Abby Taylor didn’t like the choices her doctors gave her on her newborn son’s medical condition. He would probably be fine ― they would just have to wait and see.
Miles, Taylor’s third child, was born prematurely and was diagnosed with hypoxic-ischemic encephalopathy. Miles had received a new, specialized treatment at birth called therapeutic hypothermia meant to reduce the likelihood and severity of brain damage.
HIE, as it’s often abbreviated, affects one to six of every 1,000 births, according to the Cleveland Clinic, and its lasting impacts range from hearing or vision loss to developmental delays and cognitive impairment. Or, the baby would mostly recover.
“If you Google HIE, which I do not recommend as a new parent, the chances of him developing cerebral palsy or developmental delays and other stuff are really high,” Taylor said. “The doctors didn’t talk about that at all. They almost were like, ‘Just go out into the world and see what happens.’ As a parent, you just don’t know what to expect, even when you think you have the information.”
The uncertainty of what Miles’ future might look like concerned Taylor. All she wanted was the best for her baby.
Navigating the ins and outs of early developmental care for newborns and toddlers is overwhelming for everyone, even Taylor, who has a doctorate in early childhood special education. Questions swirl over what should be done when you observe behaviors in your little one that may indicate a challenge: Is that habit normal? Shouldn’t he have started talking? Shouldn’t he be smiling? Shouldn’t he respond to his own name by now?
And then there’s the problem of timing. Tim Peerenboom, a school psychology consultant with the Wisconsin Department of Public Instruction, said a child’s early years present the widest range of learning outcomes. Once a child reaches school age, the opportunity for growth narrows.
That’s because our brains develop the most rapidly between birth and age 5, Peerenboom said, so a parent or caregiver’s ability to observe and be proactive about developmental delays can help change the trajectory for young children.
But finding programs focused on monitoring developmental milestones on the front end, as opposed to reacting after milestones are missed, can be difficult. Miles, for example, qualified for an early intervention program from birth, but even with that support, the family had to wait 10 months for an autism evaluation, a diagnosis that would, eventually, open doors to other services through the family’s health insurance, like applied behavior analysis, or ABA, therapy.
Developmental delays and behavioral health conditions in early childhood aren’t uncommon. According to the Wisconsin Alliance for Infant Mental Health, or WI-AIMH, 10% to 16% of young children experience mental health conditions ranging from anxiety to PTSD. And the Centers for Disease Control and Prevention has reported that one in six children between ages 3 and 17 has developmental delays, including autism.
Without intervention, some of these delays and behaviors can have consequences for children in preschool and beyond. Since 2020, early care educators have reported a 60% increase in challenging behaviors, which has led to 6.5 per 1,000 children being expelled from Wisconsin’s Early Care and Education. Black children are five times likelier to be expelled than children of other races or ethnicities, a consequence, in part, of implicit bias among early care educators, according to a 2016 study by the Yale Child Study Center.
Gone unaddressed, those behaviors may worsen over time, said Ashley Bowers, assistant executive director of WI-AIMH. She offered the example of anger, often seen in children as tantrums, hitting and biting. Being punished for those behaviors doesn’t necessarily resolve feelings of anger. Kids just learn not to express their anger because they don’t want to get in trouble, she said.
But that doesn’t stop someone from internalizing their anger, even young children, said Bowers, who is a licensed marriage and family therapist. As a child grows, that anger might start emerging as avoidant behaviors, anxiety and depression. Coping becomes a means of stuffing feelings away, ushering in other unhealthy behaviors later, like drinking and drug use, Bowers said.
“When we don’t work on alternative strategies, the child not only continues to develop using those behaviors, but they also get a lot of different reinforcement that can compound the things that might have been contributing to the behaviors in the first place,” Bowers said.
Early signs provide clues to what’s going on with a child
When we talk about milestones in early childhood, we’re talking about five developmental domains: physical, including fine and gross motor skills; cognition; communication, including receptive and expressive language; social and emotional; and adaptive skills.
Those domains can give parents, caregivers and educators expectations of what’s developmentally appropriate, said Jenny Bibler, early childhood special education consultant at DPI. For example, how a 3-year-old constructs and uses two- to three-word sentences, said Bibler, can illustrate whether they’re developing at a typical, age-appropriate pace.
