Friday, 2 August 2019

The Journey We Take From Denial To Acceptance

I consider myself lucky to be where I am in regards to acceptance of J. I took several stops off at self pity, denial, regret, anger, and wanting to give up. It has taken years to be where I finally stand, and years to be able to say that I fully accept J for what he is, who he is, and the future he has.

Along my way I have met many parents who have stopped off at the same place as I was at, or were a few stops behind or in front. Some parents were at the end and were happy and accepting. I looked at them and couldn't see myself being in that place.

I visualise this journey through emotions as being on a map, with various stop offs, but with the end of the journey nearly always being the same destination - acceptance. Sometimes you go back a stop, jump to the next one, miss one out completely. It's not always a straight line from A to B.
The stop offs may not appear in the same order for you either, this picture I've created is a way to demonstrate visually what I am attempting to write.





When I was at the denial stage, I hadn't really heard much about autism, and would excuse J's behaviour ; never wanting to sit down with the other children at snack time, or want to join in with them at sing and rhyme time (at toddler groups when he was 2-3 years old) - I'd say he was a late talker, or liked to be independent.
One mum at the toddler group matter of factly asked me if he had autism, and I immediately replied "no"! I didn't have a clue really, but was aware she was talking about a disability, and I denied it. I didn't want to face facts that he did have difficulties, and that I was worried.
That defining moment still lives with me. I remember it clearly. I remember how I felt. Having someone else point out what I was internally worrying about, created an avalanche of emotions, and I became buried even deeper in denial.

We were sent for a hearing test, a kind of 'par for the course' routine test that is done, to initially rule out hearing loss to be the cause of the lack of speech development and communication.
Here again, I sat in denial, amongst children that were a lot like J, and for whom I could hear the parents talking about autism, and I could see posters up on the walls giving guidance for suspected autistic children.
He doesn't have autism. Nope. He's just a late developer. He's my first born.
If I had a £1 for every time someone back then told me about Einstein and the fact he didn't talk until he was 5 years old, to complain about his porridge (or something like that), and when asked why he had never spoken before, he replied, "because my porridge has always been fine before", I'd not be rich, but I'd have a money jar full to the brim.

The hearing results came back as fine.

It was a few months later when we had a paediatrician appointment, which had been arranged by our GP, that I was to be given a diagnosis, that was made after a thirty minute meeting with the paediatrician.
She handed me a leaflet, not a booklet. It was a folded piece of A5 paper, that talked about autism, and our newly diagnosed child.

You know when you're in your own world, thinking, or maybe on the phone, and you walk slap bang into a glass door, or cupboard, not realising it was there, because you weren't concentrating. It was like that..............




That was what I liken this experience to. Coming out of the denial fog and seeing this sign right in front of you......                       
                           


I was dazed. Confused. Shocked. In this little leaflet it told me how my life was never going to be the same again, and that my child would depend on me forever.

At home, and before Google and easy access to the Internet, and not wanting to believe the diagnosis, or the leaflet, I got out my old family medical journal. Under autism it had a short paragraph, that informed me that my child would never be independent, never drive, marry, live alone, would be a danger to himself, socially inept, a loner.....




We moved very soon after, to a new area, and at the new GP surgery I was told that they do not make such sweeping diagnoses' within one appointment, and that it will take a year of regular observations, from professionals, before they would give out such a diagnosis.
That gave me some hope as I was still lingering in denial.
I had begun to dip my toes into regret as well though. It had to be my fault. I probably didn't talk to him as much as I should have. I didn't interact with him enough. One person, who shall remain nameless, once told me that it was my fault, as I was the only one with him all day, every day, and so it was down to me. I caused it. That comment still hurts me to this day. Still rattles about, niggling me, but, as I have learnt so heartily over the last decade, you can't live in the past.

