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?

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 became friends.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!!

 

 

Hello again,hello

I was in school yesterday morning working, so it felt odd driving in without Joshua and I got a few curious looks as I walked down the corridor alone, as though I had forgotten something. But Joshua did not arrive until after 10am, as he leaves respite late, to avoid the rush hour traffic. I was sitting in a public area of school when he arrived and he spotted me at quite some distance – proving that his eyesight may not be as poor as has been suggested. He stopped walking, grinned and  pointed at me as his greeting and we shared a Joshua-bear hug, as we were re-united. He was then reluctant to carry on into class, despite the lure of toast, so I took his hand and lead him in, where other staff were greeted with beams and hugs too. He was clearly content to be back at school.

I did not see him again, as he disappeared into his classroom, and I returned to my office later. So our next reunion was at home after 6pm, after Yorkshire Grandma had given him some tea. This time he was slightly sleepier, so my greeting was less enthusiastic. I read the detailed respite diary and saw to be surprise that he had refsed to have a bath each night that he had stayed there, whereas he loves a bath at home and it can be hard to get him to get out of it. As I read the diary to him, he picked up on the word ‘bath’ and he jumped out of his chair and queued by the door, waiting to be allowed upstairs. He enjoyed a long, luxurious soak and then fell asleep in bed, while watching his familiar, comforting Lion King, so all was well with the world once again.

But I was awoken at 3am with happy Joshua noises, so I went through to see what was going on and Joshua was sitting up in bed. So he has now had some cereal and I have left him quietly to settle down again while I came downstairs but I can hear him, through the monitor, repeatedly calling his ‘mummy’, so I guess this aspect of his nighttime routine is back too, having slept through at respite. Welcome back Joshua!

Time flying by

Joshua has managed a whole  long weekend away at his respite provision and when I called them last night to hear about his day, they were delighted with him. They said that he was very happy and friendly and that he had enjoyed  his time there. He has always slept well at the three overnight residences that he has used in his life – they have never reported any of his all night vigils or even broken sleep. In fact he is often tucked up in bed at 8pm for them! Is that because we have his bedtime routine wrong at home? could it be because bed is an escape for him while at respite? Or is it that they keep him so much busier during the day, that he is more stimulated, so that he is much more ready to go to sleep? I imagine that I will never know but suffice it to say, we should both be well rested after his monthly respite weekends.

It will be the start of our family holiday for his next booked weekend at respite, and so he will miss out as we have decided not to delay our trip to the seaside while waiting for Joshua to get back. So unless they can offer us alternative dates, he will not return for 8 weeks, which takes us to the August bank holiday weekend and the end of the school holidays. The long summer school holiday can prove to be a challenge in terms of childcare and entertaining our children, while juggling work. This summer should be a little easier as Joshua has Yorkshire Grandma, his PA/TA and his Dad available for childcare and for the first time, school are offering a summer school option of activity days. I am waiting to hear if Joshua has got the one day at school that I have selected, when activities that might interest him are on offer. I know that as usual, when he breaks up in July it feels as though six weeks is a long stretch to fill before he returns in September, but then it passes in a flash usually. When we return from our family hoiday, the school break will already be half-over!

But before Joshua’s end of term, he has fun activities planned like sports day this week, a class trip to a wildlife park next week and a school disco too in his final week of term, so he is a lucky lad and I am not wishing these final three weeks of term away.

Birthday Plans

I have a big birthday coming up at the end of September and yesterday, we began to plan some celebrations which was very exciting as respite gives me not only time to catch up on sleep, but also it gives me thinking space. On my actual birthday I would like to share a meal with a group of friends to celebrate in style. We have identified two local alternative venues that have private dining rooms, so that we feel as though we have the place to ourselves. I enjoyed writing my list of friends to invite and I started to ponder Joshua’s inclusion in the midweek celebration?

I decided that I would like him to join us, as he is a large part of my 50 years on this earth : if he can stay awake, he would love a party, with all the noise and laughter, he is unlikely to eat anything. He has been known to play up to a crowd, although he may not appreciate his Mum being distracted. So Joshua, has made it onto the guest list and the plan is underway…

I have written before about how Joshua’s unpredicatbility has made me less inclined to make future plans, but something like  a big birthday, does require planning and although it is still 3 months away, I have to admit to getting excited yesterday as we discussed options. I have requested several  small celebrations with different groups of family and friends, rather than one party with everyone together. That way the celebrations go on for longer and I am able to focus more on different groups more fully. I have also requested, no surprise parties where I walk into a dark room and people leap out from the darkness shouting ‘surprise!’, I must be too much of a control freak to appreciate that but also, I enjoy the anticipation too much to miss out on it.

Having a September birthday means that I was one of the oldest in my year at school, and so I will mark one of the first of a year of golden anniversaries. Birthdays are a time for reflection as well as celebration, so as it approaches, you can expect some reflective blogs looking backwards across my life. As I left home in 1985, to go to university, I had no idea what direction my life would take : what career I would pursue,where I would live, who I would marry and biggest of all, that I would have Joshua in my life. I am delighted to report that as I approach my half-century, I am happy with my lot and I feel most fortunate. Nobody knows what the future brings and I have adjusted and have now learnt to accept unpredictability in my life and to go more with the flow. In addition to looking back, I will also be looking forward to my next 50 years and to what more might be in store.

Recharging the Batteries

Joshua is at his respite provision this weekend and so we have come away from home, to relax and enjoy some time together. I cannot blame Joshua this morning but I woke, as usual, around 5.30 am and as the sun is shining and the birds are singing, I have come downstairs to start my day. I was in school yesterday afternoon, when my son left early to get his taxi to his respite and he giggled when he saw me and I gave him a kiss goodbye. It was good to see him so happy, after such tired or staring days lately. When I got home from school, I made a cup of tea and put my feet up on settee and I had a sleep for 90 minutes, just because I could, and it was exactly what I needed.

I called to find out how Joshua was at 9.30pm and was delighted to hear that he had arrived happily, had wandered around getting re-acquainted with the place and the staff – after all he only stays there one weekend in four -, he had eaten most of his meal and he had gone to bed by 8pm, sleeping soundly. It was exactly the report that I was hoping for and it meant that I could go to my bed, confident that all was well.

I told Joshua that I would see him on Monday, but I do not think that is meaningful for him. I trust that he just knows, from previous experience, that he is there for a short break and that soon enough he will be back at school and then back home. I have explained before that Joshua does not get aggitated and has always coped well with change, taking it all in his very long strides. He would however be more upset if he knew where we were, without him, and even more so, that his Granny is coming to join us later today! But he will be having his own fun  – they have an outing planned for him today and he is already very fond of the staff there, so he will love their undivided attention.

Now that Joshua is 15 years old, it is more natural for him to spend a bit of time away from his parents and indeed, for them to spend more time apart from him. While I intend to make the most of the separation, I know that by Monday, I will be longing to see Joshua again.