Life changing

Having a child with special needs changes your outlook totally, in my experience, nothing is ever the same again. Our experience of life is simply different from ‘mainstream families’, perhaps a more exaggerrated version? All parents worry about their children, of course they do, but the types of worries are different : I do not worry about Joshua making friends particularly, what career choices he might make or his academic school record. Last week Joshua was given a certificate of achievement and it was for following his peers to the next activity without prompting! That would be taken for granted for a normal young child, but it was something to be celebrated for us. We learn to enjoy our victories whenever they arise and try to allow them to compensate for some of the tougher times, so as to sustain us.

I am on ‘red alert’ almost all of the time: even if my eyes are not on Joshua, which they mostly are, then my ears are pricked for unusual noises from upstairs It is hard to distinguish the noise of a 9 stone teenager falling to the floor in a seizure from the more rhythmic sound of that same teenager emptying his bookshelf in his bedroom onto the floor until you have heard both sounds several times as I have now learnt to recognise both and to ignore one. Even when Joshua is not with us, when he is in respite or at school, my mobile phone is always close by and I am always ready for that call. Joshua is at his respite provision this weekend and sadly, due to the 999 call and hospital admission last stay, it has dinted my confidence and now I am half -expecting it again. We will need some incident-free weekends for that nervous feeling to disappear.

I enjoyed another episode of “There she Goes” yesterday and their family birthday meal out with autistic Rosie, was so familiar to me and made me laugh out loud. So simple family traditions, such as a birthday, are not the same when you have a child with special needs, as it became about her even though it was her older brother’s birthday party. They had to move tables as she was too disruptive and they even brought dough balls from another restaaurant to keep her quiet. The waitress was clearly nonplussed as to how to handle this dysfunctional family. We have had numerous family meals when we have taken turns at walking Joshua around outside or taken him to wash his hands to distract him or to calm him down. Thankfully these days he is better than he once was and he enjoys eating out and I usally take the trusty ipad along with me too, as back up. But the prospect of a long lesiurely family meal in a restaurant is often a daunting prospect even now.

There are so many ways in which I, or my life, has changed since Joshua came on the scene and the impact is permanent I would say. I can’t go back to yesterday, because I was a different person then. I should also say that not all of the changes are negative ones : I am much more aware and tolerant of differences than I once was and I certainly do not fret about things that really do not matter anymore, like having a tidy house – what is the point when I pick up the cushions that Joshua has thrown on the floor a thousand times a day. I recognise and even seek out, kind people and I no longer waste my time on those who are not good for my mental health. I have made so many new friends as a result of having Joshua, who help me daily to get through, and I am very grateful for that and for them.

When people told me that having a baby would change my life, even they did not realise by quite how much I am sure.

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”

Meeting of Minds

We had a difficult meeting yesterday afternoon, held at school. It was the start of an application for Continuing Healthcare, which as far as Joshua is concerned, if he meets the criteria, means that Health would have to contribute to his Care Budget when he is 18, whereas social services fund his respite at the moment. So this was a meeting to explore just how demanding Joshua’s health needs are. There are 9 ‘domains’ which he has to be ranked on, for example breathing, behaviour, altered states of consciousness, cognition etc. The meeting was almost three hours long as we painstakingly worked through each domain to build up a case. So the discussion was very negative, focussing on what he cannot do and what difficulties he has, which I am not comfortable with, as my outlook is really about celebrating his small successes. But for the sake of this funding debate, we were not encouraged to celebrate anything.

In order to redress the balance, I kept throwing in Joshua’s recent developments : the fact , for example, that he now pulls on his apron on the back of the kitchen door, to indicate that he is hungry, so he uses an object of reference to communicate. It is hard to hear a list of his difficulties, when he has been making some strides over the last 6 months. Although I know why we were having the meeting, but I still felt disloyal to Joshua and felt the need to protect his reputation in that meeting. The discussion highlighted several differences between my husband and I in the way that we regard Joshua’s care and how he behaves these days. At one point I cried, that is not unusual let me say, but I had been holding it togther but when I talked about how much he loved coming home and how he reacts when he sees me, I wept.