Over the coming year, we attended a weekly session along with other children of similar ages.
There were play assistants that interacted with the children, and it was just like a playgroup/nursery setting.
There were parent lessons that we attended during this time. We watched videos, were taught from text books, and talked about our children. It became patently clear to me that he was indeed on the spectrum, or had a severe learning difficulty.
At the end of that year, there wasn't really a big grand 'ta-da' moment. It had built up, trickled in, flicked the light switch on in my brain. So there was never a big build up to them telling me. They knew I knew.
It was from here that they suggested a special school, I went to visit, fell in love with it, and a whirlwind of him being given a Statement of Special Needs (required in the UK to be able to attend a special school or to get extra help in a mainstream school), and him starting as a 'preschooler', attending a few mornings a week, several months before he was able to start in the new school year at the recommended school starting age.

I have bypassed going in depth about the dreadful mainstream playgroup he attended during his one year observations, as it was truly an awful experience for him and me. Their special needs assistant had no empathy, care, or desire to want to help J. I removed him within a few months, after many promises of them trying harder. It was not J at fault, it was them. They were an awful childcare place. I will probably write about them in a future posting.

Around the time J was being assessed, he began to be destructive within the home. He also developed complete terror at me leaving the house without him. I couldn't even go outside to the main bin to empty the kitchen rubbish, without him screaming and crying.
The destructive behaviour he displayed at home resulted in him smashing every cup, plate, mug, lights, lamps, tipping over bookcases, opening drawers and emptying them all over the floor.... in the end we stopped replacing items and used paper plates, plastic cutlery (because I didn't feel comfortable having regular cutlery around in case he used it against me or himself) plastic cups, we had no lights (as smashed glass from bulbs is no fun to step on), and I stopped trying to put everything back on shelves and in drawers, as he would do this several times a day. It was exhausting. I was at a very low ebb. I fell into self pity. I wanted to give up. I mean, I really wanted to give up. I spoke to someone about perhaps having him removed from me, as I was obviously not coping with him, and I wasn't able to help him stop. I was useless, I believed.

I remember attending a family birthday meal at a restaurant, and J acted up, with people from other tables staring and tutting, and I had to leave. I sat in my car, with J, and my Uncle D came out and sat with me. I just cried and cried. I had never shared with any family member just how hard it was for me, and how hard I found it all.

One day though, it all stopped. As another destruction free day ended, I tried not to get my hopes up that it was the end. But the days turned to weeks, and it had just stopped, as swiftly as it had all started.
He was happier, I was happier. My self pity gradually disappeared, and I began on the long road of regret.

I would spend my time pouring over possible causes for his autism/learning difficulties, and I could identify with a few possible reasons as to why it was my fault he had a disability. I had a huge craving for tuna fish during early pregnancy, and there were no mercury warnings back then, or advice to restrict your intake during pregnancy as has emerged over the last decade.
His birth was long and traumatic, and I don't believe the care he or I received was adequate. I was treated with no respect, and as it was my first labour and delivery, I wasn't listened to when I became worried. They knew better than me, or so I was told. It ended with him becoming stuck. He was pulled from me with such force that the doctor was shouting at me to push, despite me having no contractions,  and damage was caused to J's head, as well as me (no need to explain where and what that was, it's obvious). As well as J being poorly and requiring oxygen and resuscitation, I had to be dealt with for a few hours afterwards and was close to having a transfusion.
I did have moments of anger when reliving what occurred during those 39 hours. When no-one is listening to you, and dismisses you as a stupid first timer, I feel anger at myself for not being more forthright and demanding. That was where I directed my anger, at myself. I have fought through depression, have a huge weight issue, and all because I internalise and hate myself for not helping him when he really needed me to. For me, that has been, and still is, the hardest thing for me to overcome.

