Confirmation of Epilepsy

J has been officially diagnosed with epilepsy.
It finally came about quite by chance.

After all the episodes of finding him unconscious, an MRI scan (under a general anaesthetic), visiting a specialist, and recording everything down, I finally caught the very beginning of these episodes, and managed to record it on my phone, which I knew was vital for the specialist to see - as we never saw the beginning of each one, there was a mystery around what was happening.

I had installed a basic baby monitor in his room, and every night I had the parent unit on the highest volume, in the hope I not only would hear when he goes into the unconscious stage (he makes a gurgling, snorting, snoring noise), but to be on alert for anything else.

One late night, at around 1am, I woke with a start, as I heard a noise that sounded like a cry out. I sat bolt upright, grabbed my phone, and raced to his room. I just knew it was urgent and not a false alarm.
There I was greeted with the sight and sound of him having a full blown seizure. 
I have never seen first hand what a seizure looked like, and to say I was shocked would be an understatement. 
I'm very good under pressure however, and my instincts kicked in straight away. 
His arms were up in the air, his whole body was jerking uncontrollably, his head was shaking violently, his eyes were open, but had rolled back into his head, and he was making an awful noise.
This lasted around three minutes.

When he had stopped the fitting, he went into the second phase, the phase I always came upon, and to which had been confusing the specialist and myself as to what was happening. 
This phase can last a very long time (in regards to the 'normal' time frames for this kind of thing.
It was interesting and highly informative to see what was happening, and to finally get it recorded as proof. 

I telephoned the specialist's secretary the next morning, and left a detailed message. I was contacted later that day by the epilepsy nurse who works with the specialist, and she asked me to 'Whatsapp' the video to her (there are some benefits to technology!).
The next day she telephoned again, and said herself and the specialist could see from the footage that the fit was classed as a 'tonic clonic' fit.

An emergency appointment was made to see them, and after going through every episode again (it gets quite easy to reel off each episode I've witnessed, as I've had to repeat it so often), and the confirmation of my latest video, J was given an official diagnosis.

Another word was mentioned, and I'd never heard of it before.
SUDEP
This stands for Sudden Unexplained Death from Epilepsy.

As J's epilepsy only occurs at night, his type of epilepsy seizures are called 'tonic clonic', he takes a long time to recover, and is unconscious for such a long time after the initial seizure, and he has had over 30 of these during the last 6 months, his risk of SUDEP is very high. 

There is a decision being made on what medication to prescribe him, but the side effects from them are a significant risk too, and the specialist is worried about them. One of the drugs suggested can cause extreme weight gain, and as J is really tall and well built (not obese, but stocky), and another can cause mood swings and violent outbursts, which would not be safe or healthy considering his size, and the risk of his younger siblings, it's a difficult choice, but a choice that has to be made.


I have included some links below, which will take you to genuine web pages that explain further about 'tonic clonic' epilepsy and SUDEP.


SUDEP Epilepsy Society
Tonic Clonic Seizures

Epilepsy And Autism?

I said I would write about the 'episodes' that J has been experiencing, so here goes....

On a Sunday evening, back in July 2017, I was sat in the lounge, watching TV. Two of the boys were in bed, and J was wandering around upstairs (it was 9pm, so it wasn't his bedtime).
I heard a *bang* from upstairs, and as J is a fairly loud boy, with big feet, I presumed he had stamped his foot on the floor. I called up "stop banging", and went back to watching the TV. 
Within a minute or two, my ears tuned into a noise that did not 'fit' into the house. Gut instinct? Mother's instinct? It just didn't feel right.
I paused the TV, and listened intently. 
I jumped up after a few seconds, and announced with a panicked voice, "something isn't right!" and made my way to the staircase. I got half way up the stairs, and when I turned my head to the left, which meant I could see straight into the family bathroom, there on the floor was J,  making these horrendous noises (I still feel sick every time I think about those noises).
His head was wedged under the bottom of the radiator, with it digging into his brow. 
He was unconscious and he was making a gravelly, snorting, choking for breath noise. 

999 was called, and the operator could hear the noises J was making, and was asking all the questions about his heartbeat, breathing, any obstructions in his throat, any wounds etc.
A 'Rapid Response' man arrived within minutes, closely followed by a twin ambulance crew, and J was finally 'coming to'. 
We got him onto his bed, and he wanted to sit up. He allowed them to put a monitor on his finger, a blood pressure cuff on his arm, and use a stethoscope on his chest. 
He seemed fine, if not a little dazed. 
The decision was made, after around thirty minutes of them observing him, that it would be better for him to stay at home, as it would be too stressful for him to be in a bright and noisy A&E department for hours and hours. 
I was told to call 999 again if he went downhill or it happened again that night.

I checked on him every hour through the night, but somehow he managed to have another episode between these checks. 
I discovered him with blood caked over his face, and dazed. I had missed the actual episode, and had discovered him after it. He had a nasty wound to the side of his tongue, where he had chewed away at it (he still has dents in that side to this day, as it healed, but not entirely).

I chose to call the NHS helpline number, and ask for their advice as to whether I should take him to hospital, a GP, or call for an ambulance - I didn't want to waste a call to 999, and an ambulance, as I wasn't sure if he fitted the criteria. 
After going through some basic questions with me, the call handler said a doctor or nurse would call me back within an hour. The call back came within five minutes. 
After retelling what had happened the night before, and what I had just discovered, they sent an ambulance out for him, and I was told he would need to go straight to hospital.

As J was still very dazed and lethargic, the actual wait in the A&E department wasn't too stressful for him. He slept on and off, and didn't try to escape, or make any vocal distress noises. 
We were transferred to the children's wing of the hospital, and were lucky enough to see a specialist epilepsy doctor, who worked with children and adults who also have a learning disability. 
As J is so tall, the beds in the children's department were too short for him, and he had to lie curled up in the fetal position, or else have his lower legs dangle off the end!

