World Mental Health Day

It was World Mental Heath Day yesterday and so I heard and read lots of focus on mental health and suicide prevention throughout the day. The statistics are that one in four of us with struggle with our own mental health at some point during our lives and I am certainly open about being one of that 25%. I have cyclical periods of feeling low, when I lack in confidence, energy and motivation – the last ‘low’ lasted for almost two years. Then some trigger, often something when I focus on someone else rather than myself, brings me back up and then I have boundless energy, bright ideas and plans and I feel as though anything is possible. I know that neither state is’normal’, but the highs are certainly a lot more fun than the lows.

Due to my issues with my own mental health, I believe that I can identify a fellow-sufferer as, although the symptoms can be varied and how it manifests itself, many of the tell-tale signs are similar and familiar. Thankfully, we are encouraged to talk more openly about mental health these days but there is still a taboo and a mystery about it. In my own small way to encourage the start of that conversation, I held a ‘Mental Health of Carers’ session at Joshua’s school last term and we have another one planned in for next month. A small group attended and I am hopeful that more may follow for the second session, if word gets out.

If the national statistic is 1 in 4, then the incidence amongst parents/carers of special needs children must be significantly higher : that isolation, the need to fight for services , the lack of sleep and the disappointment that things are not as you had hoped, will all contribute to high levels of anxiety and depression, I have no doubt. At our last session, we laughed when we compared the creative outlets that we each use as coping mechanisms : while I bake and write as therapy, another mum uses music to calm her and another adopts cleaning or decorating  – I was eager to swap with her and offered to bake for her family , if she would paint our house!

I do not have any answers for any of my fellow sufferers, but I can talk willingly and openly about what helps me or how I feel. If nothing else, it should encourage sufferers to feel less isolated. I believe that half the battle is to begin that conversation, then who knows where it might lead…..

The Morning After

This is the first early morning for a week when I have not come downstairs and put my oven and my apron on!The Macmillan Coffee Morning at school could not have gone better …..

I arrived at school at 8.30 with a car boot full of homemade goodies – coffee cake, parkin, lemon drizzle, key lime pie, flapjack, cheese straws, victoria sponge, apple cake etc. There was so much that it took me two trips from the car to the dining hall where we were holding the event. I began to blow up balloons, lay out table clothes and put bunting up around the walls. Staff arrived to either donate a creation or to eye up what they planned to buy later, as I set out the cake on the tables. Then very soon, parents, once they had dropped off their children, began to arrive. From 9am until 11.30 it was pretty full on, with serving cake, chatting to guests, making hot drinks and keeping track of things. Two 6th formers were volunteered to help – not my son thankfully as he was creating chaos in the short while he was there during the set up stage! One of them was taking photographs for the website and the other took over the tea and coffee-making.

Each class had made their own contribution – buns and cake – and they each came to the dining hall with their donation, throughout the morning, and they amused me by mainly buying back what they had been involved in making! There was real pride in an enormous ‘rainbow cake’ for instance and that class were the main takers of it too. The Parents were keen to know what their child had made and to buy a slice of it in support. The parents sat at tables like in a cafe, some coming back for seconds, and the cardboard collection box that Macmillan supply, grew heavier and heavier.

I do not know yet how much money we collected, but I expect it to be in the region of £300 as I was counting it up and I had got to £240-something when was interrupted and I lost count , so I handed it into the office to be counted. In addition to that, I took some cake to the reception of the adjoining school and to my own offices and they donated a further £35. No doubt we will know the grand total next week!

Welcome back to school

For Joshua today marked the end of six weeks off on summer holidays and it was time to return to school today. For him it meant an early start – to be dressed by 8am has been unheard of in the school holidays. He did not object too much, even though he tried to snuggle back to sleep after breakfast. He looked smart in his school uniform and hopefully that reminded Joshua where he was heading, as well as my verbal prompts since last weekend.

Joshua has not changed classes or teacher so I like to think that it felt familiar returning for a new school year. I liked to think that a return to school meant getting reacquainted with his classmates and the staff that he is so fond of. But I fear that instead he may have played the sulky teenager.

Even though I have not been with him throughout the school holidays, I really missed him today and was eager to see his smiling face on my return from work. I was keen to read all about his day in his diary, to feel back in touch with the events of his day.

I have high hopes for Joshua’s new school year – for the fun that he will have and hopefully the new skills he will acquire. Bring it on!

