Wonder Woman

This is Mental Health Awareness Week – a nominated week when we are encouraged to both think and talk about our mental health. I am very aware of my own mental health as I tend to be one of two extremes : I am either happy and full of energy, as I am at the moment – thankfully – or I am depressed, lacking in energy and self confidence. I do not vary much from day to day, but I will have at least a year in one state and then that is followed by a similar period in the opposite phase, making me rather like Jekyll and Hyde. People who know me well will be anxious about my mental health as things are hectic at the moment, with work, home and Mum being in hospital and now receiving treatment. I keep being warned to take care of myself or not to overdo things and I was also told that I was doing too much.

I know that these comments are well-intentioned and I know that they are simply worried that I might trip over into the next phase of my mental state. But in many ways, I am fortunate that this busy time has fallen when I have the energy to respond to the challenges that I am facing and when I am able to multi-task, as that is another of my abilities that I lose when I am low.

I know myself well know, after years of dealing with these highs and lows, and I am resigned to riding the roller-coaster and of making the most of each phase. I try to protect my mental health by talking about it and by resting when I need to. I have learnt over the years that I cannot control the change of my mental state;  so logically it  would make sense for my brain to react when it is under pressure, as it is now, when there is so much on my mind. But it does not seem to work that way, in fact it will probably survive these assaults, then something insignificant might just tip me into a new darker phase.  I am not waiting for it to happen, I am always hopeful that I have put my depression behind me once and for all, by changes that I have made in my life, but if it does come ,I know that it will not last forever and I know how to deal with it.

But in the meantime, I am grateful for the extra energy, confidence and clear thinking that come with my feeling good, as they are all proving to be really helpful at the moment. Who knows what is around the corner, but for now, I am making the most of my super powers.

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Supermarket Sweep

Last Sunday I had missed my supermarket -shopping companion when Joshua was in respite but today, to make up for that, I took him to Tesco twice! The first time we had gone along with our shopping list as usual and as it was a sunny day, I had dressed him in his new cargo shorts from Tesco and I had admired how smart he looked in them. It is only when I followed him to the car, that I saw that they still had the security tag on the waist band! So on the way into the store, we had queued at the Customer Service desk to prove that we had bought, rather than stolen, them and to ask them to remove it for us. Sadly there was a queue and Joshua was eager to begin his trolley shop, so it made him frustrated in the queue and he began to kick my shins to move me on. When we finally got to the desk,  the staff explained that the tag could not be removed unless he was not wearing the shorts so I would need to bring them back another time. So now I was frustrated too as I had wasted our time.

Joshua did not really recover from that false start and he was hard work to control around the shop – kicking me and the trolley, running away, touching fellow shoppers and then lying down on the floor of the cereal aisle – he felt pretty sheepish after that, and jumped up quickly. He sat on the seating provided at the end of the till while I packed and paid for the two bags of shopping and helped me to push the trolley back to the car. A till supervisor let me know that Joshua had a security tag on his shorts and that he would set the alarm off. I was shattered by the time I got home to unpack the shopping and began to make lunch.

I decided to go back to Tesco, close to closing time, so that they might remember us and the shorts, which they did immediately and they removed the security tag, quickly. We had a couple more things to buy, so we whizzed around the store in top speed and Joshua sat beautifully while I paid. This time he had not had enough and so as we moved to leave, he sat on another bench and waved at customers as they left the shop. He mostly got a wave back and that made him happy and we were almost the last customers to leave the shop at 4 pm.

As a reward for better behaviour, on the way home, we took the dogs in the park for a run around. I  let Joshua choose which direction to walk in, he was in charge , as so often he is dragged around, but yesterday it did not matter that we walked in circles.  He loved running freely and throwing sticks for the dogs, then we headed home. My Tesco visit last weekend might have been more leisurely, but it was not as much fun either – apart from the shin kicks – and having my shopping mate with me, is the norm, thankfully, not the other way around.

Seaside Saturday

Joshua had a full day, from 10 am until 7 pm, at his adult respite provision yesterday and once again it went very well. Joshua was happy when we pulled into their drive and he ran towards the door and headed straight into the lounge. There was a young lady there who he has shared children’s respite with him before, and he sat on the settee next to her and there seemed to be some recognition between them. He waved me off, as they explained the plan for his day was to go out to a nearby seaside resort and that the trip would include a visit to Donald’s! The sun was shining and the sky was blue, so it could not be better weather for a trip to the seaside, so I left them with a big smile on my face.

My husband and I enjoyed some brunch when I got back and then we cut the grass, before heading out to our nearest market town for lunch and shopping. There was just time for  a siesta before I set off to collect Joshua again. He was very relaxed when I arrived and gave me a giant bear hug, while I heard all about his day and about how much more they had learnt about his tastes and preferences. The staff agreed with me about how well Joshua has settled in already and at how he has adjusted to the new surroundings and staff, taking everything in his stride.

