Spontaneity – The Spice of Life

Being spontaneous is a useful test for the mind; being able to switch from one plan to another  without too much debate is a skill that I have developed over my years as Joshua’s Mum and now I am a master at it. This skill was tested fully yesterday. My unpredictable day began when the train to London that I had booked for work, was delayed by 46 minutes due to ‘trespassers on the line’, typical when for once in my life I was 15 minutes early for the train. While I had built in some slack to my travel plans, a 46 minute delay would be just too tight so I had to go back to the ticket office and buy another single ticket for the next train. So I returned to the platform and boarded the train that was 20 minutes later than my originally planned one. My connections all worked well and so I arrived at my destination with plenty of time to spare.

So I decided to buy an early lunch as I knew it would be a busy day, and I promptly spilled it down my front so I no longer looked as smart as I did when I had set off. As I was staying overnight, I changed in the toilets to my other outfit and nobody was any the wiser. I arrived at the research studio, where my client had just arrived too and it was necessary to set up the room as to how we wanted it. During the course of the day I ran three focus group discussions, which I enjoyed. I had planned to check into my hotel during the break between groups, but my client invited me to join her for lunch and so I felt that I ought to do that. She is Italian and was unsure where to go to eat so I made some choices on our behalf and we had a pleasant chat and meal, before heading back to work.

I finished my final focus group at 8.45 pm and  I checked my phone messages. I knew that our cocker spaniel, Ruby, is expecting puppies around the end of this week, but I had two messages telling me that she was nesting and had changed her breathing pattern, so that things appeared to be moving. I decided that I could not stay so far away in a hotel room, wondering what was happening, and so I collected up my belongings and bought another single ticket home, and arrived home at 1 am, where Yorkshire Grandma was sitting with Ruby. I slept downstairs with her in the camp bed that my husband had set up. I can report that this morning, we still only have three dogs in the family, but watch this space.

Yorkshire Grandma stayed overnight as she was due to have packed Joshua off to school for me this morning, so not only am I flexible in my planning, but I need those who support me to be equally spontaneous and flexible, and fortunately she is! Joshua was delighted to have breakfast this morning with Mum, Dad and Yorkshire Grandma, so now let us see what today brings…..

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Recommended TV Viewing

There are two items that I have watched lately that I would like to recommend that you watch : One is on BBC iPlayer and it is a documentary for Mental Health Awareness week about Nadiya Hussain and her anxiety and the other is a film called ‘Wonder’ that I watched yesterday, on Netflix.

Nadiya came to prominence as the winner of The Great British Bake Off in 2015 and since then, she has carved herself a TV career both as a presenter and as a guest. She is both beautiful and natural but she famously thanked the Bake Off for opening her world, as she had virtually been a recluse prior to that. As she has made several TV programmes, beyond cookery, I presumed that she had overcome her anxiety but this documentary showed how paralysing it still makes her and the measures that she takes to be able to function , with her anxiety. In this documentary she seeks help for the first real time and we see her working with a counsellor and meeting other sufferers. We follow her along her treatment journey and I loved how open she was about her anxiety and how debilitating she finds it. It was not a preachy documentary, she was as natural as I have seen her in other programmes and this time, we also met her husband to learn how it feels to be the spouse of an anxiety sufferer.

I do not suffer with anxiety, but I know several people close to me who do, and this gave me a useful, non-frightening insight into the condition and how it might feel. I saw with my own eyes how the simple suggestion of Nadiya spontaneously going to London by train, affected her and the relief that she felt when nothing bad happened to her, as she reached Trafalgar Square. I always say that Joshua has trained me to be good at spontaneity and that I do not need to plan my life, but I know people who challenged by that and need to know the plan in order to function.

