Just Be There

Posted on May 15, 2019

I saw a brilliant cartoon yesterday to sum up how I would like friends and family to support me during one of my lows : it showed two cartoon characters and one asks the other if it is OK? The sad looking one says ‘not really’, so the friend asks ‘do you want to talk about it?’ and again gets the same reply , ‘Not really’. So the friend does not push it, does not leave it there, but sits back to back to its friend, just to know someone is there. When you are depressed or anxious, you cannot always talk about how bad you are feeling – I know that I get fed up of hearing the sound of my own voice on occasions, as the negative voice never shuts up in your mind, being asleep is the only respite from that voice. But there can be real comfort in knowing that someone has your back, literally in the case of this cartoon.

Friends have asked me in the past, how can I help you when you are low? That is exactly what I have asked for, just be there, quietly and show me that you care. That might be by dropping me a note or text, that does not require a response, but that simply shows that they are there and that they care. Poor mental health is a very isolating experience and so, while you do not wish to be crowded or put under any additional pressure, it is helpful to not feel alone, even if it is impossible to find the energy, or words, to respond with a text or letter back.

I have written frequently about how isolating it feels to have a child with special needs, then if you add in the isolation of having poor mental health, then many suffering parents struggle to get dressed and get out of their own door, so that becomes a vicious circle. Even when I am depressed, I have been able to force myself to get up, get Joshua off to school and get myself  to work. That has not always been easy, when going back to bed has felt like a much more appealing option, but it has, in the long run, been my salvation. It is exhausting carrying on as normal when you are suffering from poor mental health, as it takes real effort to smile and ‘be normal’ and concentration to be able to  be productive. I am able to function at work when I am low, but I need more time and reassurance from colleagues that I am doing things well enough, as I am so self-critical, full of doubts and indecisive. I have been told that my work does not suffer when I am low, but of course, I do not believe that.

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So if you have a friend who is struggling with anxiety or depression, and might be pushing you away by turning down your invitations to meet for a coffee, I would urge you not to give up on them. Perhaps you could try a different approach, send them regular texts just telling them your news or any funny stories to distract them or perhaps, rather than trying to get them to come out with you, maybe turn up on their doorstep with their favourite cake, to either eat with them or potentially leave for them to eat when they are ready. While they may not be able to respond to your extended arm of friendship at the time, they will appreciate it and, in my experience, it will help them along their journey of recovery. If you back away and withdraw from them, then you are simply confirming what they already believe about themselves, which is that they are not worth knowing or being friends with, so be persistent, but be patient too, and in time, your friend will come back to you.

Growing Pains

Last night on ‘The A Word’, Joe was upset about his carer having to leave and he reacted badly in his school classroom by having a tantrum and ‘flinging a few chairs about in the classroom’ and his parents were called into see the Headteacher. They then had a debate about how much Joe actually understood and felt but his Mum made a remark that I have often heard and said myself : Joe’s behaviour might be sweet now, but when he is older, what then? When he is not cute anymore and no-one can handle him when he is 16 and still flinging chairs to express himself, what then?

That is a  very real reflection as our children grow up into adulthood; Their little quirks or coping  stategies are not so tolerable. Joshua always bounced up and down as a young child, he was never still, and that was one of the things that made him stand out from his peers. I can remember in a special needs playgroups when Joshua was a toddler, we all sat around in a circle singing action songs, with Joshua bouncing continually. I had thought he was happy but the leader had called me aside at the end of the session, to tell me that his behaviour ‘was not right’ and it indicated to her that he had a problem. Given that he was in a special needs playgroup, that seemed to me , then and now, an odd thing to say, even though I am sure she had our best interests at heart.

But we frequently said, that he could get away with bouncing as a toddler and even at primary school, but we were fearful of having an adolescent, or even adult, son who jumped up and down in public places. Then it would not just be seen as exuberant behaviour, then it would be regarded as being anti-social and no longer ‘cute’ enthusiasm.

Fortunately for us, Joshua does not have behaviour problems and is not normally destructive – other than when he had a reaction to one anti epileptic drug that he was given and that was a frightening insight into the world that many parents face with a chid who is violent and aggressive. Fortunately it was so alien to Joshua’s placid character that we were able to identify the source of the violence and remove the drug quickly and the problem went away, but I am aware that not every parent is that fortunate.

