Aquatic therapy turned out to be just the right kind of motivation for two year-old Liliana.
Born five weeks premature, Liliana spent the first 45 days of her life in the NICU. Like many preemies, she had difficulty breathing, eating and gaining weight – all of which would result in some developmental delays.
Liliana’s mother, Tina, enrolled her in CTC’s Early Intervention program and was intrigued with the aqua therapy program. “Liliana wasn’t using her elbows at all, so she wasn’t crawling,” she says. “Left to her own devices, she’d just fall over on her hands and knees and lie there. She needed help and motivation to start moving. The pool did it for her!”
Her physical therapist, Karen, agrees. “I was amazed to see Liliana persist in aqua therapy with activities she would refuse to do at home. She’s using her elbows, arms and legs and making fantastic progress.” Tina says that her daughter’s endurance has improved along with her strength and mobility. “She’ll try harder and go longer when she’s in the pool.”
CTC’s home-based Early Intervention program has helped Liliana make progress in other areas, too, says Tina. “It’s great that therapists come to the home,” she says. “It’s hard sometimes for kids like Liliana to come to a center-based program because everything is unfamiliar – the people, the toys. But when Karen comes to our house, she teaches me how to teach Liliana using whatever I have in my house. When our session is over, I know exactly what to do.”
Karen also helped Liliana make progress with feeding. “She’s incredibly flexible and really bases her sessions on however Liliana is feeling or what she’s doing. It’s very child-centered. Sometimes our appointment is early, when Liliana is eating breakfast, so Karen will work with her on feeding issues. Other times, Liliana has already eaten and is ready to play, so Karen just adapts! We’re able to work on a variety of things and make the most of the time we have thanks to home-based therapy.”
Thanks to her progress, Liliana is also able to participate in a CTC playgroup with other children. “It’s a comfortable, safe environment for her because all the kids there have some kind of delay or disability just like her,” says Tina. “She’s learning to engage with her teachers, make eye contact, and share books with her playmates. The growth she’s experiencing has been wonderful!”
Did you know that there are few options for therapy for children over the age of 3 - especially those on Medicaid? You can help!
Jayden’s list of “no’s” as a toddler was huge. No food. No noise. No touching. No new experiences.
For his mother, Claudia, it was terrifying. “At just a year old, he was still only taking milk,” she says. “Between the ages of 2 and 4, he was subsisting on pouches of baby food. I took my children to Mexico to visit family and ran out of baby food pouches while I was there. I drove for miles trying to find a place that sold them. I was desperate so I tried a substitute and he of course refused to eat it. That was my life.”
Claudia enrolled her son in CTC’s center-based program in Tacoma where he has received occupational and speech-language therapy for the past 5 years. “He likes it here,” says Claudia. “It feels like home to him.”
One of the first critical jobs was getting Jayden to be willing to eat and to try a new food. “He’s come such a long way, but he’s still selective,” says Claudia. “He’ll eat Cheerios, but not with milk. He catches me every single time I try to sneak a new ingredient into his food. And if the packaging of a food changes, he’ll refuse it even if he’s been eating it for years.”
His occupational therapist, Joli, is playful and understanding with Jayden as she tries to get him to try a new cheese in his lunchtime quesadilla. He accepts it but declines her offer of one with beans inside. Joli says his willingness to even consider it is a triumph. “That’s a long, long way from ‘no way.’”
Jayden has progressed to the point where he was able to join a feeding group last summer with three other children. “And his favorite TV show now is a cooking show!” his mom says. “Can you believe that?”
These days, Jayden will try almost any food offered during therapy but he has a harder time eating the exact same foods at home. “For a child who has spent years only eating specific foods in the same home environment, learning to eat new foods in that same environment can be very hard,” Joli says. “A lot of conditioning happens around eating, and changing those conditioned cues at home can be very difficult.”
In addition to feeding challenges, Jayden’s sensory issues hindered his ability to play and interact with others. “Jayden didn’t like anything wet or sticky on his hands when I first met him, and he was very fearful of moving with his feet off of the ground,” says Joli. “Jayden was also very nervous about other people bumping into or touching him. He was sensitive to loud noises, fearful of movement, and didn’t like things moving around him. Imagine how hard a preschool classroom was for such a sensory-sensitive kiddo!” Today, there’s no trace of apprehension. Jayden swings happily in his therapy room playing a game with a fishing rod and using a stethoscope to monitor the well-being of a stuffed frog.