The Power of PositiveThought

22 July is a significant date on my calendar for three main reasons : it is the last day of Joshua’s term at school and so after today, Joshua will enjoy six whole weeks on holiday. We have a variety of activities and adventures laid on for him, as well as some chilling-out time that he will need and demand.  We made it to the school disco last night and despite the heat, it was well attended. Joshua did his share of dancing and dozing too, his power naps seemed to restore his energy bursts. But by the time we got home at 9.30 last night, he was wide awake and he threatened to stay up all night. I was grateful for the 4 hours sleep that we did get, as he called out ‘monkey!’ to me at 4am! But it was a handy alarm call as I still had some baking to complete ready for today’s parent coffee morning.

It is the birthday of a friend and we are all going out for a meal to celebrate tomorrow night, after taking part in a 1940s weekend event, so I still have my fancy-dress costume to finalise later. I am hoping that Joshua will tolerate a flat cap as his nod towards the 1940s. We went to the event last year and observed, rather than joining in, so this year we plan to dressup in the period too. It is also carnival weekend in the town where we live, so that promises to be fun too.

But 22 July is, most significantly, the surgery date for my first best friend’s masectomy and reconstruction over in Texas. The time difference means that it is not taking place until 6pm tonight, but she has been in my thoughts all week to be honest. I sent her a card, some pyjamas and Yorkshire teabags to cheer her up and thankfully they arrived at the start of the week and did the trick! I am hoping and praying, for her and her family, that it all goes well and that after this full year of treatment, that she will be cancer free. If positive thought can fight cancer, then she will be cured for sure. So long as men can breathe and eyes can see, she has hoardes of friends and family backing her, so  by rights, she will be fine and well again very soon.

So all in all, it is a big day, so bring it on!

End of term entertainment

Tomorrow it will be my final parent coffee morning in school, and it will be the ninth one as we started back in November. I am still reeling from the fact that it is the end of term really, how quickly has this academic year flown by? Joshua has one more year as a Senior and then he will be a sixth former!! My own school days felt like eternal time and I wonder if Joshua feels the same?  I am hoping for a good turnout as the coffee morning  falls on the last day of term, but the recent good weather may deter attendance- who wants to sit in a stuffy school room when you can be enjoying the sunshine in your garden? So I have made enquiries as to whether or not there is an outside space we could migrate into if the weather continues to be kind?

At first I asked if we could place picnic rugs in a corner of the playground and not be too much in the way. But at playtime, the children, quite rightly, have the run of their open space and most of them will need it to let off steam on the last day of term, and our presence there could be a problem for some. So the headteacher suggested an alternative area and now we are hoping to have access to one of the class’s gardens, attached to their classroom. I have made these investigations as the week has got hotter and hotter, it is bound to be cooler or wet tomorrow, but at least we are prepared for a picnic-style gathering if the summer is kind all week long!

Joshua has been worn out by this spell of hot weather, he has been droopy at school and after tea at home, has curled up to go to sleep at home early in the evening. So he may not be impressed that tonight, at 5.30 he will be taken back to school to dance the night away at the school disco. We have gone every year that Joshua has attended this school and it is a fun event when we usually see the same families there, both pupils’ families and some of the staff’s too. Joshua may not survive all two hours but I feel that we should support these social occasions as much as we can, or else we risk losing them, as they will not be sustainable.

Complimentary advice

I want to urge you all to pay someone a compliment today as it makes the recipient beam from the inside out. I was described as being ‘amazing’ three times yesterday, by three different people. Now I am not telling you that to brag, but what is important is how it made me feel. The first time I was told it, I shrugged it off, rather embarrassed and dismissed them as being a flatterer. Then an hour later, I was told it again and I joked ‘Oh yes I know thanks, I am being told that all the time today’ So I was still uncomfortable with the compliment but faced it with humour. Then I have been told it one further time this morning and I tried to be more gracious. I have written before that our natural British modesty is less comfortable with compliments than our perception of the American cultural approach of ‘bragging’.. While I am urging you to compliment others, I am not recommending that I start to brag about how amazing I am.

But although it made me joke and laugh, underneath the compliments also made me smile and feel good. So I think I am going to compliment others more and see if I can spread some joy that way. I am honest in my approach, so I will not be showering flattery where it is not deserved, but sometimes we are guilty of thinking warm thoughts about someone, rather than voicing them out loud. We might not react very graciously at the time when we receive the compliment, but it is the type of comment that we reflect on later, with a smile and they can give a much needed boost occasionally.