I retold the story again, about each incident, and described in detail what happened. At no point did J 'jerk' or physically move his body. He was completely unconscious, and struggled to breath. 

When he was in the children's ward, they did an ECG on his heart, and he spent his time taking the probes stuck on to his chest and legs, off. It didn't help that they didn't know how to get the ECG machine to work, so he was getting bored with little square sticky pads peeling up at the sides, and decided to help them fall off completely. With my help, they finally got the machine to work ( amazing what switching it off and on can do!), and I tried to keep Joseph engaged with songs and away from the sticky squares. The ECG was fine.

An appointment was made to see the specialist in his clinic, and we were sent home.

During the next week he had another episode, and I filmed it. 
He was in his bed, it was around 1am, and I filmed what was happening. I did this to prove there was no physical movements and to show the way he was breathing and choking. I wanted to back up my claim that he was not just in a 'deep sleep' and snoring. 
I tickled his feet. I patted his back. I lay right next to him, and held him in the recovery position, and kept his jaw from grinding onto his tongue. If I were to even walk into his room when he's asleep, he stirs. If I managed to make it in there at all, and dared to touch his hair or his feet, he'd rapidly pull the covers over his head, or turn onto his other side. He was not just having a heavy sleep. He was experiencing something that made him lose consciousness, and become dangerously at risk of choking on his own blood or tongue.

The appointment with the specialist went okay. As okay as could be, as there was nothing he could say to reassure me, or confirm any diagnosis. It was a mystery what was happening.
He wanted J to have an EEG to monitor the electrical waves in his brain. 
The problem with an EEG is that the patient must lie very still for up to an hour, with probes stuck to their head. This would not work for J. Also, as the patient must be awake during this time, they cannot use any form of sedative or sleep inducer to keep the patient still. 
This meant that the EEG idea was abandoned.

An MRI scan was suggested, as this could be performed under a general anaesthetic. 
It took 11 months for this to happen. I had to chase it with my GP, as well as the specialist, as I kept on drawing a blank with my enquiries.

During those 11 months, he had many more of these episodes. I would wake to hear that familiar, and scary noise, and grab my phone (to  A) time the episode and record it, and B) to be able to call 999 if needed).
I had to lay with him each time, keeping him in the recovery position, and continually checking his mouth for choking or biting his tongue. I would talk to him, and stroke his hair. I don't know if he's aware or can hear me, and it is frustrating enough for him that he is unable to communicate verbally in his everyday life, so to be in this state, and potentially scared witless by his body behaving this way, I want to make sure he can hear my voice and my reassurances that I am there and he is safe. 

He finally had his MRI, and it was quite a stressful wait for him on the ward prior to the scan. 
We had to wait five hours in a hot and stuffy ward, before he could go down to the scanning room. 
I insisted he have a pre-med which would help him doze more, and the second dose worked within twenty minutes or so. It worked so well that he fell asleep on the ward, and wasn't awake for the actual administration of the general anaesthetic, or the long walk down the corridors to the MRI unit. 
He was wheeled down to the side room next to the scanner, where the anaesthetist began holding the mask over J's face. When he told me he was 'under', he said to give J a kiss goodbye, and it took all my strength not to break down there and then. I managed an arm rub and blew him a kiss, as if I had have reached down to kiss him, I think I would have dissolved. 

I have experienced a child having a G/A before, as W needed an MRI as well, when he was only a few months old, to rule out a brain tumour being the cause of his nystagmus. 
It doesn't get easier the second time. You have this feeling of losing control of being the carer and protector of your child, and couple that with the worry about the small risks of having a G/A and what they will find, you have to try and remain calm within yourself, and occupy your mind with a book or a walk. 

We are awaiting the full results of the MRI. Initial looks by the specialist, at a scheduled appointment recently, didn't show any obvious tumour, however the 126 images need to be looked at in depth by specialists. Our consultant has also referred us to another specialist in another hospital, as he wants a second opinion, and potentially this other specialist may have come across a case just like J's. 

For now, our specialist has said he doesn't believe it to be epilepsy. Despite this, he talked about the drug options available, but each one comes with some quite severe side effects. 
One drug has the high risk potential of making J angry and aggressive. 
Another drug causes insatiable feelings of hunger and wanting to eat non-stop. 
Both of these side effects would be detrimental to the measures I have in place at home. 
I have locks on the 'goodies' draws, and also have a separate fridge and freezer in the garage, which contain the foods J would eat raw. The kitchen fridge-freezer only holds foods which J won't touch.
I also cannot have J becoming violent or aggressive. He is so tall and well built, he would be a danger to myself and to his younger brothers, and it would make excursions out of the house a high risk.
Add to this, the specialist said that these drugs are not 100% in helping, and can take up to two years to start showing their positive effect. 
I cannot do that to J. I cannot medicate him with such high risks and low rewards. 

For now all I can do is monitor J every night. My ears feel like they have a radar in them now. They twitch at the slightest 'odd' sound in the house, and they get confused when one of the dogs snores (this dog has always been a loud snorer, but in his old age it has gotten worse), and I go into a mild, split second panic that it's J. 


I'm hoping that whatever it is, he grows out of it quickly. We've been lucky so far that they only happen when he's at home, but his school (and from September, his College ) is aware of the situation, just in case. 

The Full Moon Effect

I've written before about the full moon, and it's effects it has on J, and I feel it's time to write further about this, as it hasn't abated over the years, and it also affects my other two children as well.

I use a moon phase tracker on my phone app, and it's been really useful in solving the riddle of why my boys are acting up even more than usual. 
Let's be honest, children, no matter what age, are challenging. The challenges change through their childhood, but the full moon exacerbates these, and it can be stressful, noisy, and incredibly hard work.

