Electrical Storm

Some days, the threat of seizures hangs around Joshua like a bad smell all day and so you are on edge, just waiting for them to land properly. He came downstairs at 6.30 and he had a series of small seizures after breakfast, but they stopped on their own, without any intervention. They felt like warning seizures,as though they were building up to the main event and so I watched him like a hawk until he left for school. As often happens after seizures, he became loud and giddy, which can be another warning sign. We were both watching out of the kitchen window for the taxi to arrive, as the dogs barking had given us a false alarm while he was getting his boots on. As soon as he saw the taxi, I was gathering his belongings together, when he ran to the door, opened it and ran to the taxi. Normally I lead the way, holding his hand so this was quite an enthusiastic departure for him.

I warned the escort and taxi driver about what had happened already and what he might be building up to. I expected a call from school all day but , thankfully, it never came. I met him after school, as Yorkshire Grandma is on holiday this week, and the news was that he had been ” a monkey ” all day. The diary reported that he had done some dozing in the afternoon, and when he had woken, he had lashed out for no apparent reason. I suspect that his mind was confused with electrical activity. When he got home, he rushed into his den, once his helmet and boots were removed and we had enjoyed a hug, and he curled up on the settee. Joshua clearly still did not feel right and so I allowed him to rest some more before serving up his meal. After around 45 minutes, he came looking for me and his food, unhooking his pinny off the back of the kitchen door, indicating that he was ready now. Sure enough he ate everything that he was offered.

Poor Joshua, I think this black threat of epilepsy had followed him around all day and into the evening and it had still not delivered its blow by bedtime. I took his baby monitor to bed with me but as far as I am aware, no big seizures have yet arrived. Hopefully with a decent night’s sleep, his brain will re-set, giving him more peace today, as that state of red alert, having an electrical storm in your brain, must be exhausting.

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Perfect Afternoon Tea with Friends

I have explained before that I am fortunate enough to have five best friends, all from different stages of my life. I am in regular contact with four of them and I wrote to my high school friend this weekend in an attempt to re-connect, as we have not been in touch for some time. I exchange emails several times a week with the two best friends who now live in America, which I love. Joshua and I are going to the theatre, to see another musical, with best friend number 5 next weekend, so that will be fun and yesterday, we went out for afternoon tea with best friend number 4 and her daughter, who was also 18 this year. I had not seen either of them for some time, although we text each other regularly, so that was a treat. I love how you can be yourself with your best friends, you do not have to be on your best behaviour and they really know you well enough to know what you are thinking. The only disagreement we had yesterday was over who was going to pay for the treat.

We picked them up from their flat and walked to the hotel , where our table was booked. We had taken Joshua’s wheelchair with us but he refused to sit in it and he walked through the city arm in arm with his Dad, as I pushed an empty chair. The table was set out beautifully with mis-matched bone china cups, saucers and teapots. We were brought delicate pastries to start with, then a 3 -tiered cake stand displaying selection of sandwiches on the bottom, then  a scone with jam and cream and finally some mini desserts on the top layer. It both looked and tasted wonderful and we had lots of laughs while enjoying the treat . Joshua ate some egg sandwich and drank his orange juice. He enjoyed being with us and waving at the waitresses but this type of food was not his choice of outing, and unusually he even rejected the cake. So much so that my friend suggested that we detour on the way back to take him to Donalds for his choice of treat. At first I resisted as he had been offered plenty of food options that he had rejected, but of course I relented and so we left the hotel, four of us full to bursting and swearing that we would never eat again, and we all sat and watched him consume chicken and chips, with real gusto! I am beginning to fear that this is the only dining out that Joshua will tolerate these days! Let’s hope that it is just a phase.

It was a lovely afternoon out and we did not need to eat anything more when we got back home. Joshua went upstairs and he kept on handing me his pyjamas once I had removed his boots and splints. So I changed him into his PJs, expecting him to come back downstairs in them, but he climbed into bed, pulled the duvet up around his chin and pointed at his CD player, indicating that he wanted his bedtime audio book. Before 8pm, he was fast asleep ,so that walk across the city must have worn him out, and he stayed there all night. I too went to bed a couple of hours later, with a smile on my face.

 

Weekend Ways

After a busy week dashing around for me and my husband only arrived home from his travels after midnight, we were both ready for a Saturday when we pottered about the house doing chores, but nothing too ambitious. But Joshua had other ideas and he communicated them very effectively. Mid-morning he had had enough at home and he passed me his splint, indicating that he was ready to go out. I told him that we would go to Tesco soon, so he upped his game. He went upstairs and began slamming the landing door really hard, so that I came running, to stop him from making such a noise and prevent him from breaking the door. So I took the hint and put his splints and boots on.