This meting was held in school and throughout the meeting we could hear ryhthmic thuds. After a while, his teaching assistant, who was representing education in the meeting, asked us  ‘Do you know who that is?’ and it became clear that Joshua was kicking the door of 6th form! This was not a tap, he was making the wall to our meeting room tremble. She went to see him and for the time being at least, he stopped kicking the door and she said that he had been grinning while he was doing it. I wonder if at some level he knew we were next door talking about him and I wish now that we had invited him in, albeit briefly, to say hello. The lady from Continuing Health was making statements and claims about Joshua, having observed him for a few minutes only in class. If he had come into the meeting he would have given us hugs and then he would have thrown some papers around and generally created chaos,and then he would need to have been removed! But at least the professionals would have been reminded of the young man that we were discussing and he might even have demonstrated some of the issues and strengths that we had raised with her and to be honest, his presence there would have been welcome relief.

In the end, they concluded that Joshua is complex and that he has a severe health need, that will be the recommendation that will be put forward to panel. To be honest, we knew that  at the outset. I am not really sure why we needed to be there, the professionals could have discussed him without our input, we are not even going to see her submission before it goes to panel. The meeting left my husband angry and frustrated and it left me rather sad and unsettled. But then we got home later and he gave me a giant bear hug and we sat on the settee together, cuddling,and I instantly felt better.

I Your’s

Mostly last week while away together, Joshua said ‘I like you’ as his favourite phrase and it was hard to get him to say much else, although we did have occasional mentions of ‘Joshie’. But when we got home and I was removing his bulky boots, he said my favourite phrase of his : he stared into my eyes and he uttered ” I yours” and my heart swelled, ‘ Oh yes I agreed, you are mine’ and I gave him a big squeeze and I have not heard him say it again since, so it was deliberate choice to say that then, and not random repitition. I have taken it to mean that he knows where and to whom he belongs and that is very special, in a world where we are really not sure what precisely he knows and understands.

We have always maintained that he understands so much more than he can express and he demonstrates that, daily. He had taken to going to the back of the kitchen door and pulling at his apron hanging on a hook there, to indicate that he is hungry as he wears that at mealtimes. He holds his feet out, on demand, to have his socks put on in the morning and to have his boots removed when he comes home from school. I had warned him that it was back to school yesterday, his first full day there for over two weeks, and he raced outside to board the taxi on coming downstairs, without  a backward glance.

So he undertstands much of what we mean but I do not understand all of what is going on in his head. He will have been delighted to see everyone at school again, but instead of positivity in his home/school diary, I read with sadness that he had “hit and kicked two members of staff today”, so something was not right with my gentle giant. I am not sure how to respond to that news : do I apologise? try to explain the inexplicable? Make excuses for him? I am really not sure. I would normally say that he hits out – and he does smack me occasionally – to gain attention, but the diary says that this was not the case. I love to read that he is happy at school but this diary entry suggests that all was not right yesterday and I am trying to second-guess what he was trying to communicate in this behaviour. I am hoping that it was a one -off and that he moves back to his high-5s or hugs or onto something else next, as he knows that hitting and kicking is not acceptable.

And now, the end is near….