How a child behaves with their peers can offer further insights, said Peerenboom. It’s normal for kids between 3 and 5 to have big emotions expressed as temper tantrums, but it’s important for caregivers and educators to observe those behaviors. How often are they happening? How intense are they? How long do they last?
Biting is an example Bibler likes to use to explain developmental delays. Many young children bite before they’re able to use language to express themselves. But if they’re still biting at 3 to 4 years old, that can be a sign that their communication and language skills may be delayed, which could then have a negative effect on their social and emotional development.
But just because a child has some developmental delays doesn’t mean you should run to the teacher for an individualized education plan. Schools have multiple levels of support available, Peerenboom said. A child who bites in kindergarten may need some level of intervention within the school’s continuum of supports. As children get older, when biting is less developmentally normal, more specialized services may be needed. Acting early can give a child the appropriate learning tools and set them on a good developmental trajectory, Peerenboom said.
Finding balance as a caregiver is also critical, Bowers said. As a parent, attuning yourself to your child’s behaviors is important, but jumping to worst-case scenarios by prescribing too narrowly to those early milestones can be a disservice to both baby and caregiver. These milestones offer only a range ― time works differently in childhood. Children can achieve these developments slightly sooner or slightly later, which is normal.
“Yes, children have their developmental milestones, but there’s a whole range behind those skills. Babies and toddlers may hit them at different points, or concurrently,” Bowers said. “We always encourage parents to talk with their pediatrician if they have any concerns or wonderings.”
One resource Bowers encouraged parents and caregivers to use is the Healthy Minds Healthy Children program that connects families to infant and early childhood mental health consultants at WI-AIMH. Infant and early childhood mental health consultation pairs clinically trained consultants with professionals who work with children between birth and age 5. Currently, they are serving the Early Care Education sector.
The goal, Bowers said, is to promote early development, screen for developmental delays and support early interventions.
Learning from Miles
Bubbles, eat, play, animal.
When Miles was beginning to acquire and use language as a baby, he primarily communicated through a combination of sign language and, as a toddler, an augmentative alternative communication app on a tablet. Miles loved bubbles, so naturally, he would tap on the bubbles icon often.
If hungry, he would tap “food,” “more” or a combination. During a singalong of “Old McDonald” in his community-based preschool class, Miles would tap an animal. His taps got more sophisticated with use. Recently, he used the AAC to express an ancient 3-year-old truth: “I want pizza.” At 3, he started using the AAC to configure full two- to three-word phrases with relative ease.
Miles was introduced to sign language by his nanny when he was 8 weeks old and expressed himself through signing well before he started verbalizing language. After a continuous series of ear infections that started when he was 6 months old, Miles still communicated through gestures, vocalizations and sign language by the time he was almost 2.
Common developmental milestones at age 2 include the use of two- to three-word phrases and using verbal words to achieve basic needs.
Taylor noticed Miles’ efforts to communicate in other ways, which appeared to frustrate him, especially when he wanted to talk to his big brothers or ask for what he wanted or needed. Taylor sought out a discarded iPad and AAC app from a colleague at Vanderbilt, which Miles started using immediately.
The AAC was such an effective language-supporting device that Taylor wonders why more parents aren’t given this option as an aid to learning language. When he’s exploring his AAC, he’s not experiencing the pressure of practicing his language with another human. The stakes aren’t as high, which is especially helpful for Miles, who has autism. He can make connections by identifying words, symbols and sounds, and now, by constructing sentences.
“What we want for Miles is for him to be able to have access to communication in a way that feels comfortable and safe, regardless of where he is,” Taylor said.
Miles doesn’t need to use the AAC as much at home, but he brings it to school to work on vocabulary skills and to participate in classroom activities. He also has a special education team to help ensure he’s progressing on goals like communication and developing social connections.
But getting Miles these tools required a level of advocacy Taylor hadn’t expected. And it conjured up many confusing feelings. Even when receiving developmental services in Nashville, she still questioned whether he needed support because of how difficult it was to access.
“There’s a tendency to wait until many milestones are missed,” Taylor said. “Usually the problem has to be pretty significant before you can even get a referral.”