But equally Joshua’s open affection to strangers, by grabbing them for a hug or for attention, might well have been sweet when he was a toddler, but now that he is a 5’10” teenager,  it is more probematic. Most strangers recognise Joshua’s intention to be friendly, but not all and some look genuinely horrified as he approaches. Although I am concerned by ‘stranger danger’, I am not prepared to lose that affectionate side of his personality and to tell him off for that behaviour. I tend to make  a joke of it and say ‘Put her down Joshua, not everybody wants a hug!’ as my standard response, but it is a challenge to know how that might develop as he becomes an adult.

Saturday night at the movies

     

Yesterday afternoon Joshua was on great form: he was very jolly at a beach- front cafe for his lunch and we had afternoon tea with my Aunt and Uncle and they were surprised at how vocal he was! He was very affectionate with kisses, hugs and stroking my uncles head!

We left there and drove to the local cinema , just on the off chance that there would be a film that might interest Joshua. We have not taken him to the movies for years but he used to love the darkness, noise and big screen when he was younger. Joshua and I chose a Disney film, while my husband chose something else for him that started and ended at similar times. 

The seats were very comfortable and we sat in the dark waiting for the film to start. The adverts and film trailers were endless so it was maybe an hour after sitting down that Zootopia started. I was pleasantly surprised how much I enjoyed the film and Joshua lasted awake for around half of it, helped by popcorn! He then lay his head on his lap – he is very supple- and nodded off.

He sat up when my husband arrived, his film ended ten minutes before ours, and he enjoyed the final scenes and the credits to music, which we always have to watch to the end.

It felt good to have had a night out on our holidays, as usually we stay in watching television and having a bath. This felt as though we were doing what other teenagers might have been doing in their Easter holidays, even though most 15 year olds won’t nod off or go to the cinema with their mums!

To sleep, perchance to dream…

        

How restorative is nature? I’m writing this blog sitting on the beach under a blue sky with our four dogs running around and not much can be a better start to the day! There is nobody else around and so I can relax and enjoy the breathtaking scenery that surrounds me.

Yesterday I woke full of beans after six uninterrupted hours of blissful sleep. I jumped out of bed and took the dogs for a walk at dawn and it was simply stunning. I returned to the house to catch the news that sleep deprivation increases my risk of cancer, heart disease and depression! Well thanks for that , what do they recommend? Stay in bed and rest! I disagree , for me, fresh air , some exercise and  a beautiful sunrise was the best tonic I could have wished for!

But it does catch up with me eventually and, like in the Mediterranean, by 3pm I am ready for a siesta. I think that we should listen to our body clocks more than our alarm clocks as we all run at a different rhythm. My siesta plan does not really work when I’m at work but while I am on holiday, I am happy to go with what feels right for me.

Business as usual

      

I am delighted to report that after two consecutive nights of Joshua not sleeping at all, that he has slept last night and is still sleeping now! What a relief as I’m not sure how I would have coped with a third night of a staring, restless boy.

I was frustrated as a couple of weeks ago I had discussed his insomnia with his consultant who had prescribed a sedative for use just on the occasions when he needed to rest but seemed unable to. I had collected the potion from the hospital pharmacy and put it in my cupboard for emergency use, so we had not yet tried it. This being the case, I had forgotten to pack it on our holidays along with his other medications and the night before last is exactly the type of situation when I would have made use of it.

So at 9am yesterday I phoned our surgery to try to find out how I could get a prescription on holiday, ready to have some sedative for last night if necessary , explaining that a third night of sleeplessness would make us both ill. Our home surgery was very helpful and told me to register him temporarily here on holiday, which I did. At 9.30 am I had registered and the local health centre had spoken to my gp to ask them to fax the consultants letter outlining the prescription over. It was all looking promising, except they insisted that I needed a doctors appointment to activate the prescription and I could only be fitted in at 5.15pm!

I tried to argue that it was not necessary but they insisted but did at least accept that I could represent Joshua ,as initially they asked that I brought him along. It was only when I explained that he was non verbal and unwell that a supervisor relented. So I left the health centre and returned at 5 as requested, due to the large amount of paperwork that I would need to complete! That consisted of one form where I recorded both addresses and Joshua’s full name and date of birth. I then waited for 45 minutes in the waiting room and was again grateful that I did not have him with me, as even I was inpatient by the time his name was called.