So today is the last day of our October half term holiday and tomorrow it is back to work and school. As I reflect back on the week we have spent together I see that :

  • We definitely made the right decision to go away nearer home and we have enjoyed our holiday in the countryside rather than at the coast. It is always hard to return home after a week away, but I am relieved to be facing a 2.5 hour drive home , rather than 7 hours in the car.
  • Despite some illness, we have enjoyed our stay and have got out and about everyday but one. I am sure that Joshua has recovered faster as a result of that day of quarantine. We have often had to separate in order to enjoy the things that we wanted to do, if it did not suit Joshua. For instance, we had planned to attend a local bonfire last night, but it was cold and raining and Joshua was contented at home, so my husband went to watch the fireworks without us and brought back some great photgraphs. Most days on the way home from an outing, one or other of us have taken the dogs on a walk at dusk. Although this is far from ideal, it is often simpler than involving a reluctant Joshua ,who is such a home-bird and would react badly to a detour.
  • Joshua’s new off-road wheelchair/trike was a good buy, as it came into its own on the walks that we took together this week. Joshua has looked super-comfortable and it has been much easier to push through grass and mud than his standard wheelchair ever would have been. I even pushed him up hill on yesterday’s river walk, just to see if I could manage it, and while I had to stop halfway for a rest, I did make it and without too much huffing and puffing!
  • I have been more aware of Joshua using bad behaviour to communicate when he is not enjoying an activity: he behaved appallingly in a walkng shop, throwing merchandise across the store, and he got what he wanted, I hurried up with my hat decision and we left quickly. It was clearly a protest against shopping as he was an angel in the pub, immediately afterwards, while waiting for lunch  smiling, hugging and sitting quietly. When he is impatient in the wheelchair, he has developed a stamp on the footplates, to indicate ‘hurry up lets get going’ which is also pretty effective
  • Joshua knows what he does and does not want to eat and if he is not in the mood for a particular dish, even if it is one of his favourites, then he will not entertain it. On two evenings, I offered him fish dishes that ordinarily he would enjoy , but he simply spat them both out and went upsatairs to his bedroom. On the first occasion, as he had eaten a decent lunch, I let it go and simply offered him weetabix for supper which he enjoyed. But on the other day, he had not really eaten much all day and we had been late offering him his evening meal. So when he rejected his fish, I relented and quickly offered him beans on toast instead and he ate that with real relish, showing that he was actually hungry, just did not approve of my first menu.
  • Our puppy Kevin is a key member of the family already and nothing made that more apparent than when he went missing yesterday and my husband and I searched anxiously for him. We had come to the conclusion that he must have got spooked and run away or had been stolen, when he peeped out, totally unaware of the search-party, from under a bed, where he had been fast asleep.

I will be sad to go back home later today and I will miss being with all of my family this week, after being in each others’ pockets, but I know that if we were together all  of the time, then this half term holiday would not be as special as it was.

Feast or Famine

While Joshua has been unwell this last couple of weeks, his eating habits have gone awry. I know myself that I do not feel much like eating when my throat is sore or when I have a temperature, but I still worry when he does not eat. Food is one of Joshua’s great pleasures and as I am an acknowledged feeder, his love of food brings me joy too. It somehow makes me feel like a better mother if Joshua eats the meals that I present to him.

Yesterday we had a leisurely morning but headed out to a neighbouring market town around midday. We started with some shopping, where Joshua behaved badly as a protest : I wanted a woolly hat as I had earache, so we went into a familiar walking shop where I began to try hats on for him. He ripped each one of my head and then he pulled a display of hats off the wall, throwing it across the shop. The sales assistant knows us in there but I was mortified nonetheless and I quickly chose the most expensive hat that he had thrown onto the floor. While I was paying, he managed to hop his wheelchair across the shop, despite the brakes being applied. It was very clear that Joshua was not impressed in the first shop, he communicated that dissatisfaction really effectively.

So we dared to take him to a pub for lunch to warm us all up, dreading how he might behave. But as he was happy to be in the coal-fire lit pub, he was an angel. He sat quietly while we ordered and he hugged me and waved at the other diners. My fish sandwich arrived before his bangers and mash, so he ate one of the battered fillets while he was waiting for his own meal to arrive, as a starter. He was gazing longingly at the  table next to us who had a bowl of chips with their sandwiches, so when his sausages arrived, I ordered him some fries too – if only to keep him from stealing our neighbours’. He devoured his own bangers and mash, along with his chunky chips, so he had a large meal by anyone’s standards. He was clearly contented in there and he enjoyed stroking a stranger’s dog who was also begging for the next door table’s food, he never stopped staring at Joshua, hopeful he would drop something or at least take pity on him. Little did the dog know that Joshua was in his ‘hoover’ mode and he was not for sharing.