Jayden’s communication skills have also improved greatly. He was nervous around other children, and the thought of being around them or playing with them produced a lot of anxiety for him.
“Jayden is building the skills to speak up when he needs something,” Jayden’s speech-language pathologist, Molly, says. “For example, he was able to tell a friend and a therapist in a group setting that they were being too loud and to please be more quiet. This would not have happened when I first met Jayden!”
Jayden’s parents and two older sisters are an essential part of his therapy team. “They are amazing at encouraging and celebrating even the small successes with Jayden,” says Molly. “They are also open to implementing speech and language strategies at home, which help him to work on the skills he learns in therapy.”
Recently, Jayden ate the first (and second and third and fourth) cheeseburger of his life on their family’s trip to California. He loved it and wanted one every day. The only problem? It was from In and Out Burgers, and we don’t have any in Washington!
How does speech-language therapy help a child with developmental delays?
“If a child like Jayden doesn’t have access to speech language therapy, he is likely to have difficulty forming and maintaining relationships with peers, communicating his needs and wants in a school setting, and demonstrating his learning. Supporting him through building his communication skills helps alleviate some of his anxiety and build his confidence, which makes him safer and more successful at home, at school, and in the community.” - Molly, SLP
“The wonderful staff at CTC helped us see the miracle in each and every step that Abby has taken. They've helped us to celebrate the fact that each of those tiny, individual miracles make it possible for the next miracle to happen. And the next one, and the next one, and the next one.”
-Beth, mom of Abby
Abby Mclean is a 9 year old force to be reckoned with. She boxes with her older brother, Owen. She swims and practices tae kwon do, where she was recently awarded a “pink belt” created especially for her. And in her group workout sessions at CTC’s fitness center, she tackles the elliptical machine and the treadmill like an old pro.
As her mother, Beth, watches her daughter work out, she smiles. “It is pretty amazing to see her doing all this stuff,” she says. “As the parent of a child with developmental delays, it is sometimes difficult to see the progress your child is making. It's easy to become focused on waiting for a miracle – that recurring dream that she’ll wake up one morning speaking full sentences and doing backflips! But the wonderful staff at CTC has helped us see the miracle in each and every step that Abby has taken. They've helped us celebrate the fact that each of those tiny, individual miracles make it possible for the next miracle to happen. And the next one, and the next one, and the next one.”
At the age of 8 weeks, Abby was in need of a few miracles. She was diagnosed with Prader-Willi syndrome, a genetic abnormality that resulted in multiple developmental delays in speech and motor skills, moderate hypotonia (low muscle tone) and difficulty feeding as an infant. Abby was referred to Children's Therapy Center right out of the NICU.
“We started with feeding therapy,” Beth recalls, “which helped her progress from being fed through a tube to eating independently.” From there, Abby began working with speech therapists. She went from being completely silent, to using sign language, to making understandable speech.
Abby received occupational and physical therapy as well. “With a typical child, you take for granted that they will learn to turn their head, roll over, sit up, crawl, and walk. For children like Abby, all that had to be intentionally taught,” Beth says. It was important that Abby learn to become active, too. “Not only do Prader-Willi children deal with low muscle tone, but their metabolism is super slow and they always feel hungry. Weight gain is a real concern for them.”
Even as she got older, Abby continued to love the days when she got to play with one of her “friends” at CTC. “When children are little, it’s easier to get them involved in therapy but as they get older, it becomes more challenging to impart that desire to work and learn. The variety of techniques and toys the staff has at the center makes it possible to motivate any kid to work on and achieve their developmental goals.” Games using painting, swinging, water, and even flashcards were exciting for Abby. “The children just see their therapy as playtime. Meanwhile, the results are amazing!”
Back in the fitness center, Abby has moved on from her warm-ups on the elliptical and treadmill and is ready to demonstrate a jump rope routine to her group. She has been working hard and long to develop this skill, both at CTC and in school. Boys and girls all approximately Abby’s age sit in a semicircle around her, watching attentively as she grabs the jump rope handles and flips the rope above her head. After a few false starts – and a few frustrated grimaces – she hits her stride.
