Impacts of a disabled child with complex medical issues on parent /s or caregivers

A child who is depressed, devalued by society, and due to a lack of societal acceptance in our culture can be heartbreaking to keep a child struggling through severe intellectual and developmental disabilities.
(This article has been written in response to Parliamentary Ministers and the National Disability Scheme for the assessment of impacts on families and what has been expected of parents) as a parent of a new diagnosis please read with caution.
Originally children were placed in institutions and giving them full care but attention was not profound. With time, the era has revolutionized along with new rules that had focused parents becoming much more aware and being the ultimate support of their children.
Disabled children often have complex educational and childcare needs as well as unique recreational and social needs. They may need early intervention programs for physical, developmental, and emotional rehabilitation. Specialized education programs and facilities are necessary.
They may also have complex medical needs associated with the disability
Living with a disabled child can impart severe impacts on their entire family–parents, siblings, and extended family members as well.
Raising a child with disabilities and complex medical issues in an abled world takes a toll. Parents stood at first, suffering from the consequences of parenting their disabled child.
It u a unique shared experience for families and can affect all aspects of family functioning. The impacts likely depend on the type of condition and severity, the physical, emotional, and financial wherewithal of the family and available resources. The burden incurred by parents and their families can be substantial, especially among those who had to parent a child that has severe medical issues and abnormalities.
For parents, having a disabled child may increase stress, and extra tension, take a toll on mental, physical, financial, and psychological health, and make it difficult to find appropriate, effective, and affordable care for their child.
Parents spend the majority of their time under pressure in stressful conditions having no time for themselves, socially isolated and affected decisions about work, hard to concentrate on issues, education/training, having additional children, and relying on public support. It may be associated with guilt, blame, or reduced self-esteem and self-actualization. You can be gripped by fear concerning your child's future, whether you are doing enough or if you are doing the right thing doing right or not, this in itself can impact your mental health your ability to care for other siblings let alone self-care for yourself.
Initially, you can feel so isolated as it's quite common for your social circle to diminish, and your new network becomes like-minded people.
The most emotional and heartbreaking toll lies where parents are forever advocating for their child, trying all their efforts every single day, repeating the same diagnosis and same requests over and over.
For parents, advocacy gets time-consuming as well as they are emotionally and physically exhausted with time. They lost all the hopes and dreams they once planned for their children resulting in grief and sorrow because the parenting, they expected turned into something they had never thought of. With time, they get emotionally, socially, physically, mentally exhausted, and depleted.
The introduction of the National Disability Scheme (NDIS) was meant to change many things for the disabled, their families, and carers, every 12 months you are trying to prove the existence of the disability, forever having to justify your child's needs.
The NDIS planners are uneducated within the disability and or medical field (TAT medical and care advice arent making advice on individual requirements, assessments are made on what would ordinarily be expected of a condition, not based on co-morbidities how they impact each other and or the care requirements, not all children and diagnosis and or prognosis along with treatment plans are the same)
The expectation on parents can be horrific and should be assessed based on what is expected and what opportunities are available for work etc of the everyday family, and support should be allocated and assigned based on that parents and caregivers should have the ability to work if they choose even if the child is an infant, as the everyday ordinary family has the opportunity or choice to leave the infant at a child care centre from birth. The parents in these circumstances don’t have that opportunity.
Some parents develop PTSD, Anxiety as they have seen their children in traumatic, life-and-death situations. They had been with them in their painful surgeries and enervating months and years of rehabilitation. Parents of ventilated children and or tracheotomy or overnight care requirements have no peace of mind, risking their health due to sleep loss and exhaustion.
NDIS should provide allocated support for Mental health support of parents and or caregivers, they should have a key responsibility to ensure planning covers the ability of parents to have self-care, as burnout of parents is significant.
Our parents have had to fight hard for their children to involve them in daily life activities and regular-based programs at schools. Helping to develop and maintain friends for your child can be difficult and heartbreaking.
You can lose hope as your once plan of having children didn’t look like this instead it resulted in grief and sorrow because the parenting, they expected turned into something they had never thought. With time, they get emotionally, socially, physically, mentally exhausted, and depleted.
Parents have had to suffer the taunting nature of society against their children. They may say nothing but we see the stares. Inclusion has certainly come a long way, needs to come a lot further.
Parents have put their lives on hold. Parents need more offered support, financially, physically, and emotionally from the beginning As a parent accepting diagnosis and your new life and the emotions that go with that can reduce depression and stress in parents with children suffering from disabilities, and Self-compassion may fuel parent resiliency. In 2014 Pediatrics study showed: Peer-led groups treat distress in parents of kids with autism. Over the last decade, studies had shown that parents of children with a range of disabilities leading to medical and psychological issues like cerebral palsy, autism, and Down syndrome have higher rates of depression and stress than other parents. This 2013 Australian report provides a good overview of our unique mental health challenges: Enhancing support for the mental health of parents and careers of children with disabilities. The most evident resource needs involve health care. Disabled children require not only high-quality primary care, but often require multifaceted specialized care on a long-term basis. Ideally, children with complicated cases will have a team of specialists who work together in a multidisciplinary approach.