Arguments, shouting, short tempers, door slamming, stomping up the stairs, selective hearing, demands, winding each other up, even just breathing in the vicinity of one another, are all the joys of raising siblings, and these go into full throttle when the moon is shining her glorious full sphere down on us. 

Something I'm keeping a track of is the full moon and J's 'episodes' of total unconsciousness, which last for up to 45 minutes at a time (they have increased in their duration the last couple of times). I'm interested to see if there is any link between the two. I've read that some people find their epileptic seizures increase at this time, so it's something to keep in mind, and hopefully I may see a clearer reason or pattern to what is happening to him. If you want to know more about these 'episodes', I've written about them here -  A Scary Night - and will endeavour to write a full post over the next few weeks, to explain in depth what has been happening to my Boy for the last year. At the moment they are not being classed as epilepsy, as he doesn't 'fit', but they are affecting him quite badly, and he is under the care of a specialist (the person who has said he doesn't feel these 'episodes' are true epilepsy).


As the words 'lunacy' and 'lunatic' are derived from Luna, the ancient Roman Goddess of the Moon, it seems the full moon and her effects have been noted for a very, very long time. Perhaps ancient Roman parents also had to endure little Maximus and Octavius stamping their feet, arguing over who gets to hold the broken stick, moaning about their supper, and complaining that Argentia has more chicken on her plate than they do. 

Luna, Roman Goddess of the Moon

Whilst the scientific jury disagrees with a lot of the beliefs surrounding the moon and her effects on humans and animals, there are a lot of people who disagree. There have been many studies carried out, and some conclude there are no significantly higher accident rates during this time ( emergency room intake statistics ), whereas other Doctors who work in psychiatric units have noted an increase in erratic behaviours amongst their in-patients at this time.
There have been sleep studies, where volunteers were not told the reason for their participation, and could not see, nor where made aware of a full moon, and their sleep pattern and sleep cycles were assessed before, during and after. One study (Current Biology) noted the participants (during the full moon) took longer to fall asleep, had 30% less NREM (non rapid eye movement - deep sleep), and overall had 20 minutes less sleep.


It is an interesting topic of discussion, and one that will not be conclusively decided for a long time. I am in the 'believers' camp, as I see what it does to my children, and other people around me - even my mood is altered, but that could be put down to having to play referee to warring children, and ensuring that each one has a turn holding the broken metal handle from the garden broom ( yes they really can argue about such absurd things!) 

It is interesting talking to other parents about this, as some see a pattern, and some don't. 
Whatever the truth is, the moon is a fascinating natural satellite for Earth, and humans have been intrigued by her beauty and mystique ever since we first looked up to the night sky. 

The Dentist Visit

The dentist has been something of an anomaly for J. 

During his primary school years, he regularly saw a dentist who specialised in treating patients who had learning difficulties, autism, ADD etcetera. 

Appointments were a stressful time for J, but she persevered, and was happy to attempt to look at his teeth whilst he stood up. She had some very clever tricks to persuade J to open his mouth, and with split second timing, she was able to view into his mouth every few seconds, and check his teeth. 

J has been very lucky with the strength and health of his teeth, despite the struggle to get him to brush them, or have them brushed by myself. 

He doesn't drink juice or cordials, sugary fizzy drinks, or milk. He doesn't eat any kind of sugary sweets, or even fruit (which can have a high natural sugar content) but he happily consumes pints of water a day, and eats a lot of vegetables, so this must have a positive effect on his oral health. 

When J began secondary school, the dentist appointments began to tail off, and were sporadic. There was never a real reason given as to why, but the likelihood was financial - the constant cuts to services for the special needs sector, for both children and adults, has been detrimental to so many. 

There was a gap of around 18 months with J not seeing a dentist (bad I know), but I then decided to take matters into my own hands and that he would be seen by my own dentist. This also meant that if J ever needed to have treatment, my dentist would be in the position to refer J to a specialist who would use a sedating gas to perform any procedures, and it would mean J would be still and calm, and the specialist dentist team would be able to get on and complete the necessary treatment with ease. 

I briefed my dentist about J ; warning him and the dental nurse that J is very tall (his height can intimidate some people, and coupled with his non verbal babbling, can be a shock for them), and would be scared, possibly noisy, and at worst, refuse to even open his mouth. 

J was seen straight away, with no waiting around (as I use a private dentist and not an NHS one - due to having no available NHS ones in my area -waiting times are not as long I have found), and he willingly sat back in the dentist's chair. 

He jolted a little as the chair lowered backwards, but still remained seated. 

The dentist showed him the little mirror tool, and allowed J to hold it and look at his face close up.

Dental Mirror

J followed his request to open his mouth, and even though he did close it and re-open a few times, he kept it open for a good amount of the time, and even allowed the dentist to use the dental explorer (otherwise known as a sickle probe), and feel over his teeth.

Sickle Probe / Dental Explorer

I was amazed at how well J coped with the new environment, new faces, a potentially stressful situation (not many people enjoy a visit to the dentist), and having to do something he doesn't like ( laying back and not being in control, having people touch him on his face, and the frightening feeling of not understanding what may happen). 

The relief of not having him freak out, and have to deal with the fall out, and the feeling of achieving another goal with relative ease, is quite an accomplishment for myself too. 

As this went so well, it bodes well for further dental check ups, that J will be compliant having his teeth checked over, and he'll build up a trust. I'm further relieved about the agreement that he will be referred for any treatment, no matter how minor, and that he'll be sedated, meaning there will be no stress for him or me. 

Another positive step forward

Pupil Of The Year!

On J's last day of school, I found a certificate and gift voucher nestled amongst various wads of school work, accumulated over the last school year, which had been sent home for me to keep. 

His certificate was an award for 'Pupil of the Year'! 