“I’m gonna do 20,” she announces, and the group counts down together for her, erupting in a cheer when she hits her goal. But Abby keeps going. “Four more!” she says. “Four more!”
In the photo above: Abby with her therapist, Lindsay. Abby began to defy expectations the moment her parents watched her pull herself up upright and start walking the week after she turned 2. “Prader-Willi kids don’t crawl because they have such weak arm strength,” says her mom. “We were told that she might not walk until she was 3 or 4. But one thing I have learned about her – when she decides to do something, she does it. She is a redhead, after all!”
|Above: Gabe (on slide) with his brother, Ben, and physical therapist, Kim.|
Anna’s pregnancy was completely normal. “I had no indication anything was wrong until I found myself having to pull over on the side of the road when my contractions started unexpectedly at about the 24-week mark,” she says. “I was rushed to the hospital and Gabe appeared about 90 minutes later, weighing only 1 ½ pounds.” The complications from his birth were life-threatening: bleeding in the brain, underdeveloped lungs, a hole in the heart, and a bowel perforation.
Gabe was only three days old when his doctors approached Anna and her husband, Efiz. “They told us that Gabe's prognosis was uncertain. If he survived, there was no way to know how severe his condition might be. They wanted to know what measures, if any, we as his parents wanted them to take to keep him alive.”
After seven months in the hospital, Gabe came home. “As wonderful as that was, it was also overwhelming in a whole new way,” Anna says. “He was still on oxygen when he came home, as well as a NG (nasogastric) tube for feeding. I had to quit my job in order to care for him and his brother (7 year old Ben). Efiz had to go back to work. We both struggled with stress and depression.”
Their introduction to Children's Therapy Center made a big difference. “Our therapists didn’t just help Gabe, they helped me, too. There were so many days when I’d be overwhelmed dealing with medical stuff and they’d ask, ‘How are you doing?’ and I would just say, ‘I’m not.’” They listened and gave me support – it was incredible. They helped me see little milestones and reminded me we were getting somewhere.”
In addition to helping Gabe learn to walk, eat, and talk, his therapists included Gabe’s brother, Ben, in therapy. “Ben was a big motivator. One day, when he and I stepped out of the room, Gabe just walked after us – across the room, out the door, and down the hallway! My heart was too full to say anything. I could only look at his therapist as we both blinked back tears and tried to not disrupt the magic of the moment.”
You can help more children like Gabe reach their milestones! Donate today.
Anthony is a rambunctious 4 year old boy – and his mother, Nikita, sounds proud to be able to describe him that way. “The first question after his birth was, ‘Would he survive?’” she says. “The second was, ‘What will his quality of life be like?’ Doctors didn’t know and couldn’t predict.”
Anthony was born prematurely at 27 weeks old and weighed just 1 lb 9 oz. He’d suffered a brain hemorrhage (a grade 4 on a scale of 1-4) and although doctors knew he’d be delayed as a result, they could not say to what extent. They did know he had cerebral palsy affecting his left side.
The uncertainty grew for Nikita and her family. “Not knowing [what is happening or what to expect] is the hardest thing,” she says. She began comparing his progress to that of other children, which left her more worried and anxious. “By his first birthday, Anthony was still not walking and doctors were saying he may never walk. I wasn’t sure what to believe he could do.”
One day, Nikita reached a turning point. She started thinking in other ways. “Now I ask myself, ‘What’s the best that HE can do?’” As a result, she is experiencing the excitement of seeing small miracles happen all the time. “We don’t take ANYTHING for granted because when we left the hospital with him, we didn’t know what was possible.”
When Anthony started receiving occupational therapy at Children's Therapy Center, his therapist, Lindsay, helped Nikita and her family set goals for Anthony. “At first, I didn’t even know where to start,” Nikita says. “Then out of the blue, I just started signing with him and he surprised me by picking that up quickly! That’s when I started raising my sights.”
One of Anthony’s goals became using his left hand, which, as a result of his cerebral palsy, was often at his side and curled into a fist. “Prior to therapy, Anthony was not using his left hand at all,” Nikita says, watching as her son delivers a perfectly executed left-handed high-five to his therapist. He continues to practice by carrying a box of blocks with both hands across the room – that is, until he gets a four-year old’s twinkle in his eye and allows the box to come crashing down. He giggles.
“Oh, no!” Lindsay says. “Now you have to pick up all the blocks!”