Joshua’s school is great at celebrating success, however small, and in praising our children. Joshua is complimented for funny things like staying awake, being vocal or throwing the ball deliberately to the wrong child! The last ‘certificate of achievement’ that I can find was from last term when he was praised for ” doing jobs for the office staff”! I dread to think what chaos he wreaked in the school office as he likes to hold the receiver of their phones to his mouth and ear, and pretend to chatter like mummy! He likes to bash away at keyboards, typing like his mum does.  But instead of suggesting that Joshua had been in the way in the office, he received an award for his efforts, which is a positive way of seeing his behaviour.

So go ahead, make someone’s day and pay them a compliment today.

Haircut hell

I was in a meeting yesterday at school with two other mums and school staff and we strayed onto one difficulty that we had all three experienced with our sons : that of getting their hair cut. All three boys have a different diagnosis and traits, but all have special needs and all of them detest having their haircut.Wewere discussing the topic as the youngest boy has had his hair cut this weekend, by his desperate parents. The teacher in the meeting had been able to make hair trimming a game for another boy in her class and had successfully achieved something that his parents could not manage and had asked forhelp.Butclearly school staff, even those with a background in hairdressing, are not allowed to restrain our children in the way that we have all had to.


It makes some sense to me why it should be such a frighetning experience : in a salon, a stranger sits you down in a a large chair, covers you up in a gown and then begins to work around your face with sharp clicking scissors! You then see part of yourself fall away as you lose possession of your fair baby hair. I always told Joshua, while he screamed and thrashed about, that it did not hurt, but nonetheless, I can see that it would still be frightening.

After Joshua was thrown out of a barber when he was much younger, after the stylist cut her finger while trying to trim his moving head, for several years we would use clippers on him at home.  Joshua would sit on my knee in the hall, with me clamping his thrashing arms down at his side, while my husband attempted to clip his mop of hair like a wooly sheep being shorn. He would scream and wriggle throughout the process, so all stress levels were high, but at least we were satisfied that it was so short that it would not need doing again for another six months and at least the trauma was not in a public place, like a salon.

As Joshua got bigger and older, and realised that this ordeal was not going away, he got more difficult to hold on my knee but he calmed down slightly. We were ready to try the salon once again. We set the scene carefully : booked an appointment at the end of the day when everyone else had gone home, had two members of staff available and turned the music up loud. The first time last year, he was cross but nothing like before and gardually each visit he has got calmer and calmer. So much so that last time, he did not need his hands restraining at all, and he enjoyed checking his new look out in the mirror!

So I want to offer hope to those parents out there who, like I did, get so worked up  at the prospect of a haircut but despair at their long-haired scruffy child, who has yet another way of looking different to his peers. Keep trying and if Joshua is anything to go by,  your child will finally tolerate it and for the first time in his life, he has a proper hairstyle, rather than a shaved head!

Sunny Sunday

We have been treated to two consecutive days of sunshine already so that has got me in the holiday mood and I am beginning to feel that the eternal summer shall not fade. It meant that Joshua wore his shorts for the second day running, maybe his white long legs will get some colour on them if this keeps up. He is not good in the heat, it aggravates his epilepsy somehow, so I try to keep him out of the sun.  The heat can generally make him droop but yesterday, he stayed asleep in bed until lunchtime, so that was a good way to avoid heat stroke! I got on well with jobs while he was lying in, so it suited us both.

When he did wake up, all three of us went shopping to a nearby town.  While we were wandering, my husband met an ex-colleague and they began chatting and reminissing. While they were talking, his wife looked at me and Joshua and identified herself and her 15 year old son, as a pair that when the boys were babies, we went to a baby massage class together. I had not seen her for at least 13 years and I would have not recognised Joseph in a million years. Once re-connected, we too had a chat, reminisced and got a brief update of the last 13 years. It was a lovely catch up but of course, both teenagers scowled then ignored each other, having no memory of each other. To be fair, it did seem like a very different life as so much has happened since those baby days. So in the end, while it was our husbands who had first stopped to talk, in the end, they were waiting for us to finish our chat before we went our separate ways again.