Regret lived with me for many years. Guilt and regret. It has taken me a long time to put that to bed.
I went through much sadness over the way J wouldn't be able to experience marriage / a partner, children, work, driving, independence, and all the usual expected milestones of life.
I flipped the negativity about his disability, and turned it into positives.
J has never, and will never be prejudiced towards others. He doesn't see hatred.
He views nature as a most wonderful thing, and can spend hours wandering around a forest, sitting under trees, listening to wildlife, dancing around as the rain falls on his face, and finds peace.


I don't remember the day or even month that I emerged from regret and became fully accepting of J and his disability. It just happened. I had no more fog clouding my thoughts. I could just see this perfect boy, with a big smile, loud giggles, and who was bouncing and dancing his way through life.

I 100% accept J for who he is.
He is settled and happy at home. I do not make unreasonable expectations of him. The house runs fairly smoothly, and he doesn't get stressed over much. I understand him. I understand his noises. I know when a noise means he's in pain or is scared (like when he loses a tooth, I now recognise the noise of panic he makes at the moment it comes out). I know when he makes a screeching noise, it doesn't mean he's in trouble, it's his happy, playful noise.

I don't feel regret for him any more.
I know he will always be with me, and I am making plans for the future, when my other two children are off out in the world, making families and memories of their own. J and I will go off travelling around the country in a big camper van, or ideally one of those big American motor homes - I love those. He loves travelling. He adores nature. We'll visit many places, and have fantastic trips away.


Going back to the picture I made about the journey we make, when you're feeling low, or alone, remember that there is always another parent at that same place, feeling equally alone, lost, confused. If we all extend a little more kindness and empathy, we could all find an easier way to travel along this route.
I can state categorically that you will meet some amazing parents, who have their own stories to tell. You will make some lifelong friends. They will be there for you, with a sympathetic ear, shoulder to cry on, and a knowing nod. Advice is swapped without fear of being admonished.

If you are in any doubt whatsoever, I am wholly, truly, totally in love with my Boy. He is amazing. He makes me proud. He makes me smile. He has made me a better person.

And just in case you still feel alone, just remember this......






Communicating What He Wants By Writing

Over the years, J has had numerous 'magnetic drawing boards' which are a progression on from the 80's sketch boards called Etch A Sketch. Do you remember these? You could only control the movement by dials, so drawings were harder to do, and frustrating if you went wrong.

Etch A Sketch

Around 12 years ago I found a really good brand of new style magnetic drawing boards, and have stuck to them ever since.
Every year he receives a new one as a present at Christmas, and he still loves to use them to communicate with me. He only ever really asks for food to eat, or food he wants me to order in the shopping basket online, or describes where the food he likes has been put.



Tomy Megasketcher




The brand I use is called Tomy Megasketcher, and they're hard wearing, bright, and fun to use, and all my boys have played on them over the years.







I've been collecting photos of what he's written for the last few months, and here are a selection of the ones he's brought to show me - he wants me to photograph them, and waits while I find my phone, and then wants me to take a picture. He reads out what he's written, and I know this is his request for what he'd like!


He's asking for an ice cream known as a Strawberry Cornetto, that comes in a box of four.





This is a drawing of the packed lunch that he takes to college. He's drawn and written ; his water bottle, a custard pot, a pot of sliced cucumber, a sandwich, a packet of crisps, and a chocolate bar. 




I've written before about his love of Jaffa Cakes. This was a request for the yard stick of Jaffa Cakes that they only sell around Christmas.




In the UK we have chocolate biscuit bars called 'Penguins'. I have to lock away all the foods J likes to gorge on, in specially made drawers in my kitchen, and this was his way of telling me what he'd like and where they are.


He loves hash browns, and they come in packs of 14. He's asking me to add two packs to the shopping list!


He's describing how I cut his toast up - into 4 pieces.

There are a lot more of these I could show, but it'd be repetitive and you get the gist!
It's great that he can communicate with me by this method, but he doesn't get what he requests all the time!

Thursday, 1 August 2019

First Introductions To Autism

Going back to the very start of my introduction to autism, when I was handed the leaflet from the very first paediatrician we saw, it all seemed unreal and didn't make any sense.