“You’re killing me, Lindsay!” Anthony says, delighted to have an opportunity to use his favorite new phrase. He begins picking up the blocks as requested and dropping them one by one back into the box. Since practicing grasping and releasing is another skill Anthony is working on, the scattered blocks have served another purpose.
Nikita’s family helps Anthony work on using his left hand more frequently at home, too. “It’s a daily expectation, not just one that happens weekly at therapy. Most kids learn how to drink from a cup starting with two hands and moving to one. We had to start Anthony the other way around and encourage him to use both hands!” Working with Lindsay has helped Nikita understand how reinforce at home what he learns in therapy.
“Luckily, Anthony loves learning,” says Nikita. “He just started pre-school and picks things up quickly, including Spanish and Japanese. He can count to 100 and loves to read! He has an entire collection of books. He loves puzzles, the iPad, and all things Elmo.”
Nikita reflects on her son’s progress. “Some milestones are tangible,” she says, using his left hand as an example. “There is a huge difference between this –“ Nikita opens her hand wide, “ – and this,” she says, closing her hand into a tight fist. “But his attitude has also changed over time. At first he was resistant but now he’s enjoying therapy. He knows he can do it!”
Want to help more children like Anthony maximize their potential? Please donate today!
No mother is ever fully prepared to receive a diagnosis of cerebral palsy for her child. For Ariel Robison, the news was especially hard to take. Recently married, she was stationed in Hawaii with her husband who was on active duty in the military, and she had no family and few close friends to depend on. “It was traumatic,” she says, her usually animated expression darkening. “I still need to remind myself to focus on what’s happening now and on how far he has come.”
And indeed, her son has come far. At the age of 8 months, Luke suffered a brain injury that left him hospitalized. Doctors’ predictions were grave. “They were certain he would never fully recover and that he’d require assistance his whole life.” He was put on both a tracheostomy and a feeding tube. Ariel and her husband could do nothing but wait.
Luke progressed, however, and was soon moved to a ventilator and then put on oxygen. Once he was eating normally, he was assigned to a rehabilitation facility to receive physical, occupational and speech therapy as well as participate in group activities with other children. “He lived [at the facility] 24/7 but they made all the parents go home at night,” Ariel recalls. “It was really, really tough to leave him, but they did that for us. They knew we needed the rest and the sleep.”
The family was transferred in December 2011 to Joint Base Lewis-McChord (JBLM) in Tacoma, a facility known for their ability to serve military families who have children with special needs. Ariel accompanied Luke on a medical transport plane while her husband remained behind to complete his assignments before joining them. It was a scary time for Ariel. “We lived at Children's Hospital” for several weeks, she said, before finally being released to her new house at JBLM. Luke was given a nurse who cared for him at home seven hours a day until he was able to breathe on his own. “And that,” says Ariel with a laugh, “was the first 16 months of his life!”
Children's Therapy Center in Tacoma was their next stop for outpatient therapy. “It has been unbelievable,” says Ariel. “Luke still has motor issues, especially difficulty swallowing. He has lots of interest in food but needs to learn how to eat, so we’re working on that now. He’s still on a feeding tube for hydration and takes a canned formula at night.” He also continues to receive occupational and physical therapy.
Ariel bounces her one year old daughter, Ryanne, on her lap as she watches her son work with his therapist. She beams. “I sometimes can’t believe this is my son, doing all these things,” she says. “In fact, we got an MRI a few weeks ago and the doctor was comparing it to the first one he received right after his injury – and it was like the brain damage never even happened. The MRI was totally different. It was so obvious from looking at it that I didn’t even need an explanation!”
The family plans to retire from military life shortly and settle in Texas, closer to family. Ariel is cautiously optimistic. “I’m a little worried about leaving all the support we’ve had from Children's Therapy Center and Children's Hospital, but he doesn’t require as much help as he did. And I know we will all be just fine.” Still, she has learned to surround herself with support. “I’m part of three online support groups,” she says. “It’s really helpful to be able to get ideas and feedback from other parents going through the same thing. I love it when adults who have gone through similar experiences themselves weigh in because they can describe things that kids can’t." Support and faith have pulled her through, she says. “Look where we are today. His doctors thought he would just lay there for the rest of his life. He has certainly proved them wrong!”
