Friendships

Joshua is both loving and lovable, but he has not really made real friends in the way that I understand friendship. In both his school and respite settings, he tends to interact more with the staff than with the children and he is very affectionate towards them. Yet he is now more aware of his peers, than he was as a small child, if mainly to admire a pretty girl with long straight hair! That being said, he has often had in his life, a female peer who has taken care of him. This relationship began when he went to a toddler group, and there was a girl there who would look out for him, chub his rosy cheeks and would fetch things for him. She was the first child that he ever spontaneously spoke to  : we entered toddler group after lunch, and I had not wiped his mouth after his spaghetti hoops on toast. He burst into the village hall and ran up to his confidante and said ” Look at my face!” and I wept with joy, it was an amazing moment that I will never forget.

Then at primary school, he also attracted a different, equally petite friend, and the difference in their sizes was dramatic. She would hang out with him at school and she came to our house for tea and one time we even took her to the cinema with us. But that friendship ended when Joshua left mainstream primary school to move to his first special school. There I made friends with several Mums, so Joshua met up with peers outside of school, but he did not attract a protecter there. But he did at his second, and current, special school. Again another pretty girl began to look out for him and she was especially attentive when he had seizures in class and he would thank her with one of his high 5s or a smile. At one stage, I kept hearing that Joshua had a new friend, that they would spend time sitting together at school and they were treated as a pair. However, when I saw them together, I knew that it was a one-sided friendship, that the boy was forever inviting Joshua to give him a high-5, but it was not reciprocated and Joshua would hardly engage with this child. They were both in wheelchairs together at the time, but beyond that, they had nothing more in common. In my experience, the best friendships are balanced, there is no one giver or taker, but it is equal.

Perhaps he has made friends along the way and I should not judge his relationships by my standards. I want to be able to confide in and talk to my friends, but this is not going to be what he is looking for. I enjoy reminiscing and sharing with my friends and buying them surprise gifts,  but this will be beyond Joshua. He is affectionate and generous with his hugs, but more with adult care-givers than with his peers, he must sense that such behaviour might not be welcome there. I hope in his adult life that Joshua will go on to develop friendships so that he has some support outside of his family too. My friendships are so important to me and I do not want him to miss out on the love and support that a best friend can bring to your life.

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We are where we are

20 February is always a memorable date for me, as 20 February 2001 was Joshua’s due date.It was when Doctors and midwives told us that he would arrive and it is when he should have arrived. At the time, mothers were allowed to go two weeks overdue before they were induced, but we had no monitoring of the baby during that time. The date was arranged to be induced, we were to present ourselves at hospital on Sunday 4th March in the evening, if the baby had not already made an appearance, which he did not of his own accord.

So my husband left me in the maternity ward, in a shared room, and he went back home again. Both of us expectant mothers were given a pessary to induce us and almost immediately, I began to feel different and I was sick. I was uncomfortable, could not sit still so I decided to have a bath  and when I got out, I was in pain and was given paracetamol. Even though I knew why I was in hospital, I did not connect my stomach pain with labour as it had all happened so quickly. The nurse called my husband to bring him back and I was taken to the labour ward, much to the irritation of my room-mate.

I don’t have a clear memory of the next part, maybe due to gas and air and possibly due to nature’s self-preservation, but I recall that every time I shut my eyes and opened them again, more medical staff were in the room. There was a sense of urgency to get Joshua out quickly and I was told that I would be prepared for a Cesarean if I could not push him out. That was enough incentive and he was delivered ,but taken away – although my husband says that that they laid him on my chest briefly first, I have no memory of our first cuddle.

When the Doctor came to see us later in the day, he said that the placenta had stopped working at some stage, and that he was a much lighter baby, at 6lbs 3, than he was going to be and that his skin had gone “baggy”. So as I say, Joshua should have been born on 20 February and then his future might have been very different. I am not sure if he had his stroke during that fortnight or during his birth, but I cannot help but feel that it might not have happened at all if he had arrived on his due date.  If that had happened, he would have been 18 today and like his peers, he might have been going to the pub for a pint, going to town dancing or taking his girlfriend away to Bruges. But ‘what ifs’ are not helpful and neither is hindsight, as we are where we are.

