Go online and search the phrase “The cost of raising a child with Special Needs,” and you will find articles from all over the country documenting the cost to families each year for their children. Autism Speaks published an article in 2014 that estimated that raising a child with autism ranged from $1.4 million to $2.4 million until they are 18 years old. We can quantify the cost of raising our children with special needs regarding the money they cost outside of a typical child, but can we truly document the “cost” to most families?
Children with special needs typically have medical, therapeutic, pharmaceutical, respite, and caregiver expenses. Then there is all the equipment that is needed for families, homes, and children as they grow in age. These fees can include therapy items, items for mobility, equipment adapted for specific disabilities, sleep-safe beds, modifications needed for the home, and vehicles to support the transporting of a child with mobility issues. From the dollars and sense standpoint, it’s clear that raising a child with special needs requires more money, time, and energy to get them the help they need. Parents are often forced to find flexible work, quit working, or take jobs that are below their actual economic worth to just scrape by for their families.
Our life has been no different in navigating this aspect. Our son is both medically fragile and developmentally delayed due to a brain injury. We have had to manage the expenses of therapy centers, therapy equipment, wheelchairs, adaptive toys for his fine motor disabilities, and the out of pocket fees for deductibles and supplemental insurance. We need to spend money on items for his g-tube, diapering for incontinence, and special shoes to fit his braces for his feet. There always seems to be some bill due, something needed, and there never seems to be enough money to pay for it all.
Numbers that total into six and seven figures annually are not at all uncommon for families with children with disabilities. The fact is our children are expensive, and they can cost more than four children combined.
The real cost of caring for children with disabilities cannot just be measured in dollars and cents. There is so much more to the story for so many of us in this world. We give up our social lives, our mental health takes a beating, and our physical health and well-being get lost in the shuffle. Most of us are exhausted both mentally and physically, lack support from friends and family, and feel isolated trying to navigate the wild rollercoaster of our children’s care.
Our lives on social media are sometimes the only lives we have as most of us spend the bulk of our time driving to and from appointments or holed up at home trying to stay away from germs. We find that our priorities are no longer revolve around what everyone else is doing or the next fun event in the neighborhood or community. Our time and energy are spent working on paperwork, implementing homework from therapy, giving medications, coordinating care with medical providers, IEP Paperwork, insurance appeals, and state and federal documents to access services.
We find ourselves tired at the end of our days, void of emotion, and often feeling spiritually drained. The cost is located in the bruises on our arms from managing a meltdown, or by scratches on our chest from trying to change a diaper of a powerful child. We find the cost in our hearts as they ache for connection, and we long for friendship, fellowship, and someone to stand beside us and understand us. For many of us, the cost can be seen in our fractured marriages, divorces, or our partners that have left or abandoned our children because they couldn’t handle the stress.
Many of us find ourselves alone at night, distant from our partners, or wholly separated from them by miles. The real cost of raising our children is what it does to our overall psyche and well-being. Many of us aren’t living with Post Traumatic Stress but Continuous Traumatic Stress. Our stress levels are high at all times as we move from one trauma to the next. There is never an endpoint for when the trauma will end because there is no end. For many of us the only way out of all if this will be the death of ourselves or the death of our child.
Many of us have been forced to give up on our dreams, goals, and careers to care for our children. We lose ourselves in the midst of their care and often forget our identity outside of our child. Our lives are so intertwined with our children because they depend on us for everything and will continue to require this level of care into adulthood.
We give up on the dreams we had for our children and what we thought their future would hold. As they grow, they may develop physically and biologically, but many of our kids stay infants, toddlers, or adolescents for their entire lives. They may never drive, go to prom, get married, or have a full-time job. Many of our children will either remain in our homes until we die or move to a group home with full-time caregivers.
However, in the midst of all of this, we also find that there are aspects that we learn about life that make the costs worthwhile. We watch the drive and fight of the human spirit, and we witness miracles as our children beat the odds doctors or professionals placed on them. Most of us learn the real value in life is not in money or possessions, but the small moments we spend with our child as they master a new milestone. We begin to realize that even though our children may not have a typical life that they can still have a happy and fulfilling life.
Our lives become filled with out families that have children with special needs, and we find our community. As our networks increase, we find new ways to help our children. Other parents become our Go-To’s for questions on parenting, equipment, therapy, and medical issues. We find mentors who lead us through the trenches of parenting our special children, and so many of us no longer feel so alone.
The financial burden may never go away, but the love for our children is what carries us through and makes the journey worthwhile. We learn to do more with less and find ways to have still everything we need with less material in our homes. The reality is our children makes us appreciate that life is precious, nothing should be taken for granted, and we find ways to see beauty in the smallest places.
Sure, there are financial costs, emotional costs, and physical costs to raising our children, but our children’s lives are worth all of the sacrifices, changes of our dreams, and steps we had to take to alter our careers. We stop looking at this as a cost, a burden, or stress, and realize the blessings we receive every day by being their parent. There is no more significant gift than the love you get from the child you fight so hard to have the best life possible.