It is good to talk

I have written before about how isolating being a parent of a child with special needs can feel, but if you couple that with a mental health issue then it is a double whammy. I have looked but not yet found a statistic for the prevalence of mental health problems amongst special needs parents, but I suspect that, if the average of the full UK population is one in four will suffer, then I am guessing at four out of five. That is only based upon the conversations that I have had with other parents and carers, particularly at the monthly coffee mornings that I run at school, and nothing more scientific than that.

Many special needs parents are sleep deprived and that, being a form of torture over any length of time, can create mental health issues. It is impossible to relax fully when you have a child with special needs : even when they are at school, you can still get the call, as happened to me yesterday, to say that Joshua had had a cluster of seizures and that he needed emergency medication to end them. As this happened at around 2pm, it meant that I brought him home rather than risking him in the taxi where they cannot deal with his seizures adequately. When Joshua is at home, you are on ‘red alert’ 24/7 : last night he went to bed at 9pm, exhausted by the after-effects of his seizures and rescue medication, and I followed him around 10.45. I heard him up and on the landing and thought it must be morning, as I had definitely had some deep sleep which had suddenly been disturbed by hearing him, but once we got downstairs I checked the clock, and it was just midnight, so I had been asleep for just over an hour. He proceeded to have some cereal while he experienced a few absences, and then he curled up on the settee, happy that I was with him, and fell asleep again. I did not want to disturb him, so I spent my night on the two-seater settee, my ear primed for any more seizures.

We can spend our lives, or so it seems, fighting for the rights of our vulnerable children, so much so that we neglect to take care of our own health, physical or mental. If those battles are won or lost, the toll on the parent is huge and it has to have an impact.

None of us knows what the future holds for our children, but that anxiety is multiplied when your offspring has special needs : will they ever leave home and be able to manage an independent life of their own? Will they be able to function in the real world beyond school, where relationships and employment should be their future? What will happen to your child once you are no longer around or able to care for them? All of these concerns could drive you mad if you let them. My technique for self-preservation is that I do a very good impression of an ostrich!For example, I knew that we needed to write a will to protect Joshua’s best interests for when my husband and I die, but that is only something that we finally achieved in his 17th year, that is how difficult that was to face.

So having tried to give an insight into how it feels to be a parent of a child with special needs, let me tell you one thing that I have found that eases the alienation and stress. For me, sharing with and supporting other parents in a similar position, is really beneficial.  You immediately feel a common bond and do not have to explain what you mean as they know from thier own experience. At the coffee mornings, our ‘children’ – Joshua is the oldest at 17 – are all very different, have a different diagnosis and their behaviours are all unique, but we are all parents , trying our best for them and we face many of the same battles with social workers, local authorities, school…..sometimes we find that someone has advice  for another parent, from their own personal experience, and other times we just need to rant and know it is a safe place to moan about how unfair life is. But I am happy to host and bake for our monthly gatherings, so that such an environment exists for our parents, who do a great job just holding things together.

Who cares for the carers?

I have written a great deal over the last year about how isolating it can feel to be the parent of a child with special needs and I am certain that the stress of that experience impacts on the health of carers in many different ways. Being on constant red-alert, is bound to create anxiety beyond measure and having anxiety about the future may often stimulate depression too. I know that I personally try not to think much further ahead than a couple of weeks at a time, as imagining Joshua as an adult is just too frightening to contemplate, even though at 15 now, it is approaching and needs to be confronted. Carers often put their own needs after those that they are looking after and as such, they neglect themselves and their own well-being. They may not have the time to be physically active, to keep themselves healthy.

The stress and worry may cause parents problems sleeping, as well as disturbed nights as many children with special needs have difficulty sleeping. It is well documented that sleep deprivation can create both mental and physical health problems, so that alone may store up health issues. I am writing this at 3am as Joshua will not sleep tonight!  The demands of caring can be physical too, with lots of lifting , carrying and bending, which can develop into back problems as well as other aches and pains. I was once told by an Occupational Therapist that Joshua was heavier than the maximum recommended weight for me to be lifting, so I asked her what she expected me to do when I was home-alone with him and he had a seizure and fell to the floor?! She wanted me to leave him on the floor until he recovered and could get himself up, which I sometimes do, just sliding a cushion under his head and covering him in a blanket, but if we are in a supermarket, that is simply not practical.

Many parents of special needs children have low self esteem : they lose confidence that they can do little else other than care. Carers devote their lives to others and as such, they can feel that they are not worthy of any care or attention in their own right and they can become overlooked in society. Social isolation is a big issue as perhaps they are envious of the family lives of those with ‘normal’ children and they can start to find it difficult to socialise with those typical families, such that the gap grows wider.

Many parents give up paid employment to take up their caring role, so this could create financial worries as well as more isolation from others in the working world. Not everyone is as fortunate as I have been to have a flexible employer who can accommodate our endless hospital appointments during Joshua’s life, including some lengthy hospital admissions, and the occasional urgent need to drop everything and dash to school in the event of a seizure or injury.

For all of these reasons, and many more that I have not thought of no doubt, we need to take better care of the parents who have children with special needs. As if they are neglected, then they will become unwell and not be able to look after their children any more. I know from personal experience how valuable respite is as an opportunity to re-charge the batteries, to regain my equilibrium and to come out the other side, fighting.