To Everyone Who Helped My Son Through Brain Surgery

Rarely in life is the picture small. One simple stone thrown into a still pond creates a ripple that lasts long after the impact. So it has been with my ten years old’s recent brain surgery. This is a thank you to everyone who has been part of that ripple with one little amazing boy at the centre.

To the neurologist who saw my son for the first time after his previous neurologist retired and who immediately referred him for a routine MRI when he noticed it was later than originally planned: thank you for your diligence and quick referral. Without that my son would be suffering right now and no-one would know why. You were the person who threw that pebble and you did it with such attention to detail and care.

To the MRI clinic receptionist who called me with the date for that MRI: You had no idea you would be calling me several times again a few months later and we would recognise each other’s voices. Thank you for your professionalism and your cheery demeanour. I know we will be talking again soon, sooner in fact than anyone thought.

To the nurses who looked after my son on the day ward and have done five times now as he has become a regular in that day surgery. Thank you for always booking him a single room 3 because experience has taught us he won’t go anywhere else and doing all his checks as quickly and unobtrusively as possible. You take the time to understand him and allow me freedom to support him the way that works best without interfering. You make what is a long and difficult day more manageable for both him and me.

To the anaesthetist who I know like a friend: thank you for always putting my heart at rest and listening to my concerns. I alway know I am putting my baby in safe hands. Thank you for your reassurance time and time again. I was hoping we wouldn’t see each other for a while but when we meet again soon I will once again leave you with my sleeping child and trust you to keep him safe. You have proved your worth and continue to do so.

To the radiographers who have looked at my sons scans so many times and who have spotted first a tumour on his optic nerve, then other signs of concern and who quickly alerted medical staff to the mass on his right frontal lobe. Thank you for your attention to detail. Your diligence and thoroughness are what have made the difference between surgeons removing active brain cells and dead ones in my sons complex brain. You are partly responsible for his great recovery and quality of life.

To the oncologist, neurosurgeon, neurologist and radiologists who have met and discussed my son’s case numerous times: I know he has caused division and discussion but thank you to every single one of you for caring enough to want to help and investing your time and energy in seeking answers.

Thank you again to the neurologist left to make that call to me to say what had been found on my sons scan. I can only imagine the turmoil that call caused to have to phone an anxious mum at tea time and tell her surgeons she had never met wanted to do brain surgery on her non verbal autistic son because they had found ‘something” in his brain they didn’t like. You made that call with such compassion, such concern, yet such clarity that you left me feeling my son would be looked after and all would be well even though I was in shock. Thank you for going above and beyond and calling back the next night just to check on me. I will never forget your kindness.

Thank you to the neurosurgeon and oncologist for finding time in your busy schedule to meet with me and answer every question I had and letting me see scans for myself . Your care and straightforward talking made me feel secure and at peace knowing you had a plan and experience on your side.

To the staff in the day ward who coped with my distressed child when for the first time his anaesthetic failed and he woke in the MRI machine, thank you for your quick thinking and for making sure my son recovered from the trauma.

To the staff in the neurological ward who found themselves admitting a child with complex needs who spent the entire day pacing the ward while his mum read out the numbers in every door: thank you for your endless patience, adapting to my son’s ways and coming in to work the TV endless times a day to keep him settled. You made his stay bearable and tolerable against all odds and I know you will do it all over again in a few months when we are back to repeat it.

To the surgeon who worked on my son’s brain for six hours tirelessly unsure what you were going to see yet determined to find enough of that ‘something’ to biopsy and get answers. The scar you left has astounded many with how incredibly clean, well sutured and neat it is. You took great lengths to make sure you got everything you needed whilst carefully replacing the layers of my baby’s brain and skull. You then took more time to talk to me and show me what you had done and then met again with me weeks later to discuss the results. I could see your frustration when the results came back different to expected but your tangible relief in sharing it wasn’t cancerous made me realise how much you care about what you do. When you broke the news of the likely need for more surgery you did so with tenderness and care knowing this wasn’t something I wanted to hear.