He was a pleasant doctor and he listened to my tale of woe and acknowledged that Joshua had ‘been through the mill’ since his surgery. As he wrote out the prescription he warned me however, that he doubted that their pharmacy would stock the required sedative. It would probably need to be ordered. I explained that was why I had started the process at 9am in the morning. He replied that they had needed this appointment in order to learn all about our situation and that a receptionist on receiving the fax, could not have known that the drug was rare. He even told me that it cost £144 for a bottle and once opened it only had a 28 day shelf life. I joked that I was not going to sedate my son just to use up the whole prescription , as by now I was losing patience.

I took the prescription next door to the pharmacy as by now it was after 6pm, but as expected, they did not have it in stock. The pharmacist kindly phoned round other local late night chemists but none who answered the phone had it in stock either, all saying it was not a drug they had seen for years! I came home and my husband drove to a supermarket pharmacy , who did not stock it either but have ordered it to come in today.

So we had to manage last night, despite everyone’s best efforts, without the sedative. All the time I was cursing the bottle of this rare liquid that I have at home in my kitchen cupboard, oblivious of its real value!

Common Bond

      

We had a lazy day yesterday as Joshua was up all night in the end : I was awake with him until 4.40 and then my husband took over while I had three hours sleep. Bizarrely he was liveliest in the morning than he has been all holiday, when Joshua has been sleeping until lunchtime. I took him down to the beach before 9am and we had some breakfast on the seafront.

As it was a sunny day, my husband took the four dogs for a favourite walk along the beach and up a hill, which takes him around an hour. Joshua and I met them at the summit for a pub lunch with spectacular views . We enjoyed our meal in the popular pub. I was aware of another family of three sitting behind my husband , who were only remarkable because mum had purple hair. On closer inspection I could see that after they finished their meal, a teenaged boy was cuddling his mum and twiddling her hair. They left the pub as we were eating and it became clear that their son- Jack – was disabled. 

The mother recognised us as a similar family and came to say hello to Joshua and introduced us to their son, Jack, who told us he was leaving now. We spoke about what they had eaten and what we were eating and my husband admired Jack’s anorak which , he explained, came from Father Christmas. They did not engage with any other diners in the busy pub but pushed at our open door with us. I guess they presumed that in us, they were assured of a friendly welcome and some safe interaction.

Not every family with children with special needs dare to eat out , and so those of us who do, need to support each other so that they are encouraged to repeat the experience.

Time for myself

        

I was looking forward to the second part of ‘The A Word’ , a bbc drama last night. It is about a family coming to terms with a 5 year old boy’s diagnosis of autism. Last week they got the diagnosis and this week, the boy’s mum took him out of mainstream school and attempted home- schooling by enlisting the help of extended family. 

It is an emotional drama to watch as it explores several different perspectives on living with a child with special needs, some of which I can relate to. I recognise myself in the mother who is fiercely protective of her son and is making unilateral decisions for him, believing she has his best interests at heart but wearing herself out in the meantime.

I had planned to get Joshua into bed before 9 pm so that I could enjoy it in peace. But he had different ideas : he had his bath at 7.30 and went to bed soon afterwards. He appeared downstairs at 8.45 and I took him back upstairs after ten minutes. Three more times he was up and downstairs, as if he knew that I was trying to give something else my attention. 

After it finished at 10 pm, I tried to snuggle him to sleep but he smacked me and pulled my hair shouting ‘go’! After 40 minutes of wrestling, I left him in bed with a movie on the iPad to soothe him to sleep while I went downstairs. It enabled him to stay in bed but he was not asleep when I returned at  almost midnight. Now an hour later he is still awake and objecting. 

When I get home I will watch ‘The A word’ another quiet morning, so that I can watch a family dealing with an autistic child in their family, as our disabled son prevented me from focussing on it.

The power of nature

    

Yesterday reminded us just how powerful nature can be : the night before last we had gales overnight. The news reported 106 mph recorded not far from where we are staying. We are staying in an old house that creaked all night but it takes more than the threat of a falling chimney  to keep me awake! But I did a tour of the garden on waking to check all was well.

From the upstairs Windows, the sea looked wild with angry, grey waves. Then I saw branches in the neighbours garden- on closer inspection, I saw that it was our tree lying in their garden! It luckily  did no damage to our car or the garden wall and most importantly, any people. So we were both up early and my husband set about chopping the tree up and it was my role to pick up the pieces and stack them away.

