First Aid Toolkit

This week I am on a three day First Aid at Work training course, so that I can be our office First Aider. I really enjoyed day 1, as I loved learning new and practical skills such as CPR, the recovery position, the Heimlich Manoeuvre and then some bandaging skills. We arrived as 14 strangers, who sat in silence, looking at our mobile phones in the morning, and by the end of the day we were laughing together as we bandaged each other up and shared horror stories of accidents that people had had , or witnessed, at work. I am not sure what we will be covering today but I know that there is assessment on Wednesday, but it is an interactive course where we are all trying out the new techniques, not just watching the teacher demonstrate. In fact it is almost a full week of first aid training as I am also enrolled on the parents course at school on Friday afternoon, that was set up because of Joshua’s seizure in the bath incident in January.

Although this course is designed for First Aid at Work, I could see lots of skills that will be useful at home when taking care of Joshua. We were shown easier ways to roll the patient into the recovery position if you are alone and I now know what I should do in the event of a choking incident or if CPR were necessary. So these are valuable life skills and I am very grateful to have the opportunity to learn them , even though I hope never to have to put them into practice, of course.

Working in an office environment, we do not have too many hazards to deal with, but a choking incident or a trip down the stairs could happen anywhere, but we heard some pretty gruesome stories from someone from the army and a butcher too. Fortunately I am not squeamish at all, and I am not phased by blood – although I am not comfortable with vomit. When Joshua was younger and having full tonic clonic seizures that threw him across rooms, he had several head injuries, despite wearing his epilepsy helmet. He cut his head open on the brick hearth one time and he split his chin on a ceramic public toilet  on another occasion. I think his seizure must dull the sensitivity as he did not really react to the amount of blood or the cuts at the time and with both, we had to go to A&E to be checked over , X-rayed and to be glued back together . Now I would be able to bandage his head up, but would of course still take him to the experts. And the First Aider role seems to be about doing the best thing to keep the patient comfortable and safe while somebody calls  for an ambulance. I hope that my experiences with Joshua over the years, will help me to cope well in an emergency situation. I find that I can remain calm during the incident itself, and then I tend to react and agonise over the ‘whats ifs’ after the event.

So let’s see what today’s lessons will bring….


Birthday Banners and Balloons

Well that is now Joshua’s 18th birthday well and truly celebrated and he has been spoiled rotten with gifts, cards, birthday money and birthday hugs. The final treat was yesterday , when 21 of us met at a restaurant for Sunday lunch. We were travelling the furthest and so everyone was already assembled by the time we battled through sleet and hail to get there. Joshua rushed to the lounge area where everyone was toasting his birthday and he immediately sat down between his Granny and his Great Aunt, to take the scene in. He had both grandmothers, all three Aunts and Uncles, as well as a Great Aunt and Uncle,and five cousins there – the three grown up cousins had brought their partners too-  and he smiled and waved at everyone. He was rather overwhelmed by the crowd as he kept seeking me out to hold my hand for reassurance, but he was very happy and pleased to see everyone.

We sat down at our long table, which was decorated with his favourite crackers to pull and he had gigantic ’18’ balloons, as well as two personalised banners, so there was no doubting which was our table. We sat in the middle of the long table, surrounded by family and began to tuck into some delicious food, apart from Joshua who rejected his soup, fish and souffle and only tucked into my skinny fries! At several times during the meal, Joshua would stand up as if to make a speech; only he would wave, smile and flash his bare tummy instead , before sitting down again. He was milking being the centre of attention and the reason that we were all gathered.

After our three course meal, the waiter brought my homemade Malteser cake so that we all sang ‘Happy Birthday’ to him, while the candles flamed away. We called upon his two young cousins to help him to blow them out and I made a wish on his behalf. I was amazed that most people still had room to eat a slice of chocolate cake and we divided the remaining half to send home to two absent family members. There were endless photos taken of the occasion and they show the fun that was had and how lucky Joshua was to be surrounded by so much love. He enjoyed waving his guests off and receiving lots of hugs and kisses, then he sat patiently in the quietness, as we packed up his gifts, banners and balloons and tried to return the restaurant back to normal after our family invasion.

It was over a two hour drive home again and Joshua dozed for much of it, until we reached the end of the motorway and he knew that he was almost home. He enjoyed a fun day but was really happy to return to the peace of his den, which I have decorated with his banners, balloons and some of his cards. We both needed an early night, but I went to bed satisfied that no 18 year old could have had a better week of celebrations, I think we did him proud.