To everyone who has messaged, prayed, supported me and my family, send cards, bought gifts for my children and hugged me as I cried: thank you. I could never have gone through this alone.

My son has been incredible. His resilience and determination has astounded me and I have faith he will get through this again when it all needs repeated to remove the tumour/lesion as best as they can in a few months time.

When you are part of the ripple in someone’s life it can be hard to see that your role, your part, is of any significance at all but everyone makes a difference. From the person making the phone call to the hand holder, to the person pushing the bed to theatre to the most qualified professional of all, we should never underestimate the role we have in helping someone else be the best person they can be.

Thank you to everyone who helped my son through his brain surgery and who will do it all again this summer. Without you all my son would not be loving life and loving me the way he does.

You had a role in saving a life. Be proud of yourself and know you are appreciated greatly.

Thank you,

From an emotional mum.

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The Shock Of Finding Out My Autistic Son Has A Brain Tumour

Two months ago I took my non verbal ten year old for a routine MRI under general anaesthetic. It was his fourth one in two years and we all knew the routine. Isaac is autistic with learning difficulties but his love of toy food and his enjoyment of his iPad meant we had found ways to support him through what was always and long and difficult day.

Very few autistic children ever need an MRI. Unfortunately Isaac also has a genetic condition called Neurofibromatosis Type 1 (NF1 for short) which means his body grows tumours on his nerves, and so two years ago an MRI was requested due to his inability to communicate pain or changes that were viral in monitoring his condition. Isaac’s neurologist wasn’t expecting to find anything suspicious so it came as a shock when three weeks after his first MRI I received a call from her to come up and see her the following day with the added request to ‘bring someone with you if possible.’ That gave me some idea that it wasn’t great news.

Two years ago we found out that Isaac has a developmental eye condition in his right eye which meant he very likely had little to no vision in that eye. They also discovered that his left eye had a tumour on the optic nerve which had been discussed with an oncology team and would be monitored. No-one wants their child discussed by an oncologist but I left feeling positive that at least there was no imminent treatment required.

Isaac’s next MRI six months later found more abnormalities but I was assured these were ‘consistent with NF1 and will continue to be monitored.’ Meanwhile Isaac continued to grow and develop and seemed well.

His next MRI was late due to his neurologist being on long term sick leave. By this point Isaac had rather suddenly started having seizures, first for a minute or so then very quickly turning into 4 and almost 5 minutes long with full shaking, vomiting, thrashing and foaming at the mouth. They were terrifying for everyone. It didn’t bode well for the results of his scan which showed an ‘emerging tumour’ in his right frontal lobe which was almost certainly causing his seizures. It took months but finally we found a medication which seemed to help, though it made Isaac very weak and caused other side effects that I was reassured would settle.

That was a year ago this month. Isaac’s neurologist went on to retire and there was a long wait to be seen by a new neurologist. He referred for another scan as this hadn’t happened and thus it was 9 months before Isaac finally had his next scan. This takes us to two months ago. By this point I was slightly concerned as Isaac had never really picked up since last summer and in fact he was more tired, his walking was worse, he was vomiting randomly and seemed very lethargic.

So here I was in the same day ward for the fourth time as my son yet again had general anaesthetic for a procedure that enabled us to gain more knowledge of what was going on in his body. What happened next turned our whole world upside down.

Three weeks after the MRI I had a call one Thursday evening while my children were eating dinner. It was Isaac’s neurologist apologising for the delay in me getting his results and saying that this was due to medical meetings to discuss his scans and that unfortunately they had found something concerning. My son had a growing brain tumour. A medical team including an oncologist and a neurosurgeon had been discussing my child without me ever knowing.