Next weekend is the big jump to an overnight stay – he will arrive at Saturday lunchtime and will be picked up again on Sunday lunchtime. So ,having got to know the staff and building, he will use his allocated bedroom for the first time, which feels like the last hurdle to jump as he ate a meal with them yesterday, which he had been resisting up until then. Assuming that goes well, in June he will stay for two nights. It is good to have been able to control the pace of his transition so that there has not been big gaps between his visits, so that we can keep up the momentum. We have been able to shape the speed at which he has become absorbed into this new provision and all of my requests have been accommodated so far. When he first started at his previous children’s respite provision,  we were restricted to monthly visits and so it was several months before we progressed to an overnight stay, whereas, this has only taken since the Easter holidays to reach this point. Assuming that single night goes smoothly, next month he will go from school on Friday night until I collect him on Sunday evening and then finally after that , we will achieve his ‘normal’ three night weekend, going from and to school.

I was upset last weekend when Joshua had to say his goodbyes at his familiar children’s respite, but how much sadder would I have felt if he had no adult provision to  slide into, or if he was not settling in as well as he already was. We are in a good place as far as short breaks are concerned and I love the  fact that it is just a 15 minute drive away, down country lanes, too, which makes these short visits feasible.

Once again Joshua, you have demonstrated how adaptable  and resilient you are and by taking it all in your stride, you make it so much easier for me to adjust too. Joshua’s laid back, sociable personality has stood him in good stead once again and it also helps me to realise that he will relish the move to daycare, from school in a year’s time, too as it will give him some new people to meet, win over and flirt with.

Diagnosis Debate

My Mum has been in hospital for over four weeks now; she has been really unwell and they have been treating the symptoms of an unknown condition for a month now. But this week we finally got a name for her disease, a diagnosis. They performed another biopsy yesterday to identify what strain of the disease she has, so that they can pin down what treatment will be best for her, so finally we feel as though we are on the right tracks, that after so long in the dark, she can be helped to get better.

I am sure that I have mentioned before that Joshua was diagnosed with ‘devastating brain damage’ at just four days old, so we have never had to wait for his diagnosis – it has almost been there from the start of his life. So it has been in the background of everything that he has achieved or failed to achieve and once that news is delivered in the blunt way that it was, it can never be forgotten. I am a master of denial, and so as he achieved his milestones of walking and talking, I could almost convince myself that he had defied the odds and that his diagnosis was in error in his pre-school days.

This however is not the case for many of Joshua’s peers at school, several of whom failed to thrive or develop as they should, and then investigations got underway to try to find out the reasons why. Often parents have a battle to convince medical professionals that there is a problem. This must be frustrating, but I also envy them their innocent. ignorant baby days when they thought that they had a perfect, normal baby, as we were deprived of this. They were able to day dream about what their new baby might achieve in life – what job he or she might grow up to have and how they might find a partner and have a family of their own. We have been deprived of a long term view of Joshua’s future : I can recall being shocked in the Special Care Unit as we were reeling from the diagnosis, when my husband quietly said ” He will never be able to drive”. I looked at the skinny baby in an incubator, surrounded in tubes,  and could not envisage him ever leaving SCBU, let alone wanting to drive a car when he was 17. But from the moment that you find out that you are pregnant, your mind begins to speculate and envisage a future for your baby; a life like the one you had perhaps, where he succeeds at school, goes to university,  gets a job, marries his childhood sweetheart and has a baby.

We are where we are and in many ways, Joshua has defied his diagnosis by achieving so much more than was expected of him, and I could not be prouder of him on a daily basis. On balance, a diagnosis represents valuable information as it explains the context of what can be seen but it should not define anyone, as first and foremost, Joshua is who he is, he is  not his diagnosis. I know that parents of children with Downs Syndrome or Autism, often feel that their children are defined by their condition;  but it should be just one piece of information about them, like an eye colour and gender, not the only thing known about them. A diagnosis should be a positive step forward, not a negative label; it should open doors to more support and treatment and we are certainly hoping that will be the case for Mum, as well as Joshua.

United we Stand

I have never seen myself as a protester or a revolutionary, but I was both yesterday, and not only that, but I was encouraging other school parents to do the same. I have written recently about the CCG’s proposal to remove our school nurses by the end of this year, well , yesterday we held our first meeting of school parents to discuss the impact of this change and to discuss the measures that we could take to object.

Twelve of us met in the school meeting room, where I gave my reasons for objecting to the proposal by recalling Joshua’s time at his first special school where, every time he had a seizure, he was either bundled into an ambulance and taken to A&E or school called me to collect him and keep him off for 48 hours after a dose of his rescue medication. Joshua was very rarely at school and I was very rarely at work and it was a very difficult time in our lives to manage. I insisted that it would be a backward step to return to those dark days and the presence of the nursing team was our main motivation for choosing Joshua’s current school. I heard other similar stories from my fellow parents, about children who were rarely in school and about the reassurance that a nurse’s presence brings to our parents.

We agreed how we planned to object on an individual basis , through writing letters of objection to school leadership, to the CCG,  to our health professionals and even to our MPs. But we also talked about collective action as a group of parents, alongside the other special school in the city that is under the same threat. We joked about chaining , or gluing, ourselves to the school gates in protest or picketing the offices of the CCG, but it may come to that, further down the line. We discussed involving local media to draw attention to the cause too. I was delighted that there was no lack of ideas and the energy just needed harnessing and directing into a plan of attack, and we need more parental support as the parent voice will be strong and loud on this topic.

