Penultimate Prom

Tonight is the 6th form prom at Joshua’s school and so it is a day when a real fuss is made of the 6th formers, particularly those who are leaving the school this year. The whole of the 6th form are invited, not just the leavers, to make it a bigger party. This year is a bit different, this year it will be held in the school itself, rather than a hotel like previous years. Sixth form have been preparing for this for weeks : dancing practice and making decorations for the hall. Yesterday Joshua came home with a list of things he is to bring today ready for his pamper : toiletries, slippers and Pjs so that he can chill while everyone is getting ready, getting their hair done. My main worry with that plan for Joshua as he has been this week, is that once he is in his slippers and pyjamas, they will never get him dressed into his suit again, he will just want to curl up and snooze somewhere!

The sixth-formers stay on after the school day, after parading around the school this afternoon to be admired by the rest of the school in their finery. Then parents are invited to attend from 5 pm onwards to join in the fun. The whole event will draw to a close at 8 pm when we will take our tired 6th formers home again. I really hope that Joshua lasts until the end of the party and that he finds the excitement of the other students infectious and he joins in. Last year he got over heated and so he was not on the best form when we arrived, but he perked up after some Magic Calpol and some fresh air, and soon he was on the dance floor and surprisingly, we were amongst the last to leave last year.

I know that some of the more able, aware pupils are very excited about their Prom night and they have taken an active role in suit shopping and are counting down the days to their big party. It will be a highlight of the year for many and that is really special. But Joshua is oblivious to the build up and to him, it will probably be like a summer term school disco. I am looking forward to seeing those 19 year olds who will be leaving school in a week’s time as i know some of them pretty well as they were in the same seniors class as Joshua. I wish them all well for the future, whatever it brings.

However, their leaving school, makes Joshua in the final class of his school career from September onwards, which is a sobering thought. This will be Joshua this time next year, saying goodbye to all that he knows and loves and stepping out into the mysterious world of daycare. It is a sharp reminder that we must begin to look around the alternative daycare provisions that are available in the local area and start to plan his future, as it will be here sooner than I realise. So tonight could be an emotional event.



Joshua has been off colour now since the weekend and I am having to use my powers of deduction to guess what the problem might be, as he cannot tell me if something is hurting him. He seems unusually tired and he has lost his appetite, those are the main symptoms, so what can we deduce from that? Joshua also sounded hoarse on Sunday morning and so I deduced that he had finally caught the cold that I had and then that I had passed to my husband. I knew how bad that I felt at the start of my cold as it began with a headache, sore throat and earache and so since Sunday , I have been dosing him up with Magic Calpol. This paracetamol is to help him to feel better, and I am assuming that it will help if anywhere else is hurting too, so it should do no harm. But if it is my cold, I would have expected him to have come out with a cough or runny nose at least by now, so I am now doubting my diagnosis. If he continues to be unwell, I will take him to the GP, but they are as likely to be as in the dark as I am, other than they may be able to look at the back of his throat – if I hold his jaws open that is! Then they may be tempted to prescribe a general antibiotic, but I would rather avoid that if I can.

We have had periods of mysterious illness/loss of appetite before and work through this same process of elimination. Last time, 18 months ago, it turned out to be his teeth : he had tooth decay, needed fillings, had thrush and two abscesses and once that was discovered to be the root cause of his loss of appetite, he had to wait for 7 months on a waiting list before he could receive treatment. That special needs dentist had told us that he would be reviewed under sedation again in another 6 months, as it is the only way to get a proper look inside his mouth, but that was now a year ago. I will chase that follow up appointment today, in case he is suffering inside his mouth again.

Earlier occasions when he survived on a diet of Weetabix only, he had tonsillitis, so he is prone to throat infections, as I was as a child, But other than that, Joshua has been a healthy child; he is not one of those children who are frequently being sick, thankfully. I am much better at dealing with blood than I am with vomit. He has not needed a GP for months, not since he had a skin rash that school needed us to rule out impetigo, as they had other cases in school and wanted to avoid an epidemic.