There is a special connection I think with the friends that we make when we are expecting then new mums, a common bond that links us all together. I am still friendly with a group of mums who I met at ante-natal class and even though our children’s lives have turned out very differently, we are still in touch. In fact, I was delighted to be able to offer one of those ‘babies’ a week’s work experience in our office last week. He did really well, as it must be a daunting prospect, and it made me proud to see how that baby ,who is exactly two weeks older than Joshua, grew up into a tall, polite young man. But it is not just about the babies, we are planning birthday celebrations together as the mums, because two of us in the group will be 50 in the autumn, so that will be fun!

All in all, a fun weekend so lets bring on the last week of term….

Vital statistics

It seems to be a long time since we had a weekend at home, to catch up on those jobs that we tend not to get around to – I even made myself a list yesterday of the tasks that I wanted to do. One of the jobs that has been waiting for me to get around to was updating Joshua’s seizure record; I write on the kitchen calendar as we go along and then update an Excel spreadsheet  to look for any trends ready to be able to discuss them with his consultant. That shows me that the longest break between seizures that Joshua has experienced this year was in March, when he only had one seizure during the month and so there was a gap of 21 days between his fits. That is incredible, given that prior to surgery, he would never have any days without several seizures!  That has been his 2016 record, but during three months of this year, he has managed to go 13 days between seizures, which is also really unbelievable. I have tried hard to stop counting days during the seizure-free periods, as initially I was counting and expecting the worst around the magic 11th day. I am now better at letting it happen.

March was his best month of 2016 but it was followed by his worst, as he had 9 seizures in April and required his emergency medication on three occasions. While that will have felt bad at the time, hindsight gives me the perspective that even our worst month now is better than most of Joshua’s days before his brain surgery. While we still have unpredicatability to handle ,sleepless nights to cope with now and we have been unable to rid him of the drastic side effects of his anti-epileptic drugs, I must say that Joshua’s epilepsy has been improved by his surgery. I know that they were unable to cure him and remove seizures and medication from Joshua’s life, as we had hoped, but Great Ormond Street neurosurgery has had a massive impact upon Joshua’s life. I complain about epilepsy and its unfairness on Joshua, but I am grateful for the significant improvement in the frequency of seizures, I really am. Through the skill of the surgeons, they have altered nature’s changing course and that has to make Joshua feel better.

We went to the zoo, zoo, zoo and mummy came too, too,too

Despite Joshua’s lack of sleep the night before, he enjoyed his school trip to the wildlife park : we set off from school in two minibuses, each laden with a careful balance of children and staff, with combinations that would create minimal conflict. I have enormous respect for the staff being willing to take 21 challenging teenagers, each having their own unique ways, out for the day. I could see the anxiety on their faces as children were repeatedly counted and potential incidents were intercepted.

We tucked into a picnic lunch straight after the baboon enclosure, and then everyone sat still and devoured their snacks.Joshua took one bite of his ham roll, then threw the rest at me, which became a theme of the day; later he had a cople of licks of his ice cream then he hurled it at his teacher, I saw it happening but was just too slow to intervene! His throwing antics create much amusement amongst both staff and pupils.

After lunch, we walked through the lemur enclosure and they made Joshua giggle for several reasons : they were close enough as they leapt between trees over out heads, they were not to small to see and I like to think that he recognised the creatures from his favourite movie, Madagascar. The sleeping tigers and polar bears who were play-fighting in their water, did not get such a good reaction from Joshua. We walked a long way, Joshua started by walking well but after a fair distance,and a fair effort, he declines, and needed his wheelchair. I thought that he might have slumped to sleep but he stayed awake and enjoyed the companionship, if not the wilder animals.

The school trip ended with an ice cream, which  was a messy experience, then all embarking back on the minibuses for a 90 minute drive home. Some of the children nodded off, but not my son who kept shouting ‘Monkey’ and ‘Movie’ out, louder and louder. we arrived back in school, just in time for everyone to grab their bags and catch their transport home, so it was timed to perfection. While it was a fun day as a visitor, as we shared a hot drink together, it was clear how draining such an expedition is. As a parent I am grateful that despite the organisational trauma and exhaustion that an outing presents, that class trips are still part of his timetable ,as I can see how much they get out of such a fun day out. At this school it seems to be a matter of planning out how a trip can be enjoyed by all safely, whereas previously, Joshua has missed out because his epilepsy became a reason why he could NOT do something outside of the confines of school. We much prefer this approach and he has benefitted from many outings as a result.

