Next Steps on the Journey of Life

Yesterday was an important step in Joshua’s respite story, as he had his first visit to his recently approved Adult Short Breaks provision. I took him there for 9 am and he was certainly curious about where we were driving too and he hesitated to get out of the car when we arrived. But with some encouragement, he climbed out of the car and we walked towards the door. I rang the bell and he was then inpatient to get inside and he pushed past me to try the door handle, which is what he was doing when the manager came to let him in. He smiled at the three staff members and marched through into the lounge. He kept hugging me for reassurance but he was not unhappy to be there and remained in the armchair waving, as I left, promising to return three hours later.

When I did return at midday, he was pleased to see me and began waving goodbye to the staff. They told me what he had been doing and had some very sensible questions about what some of his gestures might mean and we discussed offering him choices. Joshua began to kick my shins, just gently, as a hint that he was ready to go and to stop talking. He did not say anything to the team but he did utter a ‘thank you’ once back in the car. He will return tomorrow for a slightly longer stay, which we have been promised will involve a trip to Donald’s – they know how to win him over.

I was anxious about the new setting , it felt the same as when he started at nursery all those years ago : How will they know what he is asking for? Will he be afraid of these strangers?Will he be upset by the change? Will they take good care of my precious boy? And the same as most new settings, he took it all in his stride of course, he is much more adaptable than I am.

Joshua has had several respite places in his life : the first Special School that he moved to when he was 7, had a residence attached to the school. I was very resistant at first but after a few months, he began to stay on Monday evenings and he loved the hustle and bustle and it saved his long journey to school on Tuesday mornings. But we left that school in Spring 2011 and so we were left without any respite for a full year , while our social worker sought an alternative provision. In 2012 he began to stay at a local authority home one weekend in four and that worked well, until the company changed the property’s use to Adults residential.

We then had a 9 month gap again while we had to go out of area to find any suitable children’s respite facilities. Our social worker gave me two places to look around in a neighbouring county, both would be at least an hour away from home. I fell instantly in love with the first one that I looked around; the team leader opened the door and asked me if I could walk like a penguin? I laughed and said that I could and immediately felt that both I and Joshua would fit in well here, so I declined to view the other alternative, as I had found what I was looking for. Joshua had a  slow, phased introduction and it worked out brilliantly at the provision where he currently goes for monthly short breaks. Joshua adores the staff and the feeling seems to be mutual. They are planning a leaving party for him next month on his final weekend, after 3.5 years of monthly visits, and I will be bringing cake and tissues.

But nothing stays the same forever, things change and he has to move on, to allow the next youngster to experience the joy that he has felt while there. I was delighted with our first visit and although Joshua was shy, he took it all in his stride. It is a sign of his increasing maturity that he is slight more reticent of strangers than he once was and a great indication of his increased awareness of what is going on around him. Three years ago, Joshua was mostly asleep, they had to plan activities around his daytime sleeping patterns, so he really did not care where he was, so long as they had a comfortable settee. Today’s Joshua is much more lively and aware, but he has always found a way to charm his carers. Right back when he was 4 years old, the Headteacher of his nursery school had written about him ” Joshua has a way to win hearts”, she spotted his skill that early on and he has never lost it, in fact he has finely honed this skill as he has got older. It is the best tool that he has at his disposal and I am  confident it will help him throughout the rest of his life.

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Judging Books by their Covers

It is important to never judge books by their covers : first impressions of Joshua might be that he is a mute, disabled young man with limited abilities and understanding. His cheeky sense of humour and his flirting would not necessarily be immediately obvious and these are both integral to his personality. You would need to spend time getting to know him before you saw that he understands much more than he can say, that he loves a trip to Donalds more than anywhere else and that he is affectionate, such that he loves to give and receive hugs. Today Joshua will spend three hours at his new adult respite provision, for him to get to know the staff and the setting and for them to get to know him and his unique ways. I am hopeful that he will take this new situation in his stride and settle into a new routine, but entrusting my most precious and vulnerable of all ‘possessions‘ into the hands of relative strangers, is always a frightening prospect. The reports that they have read about him in preparation ,will be brought to life when they spend some time with him alone and I am hopeful that nobody has already judged his particular book from his pretty grim cover.