With a full tummy, we were able to do a little more shopping, without too much protest, though he was most excited to get back in the car to head home. Once back I tried to counter-balance the large lunch with a healthy apple, which he enjoyed too. A couple of hours later I began to prepare our evening meal and Joshua was constantly in and out of the kitchen to monitor my progress, so I was confident that he would eat it up. However, the first forkful was spat out and he left the table, going upstairs in protest. So I enjoyed mine in peace and then I broke every rule in the parenting handbook – I took him some bananas and custard for pudding – yes even though he had rejected his main course! – upstairs to his bedroom – yes, I did not insist he sat back at the table! – and he gobbled them down.

Whether he eats or not is one of the few things that Joshua can control in his life and he makes full use of this free choice, but he certainly made up for lost time yesterday.

Duvet Day

When you take your child, or teenager, with special needs on holiday then his needs and preferences still come first. Yesterday Joshua was full of cold and so we decided to let him have a day at home, in the warm. He spent it wisely alternating between his bed, the settee and he had two warm baths too, but by the end of the day he had progressed to the coughing stage of his cold. A ‘normal’ teenager would be left at home alone, at least for some of the day, as he would be either dozing and when he was awake, he would probably read, listen to music or watch TV, but he would be self-sufficient. Joshua needed to be taken care of all day :  he needed reminding to drink plentynad to be dosed up with Calpol and when he was awake he needed to be supervised on the stairs and he needed the DVD or iPad turning on for him. Nursing a poorly Joshua is a full time occupation, except when he is asleep.

While I was fulfilling this caring role, my husband went out alone to walk the dogs and to buy everything on my shopping list.Normally we would all do those things together, as a family. It did mean that the dogs could have a hillier, longer walk and at a faster pace than we would manage together, so they will have been happy with the arrangement. But I am hopeful that we will all get out and about today again, so long as he is wrapped up warm, as it must get cold sitting still in a wheelchair. Joshua’s hands and feet are often cold to touch, as his circulation must be compromised. It is often said that a hat will keep the heat in, but Joshua has never tolerated wearing a bobble hat on his head, it comes off immediately and is usually thrown into a nearby puddle! So I tie him into his hoodie so that his ears do not get cold and it cannot be removed.

We have an outing planned to a local market today, with lunch out, so I hope that Joshua is well enough to oblige so that we can all go out together. Yesterday was an example of how having special needs in the family, can divide a family. In our case, with Joshua being an only-child, it means that often one parent is on their own. My husband has developed Joshua’s cold and so he feels the need to be looked after too, but he knows that his needs will always come in second place to Joshua’s. I am hoping that my sore throat does not develop into anything more, as I am not sure which of these two men will take care of me when I need my bath running or will make me a hot lemon and honey concoction!

What a difference a week makes…

I find it hard to believe that this time last week, I was about to get a call from Joshua’s respite provision to tell me that the paramedics were with him and that he was on his way to A&E. That was a very stressful and emotional 7 days and they are starting to feel already , rather like a nightmare and not reality.  Over the years, I have learnt several things about how to cope best with the unpredictability of life with Joshua :