My child, my first born, this little boy with his blonde hair and blue eyes, who never tried to speak, who everyone had said was just a bit behind, suddenly had this disability which was hard to comprehend, and made me feel lost in a country where I didn't speak the language or understand the customs.

The leaflet was scant with information and it never really dawned on me the actual reality of autism. As mentioned, before I got out my trusty medical journal to find more information, but that too was a paragraph of daunting words that gave me a hard hitting smack in the face that this was not going to get better with a little speech therapy.

Over the years, but more so at the start, I bought books on the subject. These books came with glowing recommendations on the jacket sleeve but to be honest, they were way too information packed with no personalisation, real stories, and a very bleak outlook.


One book I did buy was called  George and Sam  ( George and Sam US ) and became my new best friend.


George and Sam

This book was written by a mother with three sons, and two of them have autism, with differing levels each.
This book was interesting, made me smile, and allowed me to see I was not the only one going through the shock of the diagnosis, the sharp learning curve of the behaviour issues and the hard truth that there is no cure, miracle or otherwise.

I find that with the 'education' books they focus on the more negative side and not the fun side, the loving side and the way that autism is not an end to everything, rather a beginning of a new life and way of thinking.
And of course, as all mums with children/adults with autism will tell you, every child with autism is unique. Autism is, as the terminology states, an 'umbrella' and a 'spectrum' and therefore is different in each child. There are familiar traits and tell tale signs, but what one child may struggle with, another sails through.

I hope that through this blog, parents out there who are perhaps at the start of the journey (and really this is a proper journey and not the ones that contestants on X Factor bleat on about), or maybe having a bit of a down day, can have a laugh at the antics of my J, the way I deal with issues that arise and see that even though autism can be very solitary, there are tens of thousands of us out there on the same solitary path but all inter-connected together.
Something a book written by a doctor/paediatrician/specialist will never truly understand, unless they too are on the personal path of this disability.

Tuesday, 30 July 2019

Nystagmus - Overdue Update Of My Youngest Son

It has been a very long time since I updated about my youngest son, W, who has Nystagmus.
If you want to read the previous posts I have written about him and his eye condition, you can click them here -
My Third Child
Nystagmus And The New Baby
Nystagmus - An Update On My (Now) Toddler!
Nystagmus Update - The Baby Is Now Three!


My little boy is now 9 years old! Where does the time go?!
He is simply the most beautiful and kindest person I know.
He still wears glasses, and the prescription strength has increased over time, but has been stable for around two years.
The 'wobbly' eyes are still present, but the speed and rotation of movement have slowed down, and only really get worse when he's tired or upset.
He has to have an eye test every six months at the hospital eye clinic, and he had genetic tests around a year ago, for a condition called Ocular Albinism. This does not affect his hair, eye, or skin colour, but could be the reason he has Nystagmus and low vision. I myself have Photophobia, which means my eyes become painful in bright lights, and this affects my night driving too, as I can get dazzled by oncoming vehicle lights. Photophobia is also a trait of Ocular Albinism, so there could be a link. We are still awaiting the results of the genetic tests.

Learning to read has taken more time, as a lot of books have print which is too small, or is buried amongst a lot of imagery, which can make it incredibly hard for his eyes to distinguish the text.
At home I have been using the Oxford Reading Books, which I first bought when I was home educating my middle son. These are the books that I use - Oxford Reading UK or Oxford Reading US

I have also sourced some brilliant 'flash' cards that are bold enough for him to read, and have meant I can assist in his teaching at home.
These are the two Flash Cards I use at home -


Common Exception Words UK
Common Exception Words US
 




First Words Flash Cards UK and First Words Flash Cards US








His reading level is that of a 6 year old I think, so he is not doing badly at all, and with my input at home, as well as the amazing work his teachers do at his school, he will be proficient within no time at all.
He can read common words with very little 'sounding out' ( c-a-t), and longer words are becoming easier for him to read, but he does sound them out more often, which is all a part of learning to read.