This outlook was loudly demonstrated to me also yesterday and the day before : unfortunately my 79 year old mother is unwell and has been admitted into hospital, while they carry out scans and tests to decide on the best course of treatment. Yesterday afternoon she was admitted into a ward for over 75 year olds, where the doctors and nurses made some assumptions about the grey haired lady in front of them. She was explaining how bad she had been feeling but they clearly saw an old lady in front of them, someone that they expected to have carers, walking aids and to struggle to cope alone at home. Until this illness, my Mum has always been energetic , alert and fiercely independent, yet this has not been the expectation in hospital. When she first arrived, they struggled to appreciate the severity of the decline in her condition, as they do not know her: she was breathless and walked slowly and unsteadily , but it seemed that was to be expected of a lady of her age, so did not warrant any concern.

But they were not asking the right questions, they were not comparing Mum today with Mum at the end of last year. They appeared to be reading her date of birth, then making assumptions about the state of her health. Compared to the other elderly ladies on her ward, Mum is the most alert and most mobile, but she is still a shadow of her former self. It was a frightening but insightful view into the future, at how assumptions are made about the elderly . I was very glad that I was by her side to enlighten them on how my mother usually is and what we expect them to be able to return her to.

Seeing a date of birth written down, or a diagnosis in Joshua’s case, is only one piece of information about somebody, it is not the full story. It is necessary to ask questions, with an open mind, in order to understand and appreciate someone’s individuality and unfortunately there is not always the luxury of time to begin this essential fact finding mission. In both Joshua and Mum’s case, I have been pleased to be able to act as interpreter and to provide some shortcuts in that familiarisation process, to ensure that they both get the attention that they deserve.

Hospital Survival Guide

Over Joshua’s lifetime, we have had several visits to hospitals, starting with his stay on Special Care for the first 11 days on his life, several visits to A&E, his week long admissions on various Children wards for the Ketogenic diet and video EEGs and of course his brain surgery at Great Ormond Street. I have stayed with him on every one of those hospital stays and so I have picked up some survival tips along the way, which I would like to share:

  • Try to be a patient patient as you are not the only one there. You can see how busy the nurses and doctors are, so you need to be assertive but tolerant too. I hover around trying to capture someone’e attention, with  a smile, rather than abusing the ‘help buzzer’ unless absolutely necessary
  • Try to humanise the experience through conversation and showing an interest in the staff who are taking care of you and your son. Try to learn, remember and use the names of nurses and doctors – I learned that tip from Mum when in hospital with my dying father. While they are attending to your care, chat with them; even though they may only be looking after you for 12 hours before a shift change, they can be a useful ally and it makes the experience more pleasant for everyone.
  • Write everything down : you usually only get one opportunity to see a doctor/consultant in the day ,on their morning rounds. If I have not got notes on things that have occurred to me during the course of the day and night before and questions that I want to ask, then I inevitably forget. It is helpful to keep notes for yourself of things that are hard to remember, such as difficult drug names, the names of conditions that are raised or even doctor’s names too.
  • It helps if you are the type of person who can sleep anywhere and through anything, which luckily I am. I have always been given a camp bed or foldaway bed, never having to slum it in an armchair as some parents do I know. But I also grab naps when Joshua has slept, during the day as you never know what is around the corner.Time is an odd things when you are in hospital too, I have usually found that the days are busy and that the time has gone  pretty quickly. You are in your own little bubble while in hospital and the outside world takes a back seat.
  • As the carer of the patient, you need to have a stash of food and drink as , while the patient will have regular meals, there is no provision for parents/carers. When I have been there alone with Joshua, I have had to ask a nurse to watch over him while I have nipped to the canteen or vending machine. Children’s wards are better equipped with snacks than adult wards, and some nurses have been happy to provide toast for us to share for breakfast. But it is not long before you become bored with sandwiches and it is a real treat when you are allowed outside for ‘real food’!
  • When the Doctor says that you can go home, do not, as I did on the first occasion, rush around packing up your belongings and sit on the bed in your coat. There are time consuming processes that have to be gone through, such as discharge paperwork and organising any take-home drugs, that seem to be able to take all day. So now I do not get too excited at the going home news, but I only begin to pack up once I have the paperwork and drugs in my hand. Before we leave, I try to seek out the staff who have taken care of us during our stay, to thank them, as it is both polite and you never know when you might encounter them again. Joshua has certainly seen many of the same faces on return visits and so it is helpful if you were not the dreaded patient and fussy mother from your previous stay!

