Time Marches On

I have booked today off work as I have a couple of big things to do : Firstly it is the first time that I will meet Joshua’s teacher for a proper discussion about him, his behaviour and his progress as there is an Open Morning at school. I have made a list of my questions that have occurred to me over the last few weeks about his last year at school.We are only allocated a 15 minute slot and I am the first of her class parents, so I must try not to talk too much so that she overruns all morning, but that might be quite a challenge as Joshua is one of my favourite topics to talk about and I like to know all about the times when I am apart from him.

I specifically asked for the first appointment of the day, so that I can then drive over to meet my sister as we are going to see the solicitor this afternoon to sign off Mum’s estate paperwork. It feels as though I have not seen my sister for forever,so much so that I had to check the calendar and it has been almost a month, but it felt much longer. So we have long overdue hugs and face to face catch ups, as they are always better than telephone calls. But after that famine, it is a feast as I will see her again at the weekend for my niece’s birthday party, so that is a bonus. My mobile phone reminded me of her birthday party last year yesterday, as it sent me photos of our smiling mum in my sister’s conservatory. So it will feel strange that she is not there this weekend as she always made the effort to get together for her grandchildren’s birthdays. I imagine that these family parties, with her empty seat, will get easier as time passes, but for now , each one is a milestone and we have Christmas to face yet, when our festive spirit will be seriously challenged.

When a loved one dies, or another traumatic event such as days spent in a special care baby unit, when you emerge out of the other side, it always feels so strange that the rest of the world is carrying on regardless, they have not been impacted by the same blow as you and their life seems to be continuing on normally. That is a shocking revelation at first: But then you realise , especially if you spend a lot of time around hospitals, that families are experiencing bad health news and loss every day of the week and that you are not the only one at all who has felt that isolation at all. In fact it can be a bonding experience, if people share their experiences of grief or there are support groups for families who’s lives have been devastated by a particular diagnosis , prognosis or condition and strength and support can be found there.

But for now, we just do the best that we can everyday ; I try to be kind to people, as we really have no idea of the  worries and concerns that they are facing, and so a smile ,kind word or sweet treat might be just the thing to improve their day and distract them, if only momentarily.

Best Foot Forward

You may recall last summer our chaotic appointment with the podiatrist, when Joshua ran amok  in the health centre waiting room, kicking and reaching for the receptionist’s telephone and generally running me ragged, while we waited for our appointment. Well his next three monthly appointment was yesterday, so I collected him at lunchtime from school and he was delighted to see me and gave me a big hug and a grin when I appeared. We drove to the health centre and the car park was grid locked as the car in front just stopped at the entrance, sitting waiting for a space to come free. I sat behind him for 5 minutes as I watched our appointment approach, then I jumped out to check if there were any disabled spaces free and there were two of them. So I politely asked the obstructive driver if he would move forward so that I could park, which he did to everyone’s relief as his selfish behaviour had created a backlog  onto the main road.

We checked in at reception as we were now exactly on time and Joshua gave the desk a gentle kick. But I lead him to the seating area where he sat down beautifully and crossed his legs, indicating that he was staying rather than roaming. I only needed to occupy him for a short while before the podiatrist called out his name and we walked through to his clinic. I removed Joshua’s boots, splints and socks while we made small talk and then Joshua relaxed into the big therapy chair which was raised up to eye level, so that the podiatrist did not have to bend. Joshua looked so relaxed even as the chair moved up and he happily allowed him to cut his toe nails and file the hard dead skin of his callouses  – that form as his foot deformity means that he walks on the soft side of his right foot rather than his heal and balls of his feet. Joshua looked as though he enjoyed his pedicure and he was certainly in no hurry to climb off the chair. But he did when asked and waved goodbye nicely to the podiatrist, so all in all it was a very successful appointment.

As we got back in the car I said the magic words to make his day, as he had not eaten his packed lunch , so I offered him Donalds as he had been such a good patient. His face lit up and he tapped his heart – but I am still not sure if he was saying that he loved me or the idea of Donalds! He was so excited as we drove into the car park and ran into the restaurant and he did not even complain about the long wait for his meal – he just sat patiently,  looking expectantly towards the kitchen. He ate and drank all but a few chips and waved at everyone, staff and customers alike, so it was a very happy reunion and a fitting reward for his smooth appointment.