It is always a good reminder to see the power of nature , showing us never to take anything for granted. Joshua slept through the whole morning of clearing up,fast asleep in bed and he did not even notice the missing tree when we wheeled him out in the afternoon. The skies were blue when we set off on our walk down the town. But the odd weather caught us out again as the sky soon turned black and the heavens opened. Joshua scowled and complained at the rain in his face so we sought cover in a cafe and then we went on the pier. He enjoyed all the noise, flashing lights and children in there. He enjoyed losing my pound on a slot machine , randomly pressing buttons and watching the wheels spin. Without understanding the game, he knew that more money was needed to keep playing! I told him the lesson that my Dad taught us ‘ there’s only one winner on those machines’ but I enjoyed seeing Joshua have fun in the pier by joining in, not just watching others having fun.

As we walked home, the blue skies were back. Let’s hope nature is kind to us for the rest of our holiday week

Hope springs eternal

      

Easter is a key Christian festival and it sends us a message of hope. Hope is an interesting idea in everyday life I find, as often optimistic hope that things will all work out well, can lead to disappointment. My husband tends to take the pessimistic view in life that ‘ assume the worst, that way you are not disappointed’ but that’s not how I think. I tend to hope for the best in most things so we complement each other well in our outlooks .

But one decision where our views on likely outcomes created a problem, was in our decision whether or not to opt for brain surgery for Joshua.  My husband assumed that Joshua would not survive surgery or at best, would be permanently altered by it in terms of his capacity. Whereas I hoped beyond hope that the surgery could give our son the biggest opportunity to finally become seizure- free for the rest of his life. For me, that was a prize well worth winning and a risk worth taking. Due to our different outlooks, we took over a year to decide to go ahead after endless debates. 

We took Joshua to Great Ormond Street hospital in March 2014, the most frightening thing I have ever done, and although his seizures have reduced in frequency, Joshua has not become seizure free sadly but it was largely down to my hope , and the surgeons’ confidence, that we went ahead.

But I like to think that I do not apply blind hope to life, but that it is also tempered with some realism too. I know that Joshua’s brain damage and epilepsy are not going to disappear, that he is unlikely to simply grow out of them. But that does not prevent an optimism that medical science could find something to help in his lifetime.

I hope that you have a great Easter!

Not just Good Friday, it’s Great Friday!

        

We had a long drive last night to come away for our Easter holidays. We left later than planned and I expected Joshua to be weary as he had stayed off school again. But he seemed to know where he was coming to and was excited the whole journey. He jiggled in the front seat of the car, while I was squashed on the back seat next to most of our bags. He stayed awake the whole way – which is more than I did!- and we arrived at the port at 11.45, aiming for the midnight ferry. But it was fully booked so we had to wait until the next sailing, which was at 3am. My husband and I settled down to nap but Joshua stayed awake, bewildered by the wait. We ended up taking the dogs a walk in the drizzle at 2am to pass the time, which amused Joshua.

When we finally got onto the ferry,  where we all watched the lorry drivers and drunk party goers who were our travelling companions! We must have seemed odd travelling companions to them too! We had a 30 minute drive at our destination , where I made up the beds and we were in our beds by 4.30am, which is a regular getting up time for me. Joshua took the long journey and disruption to his bedtime  routine in his stride. It is today that he is understandably struggling to stay awake but we have planned in a lazy day , which is not testing any of us. We are all ready for this break and change of scene. This is somewhere I have been coming all of my life and it is my Happy Place, so bring it on!

Where was my crystal ball when I needed it

         

I took Joshua to school yesterday as there was a problem with School Transport and so I was delighted to see him smile at and greet classmates and staff alike, he genuinely seemed pleased to be there. So I went back to work, late, contented that we were getting life back  on track after his spell of illness. I kept my mobile close by all day in case I was summonsed to rescue him, but no call came, until Transport rang again to say that they would be late picking him up as the exhast had fallen off their taxi! This meant an even longer than normal day for Joshua’s first day back and my heart sank and I began to feel guilty for sending him back to school too soon and then for subjecting him to a long first day back.

Yorkshire Grandma sent me a text at 4.30 to say that he was happy to be home and quite lively, which reassured me. But when I got home from work,  nearer 6pm, he was curled up on the settee, under a fleecy blanket, not quite asleep but looking very grey and he had rejected all offers of food and drink. So the guilt returned : that sense that I had sent him to school too soon, simply to suit my own work commitments.I regretted once again that Joshua could not tell me just how ill he felt, so that I could assess the situation first thing in the morning. I got cross , once again, that I had to be a psychic fortune-teller over how his day might pan out.