As I congratulated him, with high praise, he looked at his photo on the certificate, and walked off, nonplussed. Whilst he may not be bothered by this accolade, or perhaps he doesn't understand what it means, I was over the moon. 

I am an advocate of boosting people's confidence, skills and values, and want my children to do their best, be their best, and believe in themselves and their abilities. 

If J didn't have his difficulties, and attended a mainstream school, I would hope he would be just as motivated and keen to try his hardest, and work with dedication towards gaining good grades and exam results.

The gift voucher he also received can be spent in a vast range of shops, and I'm certain his choice will be a food shop, where he can browse the chocolate and biscuit aisles, and joyfully fill a basket with his selection of goodies. As he isn't able to convey to me what shop he'd choose, as his cognitive impairment limits this, I am confident in making this choice for him, due to knowing him so well, and being able to judge his likes and dislikes. He is very food motivated, and he will be in glorious confectionery heaven. 

It was a wonderful end to his five years at that school, and I'm so proud that he worked hard, tried his best, and gained this acknowledgement from his teacher, support staff, and the Head Teacher, who chose him from all the other pupils. 

Amazing Things Happen - Alexander Amelines

I've come across a fabulous short animated video, which was created by Alexander Amelines.
It is titled 'Amazing Things Happen', and is very descriptive and informative about what autism is, and how a person with autism thinks and feels.

I highly recommend you watch it, and it may be useful in educating school children, as well as adults who may want to learn more about it. Just being able to empathise with how someone with autism sees the world will be a positive step.

This is the link, which will open a new window, and take you to YouTube - Amazing Things Happen

The Worry Of Them Growing Up

When J was first diagnosed with autism, and I was at the very beginning of this journey, there was very little 'real life' information about. There was the odd leaflet and paragraph in a medical journal, but it was hard to find first hand information from people, as there was no Google, no online forums, no online groups, and as he was so young, he only attended a mainstream nursery, so I didn't get to meet other parents who were in the same boat as myself.

There were no groups to attend for his age, as the only specialist horse riding group was for ages 8 and up, and as he was 3, five years seemed a long wait for any social input. 

The very sparse information I gathered from various sources was always quite daunting and even scaremongering at times. 
I've mentioned before that the first professional we saw, for a very brief meeting, diagnosed autism within 15 minutes, and handed me a leaflet about it. This leaflet was doom and gloom. The author had nothing positive to say. The basis of it centred around what your child with autism won't be able to do or achieve :- 

• No marriage.
• No children. 
• No career. 
• No friends. 
• No social life. 
• No real life.

It was tough reading, and for such a small leaflet, it crammed in as much negativity as it could.

As we moved soon after, our new GP disagreed with the diagnosis, and said 15 minutes was not sufficient time to make such a sweeping statement. 
We ended up attending a weekly session at a centre that had trained staff who interacted and observed J and the other children at this gathering, and over the course of a year, a firm diagnosis was made. 
Yes, it was autism, but this time it was based on extensive observations, and not a rushed, brief chit chat.

During this year, I got to meet other parents, with children who had similar difficulties as J. 
I was new to this, but it was good to share fears and worries with others who were in the same boat. 

One conversation we had was around the worry of when they turn into teenagers and beyond. 
The strength, inappropriate behaviours,and violence they could have. 
It was discussed about teenage boys masturbating in front of family or in social settings, and how to encourage them to keep it to their bedroom. I dreaded the day this happened. 
I shall keep it brief and without too much graphic description, but it is safe to say I have not had anything like this happen. Yes, J does 'pleasure' himself, but it is always in his bed, under his cover, and never in front of his brothers, or myself. He has learnt a natural human act that brings pleasure, and has the understanding (from his own thought, not having been told) that it is a private matter, kept away from others. It may be hard for some to understand what I've written here, and why I am so blase about it, but J has no interest in finding a partner, and will more than likely remain a virgin, so for him to find a normal, human response for physical pleasure is a good thing in my eyes.

I mentioned the conversation above, about violence too, and had prepared myself for his behaviours to escalate into dreadful incidents of me having to try and restrain him, and being too weak against his strength to do so. 
This too has not materialised. Yes he is a tall (he can touch the ceiling without going onto tiptoes), broad shouldered young man, and yes he has strength (he opens bottle lids that I can't, and carries heavy boxes for me), but he doesn't hit out, doesn't hit me or his brothers, doesn't deliberately break things, or smash up the house. 
He isn't anything like the scenarios I had been filled with fear about. 
He is noisy, and as he has such large feet, you can tell what room he is in, just by the thumping of his feet on the floor or staircase, and the echos of Barney the purple dinosaur's "I love you" tune on constant loop, emanating from his iPad. These are easy to live with, and I am thankful he is such a laid back young man (yes he does get stressed from certain things, but I do my best to either eliminate certain triggers in the first place, or anticipate and intercept them, and use diversion tactics to minimise the impact). Every day is a learning curve, and I have to keep my eyes and ears alert for any trigger, but it's worth it to keep him calm and happy (which directly impacts on his brothers too, so keeping a harmonious house keeps everyone happy). 


Going back to the doom and gloom leaflet, I can see that J isn't going to have most of the things they said he wouldn't, but on the flip side, and keeping with my positive attitude around autism and learning difficulties, he is :-

• Happy
• Contented
• Safe
• Stress free
• Loved
• Respected

These are important, and should be celebrated, rather than looking for all the negatives. It can be hard to accept the things your child may not achieve, or to live the life you wanted, but look to what they can do, look to what they enjoy, and keep positive that their path may not travel along everyone else's path, but this is their journey, and their life, and we have to do our best to enrich it, and support them, and most importantly to love and respect them for who they are. 