During his time at his special needs school, he has won two end of year awards - one for Sport, two years ago, and one for Maths, which was awarded recently.
For both of these, he received a small trophy with his name, the date, and the category he won in. He was so proud of himself, as was I.





His Maths ability is fantastic. He has a very logical brain, just the same as his middle brother
(who is 13 ), and they both find Maths an easy concept to learn.

There is always the thought that he should attend a mainstream school, as he has ability in a lot of areas, but he needs specialist input from the understanding and skilled staff at a special school to really help him flourish. His speech is still not 100% perfect, and he finds longer syllable words tricky to say, but his concept and understanding of words is exceptional. He amazes me with some of the tricky words he uses, and in the correct concept of the sentence.
I would also oppose him attending a mainstream school as I am always concerned about the level of bullying that happens - he would be a prime target, with pupils taking his items away, and him not seeing them do it, and not able to find it, because of his eye sight.
I know schools have to have an 'anti-bullying' policy in place, but bullying has always been around, and always will, and whilst schools can produce wonderfully worded policies, it will never be eradicated completely.
Here in the UK, mainstream schools are over-stretched and filled to the brim in each classroom, so W would not get the individualised education he needs, and he would be 'lost' in class.

If I were ask W what the worst thing about having Nystagmus and low vision is for him, I'm pretty sure his answer would be the eye drops he has to have at his eye clinic appointments! He detests them. He has gotten better with them, but is still frightened, and I have to do a lot of talking and reassuring for the preceding week, and on the day. On one of the days he had that, around two years ago, he was so distraught when they were trying to administer them into his eyes, that he screamed and cried, for twenty minutes, until they finally got the drops in, and then he refused to talk to me for the rest of the day. As he is such a chatterbox (he gets that from me!), it was quite peaceful during his silence!


W does use a white cane at times when we're out and about, as in busier places, people can be very impatient and rude when he doesn't move out of their way, and he has been pushed by adults, with one incident that ended with him being pushed into a metal display unit in a pharmacy shop. We were in a queue to be served, and someone behind us decided to get irate that he didn't move forward three inches when the queue moved forward, so pushed W hard, and sent him flying into the shelving unit. With the white stick, the majority of people recognise what it represents, and tend to give him more room, with less impatience.



W has described his vision to me before, and one very insightful one was when he said, whilst standing at the top of the stairs - "it all looks flat to me. The ground isn't any different from the stairs, as it's all one level". What he's describing here is the occurrence of something called 'depth of perception'. When he was little, he would stop when he was aware a rug or carpet or flooring changed pattern under his feet, as he had to make sure it was flat, and wasn't a dip or rise that could trip him up or make him fall. When crossing the road, the kerb doesn't appear to him as 'going up' or 'going down', (but as a continuation of the road and pavement) but he's learned this, so is careful when stepping up or down.


To sum W up, I could use so many adjectives, and could write all day about his amazing ability to just be himself, despite his disabilities. I will be succinct however, and will say this - he is a bright, funny, intelligent, loving, kind, and thoughtful little boy, who I am so proud to call my son.



Sunday, 28 July 2019

10 Year Old Boy With Special Needs Forced To List His Faults By Teachers


I have read today about a 10 year old boy, who has ASD, ADHD, and ODD, who attends a mainstream primary school, and who has been subjected to a form of bullying by the very staff who should know better.

There should be no excuse for any mainstream school (or any school for that matter) to promote what they did as a way that will help children who have a special need, and it seems incredulous that these staff members actually thought this was a good idea!

So, what did this school decide was a great idea to implement?
They requested this child's class mates to say aloud what they dislike about him, and then made him write all of their dislikes down on a drawing of himself, which was then displayed in the classroom, for everyone to see daily.