Wedding Anniversary

24 years ago today my husband and I got married, so we had an anniversary meal out yesterday while Joshua was still away at respite. It was a beautiful crisp, sunny day back in 1995 which made for some beautiful autumnal wedding photos, thankfully not a  wet and grey day like we have in 2019. I can recall waiting at my parents’ house with my Dad, once the wedding car had taken Mum and my three beautiful bridesmaids – all dressed in my favourite kingfisher colour – down to the church. We were both pacing about so I suggested that we shared a small nip of whiskey to calm our nerves and my Dad firmly told me ” Absolutely not!”

I can recall the whole day being such a happy one; whenever I looked up or turned around, there was someone that I loved waiting to hug or kiss me and to wish us well. I can remember grinning all day long and not wanting the day to end. Our wedding reception took place in a stunning country house hotel, on top of a hill overlooking our home town and surrounded by favourite country walks of ours. We chose a venue with a separate lounge area so that it was possible to retreat from the loud music, as my parents were not fans of dancing or music, they wanted to catch up with family and friends. Our best ‘man’ was my husband’s big sister and we had our sisters and my best fried from university as our bridesmaids. We married on my niece’s second birthday – so Happy Birthday 26th birthday Kathryn – and had two 2 year old nieces running around that day and another on one the way.

On that happy day, all those years ago, we had no idea what our  life together would bring us and of course, Joshua was not even a twinkle then. We had lived together for 5 years before we married, so my mother in law thought that we had got married to start a family immediately, but it was another 6 years before Joshua arrived. What a huge impact he has made on our lives and on our family. I know that he brought joy and love to my parents, but he must have brought some disappointment too, that he was not going to become the grandson that they had envisaged. If they were disappointed in how Joshua turned out, they never once showed or discussed it with me, they were nothing but loving and supportive grandparents until the day they both died. My parents gave me a great example of what a strong and happy marriage can be like and I am sure that they would be pleased as we celebrate our wedding anniversary today.


Time for Myself

Joshua’s respite weekend could not have come at a better time, just two weeks after his last stay and once again we used the time he was away, to do things for us that would not suit Joshua. With my sister in law, we went for a spa day together.  We had the opportunity to swim, to use a sauna and jacuzzi before lunch. It was very relaxing and the timing  was perfect as the jets and the heat, helped my aching right hand-side. We ate lunch in our dressing gowns and then  bubbled away in a jacuzzi again, before enjoying a mud rasul. I was so relaxed after all of that, that I needed to have a lie down to recover.

We left the spa, to  let the dogs out after their boring day home alone , before heading out again for a fish and chip supper followed by a fun night watching a stand up comedian. So we had a full, fun-packed day together, once again doing things that Joshua would not have enjoyed. I called respite during the interval to hear all about his day and he too had had fun, going to the park. but when I called, he was tucked up in his bed. So everyone was happy and we are all very fortunate to have these opportunities.

Ordinarily it would not be our respite weekend at the end of the month, but that will be the start of the October half term holidays, so we brought it forward, as we will be on a family holiday then. We will be heading back where we were in the summer so will see if Joshua remembers the dodgems and basketball that he loved so much in August.  He has spent most October half terms of his life there, so it is a familiar, fun location that he has always loved.  But when we return from that holiday, at the start of November, we are always on the countdown towards Christmas. It is dark when we leave work and the shops and TV are full of festive cheer, so we tend to hurtle towards the end of the year from then on. This first Christmas without Mum is a daunting prospect and so I will be looking for ways to minimise the pain of loss.

But for now, I have a lazy Sunday to look forward to, while Joshua is being taken care of, so I can do whatever I please….

World Mental Health Day

I was so busy worrying about my physical health earlier this week, after my car accident, that I did not mark World Mental Health Day as I usually would. So rather belatedly, I would like to consider how physical health differs from mental health : Since I crashed my car on Wednesday , I have received lots of sympathy , two bouquets and yesterday, my husband looked after me really well – running me a bath, doing the shopping and lighting a fire to keep warm. It is understood that I was in an accident and that I am achy and sore  and people know how to respond, as they can see the damage and they know the reason for the pain and they know I will heal in due course.

