In 2001 my father died. The feelings of raw anguish, sadness and anger were at times all consuming, but they lessened over time and are more like a dull ache today interspersed with random waves of loss. What took much longer to deal with and what surprised me the most in its intensity was the fear.
I was frightened. I was frightened a lot of the time.
Mostly scared to get up each day and face a world where my dad didn't exist anymore. The rug had been pulled out from under me. I was either going to sink or I needed to find a way to swim and keep on swimming.
Years later, although a different set of circumstances, I am in a sink or swim situation again. But there is one brutal difference. This time around there are many more things conspiring to drown me.
I am raising a child with special needs. And at times it is a battlefield.
It is no mystery that depression is rife among special needs parents. A report by the National Family Caregivers Association stated that between 40-70% of family caregivers show clinically significant symptoms of depression. It attributes the feelings of "struggling to make sense of a foreign, chaotic and often lonely world" as a source of the depressive symptoms.
When the causes of stress in special needs parenting were examined in a study in the Journal of Pediatric Psychology, high on the list were doctor or therapy appointments, medical treatments, hospitalisations, school issues, integrating the child's needs into the family routine, watching their child in pain, worrying about the child's vulnerability and explaining the health problems to those outside the family.
The researchers also cited that this stress could be intervened upon with supportive measures.
Antidepressants are too often handed out as a cure all. Yet writing a prescription is not enough. It is like sticking a plaster on a gunshot wound. Special needs parents want to be able to manage, they want to be able to cope, and more importantly they want to be empowered to do this.
They want to swim not sink.
Alas too often the system fails to buoy us up and instead conspires to add some concrete boots into the mix.
Why? Cost issues? Is it the belief that we are looking to swindle the state out of vital pennies from the central pot? That there is only so much to go around and these children are getting more than their fair share?
Hopefully the new Care Act 2014, which came into force in England this month will address these issues as will stronger assessment rights in the Children and Families Act 2014 for parents caring for disabled children and young carers. Previously, access to assessments was limited to those providing regular and substantial care, and there was no duty on local authorities to provide services to meet carers' needs. Now all carers providing care can have an assessment and, if they are eligible, the person they care for or the carer themselves can have support put in place.
This is welcome news. Unpaid carers save the nation a staggering £119 billion every year - that's more than entire NHS budget.
In the past many families had to reach a crisis or breaking point before any care packages were put in place. Yet isn't prevention always better than cure?
I know each family copes in different ways and every child is different but nearly four years in, I believe the following is key in helping to prevent depression and mental illness among our ranks (and I suspect this list is the mere tip of the iceberg):
- We need one healthcare professional overseeing and advocating for the family's wellbeing. Support does exist in different guises from the social worker and health visitor to Portage and the community nursing team. Yet their job is to put out fires once they have started in their own little rooms of the house, not to help you navigate through without the fires starting in the first place.
- We need access to the right information. This would help dispel the myths surrounding the educational statement process. There are many horror stories about statementing and SEN reform that make parents anxious before the process has even begun. Most of the time it is seamless and there is a good system in place.
- We need more transparency. It is nearly impossible to find out how to access direct payments for carer aid and respite.
- Lifting and back pain needs to be addressed. This is a massive issue for special needs parents. Prevention is now a legal obligation of Councils following the Carers Act. All carers should have access to this information.
- Families should be helped to get back to a "new normal" as soon as possible. Many parents cannot work as there is no adequate childcare out there for their complex children. Many lose their jobs and houses as a result.
The best swimmers are those that can relax and feel in control in the water. We lose our buoyancy once we panic. Adjusting to life with a child with additional needs is like trying to swim when you are scared of the water. It is not being able to see land for the obstacles. It is about every day trying to not give up and go under.
It shouldn't be sink or swim. We too want the chance to float for a bit and enjoy the water.