Unless you’re raising a child with special needs and developmental delays or are incredibly close to someone who does, it’s easy to underestimate the incredible demands placed on caregivers and parents. Many families face logistical, emotional, and bureaucratic challenges in ensuring their child receives the necessary support and resources while providing necessary practical care.

Recently, while filming families sharing their experiences benefiting from Kids on the Move’s services, parents repeatedly expressed the exhaustion, frustration, guilt and stress that accompany their lives.

Between two interviews, our cameraman confided that his nephew had been diagnosed with autism spectrum disorder (ASD). Yet it was only through these interviews that he was stunned to learn that his sister, a single mother, was battling these challenges day in and day out and desperately needed support.

If we can first understand what life is like for these families, we can recognize the critical role of comprehensive care in supporting these extraordinary families.

It’s a 24/7 job

Caring for a child with a developmental delay or disability is a 24-hour commitment that extends well beyond the usual scope of parenting. These children require constant monitoring and care, whether they are medically complex or developmentally delayed. Many cannot be left unattended even for a moment. It is not only physically exhausting, but also mentally.

The incessant nature of this care can leave parents and caregivers feeling overwhelmed and isolated. For many, outside support in the form of caretakers or extended family members is rare. And when they do have access to assistance, it often costs them quite a bit. This means that taking the time every parent needs to recharge, rest, or enjoy a hobby is usually not an option.

Parenthood in high demand

Parenting a child with a developmental delay or disability can easily be ten times more demanding than being a parent of a typically developing child. These challenges permeate every aspect of daily life.

Parents and guardians must navigate Individualized Education Plans (IEPs), seek out special education, and often advocate tirelessly to ensure their child receives appropriate instruction in school. Physical, occupational, speech, or behavioral therapy sessions become a regular part of the family routine, requiring significant time, energy, and financial resources.

Family life is also deeply affected. Relatively simple tasks for other families can become complex logistical headaches. Even planning a vacation requires meticulous preparation. Parents should consider accessibility, medical needs, dietary restrictions and potential sensory issues that may arise. The mental, physical and emotional burden borne by these parents is immense and unrelenting.

Providing care for life

Unlike raising typically developing children, many children with disabilities or developmental delays will need at least some level of support or care from a parent or caregiver. family throughout their lives.

These families are in it for the long haul and simply don’t have the opportunity to burn out, nor do they want to. It is their honor and privilege to care for their loved ones. However, this lifelong commitment highlights the importance of mental health services.

The emotional burden on parents and siblings in these families is considerable, and access to counseling services and support groups can help them cope with the stress and challenges they face.

Comprehensive care: a lifeline for families

Overall care for these families can take several forms. Respite services are crucial, providing parents with a well-deserved break and recharge time. Having extra competent and trustworthy hands at home can provide significant relief and ensure that the child receives the attention and care they need.

Trusted therapists and educators who believe in every child’s ability to achieve their potential, regardless of diagnosis, are invaluable. These professionals can make a difference by providing hope, encouragement, and interventions tailored to the child’s unique needs.

Comprehensive care is not just about providing immediate relief; it’s about fostering an environment in which families can thrive. This involves believing in the potential of every child, supporting parents and caregivers in their roles, and ensuring that siblings also receive attention and care. It’s about recognizing the interdependence of each family member’s well-being and working toward a future where these families survive and live.

Comprehensive care for families of children with developmental delays or disabilities is not a luxury but a necessity. It encompasses a wide range of services and support systems that address the multifaceted challenges of these families. Investing in comprehensive care ensures these families receive the support they need to lead fulfilling and balanced lives.

As many of our parents at KOTM have shared, being the parent and loving these amazing children is never the hard part. Rather, constantly navigating a fractured healthcare system, managing a school district that was not designed for them, and managing the increased logistics of care are at the root of this tension.

It is time to recognize and address the critical need for comprehensive care and create comprehensive care, ensuring that every family can experience hope, resilience and joy in their journey.