I was frightened.
I was frightened a lot of the time.
Scared to be alone. Scared to be in a raucous crowd. Scared to talk and think about it. Scared to not talk and think about it. Scared to get up each day and face not just a world where my dad didn't exist anymore, but one where things like that could happen.
The rug had been pulled out from under me. It was a massive thing. Too big sometimes for my own head. I was either going to sink or I needed to find a way to swim. In our own different ways my family learnt 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 us.
I use my dad's death as a comparison to highlight just how arduous the battleground of raising a child with special needs can be. I'm quite adept now at swimming and although some days I am just treading water, I am mostly making my way towards dry land. What breaks my heart is that all around me heaps of my SEN sisters (and brothers) are sinking.
And they don't need to.
It is no mystery that depression is rife among special needs parents. According to a report by the National Family Caregivers Association between 40-70% of family caregivers show clinically significant symptoms of depression with approximately a quarter to half of these caregivers meeting the diagnostic criteria for major 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.
This study made no mention of sleep. Sleep is often scant when a child has additional needs due to a mixture of medical, behavioural and psychological reasons. Studies have shown that even partial sleep deprivation has a significant effect on mood. University of Pennsylvania researchers found that subjects who were limited to only 4.5 hours of sleep a night for one week reported feeling more stressed, angry, sad, and mentally exhausted.
When the subjects resumed normal sleep, they reported a dramatic improvement in mood.
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, 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? 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?
It also estimates that carers save the UK economy 119 billion each year - an average of £18,473 per carer.
Many families have to reach a crisis or breaking point before any care packages are put in place.
But isn't prevention better than cure?
The priority for Public Health England, the agency set up by the Department of Health to protect and improve the nation’s health and to address inequalities, is to reduce the burden of disease and disability in life by focusing on preventing and recovering from the conditions with the greatest impact, including anxiety and depression.
Do special needs parents count?
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 well being. 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 statementing 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. More information on new reforms can be found here
- Other aspects of the system need to be simplified. Local authority social services departments have a duty under the Children Act to assess a 'child in need', including children who are disabled. Yet getting assessed does not mean any of your needs will actually be met. There are too many stories of families not being able to access respite/short breaks unless they can prove they are in "emotional turmoil" and "emotional distress". Wouldn't it be better to offer these services to prevent this distress in the first place. Stop making us jump through hoops.
- Lifting and back pain needs to be addressed. This is a massive issue for special needs parents. The charity Backcare says that back pain "doesn't kill but it tortures". At the very least carers should have access to lifting advice and physiotherapy exercises for core strength training as they are going to need it. There is a Disabled Facilities Grant that carers can apply for to make their home more accessible yet just one occupational therapist makes the decision (whereas a statement involves numerous healthcare reports) in a one-hour assessment. It is a long drawn out process that is not for the fainthearted.
- 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. A group of bloggers are now involved in a Parliamentary Inquiry on the subject and more information can be found here.
- More support groups like SWAN UK should exist to help families learn how to cope, share information and not feel so alone.
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.
Add to all of this the fact that when we do get to the edge of the water, instead of finding a helping hand we are all too often greeted by a big fat palm in our face pushing us back in.
It shouldn't be sink or swim. We too want the chance to float for a bit and enjoy the water.
|Gabe says: "Let's get swimming"|