Nobody was able to see any benefit from the proposed change at all, and so at least we were all objecting with a united voice. I was keen for our stories to be personalised: the powers that be should know the names and faces of the children who will be impacted by this move and should hear some of the horror stories, as this sounds like a Board room decision, without any real sense of the nurse’s typical school day and the range of activities that she gets involved in. These are medical decisions and procedures that she has trained for years to be able to perform, these cannot simply be taken on by unqualified teachers and teaching assistants. I would urge the managers who have made this decision to spend just one day in our special school to see how integral the nurse’s role is, how varied the calls on her time are and to see the range of health issues that our children are coping with in order to access their education, which is their right as children.

So we agreed, bring it on…..

Check Up

Joshua visits a special needs dentist every three months these days, since he stopped eating 18 months ago, due to undetected abscesses and tooth decay. He had an appointment there at 8.30 yesterday morning, so we went on the way to school. He was pleased to be there and spent the first few minutes after we arrived, waving at the reception staff cheerily. But then I had to complete some paperwork, he became bored and so he began to kick my shins and then the reception counter, until I gave him a pen and some scrap paper, so that he could join in and fill in forms too.

When the dental nurse called us through, he suddenly became very attached to the chairs in the waiting room and he moved from one to the other, as we tried to persuade him into the surgery. He then had to be persuaded to sit in the big dentists chair, so that the dentist could look inside his mouth. he cooperated for a short while, long enough for her to see that I need to try harder to access the bottom of his teeth, where they meet his gums. I always consider it a success if he will allow his electric toothbrush in his mouth for more than 30 seconds, so I will focus on different areas of his mouth first in the future.

Last July he was sedated so that another dentist could remove troublesome, rotten teeth, add fillings and have a proper look around. She told me that he would be seen again in six months time for another examination and clean, so I have been expecting an appointment through the post since the new year but nothing has arrived as yet. Before we know it, that appointment will be a whole year ago and so I asked his dentist to chase up the referral for us. She agreed to do that, but added that due to the long waiting list for such sedated treatment, realistically, it was never going to be in six months time, 12-18 months was much more likely. Luckily I do not think that Joshua is in tooth -pain at present, but even if he was, this would be the expected delay, which is really not good enough.

We were only in the surgery for 5 minutes, and then we picked up another appointment for 3 months time and headed into school. He was very excited to get to school and he ran into his classroom and sought out his teaching assistant, so I left him in his happy place, clearly not traumatised at all by his visit to the dentist.

 

Sleepyhead

Lately I have developed a new sleep pattern, which involves me being up around 1-2 am for a couple of hours, before I retire back to bed. So I am getting my required 5-6 hours sleep, but there is a gap in between two distinct periods of sleep. This morning for example, I find myself wide awake at 1 am after a deep sleep of 2.5 hours. I do not lie in bed trying to get back to sleep, but I come downstairs and occupy myself : I have a cake baking in the oven as I am writing this blog, and I will head back to bed soon and catch up on the rest of my sleep. But I find a couple of things about this new odd sleeping pattern:

  • It upsets people if they receive an email from me at 2 or 3 am, as they expect me to be asleep at that time and they do not realise that I will go back to sleep. They picture me as an insomniac, which I am not,  as I have no trouble falling into a deep sleep as soon as my head hits my pillow around 10.30 pm. People think that I am awake because I am blogging and emailing in the wee small hours , but I am awake already and I am simply being productive before I go back to sleep.
  • In the past, it was Joshua who would wake me up at 3 am on a regular basis;  I have had 18 years of disturbed sleep, so I have adjusted to function and cope on relatively few hours sleep. But now it is myself waking up, as he has never slept better – he is typically in bed for 9 pm and will stay there, most nights, until 7 or 8 am. In those long nights kept awake by a lively Joshua, I got sympathy for my broken nights, but these days as it is self-inflicted, I am told to turn off devices and go back to sleep.
  • Even though I can manage on 5-6 hours sleep a night, I get a wave of unbelievable tiredness between 3 and 4 pm. At that time, at weekends or on holiday, I would grab a short siesta and feel refreshed;  but when I am at work, it is something to survive,  as if I can stay awake by walking around, making a hot drink or taking in some fresh air, I can overcome it and come out the other side . Once passed 4 pm, I recover, whether I have slept or not.
  • Our weekday bedtime has always been between 11 and 11.30, but now that I am awake early, I struggle to stay awake later than 10.30 and given the opportunity, I will get tucked up in my bed at 10 pm. The other night Joshua came downstairs at 9.45 and so I took him back up to bed and snuggled in with him to encourage him back to sleep. Of course, I never made it downstairs again until 2 am, when I felt fully refreshed and raring to go. The later bedtime gave me a couple of hours in the evening with my husband, without Joshua around, whereas now, we are all going to bed almost together , and waking up, at a similar time.

We all need to find the sleep pattern that works for ourselves, so just because I am not sleeping for 8 straight hours every night, please do not judge or try to fix me.