We had an exciting morning out : we delivered some shortbread to a friend and Joshua waved from the car. Then we parked up in town and we walked to the chemist to collect his prescription. They were still preparing it and so he found a broom while we waited, and began to sweep their floor for them; he did such a good job, apart from waving the brush around his head and potentially tripping their customers up, that they offered him a Saturday job of sweeping and greeting customers at the door! Then we went to a cafe for brunch, where we sat in a booth where he ate toast and drank orange juice, while I had a mug of tea, and we watched the world go by. He seemed satisfied by his outing but the real highlight was pushing the trolley around Tesco!, he got excited as we approached the store. He did a bit of kicking of my ankles and the trolley, but nothing excessive and nothing targeted at other customers, thankfully.

When we had got everything on our list, we headed for the tills where a small boy wearing an epilepsy helmet just like Joshua’s was sitting waiting for his parents. Joshua spotted him and gave him a big friendly wave, which made me smile – it was as though he recognised a fellow member of his ‘gang’! He sat  beautifully, cross legged, while I packed up our two bags of groceries and only jumped up when I told him that I was ready, which is rare. When we got home, he was content to sit in den watching a film while I made a stew, as he had been satisfied by his trip out, so he did not demand terribly exciting distractions to make him happy.

But at around 4pm the door slamming began again and again, he brought me his splint. My husband was in the bath, trying to soak away his jetlag, so we took the dogs to the park so that everyone could have a run about and burn off some energy. The park was muddy but the dogs loved it and Joshua enjoyed throwing sticks for them to fetch and chew. We walked right around the perimeter to ensure that he was worn out and on our way back to the car, the wind was blowing full in his face,with some drizzle, and it really made him giggle.

Joshua cannot always get his own way at weekends, as sometimes there are plans or jobs that need to get done, but as we had a fluid day, I was able to listen to him communicating and to respond.

Turning a Negative into a Positive

Yesterday was our Parent First Aid training at school, which came about after Joshua’s seizure in the bath incident in January when we had to call an ambulance. Once we were home from hospital and I began to analyse my response to his accident at home, I was very aware that I had no formal first aid training and so I asked his school to lay it on for other parents like myself. They asked me to make a call to the training company that they use and to find out what they could offer as a half day course, which I did. I reported back to the Assistant Head who is responsible for safeguarding and training at school, and he booked the course all on the same day that I made the request.

I then had to hope that I was not the only parent who recognised their need for First Aid training, and I promoted the opportunity on our parent social media and was overwhelmed by the response that I received, by the level of interest. After February Half term, school sent out a letter offering the training on a first come , first served basis. I was worried that the level of hypothetical interest might dwindle once a real time and day was offered, but I needn’t have worried, as twelve other Mums turned up for the training yesterday afternoon. The trainer began by finding out about our children, our experience of emergencies at home and about the level of first aid knowledge that we had already. I was the only one who had been on a three day First Aid at Work course during the same week, but some had no formal training and others were looking for a refresher on some old training.

The trainer was excellent, she was informative, knowledgeable, but she went at a good pace and encouraged us all to try out the practical techniques of CPR, placing each other in  the recovery position, abdominal thrusts and bandaging. She answered everyone’s questions without making anyone feel silly for asking and she took account of  some of her audience’s blood phobia, fear of their children choking and their reluctance to practice with an audience. We were all shown a defibrillator and how it works which I thought was invaluable, as I had heard that you could not hurt someone by using one but I had not appreciated until this week, how it takes you through the steps and will not shock a patient if it is not necessary or helpful. I , for one, would be less afraid now of reaching for an AED if a situation demanded it.

While there was some duplication with what I had learned earlier in the week, yesterday had more of a child and baby focus, rather than adult colleagues, and she also related her course work to children with special needs, who may be non-verbal or wheelchair-bound too. I found that the three hours went really quickly, due to the balance of listening and practical exercises too. We finished at the end of the school day so that many had to dash off to collect their children and some joked that they wanted a badge or a certificate to prove that they had undertaken this training, as they were pleased with what they had achieved. I have since been thanked by several of the Mums for having the idea and for organising the course. We all, of course, hope never to need these skills, but at least now, if we are faced with an emergency on our own, at home, we will know what to do while we wait for the paramedics to arrive. It is clear that time is of the essence and so we might now be equipped to take some simple steps to make our children, or even a random member of the public, more comfortable or even save their life.