The Fundementals of Caring

Joshua did not sleep last night – Thursday has become his favourite night for that lark these days! – and so I found myself up and in the snug at 2.45am, when he had wriggled out of the top of the bed and got himself stuck. I told him that he needed a good nights’s sleep ready for his outing to the zoo today, but he took no notice at all. I gave him cereal  and then I decided to make a cake and watch Netflix, so as to make good use of my time in the wee small hours.

I watched a film called ‘ The Fundementals of Caring’ about a teenager with Muscular Dystrophy and his new carer. I learnt that the fundementals are ALOHA – Ask Listen Observe Help then Ask again. But that only works if the person that you are caring for is verbal – I am really only left with OH! At 3am all Joshua had to say, repeatedly was ‘Monkey’ followed by a new word ‘Wonky’! I agreed with him that he was a wonky monkey, but that did not get us very far.

In the film, the teenaged boy with Muscular Dystrophy, rarely left his home due to his reliance on medical equipment and he only ever ate waffles and sausage, for every meal. But the new carer took him out on a road trip so that he could make the most of his limited lifespan. It did seem that his mother was protecting him so intensely, through an understandable fear for his safety, that he was a prisoner in his own home. But his carer showed him some of the sights that he had been reading about.

Joshua is not house- bound in the holidays and he has been to some great places in his 15 years, including several holidays overseas. While he enjoys a ride out in the car, likes to meet up with other people, Joshua is a real home-bird. His face lights up as he says with a grin  ” Back home!”, so much so you can wonder why bother taking him on road trips. But they enrich his life, offer him new experiences, even if he sometimes chooses to close his eyes and ignore them.

He is likely to be tired today for the class trip to the Wildlife Park, and his gold complexion may well be dimmed, but that cannot be helped, he will have to grab 40 winks on the bus ride there and back.

We’re all going to the zoo tomorrow..we’re going to stay all day!

I am lucky enough to be going on a class outing tomorrow to a nearby wildlife park as a volunteer. There will be 21 children and 10 adults going in school minibuses.I am really looking forward to it, it will be the perfect end to a hard-working week. I am hoping that the weather stays dry but that the eye of heaven does not shine too hot, or else that will add extra concerns about skincare from the sun. Some children do not appreciate seeing their mum on a school trip but fortunately Joshua is so used to seeing me around school, that he is unlikely to object to my presence.

I loved the first school trip that I went on with this school, five years ago. I was asked to go along so that I could be on hand to administer Joshua’s emergency medication if it was required. I was told that I did not need to stay with the class, just had to be close enough to be summonsed by mobile phone if I was needed. But I chose to stay with the class as we looked around a local park and took a land-train to a seaside town. Joshua behaved well so my medical experience was not called upon but it gave e a great insight into how the class operated and to get to know both the pupils and staff better.

I had thought up to that point that Joshua had been assigned to one teaching assistant , who would take care of him full time. It quickly became clear as we walked around the petting zoo that every staff member was familiar with every pupil, as they were constantly swapping about in a very natural, organic way. They each knew every child’s fears and foibles; so they responded like a team when an autistic boy had to be hurried past some peeling paint, as if he had seen it, he would have begun to pick at it until it was all off the lamppost. Another child needed reassurance as he walked in the gardens of the stately home, through a conifer tunnel, as he hated the dark. They knew which children should not sit together when we stopped for our packed lunch. It was all very impressive and was controlled so naturally, with no discussion, that it gave me even more confidence in the school, as as that time Joshua had only been part of the class for 3 months.

So I am looking forward to my day out tomorrow

Special delivery

Earlier in the week I wrote about my being on the madness spectrum and my friends and family, rather than contradicting me, supported my theory and agreed with me. One of the examples that I gave was us having a household full of pets. the girlsWell yesterday kind of confirmed this state of mind to be a reality as my husband and I, once Joshua had gone off to school, took our four dogs to te vet for thier innoculations and we took two of our cats to be spayed. You can imagine that our entourage took over the surgery and although we had booked several appointments for all of the tasks, a large queue formed behind us and we proved to have all too short a date. It could only have been more chaotic if I had tackled the visit on my own and perhaps had taken Joshua along for added fun!