I have found that those basic tips, help to make any hospital stay go more smoothly. Nobody likes hospitals and the goal is often to get released as soon as possible, but these guidelines might prove useful for anyone who is facing a hospital stay for the first time.

Walkie Talkie

When Joshua was 4 days old, the consultant starkly told me that he had devastating brain damage and as a result, he might not see, hear, talk or walk. I have covered the other skills in the last three days, so finally, let’s explore Joshua’s walking: Joshua was a large one year old and he was not inclined to move much, even though he enjoyed bouncing , all the time, when we held his hands so we knew he had strong legs and knees. We had a physiotherapist come to the house, to work on his right-sided weakness and she suggested that he had a splint, to support his right leg and to encourage him to walk. We agreed and he got a tiny plastic splint – like the back half of a wellington boot ; it was royal blue with colourful planets on it. This now made his right foot much bigger than his left and so we went to Clarks’ shoe shop and accessed their odd shoe scheme, where we could buy two different sized trainers, for less than two pairs of shoes. This splint gave Joshua the support and confidence that he needed and at around 18 months old, Joshua began to walk, which seemed miraculous at the time.

Once he was walking, there was no stopping him, he was fast and he was confident. I can remember walking up our lane with him and my mother in law and she was anxious that he might fall and wanted to hold him back, for his own safety. But I was thrilled by his mobility and if he fell, which he rarely did to be honest, he would just pick himself up again. The faster little Joshua walked, the tighter his right arm would get, until his hand was tucked up into his armpit with the effort and concentration. We saw that if he did fall over, he could not, or did not, reach his right arm out to save himself.

The splint definitely got him up and mobile and then he had several years without one, when he just wore sturdy shoes. But the physio kept a close eye on him and when he was at his first special school, so he would be around 8 years old, she recommended another splint – or AFO as the experts call them – as his foot position was becoming contorted and needed some help to straighten it out. I was not phased by the suggestion as I knew how his first splint had saved him and so he was cast for a new splint, with the same blue planet pattern for old times’ sake. Now that he was bigger and it was having to work harder to pull his right foot straight, he had more issues with it rubbing and hurting him at first. I do not even remember the timeline now, but he moved into two splints and he had botox in his  legs to encourage the tight muscles to relax and be trained into the correct foot position.

The botox  and physiotherapy had limited impact and his orthopedic surgeon suggested that only surgery would now help his contorted, twisted right foot position. We had an appointment to discuss this corrective surgery, when he was about 12 years old, but as my husband correctly pointed out, how could we explain to him that he could not weight-bear for so many weeks after the procedure and how could we take care of him post-surgery. At the same time, Great Ormond Street hospital were talking to us about brain surgery for better seizure control and, unable to handle both procedures, in 2014 we prioritised his seizure control over his mobility. We were warned that one side-effect of the hemispherectomy was tightening of Joshua’s right limbs, but we decided that he had no fine motor skills in his right hand anyway, so there was nothing much to lose there, and we went ahead.

Post surgery, Joshua struggled to walk and the surgeon reassured us that it would come back, with physiotherapy input and he expected him to walk out of GOSH, the same way that he walked in. However sadly that was not the case, and when we were discharged, he could still barely walk, we had to have an emergency OT visit to organise equipment for home and we moved his bed downstairs and my husband fashioned a bath on wheels that we filled with a hosepipe, so that he still enjoyed baths, but in the hall now! With physio and persistence, Joshua mastered the stairs again in over a year of sleeping downstairs. He was fitted for new splints and this time, in big, clumpy NHS boots with a raise, which compensated for the evident difference in his leg length , so they tried to even him out.

Last year, encouraged by the physiotherapist, we had an appointment with the orthopedic surgeon again, to see 5 years later on, how surgery could give him comfort and better posture with his right foot. We were bluntly told that there is nothing that can be done for Joshua as he still could not tolerate the non -weight bearing after the surgery and should he walk on his foot too soon, he could do irreparable damage and be confined to a wheelchair for the rest of his life.

So we are where we are now : trying to get callipers that fit him, without rubbing his feet, as he has outgrown splints. Joshua is incredibly fast on a flat surface, particularly if he is running away from you, down a school corridor or a supermarket aisle for instance. We take the wheelchair when we are out and about  as he does not have much stamina since his brain surgery and in case he should have a seizure, but lately he has taken to pushing his own wheelchair and walking, until he is too tired and has to sit down.  Joshua is mobile but his gait is awkward and lopsided, but he gets around, so in that way, he has defied that initial diagnosis when he was 4 days old and his determination, makes me proud everyday.