Want to help more children like Luke reach their milestones! Donate today.
I love working at Children's Therapy Center because of the flexibility and support that allows me to be a mom and a professional. No matter what's on my mind about treatment strategies, new research, evaluation tools, or unfamiliar developmental disorders, there is a colleague here who is knowledgeable and more than willing to take the time to discuss my questions or concerns.
Christina Terbovic, SLP
CTC is more than a place of business. It is like a family for those of us fortunate enough to work here and especially for the families we serve. We value learning, teamwork, collaboration. We encourage and support staff to pursue their passions and interests so that each employee represents this center of excellence well.
I enjoy working alongside smart and caring people who share my expectations for the highest quality in the services we provide for every family. We care about the family first; the child's delay, diagnosis, or need for therapy second. We meet families at a time in their lives when they may have been told what is wrong with their child. And then we have the rewarding mission of supporting the family in learning about the possibilities -- not so much about what their child cannot do, but what they have the potential to do. Ultimately, it is about what we can do to empower every family.
Linda Thompson, PT
I love working for an organization that is willing to grow, change, adapt, and respond to best meet the needs of the community as well as the employees. It is rare to find a company that is so dedicated to supporting and utilizing the strengths of its individuals, allowing us to continually improve all that we do. From documentation to parent education, from treatment strategies to teaching workshops, the whole is greater than the sum of its parts.
Joli LaBissoniere, OT
I love to work here because I have the autonomy to do what is best for families. My treatment is not limited by "higher ups" who set rigid rules based on the financial bottom line. Instead, we encourage one another to think outside of the box and go above and beyond to make things happen for families. When a family puts their trust in us and invites us to be a part of their lives, I want to do all I can to help them reach their goals. I really feel I can do that here.
M'Liss Buckles, OT
I recently returned to Seattle after visiting family back home...happily, returning to work felt like just as much of a home coming. I love that I found a second family and am surrounded by people who care so deeply for me and perhaps more importantly for the work that we do.
The flexibility is amazing. Vacations are not only tolerated, but greatly encouraged. When you are sick, people sincerely want you to go home and get well guilt-free. It’s a luxury I can’t help but brag about!
Erica Phelps, OT
I started work here at CTC right out of graduate school as a new speech therapist, and I felt supported and constantly encouraged as I learned my style and developed my skill set. Now, after years of employment here, I continue to feel surrounded by a creative, supportive, inspiring family of therapists and co-workers. I am so very grateful to work in an organization that celebrates teaming and supports and values its team members.
Lauren Kipp, SLP
In my position, I am able to greet all the families that pass thru our doors on a weekly basis. I see children's hard work pay off! It's amazing to see a child who could not speak a few months ago, or a child that could not walk, come to the front desk in their walker or wheelchair to ask me to call their therapist to 'come play.' It is the little triumphs that keep me smiling and loving what I do every day.
On a sunny morning in Burien, a little girl with strawberry blonde hair and a huge grin zips through the front door of Children's Therapy Center with just the touch of a finger on her wheelchair switch. In just a few short months, Charlee has virtually mastered the chair, which at 370 pounds weighs nearly ten times what she does. “She’s the youngest child I’ve worked with in a motorized chair,” says her physical therapist Sara. Exactly how young is Charlee? Not even three years old.
Charlee was born in Ketchikan, Alaska, with respiratory failure, broken bones, and other as-yet undiagnosed conditions. After 12 hours in the hospital in Ketchikan, Charlee was airlifted to Seattle Children's with her father, Joel. Her mother, Ashlee, spent a mere 30 seconds with her newborn daughter before she left.
Once the family was reunited in Seattle, reality hit. “People like us in the military are pretty open to adapting, but this was like putting our life in a paper bag and shaking it,” she says. “We were thrown into this world of drastic special needs. We’ve had to do so much learning – the terminology, the doctors, how to use the medical and home care equipment. When to go to the doctor, and when to stay home. Learning her unique signs and symptoms. It’s been a lot.”
Charlee was enrolled in Early Intervention at Children's Therapy Center where she has received physical and feeding therapy. She also attends a weekly playgroup at CTC with other children. “That’s her favorite – she talks a ton there. I call her ‘Queen of Playgroup’ because she answers any and all questions, even from across the room. It’s nice that she has control over something in her life.”