I selected a film called ‘Wonder’ pretty much by accident, as I had never heard of it and I adored it. It follows a young boy with facial disfigurement, due to Treacher Collins syndrome, and his struggles to fit in at high school after being home-schooled by his mother ( Julia Roberts) He is bullied for the way he looks and of course, he gradually wins friends and wins respect. I was however, most moved by his relationship with his big sister who had wished for a baby brother on her 4th birthday and from when August arrived, she was pushed into the background on the family, always taking second place to her brother who had endless surgical procedures and he took all of their parents’ focus. She also struggled at school and felt guilty for pretending to be an only child, but finds her own way to gain attention from her parents, by taking up drama. I laughed and cried during this film, which is the best way for me to judge a good movie, and it was so well acted too. I urge you to watch it if you have not done already.

I am always fascinated by any programmes that take the sibling’s perspective of living in a family with a child with a disability, as it must be such a difficult role to play and it is sadly a role that nobody plays in our family with Joshua.They seem to be incredibly mature, caring individuals but they can seem to be often emotionally damaged by the experience too. I know that many of the staff who work with children/ young people with learning difficulties, often share that they have a sibling or child with a similar issue, which gives them special empathy in their work. I often wish that Joshua had a brother or sister to look out for him, to defend him and to love him, as he would reward that sibling with so much love and adoration.

Breakaway

Respite time should be used for whatever we need at the time : in the past we have taken short breaks away, have been to a spa or have had a rare night out while Joshua is away in someone else’s care. This time, as my cold was at its peak, I needed to rest while Joshua was being looked after elsewhere. I came home after dropping Joshua off and I had a hot bath and then I went to bed and slept for 2 solid hours. I came downstairs in my pyjamas and dressing gown and stayed that way all evening. my husband wanted us to go out for a meal, to make the most of our ‘night off’, but I was already doing that, in my own way and I knew that I needed to stay warm and indoors, so we settled on an Indian takeaway, which I enjoyed very much, as I had hardly eaten all day.

Joshua had watched me packing his overnight bag on Friday night and so he probably expected to be going to his previous respite provision, but he definitely recognises the bag and the packing process. As it was his first overnight stay with the new staff, I packed him so familiar toys that he likes, such as his guitar and iPad, even though they have plenty of toys there. He had to be there for midday, and so we had time for our weekend Tesco shop first, which  went well. As I had half an hour to kill after that, as we had whizzed around the store in record time, I took him to a cafe for some orange juice and cake . He enjoyed both and he waved at all the staff and other customers too while enjoying his treat.

We drove to the respite provision on a new route and so he looked puzzled as to where I was taking him – Joshua watches where we are going knows familiar routes. But when I pulled into their driveway, he grinned and said “oooohh” as if to say ‘oh there we are, that’s OK then’. He got out of the car and happily went indoors, heading straight into the lounge where there was a new young lady curled up on the settee. He went to sit next to her and was curious as she did not respond as he expected. Even though he was only staying overnight, he arrived with two bags of stuff, which I put in his downstairs bedroom. I did not hang around, but said my goodbyes and left them to it.

I managed to wait until 8.45 before phoning to see how they had got on and it sounds as though he had enjoyed a good day,  and he was tucked up in bed already. The only altercation that they had had was when they had tried to give him a shower and he had objected, as I predicted that he would. But other than that, Joshua seems to have had a good time.I will collect him again at midday today and that will be the next milestone under his belt, 24 hours in his new respite provision. For my point of view, it could not have come at a better time, not so that I could enjoy wild all-night parties, but so that I could sleep when I needed to and to try to kick this cold into touch, so that I am fit for a busy week ahead.

Incommunicado

For the last 5 weeks, I have been dashing  around juggling hospital visiting, a busy time at work and our home life. I have been spending all of my days off plus at least another weekday visiting Mum and so it felt very odd to be at home yesterday, on my Friday off. I began sneezing on Tuesday night and that was joined with a sore throat and earache by Thursday, so now I am in the midst of a cold, which means that I feel lousy but more importantly, I have to stay away from Mum, as I cannot risk infecting her while she is so ill. My head knows that is the case but my heart was pulling yesterday, as I had not seen her since Tuesday. We heard that she had felt really unwell on Thursday and so her limited texting, had almost stopped altogether. So yesterday I had to be patient: I had to wait for Mum to reply to my texts or for my sister to arrive as a hospital visitor to report back and in the end both came around the same time and it was with relief that I heard that yesterday was a better day than the one before.

