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……



Too good to be True

Joshua has always shown that he loves me, by the way that his face lights up when I get home from work or when I appear unexpectedy at school, by the bear hugs that he frequently gives me and by the fact that he follows me around at home, desperately trying to get my attention. That all means so much and I have never had to worry how he feels, even when he was pretty mute or oblivious when I left him with a childminder or at school and he never gave me a second glance, as I have always known how he feels.

But Joshua said something very , very special yesterday morning, as we had finished getting dressed ready for school : He said ” Emma” and I said yes, with a snigger as it makes me giggle when he calls my name rather than saying ‘Mummy’ or ‘Mum’. He replied with ” I like you” and gave me one of his bear hugs. It briefly took my breath away and then I replied ” I like you too”. That he could voice how he was feeling was so special and if I never hear it again, I will always have that simple expression of affection from him. What a way to start my day, I was grinning from ear to ear.

Free Will

As I drove Joshua to Riding for the Disabled last night, the first session since the summer break, I started to think how little opportunity in life he has to choose how he spends his free time. We have entertained him with activities throughout the summer holidays that we think that he will enjoy, but he never gets to choose, that decision is taken on his behalf. His only recourse for action then is to object, or otherwise, when he gets wherever he is taken and certainly there have been plenty of occasions when he votes with his feet.

Yesterday, my husband took Joshua for  a day out to meet up with his sister and Joshua’s two cousins and they met for lunch – which would always meet with his approval and apparently he tucked away a large portion of fish and chips – and then they went to an indoor play area for his cousins to climb and run around. Joshua sat watching with the adults, as he could not access the activities. Joshua has always been a great observer, but who knows what was going through his head : was he sad that he could not play like his cousins? was he happy to watch all the fun and games from the sidelines? was he bored by just watching? The reality is that he did not object, so we have to presume that he was happy enough to be there.

Then he got home and he was happy to curl up on the settee and watch Robbie Williams on his Live8 Show, but instead he was messed about with again as I swapped his shoes and put him into long trousers as he was booked in to go horse riding with RDA. So I persuaded him off the settee, and got him into the car, where he was very sleepy during the 20 minute drive to the stables. This is when I was pondering if I was doing the right thing…..

When we arrived at the stables, he sat in the car waiting for his turn and whenever I opened the passenger door, he closed it again, laughing. It was fairly clear signal of his preference. But Mum knows best, so I helped him out of the car when Digby became free and Joshua walked up the ramp happily enough and mounted the horse. He then enjoyed a half hour session, waving, pointing and flashing his tummy at me each time he walked passed and nobody would suspect his initial reluctance, as he was fully engaged in the activity.

So my dilemma is this, did I do the right thing to overrule him? My concern is that if I allowed Joshua  to choose how to spend his free time, he would be on the settee watching Shrek 2 or Robbie Williams on loop! Instead, he came back to that as soon as he got home from riding. Was horse-riding in his best interests or were we going because I enjoy it and think he should? As Joshua’s parent, I make a lot of decisions for him that other 17 year olds, and younger than that, would make themselves – what to eat, what to wear, what to do…. Now that he is more vocal, perhaps I should consult him more and allow him to make more of his own choices in life, and see what happens. But one thing that he has no choice over is the fact that he goes back to school tomorrow!

“Your Josh”

As I left to pick Joshua up from respite, I was fairly certain that he would be pleased to see me but I underestimated by just how much. When I arrived he was sitting on his own in the conservatory, and  a member of staff said that he had just had to tell him off using his full name, for hiding the landline telephone again! As I came out of the darkness for him, repeating his full name and wiggling my finger at him, he was squinting, trying to see who it was! It was only when I got closer that he recognised me and he leapt off the settee and ran towards me, beaming. He squoze me tight and would not let go for ages, grinning from ear to ear.

He ran down the corridor towards the exit and leapt into the car, I do not think that he had had a bad stay, just that he knew where he would rather have been this weekend. He shut the passenger door behind him leaving me to load his luggage and wheelchair. When we set off, he kept grinning at me, getting his face really close to mine and he said ” Your Josh!” and I agreed, that he was indeed ‘My Josh!’. For the first 45 minutes of the journey home, he was very giddy, talking constantly, high-5ing and eating an apple and a packet of crisps. Then he suddenly drooped and went sleepy, but he had second wind when we were almost home, as he recognised the familiar roads and he began shouting “Back home!” adn got excited again.

When we pulled into the drive, he did not wait for me to shut the gate, but he leapt out of the car and ran into the unlocked house. He scanned the house, going into every room and playing with everything briefly – so at one point he was playing the piano, with Robbie Williams singing in the background, with Shrek on the ipad and the cordless hoover both lying on the floor and surrounded by tennis balls to throw for Ruby. There was absolutely no doubting that he was happy to be home. He devoured his lunch and then wondered about a nap,but was too busy to fit that in.

I love how Joshua shows his affection and his emotion, it would be impossible to miss even by someone who did not know him that well. He has very limited language but he still managed to talk all the way home. There was no hint of a sulking teenager or an epileptic who had recently had emergency medication after a bad cluster of seizures, this  was a happy young man who had all that he wanted in life.