So for now I will continue to watch and  assess Joshua and to see how he gets on and hopefully whatever it is, will pass and my hungry, lively son will return.

Puppy Love

Incredibly Ruby’s puppies will be 7 weeks old today. They have been such a blessing in my life and I have adored watching them grow in size and confidence during that 7 weeks. Yesterday I had the best welcome home at lunchtime as I opened the front door and six dogs spilled out, all delighted to see me home after four hours of being away at the office. We are fortunate enough to have a field that we can walk our dogs in, where no other dogs go, so it is safe for the puppies, before they have had their injections. I led them all around the perimeter of the field and the pups followed me and their parents enthusiastically and it was a long way for their short legs. When we got back to the house, I ate my sandwich outside and then lay on the picnic rug and played with the puppies for the remaining ten minutes of my  lunch hour. I could have easily stayed there all afternoon in the sunshine.

It will be tough to part with this litter, as they have brought me such joy at a difficult time in my life, but I know how happy these puppies will make our nieces and I will get to see them grow up as they are staying within the family and we are keeping Betty Boo. These dogs will make their new houses into homes, as I cannot imagine our home without at least one dog in it. We got our first dog, Shandy, when I was two years old and since then I have only been dogless when I was away at university, and even then my future mother in law was keeping Barney at her house, ready for when I graduated.

I like to think that we are giving these puppies a good start in life : Their mum has been an excellent mother to them with her feeding, cleaning and protecting them. We kept Joshua away from them until they were a decent size and speed – only yesterday he trod on one’s tail in his big NHS boots and made it squeal! They were in the safety of the utility room for their early weeks and now they love being outside in the yard to the front and on the lawn to the back of the house, where they have freedom to run and play together. They certainly appear to be happy, healthy puppies and in a weeks’ time they can have their first inoculations and we will get them micro-chipped. That is about the last thing that we can do for them before releasing them out into the world, where I know that they will be spoiled rotten and loved to pieces.

I am not sure that Joshua can tell them apart – my husband struggles – so I doubt he will notice when Hugo leaves at the end of the month and then there will be just two puppies instead of three. Joshua has never not had at least one dog in his family and they have all learned to be gentle with him, despite the way he stretches their necks and flicks their ears. They have also learnt how to jump out of his way as he walks around the house or as he crashes to the floor with a seizure. The puppies have not yet witnessed a tonic clonic seizure, but they will I am sure and it will be interesting to see how they respond.

So happy 7 week birthday puppies, you have brought more love and joy to our home and you are on the brink of a new adventure.

A Splashing Time

When Joshua had come downstairs yesterday, sounding hoarse, I understood why he might have been in an unusually bad mood the day before, he may well have been battling a sore throat. That fitted with his lack of appetite too. So I hesitated that my Sunday morning plan included a swim for our young overnight guest, but Joshua seemed to be content enough after his breakfast.

I had not been to this particular swimming pool for years, not since Joshua was small and it has recently undergone a modernisation, so I was keen to see how it had changed. Firstly it had only cost £6 for all three of us to swim, which seemed to be a bargain – I was free as Joshua’s carer. Joshua and I had plenty of room to get changed in a private family changing room and the lockers were large enough for us to fit all three of our clothes and bags into, as well as Joshua’s large boots and splints.

The foot spray on the way into the pool area was unusually warm and the pool area was light and bright, rather like a small Center Parcs dome. The water was lovely and warm so there was no trouble persuading Joshua to enter the pool, as we often get in our local council pool, which always feels cold at first. Joshua bounced off in the warm water, always within his depth, as the deep end was only 5’3″ ,so he could always touch his feet on the floor of the pool. Joshua was beaming, clearly really happy; he kept on giving me the thumbs up and patting his chest to tell me that he loved it. He waved at the other families and groups of young people who were swimming and was just very happy and relaxed in the water, which was wonderful to see.