I then gave myself a good talking to, as what was done was done; he had slept at school rather than sleeping at home, so no real harm had come to him and I had given him an opportunity to be entertained by a change of scene and people. He had attended the Easter bonnet parade, even though he had slept through it, and had brought a chocolate egg home as his reward. School activities had not been enough to wake him up, but it might have been. I then noticed that he was dozing on the settee and was not fast asleep,he was simply a drifter, so I warmed up some spaghetti carbonara for him and I was delighted that he sat up and ate it all. Food is usually one of Joshua’s favourite things and a bath is another, so when he accepted my offer of a bath too, I really felt as though we were back on track. He enjoyed his bath and happily went to bed after it.

Now we just have to go through that school/home decision one more time later this morning, for after today, he is on Easter school holidays, so we do not have that particular dilemma for over a fortnight, which will be a decent break for us both.

Sleep is like the unicorn

        

Sleep is such an important feature of our lives and in our house at the moment, we have opposite extremes on the sleep spectrum : we have Joshua who is sleeping for probably 23/24 hours a day, while he is unwell and we have me, who is wide awake now after just three hours deep sleep. I wonder if our bodies just know how much sleep we need at any given time and respond accordingly as it does seem so variable. I find it an interesting topic and people do spend a lot of time worrying about the amount of sleep that they either have, need or would like.

Why should it be that teenagers can stay asleep until lunchtime? you might think that it is because they are up all night on social media or playing computer games, but Joshua does neither of those things yet he still exhibits teenaged sleeping habits. That implies that it is a physical need for sleep to me. While he is ill, he is only sleeping and I like to think that in sleep, that he is healing himself. I brought him downstairs about 5pm yesterday for a change of scene and to try to give him something to eat. I put ‘The Show’ on blasting out to encourage some dancing/physical exercise, but to no avail, he simply curled up on the settee and resumed his deep sleep. He was not interested in either music or food, two of his favourite activities, thus showing just how ill he feels.

Whereas for me ‘sleep is like the unicorn – it is rumoured to exist, But I doubt that I will see any’. I went to bed, exhausted, unable to keep my eyes open, last night and fell immediately into a deep sleep. Yet three hours later, here I am, wide awake again. Is that a feature of my life-stage , like Joshua’s teenager tendencies? They do say that you need less sleep as you get older, or might it be the impact of 15 years of disturbed sleep, that my body does not know how to behave normally any more! Whatever the reason, I do not stay in bed battling to recapture the elusive state any more, these days I get up when I wake up and potter about. I may go back to bed as it becomes light or maybe not. Right now I am off to put the kettle on….

Sleeping himself better

         

This was yet another day when Joshua spent most of it asleep, on the settee this time, and his cough is now taking hold. He was kept warm with a real fire going all day and he was dosed up with regular paracetamol. He enjoyed nursery/comfort food for lunch : scrambled egg with beans and then homemade rice pudding, and both went down very well.It has been more difficult to encourage him to drink though, as he is a reluctant drinker at the best of times. So milky cereal is a good solution that he does enjoy at least.

Having decided to keep Joshua at home at least today, I then had to work out my childcare. I called Yorkshire Grandma but as her grandchildren are already on their school holidays for Easter, she is busy with them.I went into the office to bring back some work to do from home, so I will be occupied part of the day at least, if he should continue to sleep so much. If Joshua becomes livelier , then I will take him into school for sure.

It is the annual Easter Bonnet parade on wednesday, when the children walk down a runway, modelling their easter creations. I have heard many people say that it is their favourite event on the school calendar but I personally prefer the Harvest and Christmas services in church. I have attended the bonnet parade in the past and clearly  there are some very talented and creative parents out there, but this has never been my forte : I struggle to create something fabulous out of cardboard that Joshua will tolerate and that will fit over his epilepsy helmet too. There are also somemore extrovert children who adore prancing down the catwalk in front of an audience, but my son is not one of them particularly, as he tends to have to be dragged down by staff. He looks as though he is humouring the staff by participating . It is fortunate that this Easter tradition is not one that I insist on attending, as I have a prior work commitment on Wednesday and it would be difficult for me to breakaway.

My priority is to get Joshua back on his feet again ready for our Easter holiday,  which we have postponed from February half term. So far me and his Dad have avoided his germs, but  that could just be a matter of time…..