That night I was told my son needed an operation for a brain tumour biopsy and that the neurosurgeon or oncologist would call with a date to speak to me further and tell me more. Due to Easter weekend and difficulties scheduling a time when both the oncologist and surgeon were available it was two weeks later before I found myself in a cancer ward of my local children’s hospital being shown this scan of my son’s brain tumour and being told that he required a repeat scan urgently followed by an operation to remove some of the tumour for biopsy before possibly needing chemotherapy or radiotherapy. All the time my son was at school as if it was all just my imagination.

We then waited for a call and life seemed to be in limbo. The hospital struggled to find a date so at one point they wanted Isaac admitted indefinitely so that he could take advantage of any cancellation right away. Being autistic, and having an autistic sister and dad this would have made life impossible so it was a huge answer to prayer when I had a return phone call to say someone had cancelled and a day could now be set for Isaac’s repeat MRI.

He had that just 9 days ago. It showed his tumour had grown again so at 3pm that day I had a call to say Isaac was to be admitted to hospital the next day. While I amused and settled my complex needs child the surgeon explained that due to the position of the tumour and the possibility of needing a repeat operation he would need to carry out a much larger operation called a craniotomy and Isaac would be in surgery for some hours. He could not say wether he would recover, wether he would walk or play again or if he would even survive surgery. Signing permission was terrifying.

Isaac had a six hour operational to cut his skull open and remove some of his tumour for biopsy just a week ago. When he finally returned to the ward he would not regain consciousness and it was touch and go throughout that night if he would make it. It was Saturday morning before he woke, a much different child to the one who had went to theatre the morning before.

Isaac got discharged two days after his operation. Having him in hospital and juggling care for two complex autistic children was very very difficult and my whole family went through extreme trauma. It took until two days ago before Isaac could walk and stand unaided. His appearance changed drastically due to extensive bruising. He needed fed for several days as he could not even feed himself.

A week after surgery and he is recovering well. He can stand, walk, use his iPad and say two of the three words he had previously. He can self feed, see from one eye and is aware of much more than everyone expected.

In five days time we are due to get the results of his biopsies. He could face a repeat operation to remove the tumour or chemotherapy or radiotherapy. Or there may be nothing more they can do.

Life has changed significantly. It’s been a huge shock for everyone to find out Isaac had a brain tumour and then watching as he went through extensive and serious brain surgery.

The one blessing of it all though is that Isaac lives in the moment. He wakes everyday and takes on whatever comes his way with a determination, a tenacity and a resilience that assures me that regardless of his extensive communication and learning difficulties his love of life (and love of lifts) will see him through whatever the future has.

Until Wednesday I don’t know any more.

Tonight I am eternally grateful to kiss my son goodnight and hold him in my arms.

When Little Ears Hear More Than They Ever Should

Last summer I showed my then 9 year old how to answer my mobile phone. Her twin brother was having major seizures and she wanted to help me. I tought her to answer and when possible pass the phone to me. Despite being autistic she worked it out and did exactly what I needed her to every time.

She was proud of herself and felt like she was helping.

I was proud of her too.

In the last year she has started to answer calls on the home phone too and is doing a great job of saying who is calling and passing the phone to me when needed. It’s a huge life skill and one which she has been excelling at. Up until today though I had no issues with her answering any calls.

Today I was driving with just the two of us in the car. I was on my way to collect her friend with her for a play date. Not long before we arrived at her friend’s house my mobile phone rang and Naomi readily answered it. Unfortunately it was a call she should never have heard.

Naomi’s twin brother is sick, very sick in fact. He has a brain tumour and is about to have invasive surgery followed by treatment. While I have spoken to Naomi about this in ways she understands (she describes his tumour as slime in his brain) the phone call today was one she should never have heard. Apparently the call started by asking if it was the family of Isaac. Of course my daughter answered ‘yes’. The caller then said that Isaac was to come to hospital immediately to be admitted for an undecided period of time so that he could have some urgent tests and then surgery on his brain. I don’t in any way fault the hospital as they had no way of knowing they were talking to a ten year old but the things said in that call were not ideal for little ears.