Special Needs Schools - A Big Thank You

Here in the UK the school summer holidays have begun. Six weeks of trying to find activities to keep your special needs child/ren, (and your other children) occupied, and yourself sane.
There appears to be a lot of play schemes for 'neuro-typical' children, which come at a price, but a scarce amount of schemes for children with additional needs. These play schemes are very sought after, and are over subscribed, meaning that your child may only get a few days awarded. This isn't enough sadly, and is something I may explore further in a future post.

J, over the years has begun to learn about the times he doesn't go to school - he understands when I say it's the weekend (although his concept of time is something I'm not sure has developed). The school holidays are a long, drawn out, unwanted time for J. He would be happy attending school every day. The routine, and the stimulation from lessons keep him active, both mentally and physically, and I cannot replicate that at home.

This leads me on to special schools. I cannot make a sweeping statement in regards to every special school in the world being superb, but I make my own opinions based on the SN (Special Needs) schools J, and my youngest son W, have attended.
J has now reached the end of his schooling, and during this time he attended three SN schools.
His first was when he was just a little boy of three, and he started in their 'Rainbow' unit, which was a nursery setting, but in preparation for him beginning school there. This school was lovely. I remember how easy it was to get him his EHCP (Education, Health, Care Plan - formerly known as a Statement), and how the school was suggested, I visited, loved it, and he was accepted. This easy route gave me false hope of the future though, as since then it has been a lot more stressful trying to get him and his youngest brother further help that is essential to their needs.

When we moved, he joined a new SN school. He thrived there, and to this day I am still in regular contact (and like to call them my friends) with several of his teachers and support staff, and they see J's development and progress as he has moved through his secondary school. That school has since grown and grown, not just in pupil numbers, but in the building space. It is testament to the quality of staff, leadership, and skills that that school is in great demand.

His final school was different to primary, as it needs to be, and the shift from the cocoon of primary school to the more independent, 'hands off' approach was something I struggled with. J did at first too, (I wrote a post about it years ago, but to surmise he was placed in the wrong class setting - it was too academic, and expectations of achievement were far above his cognitive level). After requesting he be placed into a class that was aimed at his level, he thrived. His destructive self harming stopped (which had flared up when placed into the wrong class), and he loved going to school again.

My youngest son's SN school is however my favourite by far. Maybe I am biased, as I am quite active within it, but the reality is that the school has the balance of education, care, staff, and leadership, spot on. When people give me the 'head tilt' and sorrowful expression when they learn I have two children with differing special needs, I tell them about the sheer joy and determination of all these children at their schools. The notion that a SN school must be quite sombre and sad is most definitely the opposite.
Being within this school's grounds makes you happy. It is joyful to see all the children, many with complex health needs, being loved and respected by everyone else - staff and fellow pupils. 

I decided to write a post today, thanking all these people who work with our special children. I went around the houses a little to get to this point, but it is something that needs to be said.
We as parents, no matter the child (whether they have a disability or not), need to have trust in our school's staff, that they will care for our children just as much as we do.
Special education staff (especially those who are involved with my children) are an elite group of people, who work tirelessly to support the children in their care, and who champion every achievement, every success, every 'little' goal, and who treat all the children with respect.

I will finish on a short poem/quote I came across recently, that resonates with me quite deeply. I had it applied to two gifts I had made by a lady who hand stamps letters onto metal, and gifted them to two specific people who work with my youngest son, and for whom I have so much admiration and respect for. They both have an innate gift of seeing the potential in special children, encouraging them to be their best, and I wanted them to know just how much I think of them.

A Major Decision Decided In Secret

Throughout the UK, most, if not all local councils, offer a transport solution for children that attend a special needs school. These vary from council to council, but most are either a taxi cab, or a larger 8 seat van, with some being modified to transport children who use wheelchairs, or have mobility needs.

Quite by chance, I was visiting my local council office to discuss my youngest child's EHCP (Education, Health, Care Plan - formerly a 'Statement of Special Needs'). 

As I sat in the plush lobby, with a lot of very important looking people hustling and bustling past with their lanyard identification cards dangling from their necks, I noticed a small screen TV, mounted high up, away from the main seating area, which displayed in a sequenced rotation, information about the local council and their plans. 

As I was sat, with time on my hands, as my appointment time had already overrun its scheduled start, I casually gave this TV glances every so often. It was on one of these brief glances that I saw something about a consultation around Post 16 transport. Post 16 means any child that is going to college, and who has an EHCP in place. 
The rotation continued onto the next piece, and so I sat waiting for it to come back around. I took my phone out and prepared it for the camera, so I could take a photo of the screen, to allow me time to then read what it was stating. 

Luckily, as my appointment was still running late, I managed to capture a photo. 

The information on the screen told me that the consultation would end in two days time. I had not been made aware via mail, email, telephone, or any other means, about this. I made some enquiries, and discovered that those that would be directly affected by their proposals, had not been contacted at all, and very little had been done to publicise it all.
I have the feeling that despite formal consultations being there for people who may be affected by certain proposals, and allowing for opinions, views and debates, there is a tendency to keep them as closed and as secret as possible. Is this democratic? Does this reflect their values of giving vulnerable people of society a voice? 

That evening I duly completed the online form, giving my opinions, but feeling that despite opposition to their proposals, it would be futile. 

In the details about the time frame for their decision, it was clearly stated they had to legally publish the results before a set date. This date came and went, and upon calling up to speak to someone, I was told that they were still debating the issue. They had 10 weeks from the close of the consultation to make this decision, and it took a further 4 weeks until they had an answer. 

This then impacted on any applications for Post 16 transport requests, and yet again, a further 'exceptional circumstances' required form was required, but was not forthcoming, and the closing date for this was a mere few days away. 
I can be cynical at times, and it appears to me that as many obstacles, delays, and assurances were used to pass this new rule, and to hinder those that potentially could qualify. 
For those that do 'qualify' for transport, there is a cost, which is a block amount for set miles, and increases with each mileage band. The cost can be over £1300, which is demanded up front, with no option to pay monthly. 