The host without the most

                

Joshua slept for 23 out of 24 hours yesterday I would say and he was not that lively during the hour that he wasawake.We had friends around for tea last night so, at first, Joshua’s sleepiness was helpfu.l as it allowed me to go to Tesco unaccompanied to buy my ingredients. Then as he slept downstairs in the armchair, he did not disrupt my cooking or tidying up as I busied myself around him. I woke him to try him with a drink and some lunch, but he was not keen on either, so he curled up back to sleep dosed up with paracetamol.

Just an hour before our guests arrived, he woke again so I gave him his daily meds and changed his clothes, and he asked for ‘The Show’. I was optimistic, as he bounced in his chair to the music, that he was going to come alive for the evening. However, he glared at the first family to arrive, which was a good indicator of how bad he felt as ordinarily he would have greeted them with a beam. The second family got a similar reaction and he continued to watch ‘The Show’ rather than engage with our guests.

When finally my cooking came to its climax and I was ready to serve, my friend encouraged Joshua to  join us in the dining room. She was delighted when he stood up out of the armchair, but instead of following her into the dining room, he dragged her into his downstairs bedroom, making it clear that he would not be joining us for dinner and would prefer to sleep in peace and comfort. So Joshua remained in his bed for the rest of the evening sadly, but he was clearly not in the mood for socialising, just needing some timeout.

It is a real shame that he felt too unwell to participate as he would have enjoyed the company of familiar adults and three children too. He missed out on his favourite mealtime-activity of pulling crackers! He would have enjoyed the choice of four puddings too. But he made his choice, based upon how he was feeling, and we carried on without him and had a really fun time, with plenty of sniggers.

Joshua is coughing now in bed and so the temperature is evolving into its next phase as his class staff predicted, based upon the pattern of his class peers.Now we just have to agree whether or not Joshua should be sent to school or whether he is better off at home to recover…..and so another school week begins, although this one is just four days long.

Cake and Chatter

     

At first when I woke Joshua up for breakfast, I though that he was much improved and could feasibly go to school to share in the Sport Relief antics. But as soon as I mentioned school, he hid under the duvet and told me to ‘go!’ in a determined voice. I asked several times if he was ready for school and always got the same response, so he stayed at home with his Dad while I went into school without him. It was our Parent Coffee morning and so I wanted to be there. I took along homemade flapjack, parkin, shortbread and chocolate brownies, which all seemed to go down well.

On the way into school, I was saddened by the news headline that autistism sufferers tend to have a shorterer lifespan than  ‘normal’ adults – 12 years earlier if they have no learning disability and 30 years earlier when they do! I reflected on the struggles that so many autistic children have throughout their lives, struggling to cope with everyday events and situations. Then the next news  headline related to the proposed changes to disability benefits, which  was causing an uproar. So both news stories gave us plenty to discuss over coffee and cake at school as most had heard the same headlines.

But as well as national issues, we chatted about more personal challenges that the families were facing and collectively tried to help with suggestions from our own experience. They were pleased to hear that we are going to have a Parents Noticeboard where parents can communicate with each other directly. I was delighted to welcome two new faces along for the first time and hopefully they found us a welcoming, friendly group to join and that they will return again and hopefully encourage friends to come too.

Most parents stayed for the full three hours; my husband asked what we found to talk about for a full morning, but the time flies I find and it has never been a struggle to find topics to discuss and I also drink a lot of tea. But it seems to give everyone a boost, as it is a morning just for them and it sounds rare that many of them sit still and have a cup of coffee served to them ordinarily, so it is good to treat them on just one morning in a month.

Nursing back to health

    

Joshua developed a high temperature the night before last, he was simply burning up. So he did not have his usual bath, but I stripped him down and dosed him up with Calpol. I decided that night that I could not honour my work plans to be over two hours drive away and so I emailed to cancel and apologise to the client I was due to meet. She immediately, as I knew she would, replied that we could easily re-schedule and to stay at home and look after my number one priority. I emailed the office to advise them of my change in plans and I texted the escort to cancel his taxi toschool.Once everyone was told, I felt easier and I lay next to my red hot boy. I could not sleep and at 2am, I took the risk of waking him to administer another dose of Calpol and tried to give him some rice krispies with cold milk, but he only ate a few spoon fulls before curling up and going back to sleep.

I was up again at 4ish and watched him from downstairs on the monitor, as my own body heat next to him was maybe not helping his temperature to stabilise. It is always awful when your child is ill, but when they have no ability to tell you what hurts or how they feel, it is additional agony. I have to use my knowledge of my son and visual clues as to what he might be feeling, but that feels like a big responsibility. I have been waiting for other symptoms to emerge to accompany the high temperature, but as yet he has only got a weeping eye. I decided to allow him to sleep as late as he wanted/needed, as sleep is a great healer, so he did not wake for his breakfast and medication, until midday. I gave him porridge in bed and he ate that slowly, then curled back up to sleep, tucking his head under his duvet.