The day before I had taken both my children to another medical appointment. This time it was a community paediatrician who had never met my children before. Both of my ten year olds had to sit though a very long conversation between myself and that paediatrician while I outlined my concerns about them both. While the conversation was necessary, once again it wasn’t suitable for little ears.

So many children with additional support needs are hearing things that little ears should never hear. They are in meetings when adults discuss concerns, missed milestones, social difficulties and medical issues about them all whilst their ears can hear. I’ve been talking to my daughter so much about this as I try and help her work through her issues but as she says even sitting in a waiting room isn’t ideal: ‘Even if I was outside waiting or in class it wouldn’t matter as I would still know I am being talked about mum.’

Children hear a lot more than we realise. They overhear phone calls, hear discussions of adults while they play and they hear when medical staff mention things. They hear above TV, YouTube and other background noises. They pick up vibes, atmospheres and worries. Sometimes they even answer calls you would prefer they hadn’t.

I’m trying to help my child process the fact her twin brother is ill but now I need to help her understand and process things she has heard that she really should be protected from.

What goes into little ears changes children. Some of those words become their inner voice, other repeat loudly like an echo for years to come and others affect their self esteem for the rest of their lives.

I’m not a huge advocate of sheltering children from life completely. I don’t think that helps prepare them for the world they will live in as adults very well. However I am a huge advocate of protecting little ears from things that they are not ready to hear yet because their minds are not fully ready.

Right now I am having to work through some difficulties with my ten year old because her little ears heard more than they really should have. Sadly I am not alone.

We put parental controls on technology to prevent little ears from hearing words we don’t want them too, we have children’s TV channels designed to protect vulnerable children from the adult world yet we put our most vulnerable addition needs children in situations daily that cause their little ears to hear more than they should.

Isn’t it time we thought of a better way forward?

How My Ten Year Old Showed Me About Autism

A week before my daughter had her fifth birthday I took her for an appointment at a local clinic. She can’t remember anything about that day at all but we left with life long diagnosis and a relief of knowing why my daughter was different. That was the day she was diagnosed autistic.

I don’t believe in hiding things from children. Children are way more resilient than we often give them credit for and they deserve to know about their own diagnosis if it is appropriate for them. I didn’t want my daughter growing up thinking she was ‘weird’ or ‘different’ as her dad grew up with those same feelings and it has really affected his mental health as an adult. Unfortunately he wasn’t diagnosed autistic until he was 59 and the not knowing and therefore not having access to support has affected him negatively for many years.

I wanted my daughter to grow up proud of who she is, autism and all.

I have never once sat down with either of my children and told them they are autistic. I have never talked about the ‘triad of impairments’, or sensory difficulties or how being autistic makes her vulnerable and different to others. Her understanding of autism has organically developed over time by living with a twin brother who is non verbal with learning difficulties and who is also autistic, experiencing her own autism daily and seeing how her dad experiences life differently to me as an autistic adult. Anytime she has had questions or concerns I have explained things openly and as simply as possible.

She has also watched me advocate for her, her brother and her dad. Meanwhile, in her mainstream class she has seen another five children receive the same diagnosis as her despite being very different. She has been exposed naturally to a wide spectrum of autistic people and non autistic people and this has allowed her to form her own opinions of what autism is.

So when I told her I was planning to make some autism pictures for autism awareness month she freely asked if she could do them instead. I listened to her ideas and instantly loved them and so thought April 2019 she set about to embark on a project that has opened my eyes to just how much she understands about autism and given me great insight into how she sees the world.

