Second Viewing

After school yesterday, we returned to the first Adult respite provision that we  had looked around last summer. We wanted to ask some more questions, see how it was now that it was more established and to introduce the staff to Joshua and observe how they interacted. The manager greeted us at the door and she passed the first test as she looked only at Joshua and welcomed him first. Joshua responded with a smile but he was definitely uncertain, trying to work out where we had brought him and why. He  was suspicious and kept giving my bear hugs while we were talking.

There was only one young lady there over this weekend and so we  said hello to her and her carer, then sat around the dining room table talking with the manager, while Joshua roamed the ground floor. He explored and paced but was not interested in viewing a variety of bedrooms. We discussed how they would handle Joshua’s epilepsy more than anything else. We looked for something to amuse Joshua and he enjoyed playing a keyboard in the lounge. He sat next to the carer and stroked her long hair for a while and then he curled up in an armchair for a nap – he is usually worn out by the time Friday comes around. We talked about the next steps if this was to be our choice of Adult respite and how transition would be handled. While it does not have the established buzz of his current children’s provision, maybe no Adult place is as lively as that. This certainly felt more like a home than an institution, which I liked, but in reality it is the staff that make somewhere fun and warm, not the building.

We woke the dozing Joshua and promised him Donalds for tea to get him moving, so we said our goodbyes and left with plenty of food for thought. As ever sleepy Joshua passed the Donalds test, he got excited at his favourite fast food restaurant and he ate all of his chicken strips and chips and drank a full orange juice , before we headed home. I made a note to tell whichever adult provision he ends up at, that a trip to Donald’s would make any stay complete.

Home alone

For the first time that I can remember for years, I am home alone, with only the dogs for company. Joshua is still at respite until later today and my husband has set off on an overseas business trip, just for the week. So last night I was able to please myself and so I had a long, lazy bath as soon as my husband set off, then I had something to eat and settled down to watch ‘Call the Midwife’. Once I had enjoyed my weekly weep at the drama, I called to see how Joshua had been. I always call around 9pm so that I can speak to the afternoon staff who have worked with him and so that he will be tucked up in bed – in theory.

I could hear him awake in the background of my call saying ‘I like you!’ and as he was still up, they tried putting him on the phone to talk to me, but as ever he did not speak but held the receiver to his hear to listen . When they wrestled the telephone back from him, I heard how he had taken himself to bed around 8pm but had recently reappeared and he did not sound in the least bit tired to me.He had enjoyed a good day and he too had gone to the seaside, where we were the day before, and he had run on the beach then eaten sausage and chips. There were a few incidents of ankle-kicking, but a much better day in terms of behaviour, and they were combined with stories of a bear hug and gently patting his short keyworker on the head, with affection.

So I was able to report better news to my husband and then to enjoy an early night and sweet dreams. Hearing Joshua’s happy voice on the telephone, made me miss him more and I am really looking forward to him breaking my peace when he gets home from school, tonight. One night home alone is plenty , thank you very much.

Playing away

Joshua is not at home and I slept last night for almost 7 hours, which is pretty rare these days.I waved him off yesterday morning, with his overnight bag, and I told him that I will see him on Monday. I am pretty sure that he will not understand what that means but his respite stays are usually three nights long, so I am hoping that once he arrived there, he will settle into the weekend routine. I called last night and he was happy , but had grabbed a few naps and had rejected the meal that they had prepared and chose instead to eat 6 fish fingers and a slice of chocolate cake,  which doesn’t sound very balanced but it does sound delicious.

He had also shown some “cheeky” behaviour, which had involved trying to lift the female staff’s tops up! I had had to ask what ‘cheeky’ meant and it was an interesting choice of word. She told me that she was being diplomatic, but I replied that he was not being cheeky, rather he was inappropriate. They had started by trying to ignore him , as we had agreed, but he thought it was a game so was spoken to firmly about it.