Charlee’s undiagnosed condition – which could be neurological or muscular – doesn’t bother her mother. “My husband would prefer to know, but I don’t,” she says. “The way I see it, the moment you’re diagnosed you’re in a box. Charlee doesn’t have a box. We never get told what she ‘can’t do.’”
Ashlee smiles as she watches Charlee maneuver her chair over to a colorful bulletin board that has caught her eye. “That chair could take down an entire fence!” she says. “And that’s a 2-year old driving it!” She allows Charlee to drive most of the time but keeps close tabs on her. “We practice everywhere – Costco, the mall, Ikea. The only thing that we sometimes have trouble with is tight aisles in stores.”
Sara attributes Charlee’s navigational ability in part to her natural smarts but also to the efforts of her parents. “They are truly remarkable people,” says Sara. “They are so invested in her and in helping her achieve!”
Charlee’s “purple chair,” as her mother refers to it, cost more than both her and her husband’s vehicles combined. “She can’t use any old chair because she requires so much support,” Ashlee says. “We have to take it with us everywhere. I never realized what a shortage of disabled parking spaces there is!” Retrofitting their family van with a wheelchair lift proved incredibly frustrating. “There was so much specificity involved. And we found that many lift companies don’t even take insurance.”
Ashlee is grateful for the insurance her family has from the military. “I have no idea how we’d afford it without that,” she says. “I don’t know how anyone does.” She plans to donate the chair when Charlee outgrows as a way to help other families.
Ashlee wants to continue therapy at CTC for Charlee even after she ages out of the Early Intervention program, particularly feeding therapy and aquatic therapy. “It’s amazing to watch her move when she’s weightless. Her arms and shoulders are weak so the movement in the water helps strengthen them.”
“Charlee has made so much progress here. It’s been wonderful to have people to talk to at CTC who are immersed in the world of special needs,” Ashlee says. “It makes our lives easier.”
“Our therapists are so much more than just therapists. Whatever else is going on in our lives, I can always count on them. They are our constant.”
Megan Carter tears up a little when she talks about the therapists, teachers, and Family Resources Coordinators who’ve been a part of her family’s life for so many years. “The amount of family support we get here is incredible,” she says. ”I feel so lucky we live here and have this kind of access.”
It’s easy to support a family so dedicated to being involved in their child’s therapy. “Megan does such a nice job connecting with us,” says Kim, her daughter Ellie’s physical therapist. “She brings us into their [family] world and helps us understand what’s going on and how we can help. She makes us feel like partners with her family.”
Family partnerships are everything at Children's Therapy Center. Megan and her husband, Andy, are the parents of two children, both born prematurely.
Spencer (below, right), who began receiving occupational and speech-language therapy at CTC at the age of 10 months, was diagnosed shortly before his fifth birthday with ADHD and Asperger’s. “Spencer’s therapists have helped us advocate for services at school, which has been huge,” Megan says. “And therapy has improved his ability to get through daily life more easily.”
The tips Megan picks up during therapy sessions are ones she and Andy practice regularly with their son. “Sometimes, when he’s really wound up, we use the analogy of an engine to remind him to calm down. We’ll say, ‘Your engine is running really high right now, so it’s time to take a break.’ The great thing is that now, he recognizes it himself and will say to us ‘My engine is too high, I need a rest.’”
Their daughter Ellie (above) was born at 24 weeks weighing less than one pound. At 2 months, she was still only the size of a 20-oz soda bottle. “She was in the NICU (neonatal intensive care unit) for 125 days,” recalls Megan. Ellie started receiving Early Intervention services immediately after her discharge. She was extremely delayed. “Essentially, she was a newborn at 4 ½ months old.”
Although she has yet to receive a formal diagnosis, Ellie has already faced significant challenges. Her joints dislocate easily. She has epilepsy. She is dependent on a feeding tube and has lung disease, so she is accompanied by a medical stroller that holds her IV fluids and oxygen tank. And when she needs to walk long distances, she uses a walker. Still, she is making tremendous progress.
“Never once have I heard anyone at CTC say my kids can’t do something,” Megan says. “They find workarounds. They believe.”
Ellie receives coordinated occupational, physical and speech-language therapy at CTC. “The way her therapists collaborate is amazing,” Megan says. “They all talk with each other and develop a plan, and change their approach when needed. They know how to accommodate medical needs. I have no doubt that Ellie wouldn’t be as far along as she is without them.”