International Man’s Day

For the sake of balance, yesterday I wrote about he role that my mother played in my life, so I want to write about my father today. Growing up in the 1970’s, fathers were less of a hands on parent back then as Dad was mostly at work when we were small, so we saw him mainly at weekends and during holidays. We always ate our meals together, around the kitchen table, when we would each discuss our days. My Dad was always very keen for us to succeed at school, so he took a  big interest in what we were studying and, like Mum, encouraged us to work hard enough to go to University. I can remember him testing our mental arithmetic over meals or engaging in French conversations! Both my sister and I wanted to make him proud of us.

My Dad always adored his garden and he was a very talented gardener, in our last family home he fitted flood lights, so that he could work in the garden in the evenings! I went through a phase in my early teens when I rejected Sunday School and I used to go to Garden Centres with Dad and while he bought plants, I would look at the fish and other pets. I wanted a garden gnome, and rather than spend money on a plastic model, he spent hours carving then varnishing a unique wooden gnome for me. Later, once we had our own house, he would love to work in our wild garden whenever they came to visit us, he was itching to get to work on our wild hedge or untamed flowerbeds, so the garden always looked better once they had come to stay! He must have been disappointed that I did not inherit his green fingers.

Dad was a willing taxi driver – he took on a number of University visits when I was studying my A Levels – and he taught me to drive when I was 17. We used to go out in his car early in the morning, before he went to work, and he was never cross when I hit several gate posts, but was endlessly patient and calm.

Dad was not very demonstrative, he did not really discuss emotions, but it was never in doubt that he loved us, he showed that through his actions. Like Mum, he was supportive throughout his life and family was very important to him. It was Dad who stepped up when his mother had a stroke, when his father and brother in law became dependent and needed carers at home and he was a frequent executor for several family members’ wills. He was methodical, thorough and had very high standards. Dad was rather a shy man and at family parties at home, he was always to be found in the kitchen washing up or being barman, rather than being the centre of attention, so he was an excellent host.

Joshua was born on Dad’s 64th birthday and he and Mum came to the hospital as soon as they heard the news that their grandson had arrived and that he was in Special Care. They both put their own lives on hold and came to us, where they were needed for their calm support.If they were disappointed that their grandson had been born with brain damage, they never once showed it to me, but instead they were endlessly interested and supportive of his progress and shared our pleasure as he attained his various milestones.

At today’s family meal to mark Joshua’s 18th birthday – the last of his celebrations during his birthday week – Dad’s quiet, solid presence will be greatly missed and we will raise a glass of thanks to him. He died when Joshua was 13, but due to his dementia, he did not really know him during the final years of his life. However, I have no doubt that were he here today, he would share our pride in all that Joshua has achieved and he would be quietly ensuring that all of our guests were being well looked after. Thank you for everything Dad xx

International Women’s Day

Yesterday was International Women’s Day, celebrating the strength and achievements of women. There are several inspirational women in the public eye, who encourage me to believe that I can achieve whatever I want to, but there is one lady in our family who has influenced me and my choices more than any other : my Mum: In her parenting of me and my sister she showed us how to be good mothers ourselves. She was strict but loving, so we never wanted to disappoint her and tried hard not to let her down. She encouraged us to go to University and that we could get any job that we wanted.  My mum worked part time while we were at primary school and dad would take over on the weekends when she had to work, but she showed us that combining work with parenting was possible, in the 1970s when part time work was less common than it is now.

But for me, it was her example as a carer that has touched me most. Over the years that my father had vascular dementia, she cared for him tirelessly at home. She protected his dignity , attended to his every need and selflessly dedicated her life to his care. It was only in the later years of his illness, that she organised professional carers to help her and to allow her some brief respite from her responsibilities. Even when the end came, none of us wanted to leave his bedside and we camped out in hospital for about a fortnight, ensuring that he was never alone, but that right until the end he knew that his family were there for him. Even during that emotional time, she taught me an key skill that I have used ever since in hospitals : to learn and use the christian names of nurses and support workers, so that you make them feel important and familiar too, so that when you need something , they are then more likely to help.

