Win, win!

On Friday I am hosting a Macmillan Coffee Morning at Joshua’s Special School to raise funds for this very special, important cause that is close to my heart. I had originally said that I would not hold a coffee morning as it is my birthday and so , selfishly, I had not particularly wanted to bake and hostess on my birthday. But then, an important lady in my life has been recently diagnosed with breast cancer and begins treatment next month, and this came as a wake up call to me : cancer does not care if it is your birthday or not! So I volunteered to host the school event, which will be fun I am sure.

I have roped in helpers, both  extra bakers and helpers on the day itself – I have already got two apple loaves and  some chocolate tiffin ready in the kitchen and I am still expecting a  banana loaf, orange cake, parkin and a ginger cake to arrive before the day. I have some brownies bubbling in the oven now as I am writing. In addition the classes at school are going to bake and donate their creations and some parents and staff might also bring along something home-made or shop-bought on the day.

The  World’s Biggest Coffee Morning for Macmillan Cancer Support day happens to fall on the last friday of September so it would have been our normal Parent Coffee Morning date anyway, only this one should be bigger and better. I am hoping that it will be a good way for the new parents, who’s children joined the school earlier this month, to meet other parents and to take part in the first social occasion of the new term.

I ran my first Macmillan Coffee Morning 5 years ago as a tribute to my boss, and mentor, who had died of prostate cancer earlier in the summer, as he always said how brilliant his Macmillan nurse was, so it seemed fitting.  I am sure that we will raise more money at school than we did at our small company as we have asked that the pupils bring cash to buy cake at break time as well as parents being invited in. So I am hoping that we are rushed off our feet, as who doesn’t like cake??

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Today is another Day

As Joshua set off for school yesterday, we had no idea what his day would bring. He had got used to seeing both of his Grannies when he came downstairs in the morning, so he might be surprised later today when neither are here any more. He went happily to school, shutting the door of the taxi quickly as soon as I had kissed him goodbye, keen to get moving.

I had a call from the school nurse at 1 pm to tell me that he had experienced a cluster of seizures and they had gone on so long that he had needed to have his emergency medication. He had hit a member of staff in the face in between seizures too, which he has never done before. They said that he was still coming around so I asked her to call me at 2.30 when we would decide if he was well enough to travel home by school taxi or not.

But a teaching assistant called half an hour later to tell me that he was shattered and needed to sleep it off, with his splints, boots and helmet off. I was happy to authorise that but felt that he would be better sleeping it off really at home, in his den quietly on the settee, rather than on a beanbag in a noisy classroom. But they were able to provide makeshift resting facilities and they have access to a nurse at school should he have begun fitting again. But the call left me nervous at work, awaiting another update.

The TA called back at 2.30 and explained that though now awake, Joshua was woozy still and so my husband set off to bring our washed out son home, rather than risking the taxi , where he has no quick access to midazolam if it is needed again. He was sitting waiting for him in reception when his dad arrived to collect him.

When I got home from work, Joshua was wandering around, having eaten some tea. There had been no more seizures and Yorkshire Grandma had taken charge. Having slept a fair bit at school, he was pretty lively during the evening and at bedtime he jumped out of bed several times before he settled down to sleep.

This was not the start to the week that I had hoped for, for him but as with most things, he took it in his stride and today is another day, so let’s hope that it’s a better one.

Family Fun part 2

It was another busy family day yesterday, full of cousins, grannies, sisters and nieces as I went to my cousin’s baby daughter’s christening. It was over a three hour drive away so we decided that Joshua would stay at home with Dad and Nanna, while I took my mum, sister and niece down South.

We had a lot of laughter and chatter in the car on the way and we arrived on the dot of 11, despite our early departure and smooth journey, so we sneaked into the back of the church. After the service we went to my cousin’s lovely family home for a delicious celebration lunch. It was an opportunity to meet new family members for the first time and to get re- acquainted with those I had not seen for some time.