 

 

Talk Talk

I have described how Joshua has defied the odds with his vision and his hearing, but his ability to talk has been more challenging and variable throughout his life. When he was about one year old, his favourite greeting was ” Hiya” and he used it plenty to anyone who would listen. When he started mainstream nursery and then school, he had some language. He used key phrases appropriately :  “Put some more in” when he demanded more apple juice, ” It needs batteries” when his toys stopped working, ” press that button” meant get a move on and ” daddy do it” when he wanted his father to fix something or if he wanted help.  I can clearly remember the first time that he spontaneously spoke when, he was in the back seat of the car and I was driving, and out of the blue, he said ” I like dolphins!”. My eyes filled with tears, I parked the car and turned around to tell him how much I liked dolphins too – that was our first conversation. We really thought that we were home and dry in terms of his ability to speak, he could count, name colours and identify animals and he was making progress, his speech was delayed but it was there.

But when he was 7, all that language stopped abruptly and he became mute. We hoped that it was a side-effect of his anti-epileptic drugs but once weaned off that drug and onto another, there was no improvement. His consultant eventually admitted that it was likely that seizure activity had robbed him of his language. If seizures are left uncontrolled, they can damage the brain further and the part of Joshua’s brain that controls his speech, had been under prolonged attack, while we weaned him off one drug and increased its replacement. So it was heart-breaking, his epilepsy  was not just agonising to watch and deal with, but it left a permanent scar on Joshua too.

We were heart-broken, as our cheeky, happy boy remained silent and his little phrases and even his funny pronunciation of the number 16 – he used to call it sickaleen – were all just dim and distant memories. With no language, his ability to fit in at mainstream school was in jeopardy. We worried endlessly about how he would cope and how he could get what he wanted and needed, without his own voice or if we were not there to be his interpreter. But without talking, he learnt how to communicate with pointing , gestures and using objects of reference and we resigned ourselves to the likelihood that he would be silent for the rest of his life. I resisted sign language, as I knew that he had been able to converse and I hoped that he would again one day.

But Joshua is a determined battler and over the last few years, he began to imitate at first, copying lots of words that he heard and repeating them endlessly and he would finish lines of favourite stories and songs. It was such a thrill to hear his voice after so long and so it would not matter that he would get stuck on the same phrase which was not always sensible or relevant, such as ” no glasses”, ” no pants” or ” I not poorly”. At present, Joshua’s vocabulary is pretty limited, with ” I like you” and ” thank you” being his mainstay, but relying much more on gestures to get what he wants and needs; But as I say, if you only have two key phrases, what lovely positive ones to have in your repertoire and he uses them to great effect.

More than anything, I would love to have a conversation with Joshua. To find out what he is thinking and how he feels . I am a good talker and listener but our interactions are one-sided. and I would love to share more with him. I know him well enough to intuitively know, in the main, what he wants or is trying to communicate. so perhaps we do not need words. But his life would be easier if he had words to use with the outside world. I still have faith that his vocabulary is locked inside his brain somewhere and at some point in the future, those words may well come back to the surface.When that day comes, we will rejoice and welcome Joshua’s language back with open arms. But in the meantime “thank you”, perhaps it is better to have had something and lost it, rather than never having had it at all.

Hear Hear

I wrote yesterday about Joshua’s eyesight, so I thought that I would  look at another of his senses today, as at his initial diagnosis at 4 days old, we were told that he might not see, hear, talk or walk. There is nothing wrong with Joshua’s hearing as far as I am concerned and formal tests when he was two confirmed that, so his brain can pass messages from his ears better than from his eyes. In fact, due to his deep love of music, Joshua’s hearing is very precious to him.

Even from being a baby, if he was crying, to dance with him in the lounge, with music blasting out, would sooth him instantly. As a toddler, he was fascinated by speakers – he would always seek them out in a cafe or when out in public, and want to get as close to them as possible. It was as though he felt music, it sends a vibration through him and makes him happy. He was in trouble as a toddler, as he put some chunky chalk inside his dad’s precious speakers, which did not, he explained, enhance the sound!