Your support helps us provide services to children like Ellie and Spencer!
Spencer and Ellie
Three and a half year old Onora concentrates carefully as she transforms her grilled cheese sandwich into a caboose with the help of a sandwich cutter. “It’s a train!” she announces, as she takes a big bite. “And it’s delicious!”
For many children, chowing down on a grilled cheese sandwich is almost second nature. But for children like Onora, who spent the first few years of her life receiving nourishment from a feeding tube, it’s a hard-won achievement.
Eating is one of the most difficult tasks to complete – more difficult than walking or talking – and it is a vital function for survival and development. Feeding Matters estimates that there are over one million children under age five nationwide with severe feeding disorders that disrupt many aspects of life including growth, cognitive development, physical strength, behavior, and nutritional status.
Children develop feeding issues, or oral aversions, for a variety of reasons and with varying degrees of severity. In Onora’s case, a defect in her abdominal wall caused her internal organs to grow in a sac on the exterior of her body. The condition is known as omphalocele. Yet as challenging as it was to treat, Onora’s mother, Kristen, said the toughest part was yet to come since Onora’s condition resulted in diminished lung capacity and severe reflux. Feeding without a tube was simply impossible. “I didn’t anticipate that gastrointestinal and feeding issues would be the biggest part of our journey so far,” Kristen says.
Seattle Children's, where Onora was treated, recommended that she receive feeding and occupational therapy from Children's Therapy Center. In anticipation of eventually weaning her off the feeding tube, Kristen worked with Onora’s occupational therapist, Joli, to try to preempt a food aversion. “We knew [an aversion] would probably come up, but we wanted to do what we could to lessen the severity,” she explains. “We dipped her pacifier and favorite toys in applesauce or baby food to get her to try it. Even just putting food on the table in front of her, and having her accept that it was there, was a big deal!”
Kristen says that one of the biggest challenges so far has been to avoid feeling discouraged. “You often feel like it’s always two steps forward, and then one really big step back,” she explains. “One day, you’re thrilled because you’ve found something that works and you say to yourself, ‘YES!’ And then the next day it doesn’t work anymore and you’re back to square one.”
For that reason she’s especially grateful for CTC. “We’re forever indebted to Joli,” she says. “She helps us keep perspective, and when we’re really feeling down she reminds us to look at the other wins we’ve experienced along the way.” They team up to revisit goals often and “we usually find something that we can get excited about,” says Kristen. “It’s also always helpful to be able to reflect over the journey in writing and talk through it. I can ask Joli anything!”
Today, Onora samples not only grilled cheese sandwiches but also Thai food, bacon, spicy burritos, and scallops. “Graham and I always expose her to what we’re eating and give her options to try,” Kristen says. “That said, her feeding journey is still atypical and may always be that way to some extent. But it’s funny – so many parents worry about their child eating junk food, whereas I’m just thrilled my child is eating anything at all!”
Being able to enjoy snack time with her peers at school was a big turning point for Onora, Kristen says. "She wasn't eating much by mouth prior to starting school, so we weren't sure what to expect. We put no pressure on her. We knew this was just a social activity to enjoy with peers. But she sat at the table with the rest of the kids and did it. I love that she can participate with her friends in something as social as eating!”
As Onora gets older, Kristen realizes she’ll need to allow her daughter more independence. “I have to partner with her now,” she says, “and let her make choices about what she wants to eat and when. That doesn’t mean I don’t prompt her or make suggestions, though. And I’m a mom. I always worry whether she’s eating enough!”
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When Erin Aleman was pregnant with her first child a few years ago, neither she nor her husband Rob had any indication there was anything wrong. “Not a single sign,” says Erin. “And as new parents, we were completely unprepared for what we were facing.”
Their son, Rhys, has microcephaly and schizencephaly, a rare birth defect that causes abnormal clefts in the brain. “He may also have cerebral palsy,” says Erin, “but we’re still in the process of getting diagnosed.” She tears up. “This is hard to go through,” she admits. “There have been a lot of highs and lows, and lots of uncertainty.”