We have been spoiled with technology, as in the old days, pre-mobile phones, you had to ring the ward and they would wheel a telephone to the patient, if you were lucky but more likely, you had to visit to get news of the patient. But we now have email and a whats app group to spread updates throughout the family, which is a much easier way to communicate than to have to telephone everyone after visiting, which is exhausting, time consuming and inconsistent. But Mum was not well enough to update us these past two days and she cannot receive wifi where her bed is in the ward, so that even if she was feeling well enough to send emails, they do not send until she has the benefit of one of our hotspots. I did try calling the ward for an update on Thursday night but nobody answered the telephone and I know from experience, how busy the nurses are on Mum’s ward, so I did not let the phone ring, unanswered, for too long.

I like to know what is happening with my loved ones at all times, so today I will rely on my Aunt who is visiting to update me on Mum later today. I will also be wondering what is happening with Joshua as he has his first overnight stay at his new adult respite service tonight, as he will be staying there from midday today to midday tomorrow. I will call them tonight around 9 pm for an update on how he is doing, but then I will have to leave them to it until I collect him the next day. I will work on the basis of no news is good news there as they have my contact numbers if they have a problem or need me to collect him early. Whereas yesterday with Mum, I felt that no news was bad news when she was not responding to our texts as I imagined that she felt too ill to bother with texting. In both cases, I am going to have to let go and wait patiently to be informed, which is a skill that I need to work on for the future.

Trigger Happy

I think that I might have put a jinx on the sunny , warm weather and blue skies that we have been enjoying lately! This morning it is cold and wet, so Joshua will not be going to school in his shorts as he has been doing all week. Yesterday I sent an email to school to advise them that as heat was a key trigger for Joshua’s seizures, we are entering a difficult period for him. The 6th form at school are housed upstairs and it gets very hot there, with limited ventilation and outside space.

I asked that Joshua is kept as cool as possible by removing his epilepsy helmet and his boots, splints and socks too, when he begins to overheat this summer. I am confident that the risk of seizures is worse than the risk of him falling and hurting his head, as his seizures are less violent than they once were and he tends to be seated for them these days. Joshua rarely wears his helmet at home, only when he looks to be brewing a seizure, so it tends to be a precaution that is typically used at school and at respite. I send Joshua to school in his shorts on sunny days, so that his long, thin, white legs and nobbly knees are on show.

The last time I can recall Joshua overheating badly was at the school prom last July on a really  hot, sticky evening. Joshua was wearing his suit, including a waistcoat, and as he got hotter, he would not allow the staff to remove his jacket. When we arrived, he had a high temperature and so immediately I stripped him of his jacket and waistcoat. I removed his helmet and boots and we took him outside where there was a breeze and I waited with him, while my husband went to buy some Calpol. We sat in the cooler bar together and our droopy son gradually recovered and soon he was dancing the night away and we were the last to leave the party.

On holiday in sunnier climes, Joshua is most likely to be found either in the shade, or more likely, in the comfort of an air conditioned building. He is not a sun worshipper and has pale freckly skin that would burn easily if given the chance too. He will not wear a sunhat either, from being a baby, Joshua would not tolerate anything on his head. He wriggles away from his helmet everyday, and it only stays on because if the secure chin-strap.

So now that we have made these hot weather precautions, that has successfully scared the sun away. But should the sun decide to put in another appearance before September, we are all ready for it!

Sharing & Caring

Part of Mental Health Awareness Week is to get people to think and talk about mental health issues, so that it is no longer a taboo subject. I feel strongly that it is not something that people should suffer in silence or be embarrassed about. The taboo will not go away if sufferers stay at home and do not tell people how they are feeling, so that their friends, family and colleagues can understand their behaviour and possibly help them to feel better. You may feel that it is obvious when you are feeling low, I certainly do, but then you realise that most people are so wrapped up in their own lives and problems, that they have probably not noticed how you are feeling or behaving.