Joshua first watched the live 8 show in 2005 – 20 years after the original Live Aid concert – and Joshua has watched ‘The Show’ almost everyday since then! Luckily it is a 4 disc DVD, but he has his favourite performers and  it is usually ‘Robbie’ and ‘Travis’ that he asks for and who make him grin and wriggle most.  In fact in the last 14 years, we have worn out several copies of The Show. When he was younger he used to dance endlessly to ‘The Rising’ By Bruce Springsteen and ‘Hanging on the Telephone’ by Blondie, skipping round and round in circles with those tracks on repeat.

Joshua has enjoyed many live music performances in his life , from Bruce Springsteen several times, to Status Quo and ELO .He has enjoyed those gigs as well as musical theatre including Joseph, Matilda, Lion King, We will Rock You ,The Snowman and Club Tropicana most recently. So we have indulged his love of music, but as with films, it is hard to get him off his favourite DVDs. That being said, he loves a busker, and will watch them for ages when out shopping, particularly if they have a guitar, and he enjoys a brass band performance too.  In mainstream nursery school, he had a repertoire of Burt Bacharach songs that he would sing in the mirror – Magic moments and Close to you, being my favourites. So his music taste is pretty eclectic and only having a good strong beat seems to be essential.

Joshua’s life would be much poorer without his love of music in it .  He may not be able to vocalise a response, but Joshua responds instantly when you call his name out. I am not aware if his right-side weakness has also impacted on his ears, but they both seem to be in perfect working order to me. That being said, he is not above ignoring instructions and pretending not to have heard me too, but I guess that is just human nature and his naughty sense of humour too, when I call him telling him that we are ready to go out, and he jumps up and runs upstairs to make me chase him! His ears are not to blame for that common response and lack of cooperation.

One thing that he has never done, which I would love him to use his hearing for, is to listen and talk to me on the telephone. He loves a telephone and will endlessly watch himself in the mirror pretending to be taking or making a call, he loves to hide them and he loves to press buttons on a real phone, and will not be fobbed off with a toy one or an old one. But when he is away in respite or if I am working away, it would be brilliant if he would talk to me, just once on the phone, but it has never happened. If he is passed the receiver and asked to say hello to someone, he will kiss the phone or possibly wave at it, but he will never talk or even listen for more than a second or two.

I am really grateful that Joshua has his sense of hearing and I feel that he really makes the most of it too.

Eye eye

I went for a very thorough eye test yesterday as I would like new transition lenses, ready for the summer, and I have been having some pain in my left eye. The optician  was able to pinpoint the cause of my discomfort and has given me eye drops as well as new glasses. I had always had perfect vision and then, with age, I have become long-sighted and I cannot read small print or certain colours on particular backgrounds at all, without my glasses on, which is very frustrating. Since wearing glasses also, my eyesight has got worse, as though my eyes have got lazy and my problems lie in my left eye.

We know that Joshua has poor peripheral vision but he does not have the cognitive ability or the language skills to be able to undertake an eye test like mine, where he would be reading letters or saying if certain patterns were clearer or more blurred, with alternative lenses or just sitting still, with his chin resting on certain machines! He had a lot of eye tests when he was small, and they concluded that his eyes work well, but that it is, as ever, his faulty brain that prevents the messages from the eye getting through to the brain, to register sight. So glasses, we were told, will not help him.

When he could speak, he had several eye tests where instead of reading letters, he was identifying black and white images of ducks, fish and houses and he could name them all. But sadly now, he could not name them, even if he could see them. So we now live with the knowledge that his vision is not perfect and cannot be corrected for him.

We warn people that he has poor peripheral vision, and when he was younger, he would trip over things to his side but he has developed real skill in negotiating low level obstacles and now, he rarely trips over anything other than his own feet. I can recall his new teacher being concerned on one outing when he was on stage with lots of musical instruments , but she watched with amazement as he threaded his way, carefully, passed drums and neither tripped nor banged into anything. She could not believe her eyes and phoned me up to tell me what she had witnessed.

I know that he can spot me from a reasonable distance away, as I walk towards him in school, without speaking. It is usually at about the same distance away that he will point or wave, showing me that he has seen me, if he is concentrating that is. So Joshua clearly has enough functional sight and he seems to have adapted well to whatever he can see. As with all of his issues, it is his right side that he weakest, so he will often ignore food on the right side of his plate or toys to the right of him, so we have to be aware of that, but other than that, we do not have to make too many allowances for Joshua’s visual impairment. He will not let that hold him back and I think it is pretty static, I do not notice his vision getting any worse over time so we are where we are, and he deals with it, as with everything, with minimal fuss.