I left him in peace, it was my role yesterday to be his nurse after all, but kept watching him on the monitor and popping up to take his temperature regularly.By mid-afternoon, I took some work up to his bedroom and sat on the end of his bed reading and making notes.Eventually, at 4ish, I offered him a bath – one of his favourite activities – and he sat up, so I took that as an encouraging sign . He was very chilled out in his luke warm bath, but then I brought him downstairs in his clean pyjamas as he was asking for ‘The Show’, which was the first time that I heard his voice all day, so of course he got what his heart desired. So when his Dad came back, he saw a much improved boy who was up and enjoying his favourite musicians. Later in the evening, when The Show had long gone and was replaced with a football match on his TV, Joshua wandered over to his Dad and climbed onto his knee. Now , Joshua is now 5 feet 10 and 55 kgs in weight, so he does not lend himself to sitting on knees anymore! So he looked ridiculous but he had a wry smile on his face and he was showing his Dad that he had missed him while he had been away.

Given that Joshua had slept most of the day, I was not optimistic for a good night’ssleep.This was confirmed by him playing the piano as I took him into his downstairs bedroom, I sat watching for a while as it was the first playing of anything that he had shown an interest in all day and the bottom line was that he may well not have required any more sleep. But when he stopped playing, and I assisted him into bed, he immediately curled up and pulled the duvet over his head, so once again, Joshua surprised me.I had been expecting to have to read him a Book at bedtime, but no such comfort was required.He is still asleep now, so I will not make a decision about how he spends today, for another two hours

Transition warning

    

Joshua was brewing something all day, from waking up at 5am with me, when he was happy and lively and ate a couple of breakfasts! He started to stare towards the ceiling around 7.30 and so I wrote in the school diary that I expected a seizure at some point during the day. I was not too concerned as I was collecting him at 11 to take him to his neurology appointment, so he was only away from me for a couple of hours. He greeted me with a huge beam and a ‘mummy’ when I entered the classroom where it was snack  time. But he threw his toast away and was raring to go- he would have been less keen if he had known where we were off to.

Joshua was very excited and sociable in the busy waiting room, trying out the pens and paper for colouring in and interacting with other parents and children. He browsed through the books on the shelf, but throwing a few on the floor he was clearly unimpressed by the Book Club. He was weighed and measured, then was ushered into the consulting room.This particular neurologist had not seen Joshua for around a year so she noticed a big change in him : she thought he looked much more grown up, he was busier than in the past – grabbing her pen and dotting on the notes and prescription was his favoutite activity, right under her nose – and he was more independently mobile too –  getting out of his chair himself and walking around the room then trying to escape out of the door. In the end, I locked it so that I did not have to stand guard at the exit.

She wanted an update on his health generally, as well as his seizure activity. She used a well-used word that I keep hearing around school, ‘transition’; as she was already thinking of him being an adult and having to transfer from Children’s neurology and a Children’s epilepsy nurse to adult provision. She seems ahead of herself, as he has just had his 15th birthday, so there are three more years before he is adult, but I understand that, as things move so slowly, this is possibly a sensible approach. I explained that I hardly knew what I was doing next week let alone in three years’ time! The more professionals keep mentioning Transition, then eventally we will tackle the thorny issue of what to do when Joshua leaves 6th form and enters an adult world. They make it sound as though we have choices but I am fairly confident that for a young person of Joshua’s abilities and understanding, that his future options will be pretty limited in our area. He has had to travel over an hour for his latest respite provision into another Local Authority area and so I do not have high hopes for what will be available for him as a young adult, when his time comes.

Inside Health

     

I was frustrated yesterday as I had two medical appointments in our nearest city hospital with Joshua, one in the morning with the surgeon who carried out his botox injections and back in the afternoon, to see the occupational therapist. I was complaining about the lack of a’ joined-up NHS’ and how no thought is applied to appointment making, as we have a neurology appointment at same hospital today : how it would not take too much effort to coordinate appointments, the technology exists to make smarter, informed decisions, and make life simpler for us. Each appointment is time off school, and work, and another 40 minute journey each way and the inevitable struggle to find a vacant car park space. It feels as though the careless appointment making is just an indication that the Doctor’s time is perceived as being more valuable than ours.