Sunrise

I love a sunrise and I’ve seen some glorious ones already this week. Not only do they have a natural beauty but they signify new beginnings. Whatever bad things went the day before , seizures or kicking perhaps, a new day is a new start and brings fresh hope with it .

Stepping Out

I think that I have written before that Joshua uses his feet to communicate a lot and unfortunately has developed a habit of kicking, with his big NHS boots and splints on. He will kick at doors when he is impatient and ready to go out as an expression of ‘come on, lets go’ or sometimes it is to attract attention. Joshua also kicks out at ankles as a protest, not too hard but he is pretty accurate. Yesterday we went out for the day and our first stop was a supermarket to get some provisions. Joshua pushed the trolley with me as he likes to do and occasionally he would let go, when I was distracted by reaching something off a shelf, and he would make a run for it, giggling. I would chase him and bring him back to the trolley. He enjoys this game, making Mum run.

He began to kick the wheels of the trolley as he was pushing it and I told him that he was only hurting his own toes, nothing else. So he escalated, and he took a swipe at my ankles instead, while still pushing the trolley. I objected and passed him onto his Dad who walked arm in arm with him. As we reached the end of an aisle, he kicked out at an elderly lady walking passed. I do not know if he actually made contact, as she did not react, but the intention was certainly there and we both saw it. That is the first time that I have known him to try to injure a stranger in a public place. My husband took him straight to the car – which might well have been what he wanted of course, although he usually enjoys a brief supermarket shop. I continued without them and when I got back to the car, Joshua was certainly subdued, as though he had been told off and understood that he had misbehaved. I gave him only my very disappointed face and we drove to our next destination, with him continually turning around and grinning at me, trying to win his way back into my good books.

I really hope that this kick was just a  one -off, or else we will struggle to take him out to public places as his reactions are so quick and unpredictable. I still do not think that it was malicious, it was part of his attention-seeking game, but the end result was the same and I may be giving the benefit of too much doubt. But did he get the message yesterday that such behaviour would not be tolerated? Or did he learn that if you don’t want to do something, then just kick an old lady and you’ll get taken away?

Only time will tell how he interprets our response but he behaved beautifully for the rest of the day, walking  a long way, pushing his own wheelchair with no hint of kicking out. He made us laugh as he was rushing along the prom, clearly thinking that there was a cafe reward at the end, so he was disappointed when we turned around to walk back the way we had come. He made it very clear what he had in mind as every establishment that looked like a cafe, whether it was closed or not, he tried to get in their door. He was a man on a mission and he was so relieved when we finally reached our destination, where he was happy to sit and to warm up his cold hands, while waiting patiently for his lunch.

 

This is what it feels like…

I would like to give you some insight into what it is like to live with someone with epilepsy, as it might not be a familiar experience to everyone. So, we are on holiday, Joshua has woken up happy and we have pottered about the house until late morning, enjoying a leisurely bath and getting re-acquainted with everything. We go out for a beach walk with the three dogs, and Joshua delights in throwing stones into the sea, then walking along the wet sand, helping me to push his wheelchair. We stop for lunch at a restaurant and its sunny enough to sit outside, with the dogs tied up next to us, and Joshua drinks his orange juice and devours his scampi and chips. The day has been perfect so far and we walk back to the house, where my husband lights a fire to keep us cosy, as we snuggle up together on the settee.