The picture and words that the child had to write, and had displayed in the classroom.

This occurred last year, but has only come to light by the child's parents recently, as like most parents with children at school, we get all their classwork and pictures back at the end of the Summer Term.

I sincerely hope that the staff at this school reevaluate their reasoning behind their choices, and try to understand why their actions have been so widely criticised.

We should all be working towards a better understanding and acceptance of disabilities.

You can read more about the story here

Wednesday, 3 April 2019

World Autism Awareness Month


A few days ago, my Blog turned 9. I know I scarcely write anymore, but life is full on, and when I think about sitting down to write, something else always crops up.
Children have the uncanny knack of requesting food or drink, or help with their homework, the second you sit down with a cup of tea.

As we are now in April, I thought it was apt to post about Autism Awareness Month.
Although April the 2nd is the official World Autism Awareness day, the whole month is for awareness.



A lot has changed in regards to the acceptance of autism amongst society, since I began my journey 16 years ago. However, we are still so far from being fully inclusive, accepting, kind, non-judgemental, and supportive of children and adults on the spectrum. 


Thanks to drama shows on the television, books (that turned into plays -The Curious Incident of the Dog in the Night Time), celebrities who bring more attention to it (due to their own personal experience
of having children with autism), and the rise of social media giving platforms to everyone to highlight, talk about, and champion their children and adults, more and more people have an awareness, but this can be at times, a little frustrating, as there are so many facets to autism, hence the full name autism spectrum disorder, that albeit well meaning people can lump every person with ASD into one category, without understanding that every person will have different quirks, needs, likes, dislikes, and level of ability. 


If you use Facebook, and want to be a part of a friendly, chatty, helpful group of parents and carers who have a child or young adult with special needs - all special needs are discussed - then follow this link and join. It's free, and has over 1.2k members. It's highly moderated, and completely closed, so no one outside of the group can see what has been posted. Just click this link and join! >> The Special Needs Forum Facebook





















Tuesday, 8 January 2019

Down The Pub?!

My Boy brought a work book back from College the other day, and it has writing and expressive words in it.
He uses PECS (Picture Exchange Communication System) to form a sentence, and at 16 he is still learning more symbols within the system.

His teacher told me at our recent meeting that he was asked what fruit he likes to eat.
He was shown pictures of a variety of fruit, and he had to put each picture into either a 'yes' or 'no' column, to say if he liked eating them or not.
He put each item of fruit into the 'yes' column, and none into the 'no'.
When the teacher told me this, I knew what she was going to say next!
When seeing all the fruit he apparently liked to eat, she presented him with a piece of each, to eat.
His verbal response was a resounding "no"!
J doesn't like fruit. He loves vegetables, but fruit is something he's always shied away from.

This task shows that J is still not comprehending the choice of 'yes' and 'no' when given the option.
It's something the college and I will be working on with him.

In another page of his work book, he had written a sentence down, describing what he had done during the Christmas holidays. He is assisted with the words by staff, as he can copy the writing someone else does, but cannot write a sentence by himself. The process from saying something, to writing it down isn't there yet. I'm not sure he even understands that what he is copying down is what he's just said.
I hope you understand what I've tried to convey here - it makes sense to me, and I hope I've explained it clearly.

This is what he wrote.....




Now, bare in mind, he is 16. In the UK the legal age to drink alcohol is 18, but under 18's are permitted in a lot of pubs, but minus the alcohol consumption.
We didn't visit a pub of any description, and it made me laugh when I read it.

Does he want to go to a pub, but can't tell me?
Probably not.

I think he was asked what he did over the holidays, and he replied "park", as he loves to go to the local playground and play on the swings. I believe the way he said "park" was misconstrued as 'pub' and he was given the words to write down.

The second part, where he says his favourite present was chocolate, is true. Absolutely no doubt about that at all!
He received various chocolate gifts, and they were eaten in under 20 minutes flat.