However, I then had to eat my words, as the OT attended our morning appointment with the consultant, so that our separate later appointment with her, was cancelled. At last, some common sense was applied and the appointments were moreefficient.So I had to reinstate his taxi home, tell school the revised plan and to change my afternoon work plans.  I still have to head back there for an 11.30 appointment today but at least it was two trips to hospital in 24 hours rather than the expected three.

We hear how much money NHS loses from missed appointments and that is wasteful, but when you get three apointment letters all from the same place, all on the sameday, I have some sympathy. There is already a lot of juggling going on in the lives of parents of a special needs child, so medical appointments have to fit into that chaos and be helpful somehow, rather than adding to the stress that exists already. So I am asking for better communication between NHS and its patients and more intelligent, joined-up appointment making. From my perspective, I would rather have one longer day in hospital seeing all of the doctors and therapists that Joshua needs to see, rather than having odd days with appointments, which is a lot more disruptive. There is much talk about the NHS being ‘patient-centred’ but that, sadly, has not been my experience in the last 15 years that I have been attending appointments.

Back together again

       

I got home from Scotland at 6pm and I pulled into the drive, Yorkshire Grandma was just leaving. She jumped out of the car to give me a hug and to tell me that my son was waiting to see me! He was indeed waiting, when I went indoors, he gave me a huge grin then went back to enjoying Pink Floyd on The Show – he was chuffed but it had just got to his favourite act. So I kissed and hugged him then went to read his school and respite diaries, to soak up the news programme that I had missed since Friday. As I was reading, Joshua decided that he was ready to pay me more attention and he kept calling ‘ Mummy’ across the room. My husband had made our evening meal and so I was presented with a plate of stirfry, which Joshua resented as he wanted me to take him in the bath by then. I promised him that we would bathe after pudding, but he stood at the snug door, switching the lights on and off, plunging us alternately into light and darkness as a very effective protest.

I gobbled my meal down, then obliged by taking him upstairs for a bath and then he watched Lion King in bed and we had a little snuggle, then I came downstairs leaving him to drift off. But an hour later, it seemed that he was still laying awake. I went back upstairs and snuggled in again, this time nodding off myself, until my husband woke me. We had a nightcap mug of tea together, then it was back to bed, where Joshua’s eyes were still open. I guess that the change of routine did not help him to settle to sleep and having managed three nights with nobody to snuggle in his bed, he was now waiting for some fuss and attention, which of course I was more than happy to give, having missed our bedtime sharing of a story and a cuddle.

So here we are back to our routine for another four weeks, which is when he next goes back for a ‘short break’. That April one will be shorter than most as we will be picking him up on Saturday night as we have tickets to see ELO in concert and as it was his Christmas present, he will definitely be joining us and just have one night in respite next month. That will be the last weekend of the Easter holidays, so he will have plenty of fun lined up as I have re-booked our postponed holiday from February half term, to go away from Maundy Thursday so it promises to be a good school holiday. I am a reluctant planner, for fear of events having to be cancelled, but I do enjoy looking at the calendar each day and seeing the fun things that lie ahead in the month and April does look to be jam-packed with fun!

Family matters

           

While I am very grateful for our respite, for me , his weekends are just one day too long. I thought a lot about Joshua yesterday, more so than the previous day’s, and I am so ready to get him back tonight. I did not phone last night so I do not know how his Sunday went and that may be why I felt his absence more acutely.

We had a very lazy day without him: we used a voucher that my husband received for his birthday, and we had a day in a spa together. It was incredibly relaxing, so much so I kept nodding off. Apparently according to my husband, I was ‘either asleep or doing something annoying’ like flicking through magazines or making shadow hand puppets, as if I am awake, I find it hard to sit still!

We enjoyed a rasoul, saunarium, swimming pool , jacuzzi and steam room and all were lovely. My skin has never felt so clean. We left at 4pm where we went our separate ways: my husband went back home while I caught a train up to Scotland to be ready for work here this morning.

I was met kindly, by my Aunt and her partner and they whisked me off for a delicious meal. We had a giggle and got all caught up on family news with some wine., while we ate. It was a lovely evening to finish off a perfect weekend of respite. But that being said, I am eager to see Joshua tonight when I get home and to read all about his adventures. It feels unnatural that I do not know exactly what he got up to yesterday, but actually this is probably more natural parenting  of a 15 year old. I hope that he is as pleased to see me as I will be to see him!