Our Hometown

I heard on the radio twice yesterday, guests talking about being proud of where they lived and so I thought that I would follow that theme this morning. We have lived on the east coast of England for 30 years now, as my husband and I moved here from the North West, after graduating to follow my husband’s new job. The  relative flatness of the landscape was immediately evident, compared to the much hillier countryside that we were used to, but I have learned to love it for two reasons : My parents both commented on how large the sky seems here and I can appreciate now what they saw, and I do love the sunrises that I can see from my back door. Also for cycling and pushing a wheelchair, the lack of steep hills is a big bonus too for someone who is not very fit.

We have now lived in our current home for 24 of the 30 years that we have lived in the East, on the edge of a small seaside town. While we complain about the traffic created by influx of holiday-makers in the summer, who come to stay in their caravans in their droves, it is thanks to this tourist economy that we have the facilities that we can enjoy all year round : we have numerous options for eating out and for takeaways,  we have access to rowing on a lake, a children’s farm as our neighbour and even a rather tired  discount shopping outlet. But perhaps we are most fortunate to live by the sea so coastal walks are on our doorstep. It is not one of those turquoise seas with golden sand, due to the coastal erosion of the clay cliffs, but the dogs don’t mind the muddy-coloured salt water to splash in. or the sticky sand to run on.

Joshua has not known any other home town, or house for that matter, and when he was small, it provided numerous toddler groups for him, then his first nursery then primary school .   Now he travels 30 minutes to his special school, but he loves to visit the cafes in his home town and to walk along the prom and play in the amusements there.  It is a small town so he is  well-known here now and many of the staff at Tesco know him and make him feel very welcome. We enjoy ‘Switch On ‘ night at the end of November when the high street is blocked off for cars and the shops open late, offering festive refreshments and shopping opportunities and my husband loves a  homemade hotpot in the Methodist church.

So we are very fortunate to have settled here, I have worked for the same family firm for almost all of the time that we have lived here. We have been made very welcome and there are lots of advantages to living in such a sleepy seaside town, as it suits all of our family very well,

beach walk

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Life Support

On Friday morning  at school a group of  12 SEN Mums got together to chat and support each other , while drinking coffee or tea and eating cake and savoury treats. We only see each other once a month as a group and so we had a lot of catching up to do. Four Mums reported that they had been having a tough time lately and so we listened and tried to both support and distract them from their worries. Some advice was exchanged and some humour was shared. It is my hope that everyone felt better when they left the coffee morning than when they arrived. We cannot usually solve many problems but it is  often true how the saying goes, that a problem shared is then halved. Our coffee mornings are a safe space where parents know that the others there understand the world of special needs; all of our children are  very different but even so, we have all  had to fight for services and support and we have all felt, at some time or other, the isolation of being an SEN parent.We talked about how often our friends with ‘normal’ children, struggle to understand our situation and how that can create a distance between us. One Mum explained that her son no longer likes to leave the house and so outings and holidays have become impossible for her.

Two in the group are embarking on new qualifications , one at university and another on an online course,  which will improve their understanding of their, and other, Special needs children. We gave our consent to take part in some research for one of these students. I am conscious also that as Joshua embarks on his final year of school, that those Mums with older teenagers are watching us, wanting to learn from our experiences to help to improve their own. We talked about me returning to the coffee morning once Joshua has left school and moved onto daycare, to report how things are ‘outside’, which I will be happy to do of course.

I had a simple text later in the day which made my heart swell , saying ” Thank you for this morning, I really needed that”. That is why I spend my free time baking and why I give up one of my Friday mornings off every month, as I  know that it is appreciated by many and has become essential for a few.

Precious Sleep

For the last 18 years, I have got used to very broken sleep . Joshua never slept through as a baby or child , we were usually up around 3 til 6 am or several times a night. Then the worst time by far was after his surgery in 2014 when after a seizure, Joshua would stay awake for 48 hours , roaming around the house looking like a zombie but unable to relax due to his electrically charged brain. It was very difficult to function on so little sleep- he would catch up on sleep at school once he recovered but that was a weekly occurrence for years.

Then Joshua started a new bedtime medication routine – he would have a new anti epileptic drug at bedtime plus a dose of melatonin to make him feel sleepy. It worked and for the last couple of years. Joshua has slept better than he’s ever done in his life. He is usually asleep around 9 pm and wakes between 7 and 8 am and his 3 am wandering only happen occasionally now.

But after 17 years of getting up in the night, my sleep pattern is distorted. Usually I wake up after 6 hours which is enough for me. I am wide awake and raring to go so I bake around 5 am, blog , write letters and plan. It is a creative two hours in the day when I only have the dogs for company and we often take an early walk. But one consequence of being a busy, early bird is that I am exhausted by 10 pm. I try to stay awake until 10.30 but 11 is a really late night for me!

