syndrome Without moderating parent sessions a Name,” or SWAN. Paetra for Up with Families. Fritz and attends Southeast Elementary Charlene say they don’t see a lot School and has an associate of people with different abilities with her at all times. The school out in the community and are keeps communication lines always looking for opportunities open by sending a tablet and to include others. “Advocating communication notebook home for accommodations, like with her every day. “Paetra accessible parking, is not done is very much aware of her just for Paetra,” said Charlene. surroundings,” said Charlene. “There are other people who will “She loves to be included and need this now and in the years loves to be with her friends. to come.” Paetra’s family has Her face is her voice.” also learned the importance of taking time for themselves. “We Six years ago, Paetra’s parents find that exercising and taking made the decision together moments alone or as a couple for Charlene to stop working is one of the best medicines so she could attend Paetra’s we can give ourselves,” said appointments and be available Charlene. “Respite care lets that when one of her frequent happen and without a doubt seizures or illnesses occurs. The is one of the most important family moved into Charlene’s supports that we have found parents’ home in Shell Rock, and use almost every day.” ANKENY
The Dang Family “Grandma Thao is a second mom to the children, an ‘alloparent.’ She cooks and cares for the children.”
atthew is 8 years old According to a 2014 UCLA and lives with his study, the prevalence of Mparents, Jenny and children with autism is 43 Bach, his grandmother Thao, percent higher among children and his two brothers and one of parents of Vietnamese sister. Matthew was diagnosed descent compared to white with moderate to severe autism, Americans. But when Matthew attention-deficit/hyperactivity was first diagnosed, and even disorder (ADHD), and now, the family noticed a lack intellectual disability when he of racial and ethnic diversity was three years old. His brother among the children in photos Levi, age 10, was diagnosed with and other autism materials. ADHD, and brother Nicholas, The family receives support age 6, has mild autism and from neighborhood families ADHD. Matthew loves going to and members of their church, the park and going for rides, and Jenny’s participation but he rarely plays with other on the Iowa Autism Council children. He receives applied has provided opportunities behavior analysis, speech for information locally she therapy, and occupational wouldn’t have gotten otherwise. therapy, but is still on the Jenny and Bach hope that waiting list for community Matthew will find someone who living supports. “It can be very will love and take care of him, stressful trying to juggle day- someone who will “take their to-day needs and meet all the place” someday. They dream responsibilities of the children’s that Matthew will develop and different needs,” said Jenny. grow in his talents and skills so “Especially balancing activities, that one day he can use those school, work, and home.” in an occupation he enjoys. Jenny’s mother, Thao, is like a second mother to the children and makes most of the meals for the family.
RUTHVEN
The Winston Family
“My kids are super happy kids.”
he Winston household to get hurt, and I don’t want includes Ken and April someone else to get hurt,” said TWinston, their daughters April. “He’s very, very strong.” Savannah, Aleah, and Skye, Among their three children with and April’s son, Atreyu. Aleah, special health care needs, they 3 years old, and Skye, 1 year see 13 specialists, most of them old, have been diagnosed with over two hours away in Sioux global developmental delay, Falls, South Dakota. Savannah believed to be the result of PLEC will sometimes get upset when gene-related disorder. Both girls her parents show the other met early milestones and then children too much attention. began to regress. “Skye was on “For the most part she is very track for the first seven months caring of her siblings,” said and was even standing on the April, “but you can tell that at couch,” said April. “Within two times she just wants some alone weeks she lost everything.” time with her mom and dad.” Both girls have feeding tubes The Winstons receive ongoing and receive physical therapy, support from their extended occupational therapy, and family and the community. “If it speech therapy. Their oldest wasn’t for Community Health, daughter, Savannah, has only we wouldn’t have car seats,” said one of the gene mutations, April. “Atreyu’s car seat was very and is otherwise unaffected. expensive. Even the local bank Atreyu, 8 years old, has autism, is a huge supporter; they helped intellectual disability, and pica. us to buy a van.” Ken and April Sometimes the difficulties of find joy in the milestones that autism can lead to behaviors their children continue to reach. that are challenging to “My kids are super happy kids,” understand and address. It’s said April. “They have a ritual hard for the Winstons, for on Saturday morning where Ken example, to leave the house and Savannah dance, while the when respite is not available other kids watch and laugh.” for Atreyu. “I don’t want Atreyu DUBUQUE
The Stumpf Family “Having Kyle around makes for a happier work environment. He always has this contagious smile on his face. He makes co-workers want to come to work.”
