Bright moments

Today I am going on a first aid course, although this is not about physical first aid but Mental Health First Aid, which as an employer, we have a duty to take care of. I am expecting to learn about signs to look out for of poor mental health and what action, as an employer, we can, and should,  take. I am looking forward to it and I am sure that it will be interesting. I may also gain some professional insight to a topic that I think about a great deal and it could be something also that I can use to share with parents at school too.

Given the anxiety, unpredictability and sleeplessness that special needs parents face most days, it is pretty inevitable that as a group, we face more mental health problems than most. The brain does not get the opportunities to switch off and relax that it needs, being on red alert at all times: listening out for noises of seizures or activity at night, trying to calm anxious autistic minds that do not understand how our world works , occupied by the physical demands of caring or battling the grief and disappointment that this child will not grow independent or thrive, like  he or she should have done. All of that, and more, is a lot to handle, on top of the daily challenges that every parents face.

Before judging any parents of a child with special needs, you need to take some time to try to ‘walk in their shoes’ and at least imagine what their daily life is like. You may see an irritable father, or an angry, emotional mother for instance, and think that they ought not to behave in that way. But the mind can only take so much and then it overflows, it short-circuits and poor mental health may be the result. I think that we need to be kinder to people in this crisis and if possible, to help them to see that there are positives and that life is not as hopeless as it feels at that moment. You might be able to break into their doom and gloom, with a kind smile or word or perhaps with an offer of help. It might not be accepted, but it will mean that you have acknowledged someone else’s pain or difficulty. You have not got a magic wand to take all that pain and difficulty away, but you are taking the time to  at least enter their world briefly and trying to be a bright moment in what might otherwise be a day of darkness.

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A New Start

New Year’s Day represents a new start, a clean sheet and an opportunity to change from how we were last year. Every year I plan to get fitter and slimmer- and this year is no exception – and most years I end up heavier than when I started – so lets hope that this year can be an exception! But I did make significant strides towards fitness in 2018, with regular swimming. But in 2019, I also want to protect my mental health and maintain it. I plan to do that by surrounding myself with people who are good for my mental health and by doing activities that I enjoy, that make me happy. Hopefully that will be enough, coupled with healthy eating and sufficient sleep, to see me through. I plan to fill a jar of ‘good things that happen’, to review at the end of 2019 and I think that it will soon fill up, as my standards are not unrealistically high : I am delighted by small gestures like letters from friends or by Joshua attaining a new skill.

Speaking of which he did that just yesterday but it is going in the 2019 jar : he has three favourite films stored on my iPad and he constantly brings it to me to be turned on ,so that he can watch one of them. Yesterday I showed him the three film icons and asked him to point at the one that he wanted – as I usually select for him the film that he has not watched most recently. Using his index finger, he very clearly tapped the screen in the movie that he fancied watching. Why had I not thought of that before? such a simple thing, but I had never asked him to tap before, I had often asked him verbally which film he would prefer but I rarely got a response. Joshua is going to be given more free choices during this year and let’s see how that goes. But in the meantime, this new skill is going in that happy jar, so we are off to a great start.

So Joshua and I are all set with our new Year’s Resolutions, how about yours? Happy New Year, lets make it a good one, without any tears.

A problem shared……

The second mental health session at school went really well yesterday and there was a unianimous vote that it should continue as a termly event, so I was delighted. Ten adults attended, including some new faces since the first one in July. I had  researched about anxiety, as that seemed to be a widely experienced problem amongst the group. I was impressed by how openly the parents there talked about their own personal experiences and we described the group as a “safe place” where they were free to raise whatever they wanted. Nobody had any answers, although I presented what MIND had listed as strategies that might help with anxiety, but this was about sharing and feeling comfortable to speak out ,rather than having any solutions. I had two lovely thank yous by the time I got home, which confirmed that we had achieved something worthwhile yesterday afternoon and they certainly made me smile.