Mum is more organised and definitely tidier than me, but in my parenting and caring of Joshua, I have tried to follow her lead. I am Joshua’s advocate, as Mum was for dad and we have both been determined to fight for what they deserve. I probably learnt my skill at writing a letter of complaint from Mum too, as we both make it known when something has gone wrong , as we have needed to be the voice of our husband/son. However I do also like to give praise where it is due too, so I probably send as many thank you emails as complaints and often these have more impact, as I think that sadly, they are more rare.

Mum and I both cry at the drop of a hat, but that does not mean that we are weak, it means that we are emotional and empathetic in my opinion. I definitely blame Mum for passing on the family crying gene, but it is not a bad thing to be able to release emotions in that way. Through all of our ups and downs with Joshua, Mum has always been there – my parents appeared on the day he was born, were staying with us at the time we got his diagnosis, looked after him for us while we took weekend breaks or when I was working sometimes and continues to be a strong support when we have bad times and celebrates with us the pleasure of good times.

So, Thank you Mum, you have taught me so much and have always been there for us, so nobody could wish for a better role model.

In our defence

I have been working with a supplier for several months now and she has always shown a real interest in Joshua. So this week, when I was sending her her pay, I also enclosed a copy of a couple of articles that I have written for Cerebra, for her information. She received them and left a voicemail message at work for me to call her as she was “very touched”. As I was driving to school yesterday for an orthotics appointment with Joshua, I called her back : she began the call be repeating how touched she had been that I had shared something so personal with her and that my writing had moved her, she had not appreciated how my life was, until she had read my articles. I reassured her that I do not impose this on everyone that I meet, and that I had sent them because she had shown such an interest in him.

But the call went on for 20 minutes, with her telling me how amazing I was for my positivity and how tough our life must have been and how much we had been through . I kept thanking her and trying to change the subject, but she would not be distracted. By the end of the call I was frustrated and began to get defensive on Joshua’s behalf. In the end,  I told her that she had no need to feel sorry for us, that he was a joy to be with and that there were plenty of things to celebrate about our life : For instance, I told her, I do not need to worry about Joshua joining a gang and being stabbed on the streets as I always know where he is. I surprised myself by how angry  and defensive I became. She was making me out to be a brave victim and I do not feel that way at all; I have a lot to be grateful for, so I needed to put her straight. I told her that our recent 18th birthday celebrations will have been unlike most others, but that they were simple pleasures : how many other 18 year olds would be so delighted by a birthday tea at Donalds?!  Joshua finds pleasure in simple things and he shares that with us. To feel sorry for us, is to miss the point and is actually insulting to Joshua.

Of course, you can feel sorry for us when we end up in A&E after seizures or when Joshua loses his vocabulary because of uncontrolled seizures. Yes those events have been heart breaking. But please do not feel sorry for us on a day to day basis, we are blessed in many ways ; Joshua has introduced us to a world and to people that we would never have met if he had not been born the way that he is.  I do not regret having Joshua ever. While I sometimes feel sad for him, that he has not had the childhood that he deserves, we are definitely not victims to be pitied. I do not write as an outlet to whine, I do show the struggles that we face but I also try to illustrate the joy and fun that Joshua brings to our lives and I aim to be balanced in that. So please do not feel sorry for us as a family, but share in the joy that he has to offer.

Interpreter Needed to translate this Foreign Language

Yorkshire Grandma gave Joshua a birthday card with a badge on which really tickled me – it shows an L Plate and says ” Caution – New Adult”. So I pinned it proudly to Joshua’s cardigan yesterday for him to wear to school. I thought that way he can maybe squeeze out some more attention this week if he meets anyone who did not know that it has been his birthday and might trigger a conversation. I also loved the idea that people might make allowances for a new adult, like we do recently qualified or learner drivers, and that people would be more tolerant of his mistakes as he is still learning.

The reality is that I need a badge too : Learner : Caution New Special Needs Mum . Although we were thrown into this world of disability 18 years ago now, I still feel as though I am a beginner as there is so much to learn and take in. This world is full of jargon that is unfamiliar , like EHCP, Personal Independence Payment, orthotics….. let alone the unpronounceable names of Joshua’s anti -epileptic drugs . I am sure that I have mentioned before, when Joshua’s nursery school teacher recognised that he was going to need help in mainstream school and she told me that we needed to get him ” statemented”. I had no idea what she was talking about and I heard that he was going to be “sectioned”, so I hesitated and then asked ” Is there really any need for that?” imagining him being locked away in some assylum for the rest of his life!