He also received a yard stick Jaffa Cake tube, which had four boxes of the cakes (biscuits?) in.
These were rationed out to him, as he would have eaten them all in one go, and made himself feel very sick.
                         

I have written about his love of Jaffa Cakes a few times over the years. 
I still reference 'Jaffa Cake Mountain' to people, as it's still a funny story to me.
You can find two posts I wrote here >> Jaffa Cake Mountain
 and here >> The Jaffa Cake Disappointment

Happy reading!





Monday, 7 January 2019

Auticon - All Employees Are On The Spectrum

Last week I read about a company in America that only employs people who are on the spectrum.
Auticon (formerly Mindspark), is the idea of Gray Benoist, and is only one of a handful of companies that does this.


Gray Benoist from Auticon

From the get go the Auticon interview process takes into consideration the difficulty around eye contact, and the need to look away a lot. There is also the  pressure and stress to talk about yourself and 'sell' yourself, which can be very overwhelming for even the most experienced interviewee, and this again is understood and accepted. 


Another action Auticon implements is that its employees can wear headsets to minimise the noise in the office, and they even have chance to take time off if they become overloaded - called 'anxiety days off'. 


A German company - SAP - employs a mixture of people, some of who are on the spectrum, and they offer ASD interviewees the choice to build Lego robots, instead of a traditional interview. 


Steve Silberman wrote a piece about this, called 'The Geek Syndrome', and said that this Lego building showed "problem solving skills and commitment to a task". 


Steve Silberman



If more companies understood this, and the struggle people with autism can experience, and implement it during interviews, they could become better aware. This would in turn enable people with ASD, who have passion, commitment, skills, and the drive to do the job on offer, a chance to prove their capabilities.  

Another action Auticon implements is that its employees can wear headsets to minimise the noise in the office, and they even have chance to take time off if they become overloaded - called 'anxiety days off'. 

It goes for everyone however, that when you feel comfortable and accepted, you achieve more, and progress further. 
I hope more companies follow suit.

You can read more about this here >>> The Firm Whose Staff Are All Autistic

Friday, 4 January 2019

Tired? Try Drained!

Courtesy of The Special Needs Forum, Facebook


Most parents, especially those with babies, know that feeling of incredible tiredness, and the need to have a quick lie down for a few weeks, but for those of us with a child with a special needs, that tiredness never seems to abate. The 'baby' phase continues on, sometimes relentlessly, making days and nights meld into one, long, never ending struggle to stay upright, or at the very least, awake.

If you're reading this, and can relate, keep going, keep fighting, and stay strong. Try and remember to give yourself credit for all you do, even if no one else does. 











Saturday, 29 December 2018

Brand New Group - Why Don't You Join?

Over the past month I have been busy, and have helped co-found and design a new Facebook group for special needs and disabilities. 

Within 4 weeks we have built the membership to over 600, and are looking to increase this further, as the feedback has been so positive. *Update* We are now at 2000 members as of July 2019.

We have members from around the World.

It is a private group (so no one outside of the group can see what is posted), and is very highly moderated - zero tolerance of abuse, hate, cattiness etc, and all requests to join are looked at - we are careful about fake accounts and people looking to cause drama or hurt. 

There are a lot of Facebook groups for specific disabilities, but this one is breaking the mould and bringing everyone and every disability and special need together, young and old.

Whether you are a parent/carer/guardian/family member of a child and/or adult with any disability or special need, you are welcome!

Come and join the incredibly friendly, helpful, non judgemental, and inspiring people, and share your story with us. 

Clicking this link will open a new window and take you straight to the Facebook page. If you don't have a Facebook account, setting one up is quick and easy.




Click >> The Special Needs Forum Facebook

Copyright design TDB







Wednesday, 28 November 2018

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






Saturday, 25 August 2018

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. 







Saturday, 11 August 2018

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. 

Thursday, 9 August 2018

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