  • Accept that we are not in control of events in his life, that epilepsy has the upper hand and could jump in and takeover at any moment.Do not become too tied to plans that have been made, as they can be turned on their heads, so a flexible outlook is the only way to achieve sanity. So choose your friends carefully as they too need to be flexible enough to accommodate last minute changes of plan without blaming you .
  • Make the most of the calm, seizure-free days but never take them for granted as the moment you do that, then you are asking for trouble and inviting seizures into your life. so you always need to be on red alert, even if a day starts well
  • Try to relax and keep calm;  do not get too anxious about  the smaller seizures, as they are just blips along the way. Save your energy for the uncontrollable seizures that result in trips to A&E, as they are the most dangerous ones and they justify anxiety. Thankfully in his 17 years, we have not had too many of those ambulance dashes and I know that there are some epileptics who are in and out of hospital all of the time.
  • Accept that there is not always an explanation as to why a cluster of seizures arrives at any particular moment. On this occasion, it was probably Joshua’s cold that made him more vulnerable to epileptic activity, but there is not always a clear trigger and often other people like to understand the reason , asking have his drugs changed for instance. I accept that these happen due to a deformity in his brain and so there does not necessarily need to be any explanation, it can be just one of those things.
  • The nature of seizures, and their impact, changes all the time : the most dangerous period of Joshua’s epilepsy journey was when he was having full tonic clonic seizures that would send him backwards, flying through the air as though he had been pushed. As he was a tall boy by then, he was vulnerable to hurting himself on furniture and we had several A&E trips with his head cut on, for instance,  the hearth, a table and a public toilet, even when wearing his helmet. Now they have altered and they are much more gentle in appearance : he will have a cluster of jerks in quick succession after each other, so they are very different and are easier to manage. But we never know what type of seizures lie in wait or how he will respond. When he was younger, Joshua’s seizures made him very tired and he needed to sleep afterwards. Post-brain surgery, we had the opposite and after seizures he would stay awake and restless for 48 hours after seizure activity.
  • Be open -minded to potential treatments that are offered, as well as drugs and surgery, we tried the ketogenic diet.  It was like an extreme version of the Atkins diet, which restricts protein and carbohydrates, but  uses more fat in recipes. It did not work for Joshua, after  6 months of trying really hard, but it has been miraculous for some children. Keep hopeful that one day,  a solution will be found for Joshua that will send this demon away for good.

Be careful what you wish for

Now that our son has turned into a determined show off, I guess I can expect more calls from school like the one I had yesterday afternoon : There had been three new ‘behaviours’ to be reported to me and one had resulted in retaliation:

  1. Joshua had tried repeatedly to pull the glasses off the face of a fellow student. Irritated by him grabbing at the arms of his glasses on his face, his peer had hit Joshua on the nose. They had checked him over, and other than some redness and some hurt pride, Joshua was fine as he ‘sulked’ on the settee. Now I am surprised that this is the first time that school have seen this behaviour, as he has been pulling at mine and Yorkshire Grandma’s glasses for months and that is where his phrase ” No Glasses” came from originally, after being told no repeatedly.  It is certainly irritating.

My response to the member of staff who called me was, that he will have deserved it, as it is very annoying, as he waves around your eyes like an annoying wasp. I told Yorkshire Grandma and she too hoped that with this reaction he might desist, as rather than retaliating, I simply remove my glasses as they are clearly too interesting.

2. But that was not all he had been up to, he had also been opening and shutting the door to the girls’ toilets! Now Joshua has always loved messing with doors and enjoys the big sound that they make when slammed shut. But was his choice of door yesterday  deliberate, who knows? At my

3. Thirdly, Joshua began to remove his trousers when he was in the classroom. We had discussed this development earlier in the week as I suggested that it was being used to gain attention. The member of staff recognised that he was choosing to strip when he did not have one to one staff attention and I am sure that behaviour, immediately gained a response.

So that was all in one afternoon of fun for Joshua. I know that he is pushing boundaries to see what works and what he can get away with, perhaps the bop on the nose might not be the kind of attention that he was after!

Before Joshua went to school, I can clearly remember saying to our lovely health visitor : I hope that he does grow up to be a bad boy… that way at least he won’t be just a cabbage. Now you know what they say about being careful what you wish for….But actually, although we need to teach him better ways to get attention, I do really love this lively, unpredicatble young man who is finding out how to communicate and how to make his presence felt after so many years of being mute and passive.