Dining Out

Eating out has always been  a fun thing to do, before we had Joshua it was a treat night out or a fun way to enjoy family celebrations like birthdays. But when Joshua was younger, dining out rather lost its appeal as it became hard work. He would be noisy and disruptive and he was difficult to keep in his seat as he wanted to find, then stand under the loud speakers to listen to the background music. So we were less keen on meals in restaurants as family parties, they were not relaxing, with one or other of us having to take Joshua out for a walk mid-way through as a distraction, while waiting for the food to arrive.

I laughed out loud at the birthday party depicted in ‘There She Goes’ as it was so familiar to me, apart from Joshua has never tried to remove his clothes to sit in his underwear! But the confusion of the waitress and the pitying looks from fellow diners were very familiar and the desperation to do anything to keep your child quiet, at any cost, so as not to draw too much attention to him, have all been a familiar experience and could only be written by someone who has personal experience of such an ordeal.

Joshua now enjoys the sociability of eating out, and he loves meeting new waitresses and trying to gain their attention.  although his eating can be hit and miss in that environment – apart from ‘Donald’s’ – in that he may either eat everything or nothing. I have finally learnt to have the ipad in my bag, ready for when he gets too restless and often Shrek or Madagascar will keep him calm and quiet and stop him from trying to leave the table. We have to choose our restaurants carefully as we would feel uncomfortable in somewhere too quiet or too smart, that would simply  be asking for trouble and drawing attention to ourselves. Our simple aim, when we are dining out with Joshua,  is to enjoy delicious food without drawing too much attention to ourselves and to get out again, in reasonable time, relatively unscathed.

Dining out on respite weekends and on rare nights out is a treasured  treat;  we are able to linger more over the meal and can choose restaurants that would not appeal to Joshua , either due to the nature of the food – so we can enjoy spicy Indian food for instance – or perhaps an unsuitable environment – such as upstairs seating or somewhere too posh ,full of diners out for a romantic meal for two. what is for sure is that, dining out , without Joshua, is about much more than simply eating.

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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.