I have begun to hear from other parents that they have been refused their new transport request, with reasons being given such as - 'the child's college choice isn't the closest to their home'. 
What needs to be remembered is that these children have special needs, and therefore their closest college may not have the additional support and guidance, and even courses that these children can receive. They have chosen a college that fits their needs, but this is not considered by those in power. 

It has been suggested by those that oversee the transport that J should receive a concessional bus pass, and he should get to his college via bus. Considering it further, J still has very little road sense, and would not understand about delays, different buses for different routes, and would more than likely be vulnerable to abuse from strangers for his 'weird' noises and behaviours. He could even get off at any stop, see a shop, walk in, and take some food or drink and walk back out again. He's not competent in making his own way to college, and needs to have transport fit for his needs. 
I will also quash the option of him being transported by myself every day, as I have another school run that is in the opposite direction to his college, and I cannot be in two places at once. The other school run child is too young to make their own way to school, as they'd have to use two buses and a train to get to their school, and have a long walk along a dangerously fast road (which doesn't have any barrier between road and pavement). 

I will find out shortly if J qualifies for transport, and I'm prepared for the struggle to appeal their decision. I am keeping some hope that it will be good news, and am keeping in mind that I will have to telephone them to ensure nothing has happened to his application, or decision, such as being 'mislaid'. 

Leaving School For College

The day arrived. 
One I had never believed would come around as quickly as it did. 
My Boy had finished school. For good. He is off to college. 
How did this happen so fast? Where is my little boy who looked so small and innocent in his new school uniform, not wanting to look at the camera and smile, all those years ago?

We all know (and hope for) these milestones to happen, some of us wish for them sooner than others, but nothing can prepare you for the emotions you experience around your child being at the end of their schooling. The cocoon of a special needs school. The warmth. The acceptance and understanding. 

The big wide world is out there, and whereas other children who have completed their exams, are now off celebrating with their friends and enjoying the freedom, my Boy doesn't feel any relief, or sadness. He doesn't want to go off with his friends, and attempt to buy alcohol and impress the girls, or boys.

J's school had a whole week of celebrating the end of school for Year 11's. Each day they went somewhere exciting and fun. A big theme park, a BBQ in the forest, trips out, and a Prom. 
The Prom didn't hold any excitement for J.
He wasn't aware of what it was, or when it was happening.
I had chosen a lovely pale (olive?) green, short sleeved shirt, and some smart black trousers for him to wear. 
As with a lot of new clothing, J tried it on, and then promptly hid it, which is his way of telling me that he does NOT want to wear it! 
So, five minutes before leaving the house, I encouraged him to get dressed into the clothes, and he had no choice about changing out of them, as he knew he had to get into the car.
On the drive there, he was repeating, "hello Prom", as I had told him that was where we were going. 
It was only half way there that it dawned on me - he doesn't know what a Prom is. He may well be saying "hello Prom", but it could be anything. I could be taking him to a new shop, or meeting a person called Prom.
So I said, "J's going to a party!". He understood this, as he repeated the word "party" back to me, and then said "cake, blow out the candles".

The Prom was lovely. Very lively, with the children dressed up beautifully. A lot of the staff where there, not just the teachers from the Year 11 classes. 
All of the children were accompanied by their parent/s or carer, which in the eyes of a lot of Proms isn't much fun, but the children needed a little help with certain things, and it made it easier to keep everyone happy, and enjoying themselves.

J sat outside, enjoying the sunshine, at his Prom.

After an hour, J had had enough. We had posed for the obligatory photos, drank some cola, nibbled on the buffet, and worked our way around the staff to thank them for all their dedication into J's life at his school. 
We left early, but it was the right time to leave for J.
The second we stepped through the front door at home, he stripped off, and got dressed back into his usual clothes!

In the morning I was sent a link to our local newspaper, and in the side bar, with the heading of J's school Prom, was a photo of J! I was overjoyed, but also shed some tears (I'm a wuss when it comes to the pride I feel about my boys and their achievements). 
Out of all the wonderfully dressed children, my Boy was chosen to be the lead photo. I had worried that he wasn't as smartly dressed as the others, but knew that he would not have tolerated a suit, a tie, a bow-tie, or anything 'jazzy'. 

That morning was also J's 'Leaver's Assembly', and it was very hard to not cry (I'm not one for public displays of crying). 
On a huge projector screen, in front of all the parents, school leavers, staff, and a few other classes from the Year below, we were shown photos of our children, right from their first year at that school, all the way through to now. I could see a lot of tissues being dabbed around eyes, whilst I determinedly blinked mine back.
It was beginning to 'hit' a lot of us - realising that our 'babies' were all grown up, and how much they have grown and developed over the last five years.

Each child was called up to the front, where the Head Teacher presented them with a 'Record of Achievement' book (it contains all their certificates over the last five years), a huge wooden framed photo of all the Leavers, and an A4 booklet which had a lot of their photos in, as groups. 

When J was called up, he didn't turn around to face the audience (some students didn't want to). 
After being presented with the above, the Head proceeded to tell everyone how much J has grown at school. He said he'd never forget J's turn as the Giant, in Jack and the Beanstalk (where he put a very funny spin on the "fee fi fo fum" speech, and made everyone laugh), and I could see both children and adults laugh at this, recalling this from the Christmas concert last year!)
He described J as a 'gentle giant', who doesn't like large crowds, needs his space, but is kind, helpful, and a comedian in his own way. 
As the Head was about to tell everyone where J is going off to college, J walked off, back to his seat, which again had people laughing, as the Head said, "well J has obviously had enough of me talking!" 
My Boy can make people laugh just by being himself. Whereas we would be polite, and wait, J thinks to himself, "I've had enough, I'm off". He's honest at least!