She examined the cats first and they went into the back room to await surgery. Then she examined the dogs, two at a time, and they were all laid back about the injections, micro-chipping and their wormer. I faced a large bill at the end of the visit and I called out goodbye to our ‘kittens’. About two hours later, I received a call at work to tell me that the girls had not been spayed as they were both pregnant! I was shocked as there have never been any signs of a tomcat around our home and I had not appreciated that they were that grown up! I let the news settle in and then told colleagues at work who were either highly amused or went into panic mode on my behalf. By the time that I collected them at lunchtime, I had adjusted to the idea that both cats were expecting a litter rather than coming home spayed. We have no idea who the father is or when they might give birth, so this is more unpredictability in our already pretty unpredictable lives  and more pets in our already over-crowded home, just for the time-being at least.

Joshua is more of a dog-man, he is not interested in cats at all and I have already begun the process of seeking out potential homes for who knows how many kittens, but I had even become excited about the new arrivals by the afternoon, thus proving my point.

Holidays are coming….

We are now in the home straits for the summer holidays, with just nine more days of school left! Then we have six weeks to figure out how to occupy Joshua beyond him sleeping until lunchtime and then getting up to watch The Show endlessly, which is what he might choose to do given the choice. Of the six weeks we are on a family holiday for two of them, so that leaves four unaccounted for. He will have one long weekend at his respite provision but the rest of the time I will be working, so I will be relying upon Yorkshire Grandma, his PA and Joshua’s Dad to juggle the childcare between them, so that will be a fun balancing act.

Since the darling buds of May have passed, we have hurtled towards the end of term and it still seems incredible that we are in this place already, but then I have probably said that every year. I also know that the long summer holiday can feel like a long, void to fill and yet in early September I will be complaining that it has flown by again and that I have never got around to all of the things that I hoped to achieve. So I must get some playdates with friends booked in too, so that the time does not run away with me completely.

I have read and heard that several parents of special needs children – and probably mainstream too, to be fair – dread the long summer holiday when they have to occupy their children full time, without the respite of school. Not all of the pupils will understand that school is closed as they are bound up in that routine and so the change will upset them. I have explained several times that Joshua is not concerned by change, he will just appreciate not having to get up before 8am and will no doubt make the most of his lazy summer days. The challenge for me has always been getting him back into the routine after the holidays of getting up ‘early ‘ again. For the first time that I can recall, school are offering some summer school activity days, which  will I am sure prove to be very popular with families as a way of bridging that gap.

Joshua will not understand what is just around the corner, but if he did, I am pretty sure that he would be happy about it and I too am counting the days until our family holiday away….

Mad as a bag of snakes

I am fairly certain that I am on the ‘mad’ spectrum, if such a thing exists, and I am pretty sure that being Joshua’s mum has put me onto this path. I was told that I was bonkers yesterday , by a good friend, and not in a mean way as she added ‘ but I’ll tell you a secret.. all of the best people are!’ so that sweetened the pill. But I certainly agree that being non-conventional is more fun, rather than conforming and being predictable. And I am pretty sure that I gravitate towards friends who are pretty mad themselves, so that keeps life interesting.

Who else, but a mad -woman, would get up at 6am in a hotel after a long day at a family wedding? Surely I must be crazy to get up at 5am on  the day of the wedding, to bake a lemon drizzle cake for another friend’s 50th birthday tea-party, even though I could not attend? Is it not silly to welcome two stray kittens into a household that already has 4 dogs and another cat in it? They are too many examples to list as evidence but I think that I rest my case.

Perhaps I am being unfair to blame Joshua entirely for my mental state, I suspect that there was mad-potential there from a young age and it probably emerged fully once I left home, as my parents kept me sane. But a night like last night cannot help my natural tendencies : Joshua had an early bath and went to bed without complaint before 9pm. But he was still lying awake as we went up at 11pm, so I tried for two hours to persuade him to sleep, using stories, cereal and then resorting to his sedative, as his wakefulness was linked his two seizures earlier in the day I am sure, as he was giddy and noisy throughout the journey back home from the wedding, instead of sleeping. At 1am I handed him over to his dad and went to bed, but he woke me less than 2 hours later and I gave in and brought him downstairs. He watched The Show while I dozed on the settee, but I was rudely woken when he sat on my stomach and tried to join me on the settee.

I have told Joshua this morning that he is much loved – he is more lovely and more temperate than a summer’s day –  but that he cannot keep having nights like this as they are not good for his health or that of his parents. He has ignored my advice so far though, but is teasing me now at 5.30, by curling up in his armchair and closing his eyes for a couple of minutes. So you see, it is no wonder that I am driven to distraction, is it?