But mental health problems are not at all like that : often the cause is unknown, the symptoms are less clear to see unless you know someone really well and there is a less definitive time-frame on recovery. It is possible for the sufferer to cover up some mental health issues and to function, and so it can go undiagnosed and hidden for a long time. While people can relate to physical injuries, they know how to sympathise, most tend to be much less confident in discussing mental health. You would not tell someone with a broken leg to get a grip or to keep their chin up, but somehow these seem to be acceptable responses to mental health sufferers, and both will simply add to the pressure and guilt that is already being felt, so are really unhelpful responses.

You would not try to fix someone with  a broken limb or suffering with cancer, but while some people ignore mental health totally,  others offer advice about what works for them when they are sad. Take it from me, real depression is not just like having a bad day or feeling sad; it is much more debilitating than that and it changes the whole personality, so that a confident, sociable, positive person can be transformed into a solitary, withdrawn person who lacks any self-confidence and is paralysed by negative thoughts. In my experience, there is no quick fix or magic potion that can reverse the balance of the mind, it takes time and a lot of being kind and patient with oneself.

So if you know that someone in your life is struggling with their mental health at the moment, give them your time and consideration and let them know that you are there for them. Send them a funny story or a hug by text, pay them a surprise visit or send them a gift ; just let them know that you care and that you will be by their side, whether they think that they need you or not. Let them know that it is OK not be be OK, that you will love them just the same.

In the wars

At first when I woke up yesterday , I was relieved that I did not hurt more after my car accident but as I started to move around, I realised that I  ached all down my right side and that I could not move very quickly, stairs were proving to be a particular challenge. Getting Joshua dressed ready for school, involves quite a lot of bending and he tends to lean on me quite a lot, but we managed that. But after I had brushed his teeth, he gave me a big hug/squeeze around my neck which made me squeal out, so I learnt to be wary of his hugs sadly.

I decided that I ought to go to the doctor to get checked out, as several people had told me that I should, so I made an appointment for late morning.He had me do several exercises involving my arms and turning my head and concluded that ‘the power is still there but it is painful’ and is likely to be so for another 3 weeks, which was very disappointing. But it seems that I have not done any permanent damage to myself thankfully. I went from the surgery into work, to tell my colleagues all about what had happened and to do some work. But I was not comfortable sitting at my desk and i felt rather sick, so after two hours there, I came home again, had some lunch then went to bed.

Yorkshire Grandma met Joshua from his school taxi so I left her to it, but he seemed to like having us both around. I got waves as he led her off by the hand into his den. But I gave him a bath after she had gone, as he runs the taps as a clue to what he would like and he drains all the hot water away! after he had finished his bath and I had washed his hair, I was standing beside the bath when he began to have a seizure. I quickly saw what was happening and held his arm so that he did not risk going under the water as he did at the start of this year. I also immediately removed the plug to let the water begin to drain away. Once the worst of the seizures had passed, they slowed down so I was able to help him up and out in between fits, then we staggered together to  his bedroom. He had a few more small seizures sitting on his bed so I reached for the emergency medicine, showed it to him and watched and waited. To my relief he had no more and he curled up in his bed, exhausted. I lay next to him for a while just to be sure, but when he began snoring I came downstairs to make my tea, with the monitor turned right up so I could see and hear any movement.

I was halfway through eating, when I heard movement upstairs and when I looked at the monitor he was no longer in bed. So I got upstairs to meet him coming down to see me, his eyes bloodshot from the earlier seizures. He came and sat next to me in the snug while I finished my meal but then the seizures picked up again – he must have known they were coming and did not want to be alone. So this time I did not hesitate, and I administered his emergency medication and took him back upstairs while he could still walk. We lay together on his bed while it gradually took effect and all was calm again. I was so tired that I fell asleep with him, we were both in the wars yesterday so lets hope today is a better day.

Out of Control

I set off for work as usual around 8.45 yesterday, but nothing else was normal about my day after that. Our road is narrow and so when I saw another car approach, I pulled into the verge near our neighbour’s house. They have large rocks on their verge, as do we, to keep cars off their grass. Unfortunately as I pulled in, I was right in front of one of these boulders but as it was just in front of my bonnet, I did not see it and so I drove off again with it underneath my car. I dragged it along the road a short while and then it must have got jammed underneath as it tipped my car up and my car landed in their 8 foot ditch, facing the opposite direction than I was travelling in. The side airbags went off and with the driver’s side facing down in a stream, I had to climb up to get out of the passenger’s side. Fortunately the oncoming car saw everything and he was our neighbour, and he helped me out of the car as he was concerned that it might set on fire.