yle is 28 years old and Developmental Disabilities lives with his dad, Bill in Council, Bill began to learn more KDubuque. He has two older about integrated employment and sisters, Kristen and Kara, one Kyle began using Iowa Vocational niece, and three nephews. Kyle has Rehabilitation services. During Down syndrome and intellectual this process Kyle was offered disability, and he experienced a employment from a friend who lot of medical complexity in his was managing a local pizza early life. He was born six weeks franchise. “With the assistance of early and had surgery when he supported employment services was six days old. Over the next funded through the Intellectual several months, Kyle was found to Disability Waiver and Vocational have a heart defect, had difficulty Rehabilitation, Kyle remains breathing, and feeding issues. competitively employed,” said Bill. Kyle’s supervisor, Alica, says It was always his family’s goal for that his presence has positively Kyle to be included in school from affected other employees. “He the time he started preschool. always has this contagious smile High school for Kyle in a on his face,” said Alicia. “He makes segregated setting wasn’t bad, co-workers want to come to work.” just less inclusive than what Looking back at the whole process, his family had envisioned for Bill acknowledges that he was one him. “The early years were more of the barriers to Kyle’s integrated successful than junior high and employment. “The sheltered high school,” said Bill. “At that workshop had become comfortable point it seemed easier to focus for all of us,” said Bill. “Kyle on finishing school and utilizing enjoyed what he was doing, and waiver services to become I was content that he had a place more independent.” Following to go every day.” Building on their high school, Kyle worked in a experience, Bill and Kyle have now segregated setting at subminimum become advocates for integrated wage for about five years. In employment and help others make 2013, while serving on the Iowa the transition from sheltered work. SHUEYVILLE
The Metzler Family “We’re still in touch with our son’s birth parents. The more people to love him, the better.”
isa and Dan Metzler have Armando attends Prairie High visual impairment rewire the two adopted children with School, is part of the Prairie brain to enable them to see.” Lspecial needs: Armando, Hawks marching band, and is Lisa hopes that in the future, age 16, and Tristan, age 9, both doing great. He has participated Armando will be able to live in of whom came to the Metzler in Special Olympics, attended a supervised setting and work family as foster children. They Camp Courageous, and is in a job he enjoys. “My older also have three adult children, involved in the Best Buddies children gave up a lot growing including a son in college. When program. “The school district up,” said Lisa. “But now, as Armando was 21 months, his is awesome,” said Lisa. “The adults, I think they all feel good birth mother sent the Metzlers teachers go above and beyond.” about their experiences of a long letter asking them to Armando is learning cooking having been a foster family and adopt him. “At that time we were skills, attends an autism seeing what others go through.” so naïve,” said Lisa. “We knew social skills group, and works he had complications from with a respite provider on prematurity, but we thought he supported community living would outgrow those.” Armando skills. Tristan is in a wheelchair was premature, weighing only and is dependent on others 1 pound, 2 ounces at birth. He to move him around. He also has a moderate intellectual uses apnea, heart rate, and disability and was diagnosed oxygen saturation monitors with moderate autism four at night. He attends Prairie years ago. Tristan suffered a Ridge Elementary School and traumatic brain injury when he is learning to ride a specially was 10 weeks old, resulting in adapted bike, which is helping cerebral palsy, cortical visual to develop his strength and impairment, seizure disorder, coordination. Both boys are on and spastic quadriplegia. While Home and Community Based Tristan was in foster care with Services Waivers, but the the Metzlers, they were asked family still struggles to get all again to consider adoption. the adaptive equipment and “That decision was harder,” said home modifications they need. Lisa, “because we already had a “Tristan could benefit from a special needs child.” device called a Light Aide,” said Lisa. “This has been shown to help children with cortical Credits
PHOTOGRAPHER Thomas Langdon
DESIGNER Leigh Bradford
CENTER FOR DISABILITIES AND DEVELOPMENT STAFF Julie Christensen Cindy Pauk Deb Westvold
CHILD HEALTH SPECIALTY CLINICS STAFF Jennifer Cook Anne Crotty Martha Hanley Sharon Rettinger Thomas Scholz Saira Steen Rachell Swanson-Holm Jean Willard Diane Zaerr Brenneman
The Iowa Family Story Project is based on the “Super Parents” project developed by the Lucile Packard Foundation for Children’s Health. For more information about the exhibit visit chsciowa.org/programs/iowa-family-story-project.