A summer’s day

The weather was very kind to the wedding yesterday: as we drove there for three hours, we came through torrential rain. I sympathised for the bride and her bridesmaids in their lace! But God was kind and as we arrived at the church the clouds dried up and the sun won the weather battle as it began to fight back.

We sat on two pews together with Nanna, cousins, aunts and uncles. Joshua always amazes me how unsurprised he seems when relatives appear in odd locations. It was a lovely service and we chimed in with the couple’s hymn choices. Then it was outside for photographs of the stunning couple with confetti and wedding cars.

Joshua walked all day yesterday, we left his wheelchair in the car boot. As we arrived at the reception, while others made a beeline for the bubbly being served in the garden, Joshua spied a guitarist. He climbed the steps to stand as close to the music and instrument as possible – he was mesmerised. I kept leading him away but Joshua was drawn, like a magnet, to the music. There were photographs galore in the garden and the we were summonsed indoors for the wedding breakfast.

We wished the couple well en route to the dining room, then wrote them a message in a wooden jigsaw piece and left our fingerprints on a tree of guests. Joshua and his young cousins on our table found it challenging to sit still for the three course meal and the speeches, while they ran outside to play, Joshua had a nap after  enjoying his bangers and mash! The bride’s father, grandfather, husband and two best men all made good speeches and the happy couple were well and truly toasted.

We slipped out before the evening do to check into our hotel and while we were there, had a short nap which revitalised all three of us. When we returned the disco was in full swing and it just started to drizzle in the garden. We hugged and waved cousins, aunts and uncles goodbye as they travelled home and then Joshua and I took to the dance floor. Shall I compare his dance technique to that of a pneumatic drill, he did not move his feet, simply dancing from the knees up! But he was happy. We bid our own goodbyes to the bride and groom around 11pm and headed back to our hotel with Nanna. Joshua soon settled down in our large double bed and was quickly snoring, after a long and active day. But before we were all asleep, Joshua began snorting from under the duvet and he had a seizure. He began his loud shouting of ‘mummy’ and I thought we were in for a sleepless night, but I was able to snuggle him back to sleep thankfully.

It was a lovely family occasion and I wish the newly married couple, a long and happy marriage

Looking forward to a family weddding

After a busy week of a lot of travelling across the country this week for work,  we have another early start today, to travel three hours to a family wedding. It is a grey start so far this morning so I hope the weather brightens up for their special day, in particular for the photographs. All of our smart outfits are laid out to wear and thankfully, Joshua’s suit from a previous wedding still fits him, so he will look uncharacteristically smart, all being well., at least for the start of the ceremony, even if he cannot maintain that look all day long.

It will be a welcome happy occasion for the family to get together, as the last gathering of my inlaws was for my father in laws funeral in the spring. Joshua will see 5 of his 6 cousins , 2 of his 3 Aunts and Uncles and one of his grandmothers today, so I am hopeful that he is on good form and does not want to sleep the day away but enjoys their company.We will take his wheelchair along of course, but hopefully he will feel well enough to walk around mostly and to fully participate in the occasion, even if he does not understand the reason for the party.

Joshua has attended several weddings in his life and the most challenging part to maintain his interest is during the meal, which tends to take some time and then of course, he can be required to sit still through speeches too. We have usually needed to let him wander around, to stretch his legs and to be able to express himself outside, as there is pressure on him to sit quietly so as not to distract the other guests. When he was younger, if he became tired during the day, he could have a nap on two chairs pushed together, but at over 5’10” now, that is not going to be possible, he is so leggy.We are staying overnight and so he will at least have a bed in the vicinity if he needs it at some stage during the day.

So I wish the bride and groom a very happy day and, even more importantly, a happy marriage  and life together, we are delighted to be able to share in their celebration today.

A school -gates comparison

I swapped school experiences yesterday as a friend asked me to collect her son from his independent school at the end of his school day, as she was working away. So for the first time in a long time, I got to wait in the car park at 3.45 with all of the other Mums, Dads and grandparents. There was lots of socialising that went on between different groups and I saw first hand what we miss out on when our children are transported to and from a special school: I eavesdropped conversations about planned holidays, traumas about clothes shopping and various ways in which parents of children of a similar age were all sharing with each other.