I was very wobbly and dazed when I got out, unable to comprehend what had happened as I had not been driving at any speed and I have driven down our lane several times a day for the last 24 years without incident. The airbag or seat belt had caught my neck, but otherwise I was uninjured, just very shaken. We discussed what he had seen and took photographs of the road, the boulder and my car, to show the insurance company. I called my husband to tell him I had had an accident and he left work immediately and came home to see me. Once I felt steadier, I walked home, just up the road and rang the office to explain where I was and the insurance company. This was our first Motability car, which we got just 18 months ago, so I called Motability to report my accident and find out how I should go about getting the car out of the ditch, which involved a call to the RAC for recovery services.

When my husband arrived, we walked back down to the car and I re-enacted the accident for him and we rang the neighbour’s doorbell to let them know that my car was in their ditch and that I was OK. While we were around the vehicle, lots of concerned drivers passed, slowed down to take a look and ask if I was OK. Given that I was not driving quickly, the car had a visibly damaged bonnet where it had made impact with the ditch, two wrecked wheels and tyres and there wold be untold damage underneath the car. The recovery men were convinced that it will be written off but we have to wait to hear what the garage think once they have examined it.

Once I was back home, the accident reported to the insurance company, drinking a mug of tea, my imagination began to speculate about how it could have been much worse : I might have been injured and unable to get myself out, the car might have caught fire or I could have had Joshua with me in the passenger seat and he would have been very frightened and we would have struggled to get him out and as I would have been stuck behind him, I would have been unable to help him. But none of these things happened, nobody was hurt – though I felt achy all over – , nobody else was involved and the car will be taken care of. I was on the telephone what seemed like most of the day and my courtesy car will be arriving this morning.

That is certainly not how I envisaged my day going, but I am here still, fighting another day.

The Juggler

It is a difficult balancing act for any working mother, to juggle taking care of children as well as focusing on the demands of a job, whatever the job might be. There is a need to find reliable childcare, that is affordable, and then there are the implications when either the carer or child should fall ill, which could result in last minute changes of arrangements, flexibility or time off work. I always envied those families who had willing grandparents close by who could step into the breach in an emergency, or better still, be part of the regular childcare solution.

However if you add into that difficult mix, having at least one child with special needs, then those demands become magnified : the child might be more susceptible to illness or complications of their condition, such as recovery time from seizures. Additionally they will  potentially have endless appointments to attend during the weekdays and during the day : appointments with doctors, consultants, physiotherapists, podiatrists, orthotics, occupational therapists and social workers. Then they might also be unwell enough to have prolonged hospital stays too. All of this will take its toll on any compassionate leave or holiday entitlement that might be available, and so it might be necessary to take time off without pay, depending upon the employer.

I consider myself to be very fortunate as I have worked for the same family firm for almost thirty years now. I started my current job straight from university and in the 8 years I was there , before Joshua arrived, I worked full time and covered many business miles each year. I took 8 months maternity leave and then I returned to work for three days a week initially, and then it increased to 4 days a week once he went to school. I am lucky as  when travelling I can work unusual hours and I am able to bank that time as lieu time, and then I can use it against time off for Joshua’s appointments and school events, so that it evens itself out. I am also lucky in that our company has always closed down over the festive season, so there is never any issue about being asked to cover during that Christmas school holiday.

So the flexibility that I have at work, enables me to be a working mother who can still attend harvest festival and open mornings and of course I have maintained my Fridays off, which are invaluable for school coffee mornings, daycare visits, appointments when possible and for extended weekends at respite time. But I am well aware that not all SEN parents are as fortunate with their employers or their jobs. I know that many of the parents from school are not in employment any more, they used to work, but it became too difficult to manage alongside the demands of parenting. That situation is not necessarily their choice, but their employer could not offer them the flexibility that they needed to go into work late if necessary or to take time off during the day, so everyone is missing out as these parents have a lot of skills to offer the workplace. It also helps the SEN parent to have another outlook on life, to integrate more with society and to find something that is more predictable than raising a child with special needs. My job enables me to be something other than ” Joshua’s mum”, something that is just for me.