We all see our friends, family and colleagues in a particular way and so they will not be looking for you to act differently. So I always feel that I under perform at work when I am low: I feel indecisive and I lack confidence, but while the change is obvious to me, I am told that I am still performing. It is just that to maintain that level of workload, takes supreme effort and is exhausting, but I still keep the same high standards, so the cost is to me personally, rather than for my employer.

As a sufferer of depression, I feel that I can often recognise the signs in others : the sad, empty eyes , the slow pace of talking, the negativity in the way they are thinking , the inability to make decisions and the lack of enthusiasm for life. I recognise these symptoms, because I have been there myself, many times before. As I understand just how lonely that feels, I try to make an effort to reach out to fellow sufferers and to take time for them. I was aware that within our Coffee Morning at school, they were certainly parents with mental health issues. While I am not qualified to attempt to diagnose or fix anyone, I set up a group there where our parents can come and discuss their mental health with other parents, in a caring, non-judgemental environment. After the first meeting, last Summer, some parents told me that it was refreshing to come to school to talk about themselves, rather than their SEN children and that they felt able to say things that might be awkward amongst other groups, but that they were confident that we would all share and understand their perspective, without judging them as parents. That feedback validated my decision to launch this group as I could see that it fulfilled an unmet need.

I have also been trained to become a Mental Health First Aid Champion at work and so we are raising the profile of mental health in our workplace. It has now become an agenda issue at our weekly team meetings and today I am hoping to extend the meeting by an additional 30 minutes, in order to give us more of a focus than usual. I am aware that not everyone will feel comfortable with this initiative, but hopefully as we start to do it more, it will become easier and more natural and as colleagues in a small business, we will begin to look out for each other more in the future.

Just Be There

I saw a brilliant cartoon yesterday to sum up how I would like friends and family to support me during one of my lows : it showed two cartoon characters and one asks the other if it is OK? The sad looking one says ‘not really’, so the friend asks ‘do you want to talk about it?’ and again gets the same reply , ‘Not really’. So the friend does not push it, does not leave it there, but sits back to back to its friend, just to know someone is there. When you are depressed or anxious, you cannot always talk about how bad you are feeling – I know that I get fed up of hearing the sound of my own voice on occasions, as the negative voice never shuts up in your mind, being asleep is the only respite from that voice. But there can be real comfort in knowing that someone has your back, literally in the case of this cartoon.

Friends have asked me in the past, how can I help you when you are low? That is exactly what I have asked for, just be there, quietly and show me that you care. That might be by dropping me a note or text, that does not require a response, but that simply shows that they are there and that they care. Poor mental health is a very isolating experience and so, while you do not wish to be crowded or put under any additional pressure, it is helpful to not feel alone, even if it is impossible to find the energy, or words, to respond with a text or letter back.

I have written frequently about how isolating it feels to have a child with special needs, then if you add in the isolation of having poor mental health, then many suffering parents struggle to get dressed and get out of their own door, so that becomes a vicious circle. Even when I am depressed, I have been able to force myself to get up, get Joshua off to school and get myself  to work. That has not always been easy, when going back to bed has felt like a much more appealing option, but it has, in the long run, been my salvation. It is exhausting carrying on as normal when you are suffering from poor mental health, as it takes real effort to smile and ‘be normal’ and concentration to be able to  be productive. I am able to function at work when I am low, but I need more time and reassurance from colleagues that I am doing things well enough, as I am so self-critical, full of doubts and indecisive. I have been told that my work does not suffer when I am low, but of course, I do not believe that.

So if you have a friend who is struggling with anxiety or depression, and might be pushing you away by turning down your invitations to meet for a coffee, I would urge you not to give up on them. Perhaps you could try a different approach, send them regular texts just telling them your news or any funny stories to distract them or perhaps, rather than trying to get them to come out with you, maybe turn up on their doorstep with their favourite cake, to either eat with them or potentially leave for them to eat when they are ready. While they may not be able to respond to your extended arm of friendship at the time, they will appreciate it and, in my experience, it will help them along their journey of recovery. If you back away and withdraw from them, then you are simply confirming what they already believe about themselves, which is that they are not worth knowing or being friends with, so be persistent, but be patient too, and in time, your friend will come back to you.