At Joshua’s school, we have tried to re-create that same environment, somewhat  artificially, through the monthly coffee mornings. That is an opportunity for carers to air their views and concerns amongst a receptive audience, who they know will understand and will support them, offering advice and often, simply agreeing that their life is challenging. At those events, there is no need to explain about what it feels like to have a child with special needs , despite the differences in every child’s disabilities, we learn that it is a struggle for us all. Joshua does not have the behaviour difficulties that many parents live with daily, regularly having their homes destroyed or feeling under the threat of violence from their own offspring, but his main challenges of epilepsy, sleep issues mobility problems are also demanding, but in a different way. Some of the young people will be able to go on to live independent lives once they are adult, but sadly Joshua will not be one of those.

In the same way as the independent school, Joshua’s special school is giving him the best opportunities for learning and it tries to develop his life skills for the future.Joshua will not have the musical or sporting opportunities that are clearly fostered at the private school, but his more fundemental needs are being met on a daily basis. He receives encouragement to meet his potential everyday and real efforts are made to find alternative ways to engage him. So both schools, with their very different pupil-bases, are both striving for the same goal – to prepare their pupils for the best future that they can have and to make them feel good about themselves, by celebrating successes, no matter how small.

Sporting achievements

We were blessed with wall to wall sunshine yesterday for school’s sports day and it was a great day, that was enjoyed by many. It was the Juniors in the morning and I was amazed to see how many parents, and their extended family had come along to support their children. I had baked some brownies and some scones to add to the refreshments that the sixth formers were serving, and all of my brownies disappeared, leaving none for the seniors in the afternoon! There was so much enthusiasm out there : from the children running, the families cheering and the staff encouarging – there was a great atmosphere and it was infectious. There were a few children who were running round the perimeter of the playground, closely followed by their teaching assistants, so it was a lively morning and one that must have exhausted the staff. I love to see proud children running to hug their parents , and grandparents, after they cross the finish line.

In the afternoon, it was the turn of Seniors and Joshua spotted me and his Dad in the audience very early on and he waved and grinned at us. He had four races in total : running, egg & spoon, beanbag and quoit. Each time, his patient TA helped him out of his chair and ran with him, encouraging him to take part. He was not sure what was going on but he enjoyed the atmosphere and the cheers of the audience, so he played to the crowd : by the final races when he was required to throw the quoit into a hoop, instead he threw it as far as he could towards his dad. The Head commented after his slow egg & spoon race that maybe sport was not going to be Joshua’s thing, but she revised her opinion later and suggested that his strength might be in a throwing event.

There were fewer families in attendance in the afternoon, but those who came seemed to enjoy themselves and thankfully, the sun stayed out for us too. But sports day is a key summer event in the school which tends to be well supported and I was certainly pleased that I stayed in school all day to share both parts of the day. Being outside of the normal school routine must be stressful for some of the pupils, and hence for the staff too, but there were very few incidents that were visible to me, and certainly, the staff did not let their stress show, as most were beaming  as much as the children.

All in all , well done to the staff and the children, it was a great day !

Run baby, run

I have woken up to clear blue skies this morning, so it looks as though our school’s sports day will go ahead today. We have Junior sports day this morning and then it will be seniors this afternoon, when Joshua will hopefully run his races. I have swapped my day off to be in school all day today, as after the sports day, I am due at a Governors Meeting tonight, so it is a day ahead dominated by school-matters. I do not have high expectations for Joshua’s sporting prowess, but I will be there to cheer on the other pupils too and to mingle with other parents. Sports Day is usually well attended by families and I hope that the sunshine will encourage more out than usual. It was Sports Day five years ago when I met the first Mum from this special school,  we got chatting and becamefriends.So it is a social occasion as well as celebrating the efforts of our children.

Joshua is usually disinterested in races and certainly, in winning, so much so that he does not warrant sending in shorts and tshirt, as he never breaks out into a sweat! But I love to see him with his peers and to see the enthusiasm of the other children and, just as much, from the school staff, who are always very competitive. He has been virtually dragged over the finish line several times at previous sports days. I do not think that Joshua’s disinterest in school races is wholly down to his disability, I believe that he has inherited his Mum’s – and his Granny’s for that matter – lack of competitive spirit when it comes to physical activity. But that does not mean that I do not admire those who can and do run, it is just a skill that I have never mastered that is all.

So I will go and cheer Joshua on from the sidelines and I am sure that he will do his best, but even if he doesn’t, I will still be proud of him, as I know the supreme effort that just walking takes for him.Go Joshua!!