Joshua made it to school yesterday, even though he seems to have slept through most of the Halloween festivities, but he managed to smile for his annual school photograph and we are delighted with the result . I have no expectations that they will manage to take a beautiful portrait as it is often hard to get Joshua to look at a camera, let alone capture a smile, so they did a great job this year. Most years he has been unwell of photograph day I recall, starting right back in primary school : he had a bad cold and I had kept him at home I recall. They had called me up and asked me to bring him in, at least in his school sweatshirt, which I did and the end result was much better than I expected, you cannot tell that his nose was running and he had a high temperature as he looks like the picture of health:

First School Photo

Last year, he had seizures on the way into school and so he was really washed out by the time he was called for, and it shows in the photo too. After they had taken it, he dozed in his wheelchair in the coffee morning I recall so that I could keep an eye on him and then I brought him home with me as he was so lifeless. we bought the photograph anyway, even though it is not flattering, as my husband argued ‘who will buy it if we don’t?’.

There were several complaints about the school photographs on parent social media from disappointed parents, which surprised me. It is not easy to capture our children on film at the best of times, let alone when there is a time pressure to complete the whole school in a day. There can be no real time for posing and re-taking but thankfully we now have digital cameras and so I guess they can keep going until they can see that they have a decent picture. That clever technology also means that we are sent the proof to approve and order on the same day as they are taken. They managed to capture Joshua looking at the camera and laughing too, so that is an achievement in my book as I know how hard it can be.

Last School PhotoThese school photographs help to mark the passage of time, to track Joshua from chubby four year old to a tall,slim young man, all in the blink of an eye, and they are treasured records to have, regardless of whether his hair was brushed or his clothes were clean, this is real life, not a model’s photo shoot. Two families I know received devastating news yesterday about their offspring and they may be looking back over school photographs for some comfort and to mark their loved ones’ lives. These are important documents that mark the passage of time and I am so pleased that I made the right decision to send Joshua to school to have his taken yesterday.

Decision Time

This morning is one of those when I have to decide whether to send Joshua to school or not and I am still not sure what to do for the best : Last night he began fitting at the end of his bath, as has become a habit on a Thursday! I let the water out and held his head up out of the  disappearing water, while the seizures began to subside. Our cocker spaniel, Ruby, burst into the bathroom when she heard Joshua’s gutteral noises and she almost leapt into the bath with him. Fortunately as the water emptied, and I was just working out how to help my fitting son out of the bath, his Dad pulled onto the drive, home from work. I shouted at him out of the window to hurry and fetch the emergency medication upstairs with him. We lifted Joshua out between us – I held his feet and my husband had his head and shoulders and we carried him to his bedroom.

He continued to have seizures on his bed, so I administered the Midazolam . Ruby was so tuned into Joshua’s pain, she sat next to him throughout the seizures on his bed, like an attentive nurse. Gradually the seizures subsided, as the anesthetic began to take effect, and Joshua began to drift off into a deep sleep. Ruby and I sat watching him until we were both content that he was settled and the demon epilepsy had left him for another day.

He stayed in bed all night and I had the visual monitor trained on him to observe him. So now I have to decide whether or not to let him sleep it off this morning, or to get him up at 7.45 as usual and send him off to school for the last day of term. There are two reasons for him to go to school : it is the last day before the holidays and 6th form are having a halloween party and also,  it is today when they are taking school photographs. We have had them taken every year that he has been to school and so this final one, would complete the set. I recall that last year, he had been fitting on the way into school so he looked washed out on the photograph, in fact for most of his pictures he has been unwell : I can recall taking him into primary school, out of his sick bed, to have his school photograph taken.

But he may prefer to sleep it off, with a lie in and rest today , and just start his half term holiday a day early. I will need to decide how the day will pan out within the next half hour.

Joshua & Ruby

Tragic News

I read about a heartbreaking news story yesterday: A mother was in court in Ireland for smothering her toddler daughter to death after receiving her diagnosis of autism. The Mother was found to have a mental health issue so claimed diminished responsibility, as apparently she had believed that the diagnosis was worse than ‘mild autism’. So in her confused state, she must have thought that her daughter would be better off dead than autistic, which is a heart-breaking conclusion to reach. The spectrum is so broad, but perhaps that was not explained to her when she received the diagnosis, so perhaps all she could see were problems ahead for her daughter.

Even when Joshua had his diagnosis of ‘devastating brain damage’ at 4 days old, we never once thought that he would be better off dead than living with his disabilities. We have instead ,always fought for him to have the best opportunities in life by, for instance, sending him to a special school where they can meet his needs and even putting him through brain surgery, in the hope of getting rid of the demon epilepsy/ We were of course shocked to learn of Joshua’s brain damage, but we still wanted him to have the best quality of life that he can have. He is such a happy. smiling young man now that I am reassured that he does enjoy a good quality of life and he is starting to assert himself more, insisting on doing what he wants to do and refusing to do what does not appeal to him.