Most  members of the family asked after Joshua and I was able to bring them up to speed on our cheeky boy. On several occasions I was grateful that he was not with me, although he would have enjoyed the occasion : he would not have sat still in church after over three hours car journey, the house was crowded with guests and so Joshua would have struggled to find somewhere to sit down and he would have made a nuisance of himself flashing his tummy and trying to stroke the hair of strangers! So although he would have enjoyed the party, it was a more relaxing event without him in tow I’d say and I really appreciated having the choice.

Family Fun

Joshua had a great day yesterday and kept on saying ‘Thanks you’ most of the evening, I think indicating that he had had fun : when he woke up and came downstairs, he found his two young cosuins already in the snug playing with Kevin the puppy and so he joined in, sitting on the floor throwing the ball or a squaeky pig for him. After breakast we went out into town, Joshua and I went to the supermarket for forgotten bits and pieces, while his cousins went to the swings in the park with his Aunt. There was an autumnal nip in the air so we all needed warming up in a cafe, where the youngsters all tucked into something chocolately in a comfy booth, which delighted Joshua.

When we got home, a bit later than planned, he found his two Grannies had arrived too and his face lit up again. We had some sandwiches for lunch and then set off, in two cars, for a half hour drive to the theatre. There were eight of us and we met up with six friends at the theatre. Joshua was already surrounded by 7 family members, so he was pretty contented, but his face lit up even more, with pure joy, when he saw some good friends arrive too. He high-5’d everyone and beamed, looking from familiar face to familiar face, this was a treat and a half!

I had booked seats to see ‘Madagascar the Musical’ which is one of the three films that he enjoys watching most days – we even saw it twice at the cinema in 2005 when it was released! So when the show began, with his familiar music and characters, his eyes and mouth were both wide open in disbelief, this was amazing and turning into quite a day. Joshua alternated between loving it and having a nap as it was too hard to focus so long I think, but he sat still throughout the performance. He refused interval ice cream but he loved looking around the familiar faces surrounding him.

We walked back along the seafront back to the car park and squeezed back into the car. We finished off the exciting day with a family visit to a favourite fish & chip cafe for tea, where Joshua enjoyed his meal, while stroking his cousin’s long hair next to him. He could not have been happier, although she was not so keen!

This was, by anyone’s standards, a day of treats and a day when Joshua’s face and expressions regularly showed how happy he was. This outing was one of my plans that worked out even better than I had hoped, and that does not always happen, but I dont think anyone can have enjoyed it more than Joshua.

Tough Act to Follow

Yesterday we looked around our first ‘adult’ short breaks provision – Respite is now called Short Breaks – the first of three alternatives in our local  authority area that our 18+ social worker has identified for us. So that is the first thing, we have a choice of three once Joshua is 18, but as a child, he has to travel 50 miles for his Short Breaks! My husband and I both went to look around, with an open mind and not really knowing what to expect. This one is just 15 minutes from home so it wins on the convenience stakes and is in a beautiful, rural location, overlooking fields and stables so Joshua would feel at home there.

The manager greeted us with a smile and she was very pleasant and she showed us around, answering all of our questions. There was just one resident there at the this time and in fact I knew her, she had she is two years older than Joshua but they had shared two previous provisions. She looked happy and seemed to recognise us – she had certainly lead my husband by the hand around a garden in the past! – and her two carers seemed to be attentive and friendly. It has four bedrooms, all with double beds in, which was a key difference from his current location and took me by surprise, until the manager explained that they are all adult residents and asked how many adults I knew who slept in a single bed, which was a fair point. It had a safe garden with a bright mural and a new trampoline, so it was starting to represent a sensory garden.

I liked it and I liked the manager, but I did not love it. I fell instantly in love with  his current placement – the staff , the building and the city centre location – and while possible, it did not compare with that. Perhaps we have been spoilt with the best?  This is a new home, it has only been open for around a year and so it still lacked heart for me. But possibly it only needs the buzz of more staff and residents for it  to feel more homely.