Being the parent of a child with special needs is an isolating and exhausting experience, and so it was unusual to set time aside to talk about how we were feeling as parents. One attendee commented that it was good that it was all about me today, not my child. That is rare as the child’s needs come first and we spend so long battling for health appointments for our children, that often our own health can become compromised and certainly takes a  back seat .I only have Joshua in our family and so he can have my full parenting attention, but several of the parents there, have several children, and even more than one child with special needs, to take care of, so it is no wonder that there is no time to also consider and protect their own mental health.

So there is a need there, if only as a sharing, talking shop and so with that in mind, I am more than happy to host another session in the spring term and I really hope that it will grow and grow.

Learn to Surf

I have been carrying out some research into mental health issues amongst parents of children with special educational needs, as I am hosting an event later today in school about Anxiety. I read about the high incidence of  depression and anxiety amongst those who are parenting children with learning difficulties, both from a scientific perspective and from the personal experience of professionals, who have an insight due to their own family situation. Everyone agreed with what I have witnessed in my own life, that the likelihood of suffering a mental health problem is certainly exacerbated by the presence of a more challenged child in the family : the constant worry, the sleep deprivation, the constant need to fight for services and assistance, the unpredicatability of life and the need to be alert 24/7 must all contribute towards damaging the mental health of SEN parents.

I went on to read about strategies that might help to ease our mental health. One writer’s advice that jumped out at me, was to surround yourself with other SEN parents and she described the effect of this as ” taking a deep breath, after holding my breath for so long”. These parents who inhabit my world, understand the pressures that we are all under, we support each other when we are in need and laugh with each other when things are going well.  That is the support network that I am trying to create through our monthly parent coffee mornings at school. While each of our children are individuals and all have a different diagnosis, we share much in common. Joshua is not on the autistic spectrum, and many of the parents at his school are dealing with at least one child in the family with autism, but we can still share and empathise with each other. Joshua had seizures and required rescue medication I recall during the first Mental Health session that I ran in July, and it gave many of the parents there an insight into what it means to have a child with uncontrolled epilepsy.

There can be no downsides to sharing and talking to each other, while enjoying some home-baking, and if we learn something useful about mental health today while doing that, then that would be a bonus. Being a sufferer is nothing to be ashamed about, in fact in many ways, for us it is a fairly inevitable consequence of living the lives as SEN parents that we do. I hope that these informal gatherings can be a useful event every term at school and that we can begin to lose the stigma of admitting that we struggle with our own mental health – ” you can’t stop the waves, but you can learn to surf”

World Mental Health Day

It was World Mental Heath Day yesterday and so I heard and read lots of focus on mental health and suicide prevention throughout the day. The statistics are that one in four of us with struggle with our own mental health at some point during our lives and I am certainly open about being one of that 25%. I have cyclical periods of feeling low, when I lack in confidence, energy and motivation – the last ‘low’ lasted for almost two years. Then some trigger, often something when I focus on someone else rather than myself, brings me back up and then I have boundless energy, bright ideas and plans and I feel as though anything is possible. I know that neither state is’normal’, but the highs are certainly a lot more fun than the lows.

Due to my issues with my own mental health, I believe that I can identify a fellow-sufferer as, although the symptoms can be varied and how it manifests itself, many of the tell-tale signs are similar and familiar. Thankfully, we are encouraged to talk more openly about mental health these days but there is still a taboo and a mystery about it. In my own small way to encourage the start of that conversation, I held a ‘Mental Health of Carers’ session at Joshua’s school last term and we have another one planned in for next month. A small group attended and I am hopeful that more may follow for the second session, if word gets out.

If the national statistic is 1 in 4, then the incidence amongst parents/carers of special needs children must be significantly higher : that isolation, the need to fight for services , the lack of sleep and the disappointment that things are not as you had hoped, will all contribute to high levels of anxiety and depression, I have no doubt. At our last session, we laughed when we compared the creative outlets that we each use as coping mechanisms : while I bake and write as therapy, another mum uses music to calm her and another adopts cleaning or decorating  – I was eager to swap with her and offered to bake for her family , if she would paint our house!

I do not have any answers for any of my fellow sufferers, but I can talk willingly and openly about what helps me or how I feel. If nothing else, it should encourage sufferers to feel less isolated. I believe that half the battle is to begin that conversation, then who knows where it might lead…..

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.