Rhys’s condition turned their lives inside out. “We had to reorganize our lives so we could care for him,” Erin says. “Rob works nights and I work from home. We’d planned to move out of our condo after he was born but we’ve had to stay put.” She feels fortunate, however, to have options that many families don’t. “If you’re a single parent, or have few financial options, it would be devastating.”
There are other more personal challenges as well. “‘You have dreams for your child, and over time you figure out that you need to adjust them,” says Rob. “It’s hard to make sense of it all – to be a good dad and be a good husband.”
It helps that Rhys is, in Erin’s words, “an absolute dream. He’s such a cheerful and easygoing baby!” And both Erin and Rob are adamant that Early Intervention services have made the journey much more manageable. “Being able to have his therapists come to our home and have us participate in the sessions has been so helpful,” Rob says. “We see what they’re doing and we learn from them. We’d be in the dark without them.”
“Rhys is lucky to have Erin and Rob as parents,” says his physical therapist, Sarah. “They are dedicated to his success. A lot of the progress he has made is because they work with him and play with him on a daily basis, always following through with our suggestions.”
Rhys has achieved significant milestones in his two-and-a-half years. “One of our biggest goals for Rhys was to help him learn some independence,” says Erin. “He can army-crawl now, so he can get from the living room to the bedroom without having to roll his way along!” He’s also progressed from using a gait trainer to using a walker and orthotics. His physical therapist, Sarah, is working with him on making the transition from getting out of a chair. “Right now, when he’s done eating, he lets himself fall out of the chair to get down. It’s the only way he knows how to do it.” Meanwhile, his speech language and occupational therapists, Marisol and Lani, are helping him learn to eat without choking on his food.
“Rhys works through hard activities with determination and a little bit of sly avoidance,” says Lani. “He loves to use his charming smile to let me know when I am expecting a lot from him, but with encouragement and a little bit of silly, he is willing to try!”
He’s also learning how to sign – and eventually say – “help.”
“I can tell when he needs help,” says Erin. “Rhys almost has his own language. It’s a combination of sounds, movements, signs, and a few words. I know what he’s trying to communicate, but I want others to know and I want him to communicate to them himself.” Erin and Rob also hope he can learn to walk on his own and gain better use of his weak left arm and hand.
However, Rhys turns three in June, an age at which Early Intervention services are replaced with school-based special education. “It’s not going to be the same,” says Erin. “Therapy will be more academically focused. Parents don’t have the same level of involvement – we don’t attend school with him. We’ll have no way of knowing what’s going on, and certainly not to the extent we know now. He’s made so much progress with us being part of his therapy, reinforcing what he’s learning day after day.” She hopes to enroll Rhys in Children's Therapy Center’s center-based program for children over the age of 3. “I know that might be tough, because there’s a waiting list for kids over 3 and limits that our insurance imposes. But we’re going to try.”
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Josh knew early on that his son, Alex, was struggling. “Alex was a pretty troubled child,” recalls Josh. “I knew it, but kept making excuses. The turning point for me was one day when he was about four years old. We were in his pediatrician’s office and Alex just slugged him in the face. That was really raw for me – I had to face it that he needed some help.”
Alex was diagnosed with both autism and ADHD. When he arrived for his very first occupational therapy appointment, he refused to remove his shoes to play on the mat and was kicking, throwing, and biting. “It was rough,” says Josh. “But we kept coming back. Things got better, both at home and at school. Last year he was scared to go to school. It was loud, unfriendly, and all the smells were unfamiliar. Socially, all he could do was watch other kids play and do his best to imitate what they were doing. He’d play next to kids, but not with them. Now he’s excited to be with other kids. He’s initiating games and other kids are playing with him. He has changed so much.”
In addition to the speech language therapy he has now, Alex also attends CTC’s social skills groups. “He’s learned how to be calm versus hyper with his friends,” says Josh. “And the group outings the kids take have been amazing in terms of results. They went to Red Robin one day to practice being in a restaurant and that one outing made all the difference. My wife Amanda and I can take him with us out to eat now!”
“Things can just kind of snowball for kids like Alex unless they get some help,” says Josh. “Their communication problems get worse, not better. They need to learn ways to deal with or avoid situations that bother them. Sometimes it’s as simple as learning how to read facial expressions or pick your battles.”
“Amanda and I both know that the more work we put into helping Alex succeed, the better his chances will be. The stress and nervousness we used to deal with has been replaced with relief. We are excited for him and his future!”
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