Our young companion went on the slide  several times and we watched from the shallow end. While we were there one time, the wave machine came on and Joshua loved having the waves crash over him and being wafted about by the rough water. He laughed as the water splashed him in the face, no fear of getting his face wet or of being knocked backwards by the artificial waves.  We enjoyed  50 minutes of play in the pool and Joshua never made any attempt to leave the pool early, which is good for him. He even tolerated the warm shower afterwards too, which is not his favourite activity, but as he was relaxed and happy, he was content to stand under the spray of water for a while.

I am so glad that we went swimming, I will definitely be using this pool again and Sunday morning seemed like a good time and day to go, as there were people there to wave at, but it was not so busy as he was bumping into anyone and we got access to family changing, both times that we needed it. Joshua used to have swimming lessons at our local pool and so he is confident in  the water, considering that he cannot swim, but the cold local pool always made it a battle, so now I am pleased to have found a convenient alternative. He is timetabled to swim in the hydrotherapy pool 2-3 times a week at school but lately his swimming stuff has been returned to me dry, so I queried it and as he is 2:1 staffing, they have been too short staffed to take him recently. Judging by yesterday’s experience, he has missed it and I am pleased to find a fun activity that he enjoys ,that we can do together. It is Riding for the Disabled again tonight after school; he has not been since before Mum died, so I am hoping that he has missed, and enjoys, that too.

The Host without the Most

Joshua was not in the best mood yesterday, he woke up pretty grumpy and didn’t really recover, apart from a few bright moments. He was atypically cross from breakfast time onwards, and gave me a few smacks over breakfast, so maybe he was not feeling well.  He enjoyed his trip to Tesco, but looked rather washed out when he sat on the seats at the end of the tills after zooming around the store at high speed. He retired to his den while I unpacked the shopping, and when my friend’s son arrived to stay overnight – he gave them a smile but didn’t come out of his den to join in. So we did some weeding and tidying up jobs outside, while he stayed indoors and watched his show.

Next my niece and her boyfriend arrived to meet their new puppy, Hugo and there was much excitement at their first meeting, as they fell in love at first sight with the wriggly, black ball of fur. Joshua peered into the room to see what was going on, but then retired back to his den. We had a salad buffet lunch and I took him some of his favourite quiche, but he ate one mouthful then rejected it. He did the same with the cake that I had made for our guests. We were all full so we sat outside in the garden, on picnic rugs, with the puppies to play with and snuggle. Joshua would come and sit on a rug for a few minutes, then go back indoors again, which was pretty anti-social.

Later, around 4.30,  my sister in law, brother in law and nephew joined us as they had been to a local university open day to look around. Joshua came outside to see that the party had expanded further and he only stayed very briefly, to acknowledge our guests, then he returned back to den and later he lay on his bed watching a Bruce Springsteen DVD, abstaining totally. He clearly was not in the mood to socialise and he perhaps resented the fact that the puppies were the main attraction.!

I gave him his supper quietly on his own in his bedroom , and he did enjoy and eat that , responding perhaps to some one on one time too. I took our young overnight guest out to buy a takeaway for our tea as I was too tired to cook anymore, and while we were enjoying eating that, Joshua appeared downstairs to demand a bath. Once the boys were eating  their pudding of banana splits, I took Joshua for his bath and some more quiet time, just us two. He then got into his PJs and had an early night.

I am hoping that my usually sociable son, resets overnight so that he joins in more today. Perhaps he was just having on off day and he needed some quiet time or maybe he was reacting to the fact that I was distracted by our guests and was not giving him the full attention that he wanted.

Time to Review

Yesterday we had the first review meeting at Joshua’s new adult respite provision to discuss how his first few months have gone. Myself and my husband met with  the respite manager and Joshua’s key worker, and our social worker. We sat around the dining room table sharing how well he has settled in and planned the future, when he will progress to longer stays. He has started to eat there and is getting to know the staff and his bedtime routine. They have heard some of his language and they are planning activities that he might like to do in the future.