Holiday Countdown

I find that much of the pleasure of treats – like holidays, days out and birthdays – is in the anticipation. We look forward to our weekends away or nights out, before they happen as our imagination plays out what it will be like and how it is going to feel. I am already excited about our half term holiday in less than three weeks time and that will definitely be some of the pleasure of the break away. But Joshua is deprived of that anticipation as he does not really understand the concept of time or the future tense. If I told him that we were going on holiday soon, if he understood at all, he would expect it to happen immediately.I am not even sure how much he reads into signals such as packing suitcases or getting dressed up smart for a family party either, so most things must come as a surprise to him and we are fortunate that he takes most things in his stride.

I try to explain what is happening to him, so that he can share some of my excitement at treats, but I cannot be sure how much he understands. Even when we have gone on holiday and he has seen the packing, I think he only really appreciates what is going on when we get on the ferry – that seems to be when his excitement shows. He has always loved the 40 minute ferry crossing, and I have to admit that it still gives me butterflies too, having made that crossing all of my life. It is as though the words do not really relate, but the ferry is something tangible and immediate and he knows from experience now , what follows on from that crossing.

But in having no concept of the future tense, Joshua is missing out on the fun of anticipation. I know that many children count down until Christmas or their birthday, crossing off the nights that are still left to go but Joshua has never had that feeling of anticipation or impatient excitement. The advent calendar, that I am already starting to see displayed in shops, should give that sense of counting down the days of December until Christmas Day, but Joshua has never really related to that concept.

I am not really sure what else I can try to be able to share the excitement of anticipation with him, as I do get excited about my birthday, holidays and treats. Perhaps I should try to share photographs with him to help him visualise what I mean by the words that I am using, I could share photographs of our summer holiday with him, to remind him of the fun that we enjoyed at the same place that we will be heading to in less than three weeks time; I am already counting the days, and I would love for him to share in my excitement if he could.

World Cerebral Palsy Day

Yesterday was World Cerebral Palsy Day and my social media was flooded with photographs and posts from  SEN parents showing how proud they were about their ‘CP Warriors’ achievements! They mostly showed children overcoming their disability to achieve sporting prowess or to ride a bicycle against the odds. I loved the positivity about  what is the most common childhood physical disability, with 17 million sufferers across the world. Its impact is varied, ranging from weakness in one hand up to a complete lack of voluntary movement and Joshua is somewhere between those extremes, as he is independently mobile but 1 in 4 CP sufferers cannot walk. But he is less fortunate on the other statistics , being one of the 1 in 4 with epilepsy and 1 in 2 have a learning disability.

Joshua has not achieved sporting prowess or mastered the art of cycling, but he has achieved so much, against the odds in his life. Despite what must be a frustrating and exhausting condition, Joshua manages to have a smile on his face most days. Even after excessive seizures and emergency medication last Thursday in school, in recovery he was trying to engage with staff and to be cheeky despite how drained he must have felt. He thrives on the feedback that he gets from  others, whether it is a smile, a high 5 or some other social interaction, but he is looking for that all of the time.

Since the start of the summer, Joshua’s walking has improved incredibly. He now has the stamina to walk much greater distances than he has been able to cover since his surgery 5 years ago and he has chosen to reject the use of his wheelchair and prefers to walk, which is brilliant progress. So yesterday, despite the pouring rain, we all went out to  a Food Festival in a nearby market town. He walked between us , striding out and intent on where he wanted to go. We parked at M&S and  we made the mistake of walking through the store to get to the pedestrianised shopping area. But he halted at the M&S cafe and pulled to go in. Of course we followed his lead and he had an orange juice and a slice of chocolate cake, and he beamed over what he had make happen.

Once he finished that, we managed to get him moving again and headed out into the rain and walked towards the food stalls. We walked along one run of stalls, when Joshua again dragged us indoors, to a pub this time where we decided it might actually be time for lunch. So he got his way again. I am delighted that Joshua recognises what he wants and that he recognises what a pub or cafe look like to be able to achieve his wish. I would prefer him to say the word ‘cafe’ like he used to, when he is asking, rather than simply bending his knees and planting his feet, so that he will not move beyond the entrance, but I have to admit that it is a very effective means of communication.

Joshua has exceeded the predictions that he was given at 4 days old and I am pleased to say that I am confident that he enjoys his life. His life may not be anything like what it should have been if he had not suffered brain damage, but I am happy that he is maxmising his potential and that he has fun while he is doing it, so I am proud of my CP warrior too.