I wonder though if this mother was worried about the impact of the autism diagnosis on her own life too, not just her daughter’s. Perhaps she was afraid of the prospect of a lifetime of caring responsibility and could not face that life for herself. I can understand that fear, as it is a huge life-changing commitment and if she felt unsupported in that by family, friends and professionals, then perhaps that was simply too much to bear for her. I would like to think that health and social care professionals rallied around her to reassure her about the assistance that is available for her and her daughter, as it can feel a very isolating experience; you can feel as though you are the only one with a  baby like this and that can be overwhelming.

I am simply trying to understand what horrors this mother felt to lead her to want to take her own daughter’s life and whether or not there was more that could have been done to help her to come to terms with the news and to equip her with the armour that she was going to need going forward. I am not saying that their life was going to be easy, but she could have been shown a more positive, hopeful future than she was imagining when she picked up that pillow.

 

From the Heart

My friend encouraged me to try my hand at poetry , which is something that I have not done since I was at school. So I had a go and this is the result:

Diagnosis

Your baby has brain damage,

Most of his brain is dead.

He might not see, hear, walk or talk,

Now off you go and take him home.

 

Feeling numb, we could not take the news in.

All our hopes and dreams came crashing down :

This baby will never drive, will never leave home.

This baby will need constant care.

 

This baby will never grow up,

Your teenaged son will need feeding and changing.

Just when you thought that was enough,

He will probably develop fits too.

 

His fits will send him flying across the room,

He will come crashing down onto the floor.

He will be scarred from the impact and

They will take away his voice.

 

Your baby has brain damage,

Most of his brain is dead.

He cannot read or write

Or keep himself safe and clean.

 

But despite all this bad news,

He has a smile that melts hearts

And a twinkle in his eye.

He is full of love and fun.

 

He does not wallow in his pain,

Never feeling sorry for himself.

He lives for the moment and

Makes the most of every day.

 

Still after all his setbacks in life,

He gets knocked down, just gets back up again.

He cannot be beaten as

He has such a strong spirit,

 

Our baby has brain damage,

Most of his brain is dead.

But his heart is big and

His smile is wide.

 

Our baby has brain damage,

Most of his brain is dead.

But with what brainpower he has,

He could teach the world a lesson.

The Difficult Parent

I read and shared an article yesterday about the perceptions of a ‘Difficult Parent’ and it struck a real chord with me , as over the years I have probably earned myself that reputation too. I can recall back in 2010 when I wanted to change Joshua’s special school as, without a school nurse, his first one was simply not equipped to manage his epilepsy when it was at its worst in his life. As they had no nurse,  once he had been given his emergency medication, they wanted him off the premises, either at home or in hospital and he had to stay away for 48 hours after Midazolam too. So Joshua was rarely in school and I was rarely at work, during this really difficult time. We knew that special schools in the neighbouring local authority area all had school nurses, so I visited them all and liked his current school best and we applied to move, The change was rejected as the school was full and so we were forced to go to a tribunal to get Joshua into the right provision. I can recall the epilepsy nurse, who was backing us in our move,  saying with confidence that ‘If Emma wants that school for Joshua, then she will fight until she gets him in there’. She was not wrong, we prepared for months for that tribunal, gathering evidence and medical reports, and we were awarded a place with full one-to-one funding.

Since then I have had to fight for the right continence products for Joshua, finally getting agreement, only when I threatened the Continence Service with sending a story to the press. When Joshua’s respite provision closed for children’s short breaks, we had to fight hard to be able to go out of county to find the right replacement service to suit all of our needs, by refusing to take no for an answer. When it was suggested that brain surgery might offer Joshua the best chance for his epilepsy, we insisted on the best surgeon at the country’s best children’s hospital, as we were not prepared to take any more risks than were necessary and we were prepared to travel to London for that quality healthcare.

I am not a naturally argumentative person and I do not thrive on confrontation, like some people do, but when it comes to our son, I  vehemently fight for what I believe is in his best interests . Where Joshua is concerned, I become like a dog with a bone and I use all my skills of evidence gathering, listening and report writing to argue our case, as though I am on a mission. So I am proud to be considered a ‘difficult parent’ as it means, for me, that I have stood up for my son ; I have not shied away from difficult conversations and have been prepared to involve our MP in my fights and to write to the senior management, when I have thought that it would help our case.

When you next see a ‘difficult parent’, spare a thought for why they are the way that they are and what they are fighting for. You might then see them in a different light and might admire them, rather than regarding them as being awkward and obstinate.

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

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.