Sometimes a parent or caregiver will decide it’s too soon to respond to delayed developmental milestones, in hopes that those issues will resolve once the child integrates with peers at school. That method is often referred to as the “wait-and-see method,” Bibler said, and can complicate their development and learning.
“With the wait-and-see method, there is a risk that the learning gap becomes larger, there’s more to tackle, more to teach, more to break down, and all the while, your peers are moving along faster and faster,” Bibler said.
Early intervention not only gets kids at pace with their peers, but can give them even greater advantages.
Bowers, from WI-AIMH, said when she was in kindergarten and first grade, she struggled with reading. She’d go to a special reading class before school started and had extra supports during the school day. By the time she was in second grade, she was reading several grades above her peers.
A parent gaining clarity over a child’s diagnosis goes beyond confirming their gut response. It’s about setting up the child for success by using accommodations like speech devices and additional time to advance learning, Bowers said. The hope, then, is to move away from the notion that something is wrong with a child who needs special education.
“We all want our children to be doing well and thriving, and, naturally, for any parent, it can bring up vulnerability for you, because you wonder what it says about you or your family if your child is struggling,” Bowers said. “We don’t want our kid to be singled out, especially as they get older, which is why early interventions can be so important.”
IDEA unaffected by mass firings at federal Department of Education
On March 3, the U.S. Senate voted to confirm billionaire GOP donor and former wrestling industry executive Linda McMahon as the next secretary of the federal Department of Education. McMahon, nominated by President Donald Trump, has a limited background in education.
In one of her first acts as secretary, McMahon laid off half of the department’s workers nationwide, a majority of whom handle financial aid and discrimination protections. Although the branch that handles special education, the Office of Special Education Programs, was spared in the slashes, Trump told reporters in February he wants McMahon “to put herself out of a job.”
Then, on March 20, Trump followed through on his campaign promise, signing an executive order seeking to dismantle the Department of Education. But because the department was created by an act of Congress, it will take an act of Congress to eliminate it.
Chris Bucher, a spokesperson for Wisconsin’s DPI, told the Journal Sentinel on March 14 that staff reductions have not yet directly affected the support networks geared toward student mental health or special education programs that are part of DPI’s Student Services/Prevention and Wellness branch.
Even if the Department of Education were to shut down, the Individuals with Disabilities Education Act, commonly referred to as IDEA, would remain intact. But for the roughly 7.5 million students who receive special education under IDEA, there would be no federal oversight to monitor gaps or delays in ensuring students’ rights to an education are protected, according to Parent Alliance for Students with Exceptional Needs.
Meanwhile, Bowers said, one of WI-AIMH’s goals is to to scale up Healthy Minds Healthy Children to a universal program for the state. That would allow professionals who work with children from birth to age 5 in any sector to work with infant and early childhood mental health consultants for free, and funded by the state.
In its first full year, Healthy Minds Healthy Children received 41 referrals and served 34 programs, which have affected more than 2,000 children, according to the 2024 executive report.
Resources
- “Guidelines for developmentally appropriate practice in action”, from the National Association for the Education of Young Children, offers parents, caregivers and early childcare professionals guidance on learning outcomes and child development.
- Learn more from NAEYC about developmentally appropriate practices.
- Wisconsin Department of Public Instruction developed the Wisconsin Model Early Learning Standards, which sets standards for what children should know and be able to do in the classroom.
- To learn more about Wisconsin’s special education programs and to contact special education, visit the Early Childhood Special Education portal.
- Wisconsin’s Birth-to-3 is an early intervention special education program available in every county in the state. Families are set up with an individualized family service plan team, akin to school-based Individual Education Programs.
- The Power of Connection, powered by WI-AIMH, is a digital exhibit for families and community members to deepen understanding of the complex and rich emotional worlds of babies and young children, and the important role adults play in supporting early development.
- WI-AIMH has a series of “micro-learning” videos to help parents and caregivers learn more core concepts and practices in infant and early childhood mental health.
Natalie Eilbert covers mental health issues for the Milwaukee Journal Sentinel. She welcomes story tips and feedback. You can reach her at [email protected] or view her X (Twitter) profile at @natalie_eilbert.
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