We will view the other two  local places and then let our social worker know our preference. And then they will need to do whatever needs to happen with the finances, and of course a gradual Transition process will need to be planned in. The new staff, wherever they are based, will need to meet Joshua and to see him both at school and in his current respite provision, so that they get the professionals’ opinion as well as seeing the young man for themselves.  There are certainly exciting, but scary, times up ahead as Joshua turns 18 and I am trying to embrace the change, as it will happen, whether I like it or not.

Tales of the Unexpected

Almost just as soon as I posted my blog yesterday, Joshua began to have a cluster of seizures ; he was curled up on the settee next to me, just dozing off, and then his breathing became laboured and his eyes opened and his arm tensed and stretched out. I sat next to him, grabbing my phone to time the seizures, and held his hand and stroked his back, to reassure him that he was not alone. He had 11 of those seizures in just five minutes and so I left him to go to the kitchen to fetch his emergency medication, as it was not looking as though they would stop on their own.

The seizures started to slow down in frequency, as after 9 minutes, he had endured 14 seizures and gradually they stopped, without me having to intervene, but it was an intense quarter of an hour for us both. Joshua then only wanted to sleep, so having been up and lively since 3.30, at around 6am, he went into a deep sleep. I suspect  that he had a sensation that the seizures were on their way, since 3.30, possibly that was what woke him up and so it will have been with some relief that they finally arrived and in a way, he could now relax.

But this gave me a dilemma, when at 7am he was still fast asleep and I would normally have been giving him breakfast. I have found in the past that, if he is woken before he is ready, that he is more likely to begin fitting again. So I decided to cancel his taxi to school and to text work to say that I would be late into the office, and to see how he was once he woke up, only when he was ready.

Joshua did wake up after almost three hours and he seemed to have recovered – he slept himself better! So I got him dressed and set off to school, where we arrived almost an hour after his usual start time. He was happy to be there and he greeted everyone that he saw on his way in, telling many of them that he ‘liked’ them. I was confident that his seizures were behind him, but you can never really know for sure, you just need to have faith that the school staff will do the right thing for him, should seizures begin again. They have school nurses there who have his emergency medication if required.

So I returned to our home town, where I work, and got into the office by 11am, feeling as though I had done a day’s work already!

Caught Napping

I am out of practice, just to keep me on my toes, while Dad is away overnight, Joshua thought he would like to get up at 3.30. He would not get back into bed, so we both came downstairs and he had his Weetabix a bit early. Once he had finished his three Weetabix, he headed back upstairs and into his bedroom. So  I thought that he was simply hungry – though Heaven only knows how, the amount he ate last night. I went back to my bed and expected us both to get some more winks, but no at 4.30 he was back out of bed and on the landing, and judging by the books on his bedroom floor, no winks had been gained in there at all. So we are both up, have had a 5am bath, done some baking and put a load of washing on.

3am always used to be a crunch time for Joshua when he was younger, so I am not unfamliar with this time of day, just that I have not made its acquaintance more recently, luckily. If I set an alarm, we could have a power nap before we need to get dressed, just to top ourselves up, as it wasn’t even an especially early night either. In othe old days, Johshua  would have made up for lost time on a giant beanbag in the corner of the classroom, but these days he is too busy and nosey to nap at school – he might miss something!

I tend to find that I will be OK this morning, but by 2/3pm, the tiredness will start to hit me. I start to feel dizzy and a bit nauseus and if I can just have a short nap, I find that I am able to carry on until bedtime. I will try to doze in my lunch hour, as I am in the office today and siestas are, regrettably, not encouraged in our culture. The siesta is a luxury reserved for weekends and holidays.

As I look across from my laptop now, my cheeky son is snuggling down on the settee, under a throw, all set for a snooze, and I think that I might join him……