Joshua and I are enjoying a siesta together when suddenly, without any warning, I feel his body tense up next to me. I wake up from my doze with a jolt and he is mid-seizure – his face is contorted and his arms and legs are straight. His socks have come off so I can see every toe bend out of shape. I rub his back and try to reassure him, telling him that he is not alone and that it will all be over soon. His poor body relaxes, just for a moment, then another wave comes and he has gone again – his eyes disappearing upwards in their sockets and his mouth gurgling with a terrible sound. For the next five minutes, he goes and out of these seizures and rather than slowing down, they seem to get shorter but more frequent. Joshua’s face flushes as he gets hotter and  he looks exhausted, in between the seizures, worn out by their violent impact on his body.

These seizures are not going to stop on their own, as they are still coming quickly after five minutes and so my husband fetches his changing bag that contains the rescue medication. I wave the syringe in front of Joshua, warning him of what has to happen next unless he can re-gain some control. But several rapidly follow each other and so, I have no choice but to administer Midazolam. It goes into the jaw cavity , where blood circulation is good. Initially, it would take instant effect, but these days it can be up to another ten minutes before the seizures release their hold on our son.  That wait for effect seems forever as, if it does not work, then it is necessary to call for an ambulance as we are not able to give a second dose, due to the risk that Joshua’s breathing may be compromised ,so he needs to be somewhere with oxygen and with monitors.

Thankfully, after an agonising few minutes, the seizures start to slow down, there are longer gaps between them, and eventually they stop all together. Joshua now looks not flushed, but deathly white, but with dark rings under his eyes, and he is exhausted by the whole episode. He stares around, looking dazed and then he curls up on the settee and he goes into a deep sleep for around an hour. Our happy, lively son has been attacked by epilepsy, once again, and leaves him battered and bruised by the battle. We know that this is not a one off, we know that he will have many more battles just like this one and they can strike at any moment, when you least expect them and often at that least convenient. Most cruelly, they can strike when he is excited, as well as when he is unwell or over-tired. They rob Joshua of his sunny personality and they suspend time while they are happening.

Joshua has suffered from seizures all of his life, but has been on anti-epileptics for 14 years now, so you would think that we were all used to them by now, but each episode is still frightening for all three of us. We know the routine, so onlookers will often comment on how calmly we respond, but believe me, that is all an act for Joshua’s benefit. He needs to know that he is in safe hands and I do not want to pass on my fear to him, so I play it cool, even though inside I feel sick. I too am exhausted once Joshua finally gives into sleep, but I am then on guard for a repeat performance, so I cannot simply resume my siesta – that moment has gone.

All is Well

It is half term school holidays this week and we are lucky enough to be able to go away again! We are very fortunate to have a home from home beside the sea to visit on holidays and its only downside is the long day travelling in the car to get there. But thankfully, Joshua is a great traveller; he used to sleep but now he stays awake for most of the time, looking around, eatingwaving and listening to our music. We stopped half way to let the dogs have a short walk and to grab some lunch and a break. While the woodland walk was a success, we made a mistake of buying lunch at an inpromptu cafe that was a double decker bus, with outside seating. The sunshine had brought many walkers out and so we could not find a table to sit at, just a bench. While my husband and I waited for our hot sandwiches to be cooked, Joshua enjoyed his chocolate muffin and quavers. So when our food arrived, he was ready to leave. so I was juggling an egg roll and a determined escapee, who wanted to get into the nearest car! Needless to say, it was not a relaxing break and we were all glad to get back in the car.

We arrived at the port earlier than the ferry we had booked and were able to catch an earlier ferry, meaning that we arrived before we were even due to set off and in daylight. Joshua knew exactly where he was as we approached and he started to get excited., pointing up ahead and jiggling in his seat. He was not prepared to wait in the car while we emptied the bags, he barged in too and he immediately found his favourite noisy toy that he had left out on his last stay, happy that he was at home again. He watched me make up his bed in his familiar bedroom and when the time came, later, he took me by the hand and lead me up to his bedroom, where he has slept quietly all night long, perhaps dreaming of beach walks and cafes that he will be looking forward to. All is well in the world, we are all together in one of our favourite places to be.

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.