If you asked Naomi ‘what is autism?’ she would be unable to answer you. If you asked her ‘what is autism like for you?’ she would also struggle. But allow her to show you and her insight and awareness is truly remarkable. Without even knowing it she touched on all the main ‘features’ of autism from communication:

To literal thinking:

To the need for routine:

To sensory issues:

To sleep struggles:

From liking rules:

To needing to be alone:

From struggling with things (or being brilliant at them):

To feeling overwhelmed:

From struggling with choice:

To liking repetition:

From needing comforts:

To finding words hurtful:

From the need to finish things before moving on:

To finding bathrooms scary:

She even covered the seasonal issue of Easter since it landed right in the middle of awareness month:

Her pics were simple, effective and, other than her hashtag, had no other mention of autism. All she wanted to show was summed up nicely in her first ever pic:

So when I told her that hundreds of people were following her pictures and asking if they could keep them she chose to end with a little humour….

She found it quite amusing that the majority of people who wanted to ‘collect’ her pictures were in fact more like her than they perhaps realised.

At just ten she’s proud to be exactly who she is but she wants others to know and understand that while someone may be autistic you may be far more able to relate to them than you might think.

We might all be different but in so many ways we are just the same.

I could not be more proud of her.

Do you ever wish you could ‘switch off’ your child’s autism?

Sometimes I do.

When I just need to get bread and milk from the local supermarket and I’m tired, in a hurry and just want ‘in and out,’ I wish I could ‘switch off’ my child’s difficulties with the music, crowds, smells, his absolute NEED to see the lift and his inability to stay beside me safely. Just ten minutes without autism would make that task easier…for us both.

When he’s crying in pain and unable to communicate why or where it hurts. How frustrating and distressing that is for us both. I wish I could ‘switch off’ his communication difficulties just long enough for me to be able to understand and help him.

When I am attempting to make a packed lunch for a school trip and I’m in tears because ‘lunch’ to him means a hot meal and I know everything I make will be refused. Just a half hour meal with autism ‘switched off’ would be a blessing for me, but more so for him. I know he doesn’t want to be so rigid but he just can’t prevent it.

When there’s roadworks and I need to drive a different route. To watch his face screw up in disgust and confusion followed by the onset of tears and challenging behaviour is torture for us both. I wish we could ‘switch off’ autism, just during the journey, not forever.

When I need to get medication into him. Just one minute of autism ‘turned off’ would allow vital epilepsy medication to be swallowed so much easier. While things are improving it is often very challenging and distressing for everyone. Antibiotics leave us both traumatised.

Right now though more than anything I wish I could ‘switch off’ severe autism as we face a period of very challenging medical difficulties. My non verbal son has recently been diagnosed with a growing brain tumour. He needs multiple anaesthetic’s and a brain tumour biopsy followed by possible treatment that will be invasive, challenging and intensive. I want him better; he needs to get better. The alternative isn’t something anyone wants to think about. . The presence of autism complicates even the simplest of procedures and we don’t have the time to ‘mess about’ right now.

Time is not on our side so having three months of acclimatising to new surroundings isn’t an option. Printing visuals of all the doctors we need to see, making timetables of when they will be seen and watching videos of procedures before hand to prepare my son just aren’t options any longer. I can’t just say ‘I couldn’t get him out the car’ to his neurosurgeon when they have theatre all prepared and scheduled for a brain biopsy. When appointments suddenly need changed due to things progressing fast I can’t say to specialists ‘well it’s not on his timetable so he won’t cope.’ ‘Sorry he stayed awake all night again as usual last night so we need to sleep today’ just isn’t an option when there’s an MRI machine booked for yet another scan, or nurses waiting to run more tests. There’s no option to say ‘don’t worry about his meltdown. I’ll just sent out another appointment in six months and we’ll try again then’.

We haven’t got time to put any communication device in place for my non verbal child any more, not that he has taken to any in the last ten years anyway.

Medically we are facing a crisis and severe autism doesn’t ‘do’ crisis. My son doesn’t do ‘sudden change’ or even just ‘change’. He doesn’t cope with new people, new places, being touched, sitting still while people talk, having needles put in, waiting around in clinics, or even having a simple plaster on!