Last night we were watching TV and it was after 11 before use t to bed. I never struggle to fall asleep, it’s instant. I woke at 3.30 and let the dogs out. I knew I had not had my quota of sleep as my eyes were still tired, so after pottering and reading for 30 minutes, I made myself go back to bed, rather than turning on my laptop. The next thing I knew , it was 8.25 and I’d enjoyed another deep sleep. Sleep is restorative and I think our bodies know how much we need.

Joshua went to bed after 9 but he’s had more than 12 hours sleep as he’s still sleeping now . He needs to catchup at the weekend from his busy school days. Just one more week of term and then he can lie in everyday for a week on holiday. Sleep heals and so he should be well rested when he finally wakes up.

Parent Space

I am back at school this morning again, taking Joshua in with me but I will be there for the parent coffee morning. I was busy last night baking a victoria sponge and a chocolate cake and I have made some cheese straws this morning, and another Mum is bringing some homemade sausage rolls, so there should be something for everyone. I never know who might come and so it is hard to judge how much to bake, but I do know that I have plenty of enthusiastic volunteers , both at school and my office, for any leftovers , so nothing ever goes to waste.

We have a smart new space at school to meet in, I was given a tour of it when I was in school on Wednesday. Joshua’s school has grown considerably since he joined 8 years ago and they moved into a brand new purpose-made building. Back then it was spacious and shiny new, but now 8 years on , the building is bursting at the seams. The number of pupils has grown considerably to many more than the building was designed to hold, so much so that there are now two classes off-site, to be able to offer new starters an appropriate education, when our school really should have turned them away as there was no room.

Our coffee morning has always been held in a meeting room at the far end of the school, overlooking the senior playground. But that has not been ideal as parents have had to be escorted through the school as they arrive and then back to reception if anyone needed to use the toilet facilities. With the expansion in pupil numbers, staff numbers have increased and so there has been more need for administrative staff. Those staff have been squeezed into a range of ad hoc spaces, but there was always a plan to create a space for all of the admin staff to be grouped together in one area of the school. So offices  has been created out of a wasted space under the stairs and a new meeting room has been created behind reception, which should be a lot easier for parent events. We will see how it works out today for our first coffee morning in the new space. My initial observation is that there is no running water or kettle there, and so we will be more reliant on school staff organising flasks of boiling water for us, but I am sure we can work with that. It is still a new, bare room but I was assured that it will be decorated with pupil’s artwork soon and it still needs a blind for some privacy from reception. They are hoping that parents will be able to wait for their children there when they pick them up at the end of the day too, rather than loitering in the corridor.

I am excited to christen the new meeting room with our first coffee morning in there, so I hope that many parents will come to take a look and stay a while to chat and share.

Feedback

I took Joshua into school yesterday as I had the first appointment at Open Morning to see his teacher. He was happy to arrive at school and dashed off towards the entrance, barging past the teaching assistant that was waiting for him, so that he could have a quick kick of the glass doors, which amused him. Without a backward glance, he disappeared upstairs to 6th form showing me that he clearly knows his school routine, even if I had confused him by driving rather than his usual taxi. As my appointment was not until 9.30, I chatted to other parents who were also waiting to see their teachers.

When Joshua’s teacher arrived, all of the set-out tables were full and so we sat on comfy chairs instead. She told me that he had been lively all term and that he was certainly showing his sense of humour and that twinkle in his eye, while he planned his next mischievous move. The focus for his final year is to prepare Joshua as best they can to leave this safe, familiar environment.  I had a list of questions for her, mainly asking for additional experiences for him in his final year of school : I know 6th form have access to a flat where they cook  and eat together and do domestic chores, but Joshua has never been there, so I made that request as I am sure he would enjoy the change of scene. It is accessible, so she could not see why he could not attend. His timetable suggests that he will swim three times a week in the hydrotherapy pool but that has not been happening due to the staffing requirements. I explained how good it was for him and how much he enjoyed the freedom in the warm water, so she said that she would try to give him two swimming opportunities each week in the future.

A group of more able 6th formers are doing the Duke of Edinburgh award scheme and they all went on  a residential last week. I asked if there could be a residential trip for the less able young people. There will be 15 of them leaving  school next summer, Joshua included, and so I asked that they have a trip away together – even if it was just one overnight stay. I have understood that Joshua has missed out on several school trips away where they have been outdoor activities – such as kayaking and rock climbing – as he would not be able to participate. But as an inclusive special school, I feel strongly that all pupils should have these social opportunities, so I hope that they will be able to make that happen in time for Joshua’s departure. That was one of the things that I loved when we had a tour of the school back in 2010, the head teacher had told us all about the residential trips that the children went on and I loved the idea that Joshua could be given such an exciting opportunity.  Yet the reality is that, in 8 years at that school, Joshua has been on one overnight stay in a forest and I would like him to ideally have another opportunity before July.

Joshua is unable to ask for opportunities that he might like to experience and he is probably unaware of the activities that his peers are undertaking; so it is my job to be his eyes, ears and voice and in this life, we do not get if we do not ask, so let’s see what happens next.

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.