Walk in Our Shoes

Having a child with special needs , puts additional pressure on any family as I have explained many times before. Many marriages do not survive the pressure, as the demands that that child place on its parents increase over time rather than decreasing, as is the case with most children. Everybody knows and understands that babies need 100% care – they require feeding ,changing and dressing but it is the normal expectation that from toddlers, they will start to feed themselves, become toilet trained and start to be able to dress themselves, so that they become less dependent on their parents for care as they develop more independence skills. But in many SEN cases, those self help skills do not develop and Joshua, for example, even at 18 still needs that same care that he needed when he was a baby.

It is expected in a family, that the children will start to contribute more to the household as they get older and that once they reach high school age,  that they will spend less time with their parents as friendships start to take on a bigger role in their lives. They will start to  want to stay out overnight with friends or to go on holiday with them as they move further away from their parental influence and ultimately, they will want to move out of the family home and set up in their own space. But our offspring tend to remain dependent, even as adults, which is why respite is so important; it gives parents time to themselves. to re-charge their batteries and to restore the balance of the family, which is usually skewed towards the needs of the SEN child. But it also gives the child or young adult, time away from his parents, where he can mix with his peers and engage in activities that he might not access within his family. I am certain that the fact that we have had monthly respite weekends ,apart from each other, for ten years now is one of the main factors that has kept our family together as Joshua has grown older, and arguably, more demanding.

Along the way, families have to make many sacrifices when putting the needs of their child first. Those could be relatively small sacrifices,  such as missing out on social events as there is a lack of suitable babysitters or limiting choices of family holiday to resorts or accommodation that suits the needs of the child . But more life-changing sacrifices are also made in the interests of the whole family, such as career moves. My husband and I have not been prevented from having jobs, alongside Joshua,  but we have both turned down career advancing opportunities because they would not have been viable while looking after him at home. In my experience, at least one of us has had to have flexibility at work to be able to attend the numerous daytime meetings and appointments or to be able to respond to the emergency calls from school or nursery to either fetch him home or to meet him at hospital, which has limited the scope for roles that involve a lot of travel.

I heard yesterday of a family whose son is struggling at present : getting ready for school and the journey to school has become overwhelming for him and he is resisting it daily with his Mum and even by calling on assistance from extended family, it is still proving to be a real struggle. She has fought a hard battle everyday before 9 am and often on very little sleep. Her husband, she told me yesterday, has handed in his notice to be able to support his son and wife better, as what they have been coping with on a  daily basis is untenable for any of them. He had no flexibility in his work and so the burden always fell to his wife. I am relieved for her and their son that he has made this decision, but beyond families who know this situation, who would truly understand the strain that working families are under and the choices that have to be made.

Given the number of appointments that have to be juggled and the full time chasing and complaining that has to happen in order to get what is needed, it is rare in my experience to find families where both parents manage to work, certainly full time. I use my Fridays-off for appointments where I can and for chasing calls and emailing. When that is not possible, I am very fortunate that I have some flexibility over my hours to enable me to juggle them to accommodate Joshua’s commitments, but I would have struggled over the last 18 years if I worked Monday to Friday , 9am to 5 pm. I am also permitted to make personal calls during my working day, as often the services that I have to chase, work the same hours as I do. But for those who are not blessed with that flexibility, a life on benefits may be their only choice.

Everybody realises that when they choose to have a baby, they will be making some personal sacrifices in the future. But please spare a thought for the challenging lives that many parents of children with special needs are facing behind the closed doors of their home. Most will not complain about it spontaneously as it is everyday life to them, but as you get to know them better, you begin to learn about the struggles that many are facing on a daily basis. So if they have become bolshy or weepy, or seem to be disorganised , are always late or forgetful, cut them some slack , as they may be dealing with untold horrors at home.

Changed Identity

Joshua never did master toilet training; We began to make some progress when he was four years old and he used the toilet a couple of times, when there was much celebration. At the time, he loved to blow out candles and so that was his reward if he successfully used the toilet. My Mum even sent him a well done card on one occasion, after we called her to share our good news!  Sadly at the same age, epilepsy took hold of him and we had to begin to medicate him as his seizures became much worse, so toileting took  a back seat and has never reappeared on the agenda.