This behaviour makes me sad : I want the staff there to like him, to want to be with him, and if he is behaving inappropriately then there is a risk that they will not. When he has smacked my arm, I have pleaded with him not to hurt the people who care for him. I have always been relieved that Joshua is popular and can win hearts with his hugs and twinkly eyed grin. I love that he is known for being cheeky, affectionate and smiley; I would hate for that impression of him to change to someone who has to be ‘managed’ and disciplined. So I am hopeful that last night was a one -off ,  that he was just ‘trying it on’ for his first night away and that today he will settle down. This is his penultimate weekend stay and so I would like this and the next one to go well, without incident, but to just be full of fun.

Fits and starts

Joshua woke up lively yesterday and came downstairs at 6.45, with no apparent side effects from his seizures or his  dose of rescue medication, much to my relief. He was pleased to see me and Yorkshire Grandma and was full of beans, so he had breakfast as usual and I got him dressed for school. Although I sent him off for school, with a note in his diary to explain what had gone on, I still had an uneasy sense of anxiety all day at work that I may be called by school at any moment to hear about more seizure activity. I jumped each time the phone rang and I was never far from my mobile, just in case they needed me to leap in my car.

The worst calls that we have had in the past are when the emergency medication has been given,but when it has not worked and so an ambulance has been called. That is a terrifying call to receive and on several occasions we have had to meet Joshua already at A&E and then, even through his post-seizure, drugged-up state, the relief on his face to see us,his parents among a sea of strangers’ faces, is visible. That must be a bewildering time anyway, coming round from a daze, to find yourself in a hospital bed, would be terrifying. The trouble is that at A&E, the doctors do not know Joshua or his epilepsy, and so they are working blind. In trying to establish if he has recovered sufficiently well to discharge him, the medical staff ask him questions that he could not answer on a good day, let alone post-seizure. In the end, they tend to ask us, as his parents, if he has returned to normal, normal for Joshua that is.

This will be yet another thing that will change after March, he will be classed as an adult and so will no longer go to the relatively pleasant environment of Children’s A&E, he will have to fight his corner with other adults. I was told that once he was 18, there would be no provision to  stay overnight with Joshua in hospital, should he be admitted onto a ward. I will have to fight that battle if it comes to it, but even as an adult, Joshua would need a chaperone , someone with him to be his voice and someone there to keep him safe too. I suspect the nurses would be begging us to stay with him to try to keep him in bed, to reassure him and to take care of his needs. Joshua would not be the first adult with learning disabilities to require a hospital bed, so there must be precedents.

But thankfully, on this occasion, the emergency medication did its job and there was no re occurrence of the night before’s seizures and he has promised me that he will also try to keep them at bay this weekend while he is away, in respite.

Welcome Back

We left our holiday accommodation, all tidy and sparkling, at 11am and we finally arrived home at 6pm, with one ferry crossing and three train changes later. It was a fun journey and the dogs behaved like angels all of the way, mostly curling up under the seats and going to sleep.They took strangers in their stride and were even calm when either of us got up to go and buy coffee from the buffet car. I could not have wished for better behaved pets, particularly given that Kevin is just 5 months old. He was wide-eyed , taking all of the new experiences in and only occasionally would he forget himself, as he let out a little bark, more in fear rather  than bravado.

When we arrived home, Joshua was upstairs in his bedroom getting changed, as we called out that we were back home. He squealed with delight and ran to the top of the stairs, where he grinned , posed on one leg like a flamingo and shouted in a high, excited voice ” I like you!”. We brought him downstairs where he could do himself less harm and he continued to shout for joy.  I received several bear hugs and I heard stories from Yorkshire Grandma and I read in the school diary and his respite diary too, so as to get fully briefed on events. I enjoyed a quick cup of tea and then it was straight upstairs for an early bath. Joshua remained excited and animated all night, he was clearly delighted that we were all reunited back at home.

Joshua has just four more days at school for 2018 and I have just two more days of work. I have booked tomorrow off on leave too, in order to attend Joshua’s school Christmas play. which will be fun I am sure. I am back at school on Friday morning for our final Parent Coffee Morning of 2018 too, on the last day of term so I need to find some baking time before then. This can be a mad, busy time of year which gets bogged down with shopping, wrapping and parties but Joshua reminded us last night that all he wants for Christmas is everyone to be at home together. His Christmas wish will be granted, plus some bonus family appearances from Granny for Christmas and his Aunt, Uncle and cousin, with her boyfriend, on Boxing Day.