Mother knows Best

I have not felt bad about Joshua having monthly short breaks for a long, long time : I know that we all need that time away from each other in order to refresh our batteries, to top up and to renew ourselves ready for the month ahead – in fact two months in this instance, as we do not have a respite weekend booked in September, instead we are having two in October! This time I have had my doubts that Joshua wanted to be there, given the sad send off that we received on Friday. To make matters worse, he had a cluster of seizures yesterday and he needed his emergency medication.

In my experience, it is when you are ill that you want to be back home and that you need your mum, but Joshua had neither. So I will be pleased to pick him up this morning and to give him both of those things that were missing, when he needed them most. When he has had his rescue medication, he tends to go very drowsy; as I undertsand it, Midazolam is an anaesthetic, so it calms the brain down, which is why his seizures stop, but inevitably it calms the rest of his body down too, so he slows down and often sleeps. When he was a little boy, as his dose has never changed, he would go into a deep sleep for hours and hours, now it is just 30-60 minutes typically, but then he is rather dopey and slow for the rest of the day. It sounds as though Joshua did that yesterday : hour long sleep and then he was alternately lively and cheeky, then he would crash again and need to sleep or just lie down. I was reassured that in his wakeful moments, his sense of humour and his appetite did not desert him!

I know that this only happens fortinghtly, or even monthly, now but it is still devastating each time and it makes me feel so much worse, to know that we were not there. Fortunately, the respite staff are likely extended family to him now, so provided he was with someone familiar, I am sure he will not have been too frightened. The seizure contorts the muscles in his face but it gives him a terrified expression on his face, which is never pleasant to witness as you wonder how he is feeling and is his face reflecting his actual fear. I would love to have one of his seizures  so that I knew precisely what he was going through.

It sounds as though  the respiet staff did exactly the right things yesterday , I know that he was in safe hands. But when you are unwell, there is nobody quite like Mum is there?

Transition Trauma

Joshua will be 18 next spring and so we are beginning the transition process, from child to adult, which already seems to be a minefield, even though we have the much-valued support of his Adult social worker. We have already had difficulties with Joshua’s finances : I could not release some childrens savings bonds that Granny had given him, as they were in his name and so he needed to sign the form to redeem them and to access his cash. I explained that Joshua could not read a form or sign his name and I was told that he should not have received these bonds unless he had capacity to understand the concepts of interest accrual etc. I calmly explained that when my mother gave him his first bond when he was born, nobody knew what his capacity for understanding  might be. In the end, only when I involved a solicitor to ask questions on our behalf, as I was too exasperated, did common sense prevail and the savings were released to Joshua, via my bank account, on the strict understanding  that I only use the funds for his benefit! They are buying him an off-road wheelchair so I am confident that I have not abused his savings by treating myself!

The second time when it became an issue was with respect to his benefits when his Disability Living Allowance became Personal Independence Payment and the DWP insisted on writing to my son…Dear Mr C….. I called them immediately and explained about his mental capacity and told them that I would be acting on his behalf, reading and signing any letters and forms. They accepted my explanation, or so I thought, as the week after Mr C received another letter asking if he was happy for me to become his appointee!! So another phone call to explain that Mr C would not be able to read or sign their form and they apologised… The week after, another letter to Mr C asking that they met with him and his potential appointee to assess my worthiness! Faced with such automated letters and lack of common sense, it is very difficult to hold it together. a young girl from DWP came to school last year, we met in reception, she tried to engage Joshua in conversation and immediately realised hs lack of capacity and asked me to sign a form and then I was made his appointee!

I guess we have to jump through these hoops because of the abuse that some disabled young people have received but what happened to ‘innocent until proved guilty’? In all of his 17.5 years of life, we , as his parents, have never done anything that was not in his best interests, based on the available information at the time. Now up until 18 years old, we have that right as his parents but once he is 18 years old next year, he is an adult and therefore he has the right, not the capacity but the right, to make his own decisions. We have explored, with a solicitor at our own cost, whether we should be applying for Power of Attorney for Joshua but as he does not have mental capacity to sign that power over to us, and never has had, it is not appropriate.

It seems that the next year is going to be challenging, that everything that we have learned up to now about being the parents of a child with special needs now becomes irrelevant as he will become an adult. The law no longer recognises our parental authority, even though he has the cognitive abitity of a toddler, and so I can see some grim battles up ahead where we will be arguing on the side of commons sense and we will be tripped up by the law and the inflexibility of organisations like the Department of Work & Pensions. I come back to a question that I ask most days, is life not hard enough with a son with special needs without this additional obstacles thrown in our way. I have written about feeling as though I am walking along a tightrope before: well, now all sorts of new weapons are being thrown at me as Joshua’s 18th birthday approaches, trying to knock me off balance. What should be an exciting milestone birthday, will be a landmark and the start of a new chapter in our lives as Joshua’s parents. Wish me luck!