The only issue remaining has been showering as Joshua is not keen to get into the shower, though he is fine once he is in there. His downstairs bedroom has an en suite  wet room. Joshua prefers a bath, but the only bath is upstairs and is the en suite to a young lady’s room so it is not really accessible to him. This is not a new aversion, his children’s respite often struggled to shower him and if he objected enough, they would not insist. I would never offer him a shower at home, as I do not feel safe with a tussle to get him in there. They plan to try ‘desensitisation’, whereby the shower will be on whenever he goes into the wet room so that it becomes more familiar and hopefully less intimidating, and he will be encouraged just to put his hands under the spray of water at first, so we will see how that goes. He has two weekends booked in this month, so some progress will hopefully be made.

Joshua is now funded wholly by Health and so we have lost our current Adult Social Worker to be replaced by one who works for Health rather than Social Care. So this was our last meeting with her. She has certainly been an effective and caring social worker for our family, although Joshua never really acknowledged her when she visited him at school or at respite. But she spent a lot of time last summer getting to know us as a family and understanding both mine and my husband’s perspectives, as they are very different, and she took both of them into account when writing reports and seeking funding. She was proactive too, chasing me to look around respite alternatives and even yesterday, she was nagging me to review his daycare options in the near future too. This is the approach that we need, as otherwise time flies away from us just dealing with the day to day, she has always had her eye firmly fixed on the future, whereas I prefer the comfort and familiarity of the past and the present. So my husband shook her hand as we left, thanking her, and I gave her a hug. Nothing stays the same in life, time to move on but she has left us in a better state than she found us 18 months ago, and for that I am thankful.

A Tough Act to Follow

We first met the Children’s Epilepsy Nurse when Joshua was 4 years old, when his seizures became too difficult and we had to begin our journey with medication. I can recall her coming round to our house to meet all three of us and we heard how many thousands of children she had on her casebook. It felt good to have someone experienced on our side as we had no idea how to cope with his epilepsy. She sat in some of our appointments with our neurology consultant, she trained school staff on how to administer his emergency medication and she was always at the end of a telephone when we were in crisis. She saw us in school clinics and she even visited us in A&E once , then on the ward when he was admitted and she supported us after Joshua’s brain surgery too. She supported us at the tribunal in 2011 to change special schools to his current one, which had the real advantage of a school nurse. The Children’s Epilepsy Nurse has been a constant in our journey with epilepsy for the last 14 years. She never sugar coated things, she understood how awful Joshua would be feeling , not only after seizures but she would often tell school staff at his Annual Review meetings how exhausting Joshua would find just moving around and functioning on a day to day basis.

This week, she came to our home one more time, to hand us over to the Adult Epilepsy Nurse. We had a lovely chat, like old friends, before Joshua arrived home from school and then she met the tall slim young man that her patient had become. Joshua stayed briefly in the room while I removed his helmet and boots and gave him his medication, then he relaxed on his own in his den , while we continued to talk about him. The new nurse seemed very pleasant and she too will be on the end of a telephone, when we are in crisis – it was explained that I only ever call up in crisis, as I had been managing Joshua’s seizures for so long, that I would have tried everything in my power before reaching for the phone. She will receive the large paper file on Joshua’s history this week, as I cannot even remember the names of all of the anti epileptic drugs that we have tried over the years: there was the terrifying one that turned Joshua into a cross monster, the one that was so potent that he had to go for weekly blood tests and the one that gave him a thrilling honeymoon period of no seizures for a fortnight, then they came crashing back, for example. None of their side effects make good reading, so much so that at times we have not been sure if it was the seizures or his drugs that made him so sleepy or impacted on his appetite or behaviour.

So now we begin on the next leg of his journey, saying goodbye to a familiar, friendly face. We are all, as a family, very grateful for all that she has done for us over the last 14 years, as she has been by our sides through some of the most terrifying moments. and was always kind, supportive and a good listener. If the adult equivalent is able to offer us the same service and commitment, we will be in a very strong place, but she needs to know that she has some very big shoes to fill.