So as he counts down the last few days of term in 2018, he can look forward to the year when he turns 18 years old, the year when he becomes adult in the eyes of the law! During next year, many things will change, but not, hopefully, how excited he gets when he sees his parents after a separation of five days, as I do not want that ever to alter.

Me Time

It is well known that carers tend to be bad at taking care of themselves and I am no exception. I often fill my Fridays off work with appointments, telephone chasing for appointments and volunterring at school. But yesterday I planned to be more kind to myself : In the morning , I booked myself in for a pedicure so that I could sit and have my feet taken care of and it always feels luxurious and decadent and seeing my painted toe nails gives me a little thrill when I see them.It takes about an hour and it is a time when I have to sit and be pampered, no multi tasking is possible. I know that not everyone enjoys letting someone touch their feet, but it is a treat for me.

From there I went to school for a meeting and I brought Joshua home, via Donalds so that he could have his treat too. Then it was a quick bath, before getting ready to go out. Yorkshire Grandma came at 6pm to baby sit. Unfortunately Joshua had seizures on the way home from school and so he was curled up on the settee, fast asleep when she arrived and when we left. We joined three other couples for  a Christmas party – a meal and dancing to a live band. Our nights out together are pretty rare and so last night we were defintely treating ourselves. I drove us home so it was not a boozy night out for me, but I had fun, enjoying the chat and dancing. It was after 1am when we got home, which considering I am usually tucked up in bed for 10.30 these days, was a big night out!

Yorkshire Grandma reported that all was well at home when we got back, so I was able to slide into bed and I must have been asleep within seconds of my head hitting the pillow. So I feel as though I am topped up on treats now, so will that enable me to be a better carer today I wonder? I do not underestimate the value of ‘me time’ but to be honest, I feel as though I get that every morning by waking up typically two hours earlier than my boys. I have the luxury of some time to myself before the day begins, to potter about, maybe bake, perhaps go for a swim, to write letters or emails, to watch something that I choose on Netflix , to play with the dogs, to practice some mindfulness and to write my blog. This has become an important part of my day and my routine, and I have to admit to feeling put out if either Joshua or my husband wake up early too and invade my space!



Together again

It seeemed a long time since I had seen Joshua, as I had packed him off to school on Friday morning, with his respite bag, and so I was looking forward to seeing him yesterday afternoon after school. I had a meeting there at 1pm so I had asked if I could travel home with Joshua in his taxi, as my husband dropped me off at school on the way home from our weekend away, so I was car-less. So when Joshua first saw me, waiting in reception for him, he beamed, gave me a hug and pointed at me and he must have assumed that I would be driving him home. So he looked rather startled and confused when I followed him to his taxi and helped him in, in the rain, then climbed in next to him. He kept grinning and pointing alternately at me and the taxi driver, trying to work out what was going on.

However, within two minutes of leaving school, Joshua began to have seizures , sitting next to me. I held his hand and reassured him, as they came one after the other, and his face took on a familiar pale, drawn appearance. They continued for several minutes and I began to reach for the rescue medication, sad that I was going to have to administer it so soon after being reunited. Thankfully, the seizures slowed then stopped on their own and so I cuddled my subdued son for the rest of the 30 minute journey home, while chatting to the taxi driver.

I recalled that he had suffered seizures when I had last seen him on friday morning too, so it occurred to me that I was the common factor here. Could seeing me be just too exciting? As excitement is a familiar trigger for epilepsy, or perhaps he was just so exhuasted from a busy weekend at respite and so finally when he had relaxed, the seizures had crept up on him. It is useless to speculate as we will never know the cause I suspect, so I should just be grateful that they stopped on their own.

Once home again, Joshua whizzed straight upstairs to his bedroom, where he wanted his boots removed and he requested ‘Shrek’ on the ipad, while I prepared his evening meal. He seemed to be delighted to be home again, amongst familar surroundings and with the two people who he loves most. I really hope that he understands why he goes away from us one weekend in four and that the break in routine does him as much good as it does us, as we love it.