It is like any foreign language, you only learn it by using it and by asking questions and soon they become familiar phrases that you can use with confidence. At the outset you need a helpful interpreter, and we had one of those in our lovely health visitor and then more recently, our social workers have acted in that capacity too. Luckily I am not afraid to ask when I do not know something, rather than pretending than I am bilingual. Sometimes it is easier to ask other parents what something means and that is another benefit of our parent coffee mornings as we will often share , asking ” Does anybody know what…” and more often than not, somebody there knows the answer .

As we have now stepped into the adult world of disability from the more familiar children’s world, we have already encountered new jargon, such as DOL – Deprivation of Liberty- and Decision Support Tool! I hope for our last year at school ,and through this blog perhaps, I might be able to de-mystify some of the jargon so that entering this foreign country is less daunting for others.

Magic Moments

When I collected Joshua from school yesterday, I bumped into the Headteacher who asked if he had had a good birthday, asked how could my son have grown to be 18 years old – I questioned I asked myself all day! – and if I had had ‘a moment’ at all? She knows, as most people who know me know, that I am an emotional person and that it does not take much for me to cry. I replied that I had experienced several moments all day. I have always found Joshua’s birthday emotional : we celebrate Joshua reaching another milestone and the 18th birthday has to be one of the biggest so far; it is always bittersweet, full of memories of 5 March 2001 and being my Dad’s birthday too, I always think more about Joshua’s Grandpa than on other days. But I thought that I would share with you. the ‘moments’ that I had during the course of yesterday, when the emotion for me spilled over into happy tears:

  • I was totally moved by all of the wonderful, kind messages and  photographs that were posted on Facebook, wishing Joshua a happy day. He was inundated with kindness from a wide range of family, friends and acquaintances- including some lovely words from our Great Ormond Street families.. I wanted to post some baby photographs of Joshua but of course 2001 was before digital technology and easy sharing from the mobile phone. But I was delighted to find our birth announcement cards that his Grandad had lovingly made with photographs from his earliest days and so I snapped and posted that. To see that tiny baby and our young, scared but hopeful faces on the day we brought our new baby home, made me well up.
  • My first tears were shed when I opened an email from his keyworker from Respite who had taken the time to send birthday wishes from her holiday, which took me aback. But I wept when I read ” He truly is an amazing young man who is an absolute pleasure to spend time with”
  • I cried again when I saw him after school and I felt the love that was shown towards him and realised what a huge impression he had made  there and of course started to speculate on the day next Summer when he has to leave this environment ,where he feels comfortable enough to lie on the floor, and absorb the love and attention that was thrown his way as staff walked passed him on their way home
  • My husband and I took Joshua to Donald’s, his own choice of birthday tea without a doubt. He was drowsy on the way there and looked as though a seizure might be on the horizon too. But as we drove up to the fast food restaurant, he leapt into life and began to shout ” Donalds” and he made it clear that this time, he was not taking no for an answer. We took his birthday balloons with us, to make the experience special and Joshua chose his table and slid into position. He sat beautifully while I placed the order, just smiling and waving at me in the queue, but perfectly content. I chose table service and the girl who brought his food commented that it must be his birthday and Joshua gave her his best “thank you”. He tucked into the chicken and chips with gusto, not waiting for his Dad to arrive later, and you would have thought that it was a Michelin-starred meal, the appreciation that he showed for both the food and the setting. It is the simple things that made Joshua’s day special.
  • We did not begin opening cards and presents until after 8pm, as he needed a nap when he got home – it is exhausting being an adult. I was really moved by so many photograph cards showing happy, smiling Joshua, by kind messages of congratulations and good wishes for his future and of generosity of gifts. I know how difficult Joshua is to buy for, so family and friends have been really creative in trying to make his 18th birthday so special. I cried when I opened Joshua’s card from his Granny, as it enclosed a Garden Centre voucher, which is something that Grandpa would have approved of. She suggested that we buy and plant him a tree for his 18th birthday, to mark this day, which is just the best idea.
  • Finally I cried  as I tucked Joshua in bed, at his usual 9pm – no late night or first pint in the pub for him! I kissed him good night and told him how proud I was of him and  how lucky he was and this deep voice came out of the darkness, saying “Thank you”. So I gave him another kiss and left him to sleep.

So you see, there were plenty of ‘moments’, but none of them sad or resentful, all of them  were motivated by love and gratitude.