As the cliche goes, it's the end of an era. 
We are moving rapidly towards the end of his education completely, and that is where my worries about what he will do, where will he go for stimulation and entertainment? A day centre once a week isn't going to keep him occupied and active. I know I will be proactive and search out what there is for him when the time comes, and I can only hope there will be something suitable. 

Encouraging Their Dreams And An Inspiring Graduation Speech From Sef Scott

I have always championed my children to try their best, and not to give up, or give in. My youngest son, who is 8, and has a visual impairment, mild speech impediment, and potentially a mild processing disorder (he can forget things quite quickly, if he's given too much information at once), wants to be a fire fighter when he's grown up. At the moment, I am not telling him that he will not be able to drive when he's an adult (his VI is too severe ), as I feel he is too young to comprehend this, and I do not want to hinder his enthusiasm for life. However, I will encourage and support him to fulfil his dreams - he can still work within the fire brigade, just not at the front line. In fact, he could do almost anything, with the right adaptions (large print), and there is no reason he shouldn't work hard to attain his chosen career.
It may appear that his disabilities will hinder him, but he is receiving an amazing education from his school, and they are unlocking his potential, and so I remain positive that he will continue to develop and learn. 

As for J, his work choices are a lot more limited, but they are not diminished. J can follow guidance, and is methodical in his approach. He gains a lot of pleasure from the outdoors, as do I, and what can seem boring tasks for another person, J enjoys - examples being - he loves sweeping leaves ( "sweeping de leaves" as he calls it) , pruning bushes (with adult supervision - I've taught him how to do it safely), and I will be teaching him how to mow the lawn (we have a petrol mower, which means no danger of electric shocks from cutting the wire). 

J is very strong and tall, so he can touch the ceiling, without needing a step ladder or stool. He can reach objects high up, which is very handy, but also means I have to find more ingenious hiding places for things I don't want him to have! He can lift and carry things, and follows basic instructions of where to take them. 

J will be starting college in a few months time, and thankfully he has been placed at the outdoor learning unit, which is based at a small farm. This, I am hoping, will bring about more opportunities for him to do the things he loves, and learn more, and potentially find a little part time work / voluntary work,  that he can continue with when he leaves. 



Finally, I want to share with you an amazing, uplifting, and inspiring 6 minute video, from a graduation student at Plano Senior High School, Texas, that I watched. 

Sef Scott
Plano Senior High School
2018

The student's name is Sef Scott, and he has autism. His graduation speech is wonderful, and I highly recommend that you watch it. I hope his words make an impact on the world, and inspire others to follow their own path, and work for their dreams. 

You can view the video here ( Plano Senior High School, 2018)

The Switch From DLA to PIP

The time has come for J to be recognised as an adult, in the eyes of his disability payments. As he is now 16, he has to move from Disability Living Allowance (referred to as DLA from now on), onto Personal Independence Payments ( referred to as PIP from now on). 

We had a home visit by an assessor, who needed to see myself and J, to make a decision around whether he was capable of taking over his money, instead of me handling it on his behalf. 
J was prompted by me to say "hello" to the assessor, and then proceeded to march in and out of the room, playing the Teletubbies intro theme tune on his iPad, burp with a lot of voracity, and say "pardon mummy!" in a very loud voice.  He was just being himself!
The home visit did go well, and the assessor quickly recognised that J has no concept of money, it's value, or what DLA or PIP is all about - and she was not fazed by his lack of awareness or manners.


Soon after he turned 16, I received a letter from the PIP department, inviting me to begin his claim - as DLA has to stop at 16 (no exceptions). I telephoned the number at the head of the letter, and was greeted with a recorded voice, informing me that the number had now changed - the same thing happened when I called up about the assessor visit, three months prior! They are still sending out letters with an outdated phone number on - not something you would expect from such an official place.
Perhaps they have a bulk lot of these headed papers, and are using them up, before they begin using the correct ones?

The initial PIP claim (on the telephone) took around 25 minutes, and was pretty straightforward. Just ensure you have all the details of your child's GP, a specialist (if relevant), and your bank details (presuming that you, the parent/guardian, has been assessed as adequate in handling the child's payments) ready, so you are not fiddling around trying to find this information whilst on the call
There will be forms for me to fill out, on J's behalf, as well, and I was told these should arrive within two weeks.

I was informed that J's DLA would stop within 4 weeks of this phone call. However, I have since learnt that if your child has an 'indefinite' DLA award (there is no end date for you to have to re-apply and be reassessed for your DLA award money), this information is incorrect. There should be no stopping of any DLA on indefinite claims, until the PIP claim is sorted, and payment has been scheduled.

What did happen however was that J didn't (or rather my bank account didn't) receive his due payment of DLA. After chasing two phone numbers up about this matter, I was told that his DLA payment had been rescheduled for two weeks later, and the payment would be different - they are presuming that the PIP will be in place by then - however (!) the four week time period that is given for a new PIP claim, does not ever run to this time frame, and usually lasts a fair few more weeks, if not months - even if you submit all paperwork in good time, and have completed everything asked of, with no delay. 

So we are in limbo at the moment. I'm waiting for the paperwork to arrive, and am anxious to get this sorted and in place. I have a little nagging worry that there will be more hiccups, telephone calls, chasing up answers, and maybe even a decision that J will not be awarded PIP (which is unlikely due the severity of his learning difficulties and need for adult supervision 24 hours a day, but it could happen).

I will hopefully have a positive update on here soon.

J And The Neighbour's Parcel Deliveries

A funny little thing happened recently with J, a parcel delivery for my neighbours, and the 'help' he thought he was being to me. 

I have a usual routine of removing the name and address labels from every parcel I receive for us, as soon as I've removed the contents from the box, so that it can be squashed and put into the recycling. 