When you are incontinent, you are allocated four nappies/pads per day and sufficient to last you three months are delivered to you at home for free. I had a battle with the Continence service several years ago, when they tried to change Joshua’s continence products to cheaper Tena versions, which were not adequate for him and we had a full year of having to try alternative products, to prove that they leaked or were not absorbent enough, before we were allowed to have our usual brand and range. It was a very frustrating time and involved endless meetings and reviews, before eventually they agreed that we could maintain our more expensive products and these have remained unchallenged since that battle was won. However I did have a call last month, warning me that Joshua had been handed over to Adults and they may wish to review his products in due course.

There is an automated telephone number that you ring to activate your order, armed with a unique ID number, so that we are not wasteful and you cannot activate your order any sooner than they have calculated that you should. Around two weeks ago I realised that my stocks were running low and I tried to place an order but it was not accepted as I was too early. So I have been calling this automated phone line for the last week and it kept telling me that his ID number was not recognised. It was only yesterday that I was able to call in office hours to find out what was going on by speaking to a human being. As I was on hold, I suddenly thought that it would probably be an issue created by his 18th birthday.

When I finally got through, the lady explained that his previous ID number had been ” closed down” and he had been allocated a new adult one, and that was why I could not place an order! I asked if I was just supposed to guess that it had changed and what the new digits might be?? I was livid as I had wasted so much time and I was by yesterday on my last products, yet she told me that delivery would not be made until Monday then asked if that was OK. I explained that it was not OK :  that I only had one more day’s supply and that I had not been given any new ID number to use. I questioned the logic of a new ID number, explaining that Joshua’s needs had not changed even though he had turned 18 and that he had not been allocated a new NHS number on this anniversary . She was unapologetic and stated that Monday was the earliest that delivery could be made and told me that ” this is just the way that things are done in Adults” . She was unmoved when I told her that I would now need to make an online order and that I would have to pay for next day delivery. I placed that order for a pack of his daytime and a pack of his night-time products, with the next day delivery option, and it came to £30, so this would be a massive expense if I was expected to fund them every month.

With that realisation, I  will be grateful now to receive the 3 month delivery next week. But not for the first time, I recognised that the processes around the changeover from Children’s to Adults were poor and I felt that I could do a better job myself.

The Juggler

My husband is working overseas this week, where he is 9 hours ahead of us – so I spoke to him on my way to work, and he was heading to bed and last night, we spoke as I was going to bed, and he was just getting up. I am very grateful for mobile phone technology that enables us to speak, as though he is just down the road, even though he is half way around the world. He will be home again on Friday and so he is not away for long and with the support of Yorkshire Grandma, we have a plan for managing work and Joshua between us this week.

In order to manage work while parenting a young man with special needs, takes both support and a flexible employer in my opinion. If Joshua did not have not have any difficulties, now that he is 18, he would not need anyone at home to greet him from school, to make him his evening meal and to stay with him while his mum took his puppy to Dog Obedience Class. But that is not the world that we live in, even now he is an adult, Joshua is not safe to be left in the house alone at all : he might have a seizure and fall over, he may trip on the stairs, he could leave the house and wander out onto the road. He pulls his own socks off or trousers down and then his own clothing becomes a trip hazard. Joshua would unwittingly touch a hot kettle or hob and burn himself. He has no sense of danger at all and is unable to keep himself safe and as such, cannot be left to his own devices at any time. So even nipping out to the shop, when I have forgotten something, is not an option without taking Joshua too, which he would not appreciate once he is home from school as it is very hard to tempt him back into his boots and into the car in the evening.

Joshua is not able to occupy himself, so although he has DVDs and movies that he likes to watch when he comes home from school, he is reliant on someone else to set them up for him. His attentions span is not what it was for such distractions, so last night when I got  home from work , I found the ipad playing Shrek on the floor in the snug, his Show blaring away in his den and yet he was upstairs with Yorkshire Grandma, lounging on his bed enjoying a Bruce Springsteen DVD! He leapt up to greet me and he then ignored all of his media options as Mum was home!

Normally after Joshua’s taxi has picked him up in the morning, to take him to school, only then do I have my breakfast and I have 20 minutes to myself, before I need to leave for work. But this week, with my First Aid course, I am having to be more organised so that I can leave the house the same time as him in order to get to my course on time. But today is the last day of the course, and my assessment day, so we will have managed this military operation to get out on time for three days. But next week we have a new challenge, as Yorkshire Grandma is on holiday and so I will need to meet him after school, or make alternative plans for the day that I am working away from home. I am not very good at planning ahead, I tend to only work out one week at a time but I am getting better at juggling, while trying to keep as many balls in the air as I can.