By: Rachelle Rutherford, CEO of Kids on the Move
Unless you are raising a child with special needs and developmental delays or are incredibly close to someone who is, it’s easy to underestimate the incredible demands on caregivers and parents. Many families face logistical, emotional, and bureaucratic challenges to ensure their child receives the support and resources needed while providing them with the necessary hands-on care.
Recently, while filming families sharing their experiences receiving services from Kids on the Move, parents repeatedly expressed the exhaustion, frustration, guilt, and stress that accompany their lives.
In between 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, had been battling day in and day out with these challenges and was in desperate need of support.
If we can first understand what life looks like for these families, we can recognize comprehensive care’s critical role in supporting these amazing families.
It’s a 24/7 Job
Caring for a child with developmental delays and disabilities is a round-the-clock commitment, one that extends far beyond the usual scope of parenting. These children require constant supervision and care, whether medically complex or developmentally delayed. Many cannot be left unattended, even for a moment. This is not only physically exhausting but mentally draining as well.
The relentless nature of this care can leave parents and caregivers feeling overwhelmed and isolated. For many, outside support in the form of sitters or extended family are few and far between. And when they do have access to support, it’s often quite expensive. This means that taking the time that every parent needs to recharge their batteries, rest, or enjoy a hobby is usually not an option.
High Demand Parenting
Parenting a child with developmental delays or disabilities can easily be ten times more demanding than parenting a typically developing child. These challenges permeate every aspect of daily life.
Parents and caregivers must navigate individualized education plans (IEPs), seek specialized instruction, and often advocate tirelessly to ensure their child receives appropriate instruction at school. Physical, occupational, speech, or behavioral therapy sessions become a regular part of the family’s routine, demanding significant time, energy, and financial resources.
Home life, too, is profoundly affected. Tasks that are relatively straightforward for other families can become complex logistical puzzles. Even planning a vacation requires meticulous preparation. Parents must consider accessibility, medical needs, dietary restrictions, and potential sensory issues that might arise. The mental, physical, and emotional load carried by these parents is immense and unrelenting.
Providing Care For Life
Unlike raising most typically developing children, many children with disabilities or developmental delays will need at least some level of support or care from a parent or family member for their entire lives.
These families are in it for the long haul and simply do not have the option to burn out, nor do they want to. It is their honor and privilege to care for their loved ones. However, this lifelong commitment underscores the importance of mental health services.
The emotional toll on parents and siblings in these families is considerable, and access to counseling and support groups can help them cope with the stresses and challenges they face.
Comprehensive Care: A Lifeline for Families
Comprehensive care for these families can take many forms. Respite services are crucial, offering parents a much-needed break and time to recharge. Having an extra set of skilled, trustworthy hands at home can provide significant relief and ensure the child receives the attention and care they need.
Trusted therapists and educators who believe in each child’s ability to achieve their potential, regardless of diagnosis, are invaluable. These professionals can make a difference by offering hope, encouragement, and tailored interventions that align with the child’s unique needs.
Comprehensive care is not just about providing immediate relief; it’s about fostering an environment where families can thrive. It 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 interconnectedness of each family member’s well-being and working towards a future where these families are surviving and living.
Comprehensive care for families of children with developmental delays and disabilities is not a luxury but a necessity. It encompasses a wide range of services and support systems that address these families’ multifaceted challenges. 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 of and loving these amazing kids is never the difficult part. Rather, the constant navigating of a fractured healthcare system, managing a school district not designed with them in mind, and tackling increased logistics for care causes this strain.
It’s time to recognize and respond to the critical need for and create comprehensive care, ensuring every family can experience hope, resilience, and joy in their journey.