One day recently, I took in two boxes for my neighbours, and put them in the kitchen to store until they collected them. I totally forgot about them, until I saw my neighbour's car in their drive. I went to retrieve them from the kitchen, and found two empty boxes, labels removed, and the contents piled neatly on the side.

I quickly packed everything back into the boxes - luckily he hadn't squashed them - and scuttled over to my neighbour, with a pained and embarrassed look on my face, which she looked quizzically at me for. I hastily explained what had happened, as I handed her deliveries over, and she was very understanding, and even laughed ; 

When we first moved into our house, she introduced herself within a few hours, and produced a lovely bottle of red wine to welcome us into the small cul-de-sac, and I explained all about J and his 'funny' ways and special needs - so she was really unfazed by his latest antics. 

It was only later on in the evening that this thought occurred to me - thank goodness her deliveries where nothing embarrassing, or of a sensitive nature! I don't think either of us would be able to stop and have a little chat every so often, or even pass pleasantries as we head in and out of our houses, without blushing. 

 

A Scary Night For Me And My Boy

A small update on my Boy...

Last night, at around 1.30am, I awoke with a sense of foreboding. I got up, opened my bedroom door, and was greeted with the distressing noises of J choking and having another 'episode'.
He had blood seeping down his nostrils, and out of his mouth, as he had bitten his tongue. He was choking on blood and mucus.
I managed to clear his mouth, and held his jaw firmly, pushing my own body against his, to try and keep him in a half recovery position. This was tricky as he is such a big lad, his bed is a soft, king size, making it more difficult to turn him, and I was trying to take his pulse, blow on his face to cool him down, wipe the blood and mucus away, and talk to him to reassure him I was there (if he is aware during these episodes I want him to know mummy is there for him).

This was a very scary episode for me, as he was particularly noisy with his breathing, the choking, and how long it took him to recover this time. He tried to get up when he had come round, and wanted to use the loo. He couldn't stand without support, and then in his confusion he attempted to go down the stairs - which would have resulted in him falling down them and ending up with even worse injuries.

This morning, he is unable to talk properly - I know he has speech and language difficulties as it is, but he cannot even say the words he knows, without sounding as if he has cotton wool plugged into his cheeks. He is clearing his throat a lot, and just isn't the usual J. He looks really poorly. I've medicated him, and am just having to keep an extra eye on him.

The frustrating part is, that we have been told to only call the ambulance if an episode continues on for longer than 20 minutes, and even then, when they arrive, they make the decision not to transport him to hospital, as it would be even more distressing for him. I agree with them on that. Waiting around in a noisy, crowded, hot, bright hospital is not conducive in helping to make J better.
We just have to wait until next month for his MRI scan to find out if there is anything going on in his brain that could be causing these episodes.

On a brighter note, J loved his presents. He is finding comfort in pressing the 'Tubby Custard' train to make noises, and as the picture below will show you, he has lined up the 'Tubby toast' set, with cups and saucers, in his preferred pattern of colour.

My Boy Turns 16!

My Boy turns 16 shortly, and it doesn't seem five minutes ago he was a little, cuddly baby, whose future I dreamed of being vastly different to what it is turning out to be.

Turning 16 is a milestone for most teenagers, but J is not 'most teenagers' ;

- He is helpful - he will fetch and carry things I ask him to, without the regular teenage shrug, "hrumph" and "do it yourself" reply. 

- I don't have to worry where he is at 11 O'Clock at night, or deal with his grumpiness about me not allowing him out to someone's party. 

- He doesn't have music blaring out from his room, rattling the windows, and annoying the neighbours. 

- I don't have to worry about alcohol, drugs, falling into the wrong crowd, and the struggles young people face everyday from peer pressure, the media, and celebrities.

I've always believed in looking at the positives, and although he won't be out with friends, attempting to get served a pint of lager, or hanging around with older lads who drive, he will be safe with us at home, and will have everything he enjoys in his life - cake, iPad, his favourite pieces of Lego, and no stresses.


J has always been very tricky to buy for at birthdays and Christmas time, as he never played with toys in the way other children did, didn't like books (he refused to sit and have a book read from a very young age, and if you sat next to him as he looked at a book, he'd get up and walk away (!) ) and had no interest in these special days. 
This last year, his love of the Teletubbies has resurfaced (thanks to YouTube and their clips, and the new episodes which have been made, on TV), and I've bought him two Teletubbies toys. 
He won't play with them in the way they are intended to be played with - as he never did with any toy he was given as a child - but I know he will love them, as he likes the colours, and will line them up in unusual places, such as in the pots and pans cupboard, where four coloured pen lids are residing at the moment, in perfect line, and always in his preferred order.

Teletubbies Custard Train

This is the Teletubby 'Custard Train', and it's a 'pull-along' toy. The Teletubbies are stuck into their seats, so they won't get lost.

Teletubbies Toaster Set

This one is the toaster set, as he loves the 'Tubby Toast' scenes in the shows. There are plates and cups in matching colours, and again, I'm sure I'll see them lined up in random places around the house. 

Despite him not playing with these toys as they are intended to be, he gets a lot of pleasure from them, and that's what matters.

The smaller presents are all the things he'll gain enjoyment from ; as an example of two of them - sand timers, in his favourite colours again, that I think he'll enjoy in a sensory way, and two big bars of chocolate - his other great passion! 

He knows there is a birthday approaching, as the presents are wrapped and in view in the utility room, and every so often he will say randomly, "birthday soon". What he doesn't know is; the cake is locked away in the garage, as he'll eat it all without remorse, and in one go, if he had free access to it, and that he is the birthday recipient - I do reply, "yes, J's birthday", but I'm not sure if he computes this in his brain, or is bothered that it is his. 

My baby is turning 16, and although there have been some very hard times, it's been an amazing 16 years, full of adventure, fun, silliness, and life.