I fully accept and love my son, autism included. I’ve never had an issue with flapping, watching the same thing lots, communicating in his own unique way or even needing routine. In fact I’ve developed strategies, patience, and understanding and I really wouldn’t want him any other way.

But I would be lying if I didn’t say that right now, in the middle of medical difficulties that can not be ignored or delayed, I would not love to ‘turn off’ autism just for short periods of time to make things easier for him, and also for me.

Autism can be a blessing and it isn’t something I hate but it can also make life challenging and right now we have enough challenges to face treating his brain tumour and we could do without the struggle just to get him inside a new hospital or the inability to wait for his name to be called and the terrifying fact his autism means he can’t communicate when or where something even hurts.

I thought in the past I’d like little moments of being able to switch autism off but right now I’ve never wanted that ability more. Autism is making an already challenging situation so much harder, not just for me but for my son. I’m not wanting my son to be non autistic just less rigid, less anxious, less ‘stuck’ during a time when co-operation, flexibility and communication are vital.

99% of the time I have time to do what he needs to help him. Unfortunately right now we are living in that 1% and I can not even adequately express how much simpler things would be right now without the added issue of severe non verbal autism.

Have I ever wanted to switch autism off? Right now for my son’s sake…yes! Most of the medical staff treating him would probably agree with me too.

Is Autism Awareness Helping My Autistic Daughter?

April is fast becoming synonymous with autism awareness now. The media cover it, charities promote it and even schools use it as a time to raise the profile of a condition that is guaranteed to affect several pupils, if not more, within their school. I’ve heard of everything from pyjamas days, sky dives, videos, poems and various hashtags circulating, all in the name of ‘autism awareness.’ I’m not against any of this and in fact my own daughter asked me herself if she could do something this month to raise awareness of the very condition that she lives with. I encourage her self advocacy so I’m using my own Facebook page (https://m.facebook.com/Faithmummy1/) and my personal profile to share her daily photographs on her behalf, since at ten she isn’t even old enough for her own social media account.

However, I don’t allow my daughter access to social media at ten and even more so during the month of April. The reason for this is because not all autism awareness is helpful for her. Here are some examples:

1. When people say they ‘brought awareness’ when actually referring to meltdowns.

It’s very common for me to see statuses saying things like ‘well we sure brought some autism awareness at the restaurant today’ which really means their child causes a scene of some sort, most likely due to a meltdown. Now I have a non verbal son who also has significant learning difficulties and who is classed as severely autistic. Meltdowns are common place both in private and public. However, my daughter is also autistic and she doesn’t have private or public meltdowns. She does shutdown which is a very different experience altogether, though rarely would the general public even notice.

By referring to meltdowns as autism awareness we are reinforcing to the public that autism only looks one way: it is loud, disturbing, obvious and upsetting. This isn’t how autism is for my daughter, nor it is how it is for everyone. Awareness like this isn’t helping my daughter to be included, accepted or understood.

2. When awareness becomes about colour, logos and individual charities.

Autism awareness isn’t a brand. It has no set colour, image, logo nor it is exclusive to one charity. I have seen people fall out over the colour they change their profile pic to during April in the name of awareness. How is that helping people understand my daughter better? My daughter is unique, individual and original and as she herself tells me often ‘it’s ok to be different’. Yet during the month of April we expect everyone to bring awareness using the same colour, logos, or charities. When awareness highlights divisions and friction it shows the public that autism is disjointed, argumentative and oppositional. None of those reflect my daughter in any way.

3. When autism focuses solely on difficulties.

My daughter is very aware of her struggles, however, even at ten she will tell you that not all her struggles are due to autism. She struggles to find footwear to fit her narrow feet, which even she knows is about her physical stature and unrelated to her neurological differences. Unfortunately the very diagnostic criteria for autism talks about deficits which makes explaining what autism even is quite difficult without being overly negative. I freely admit that when my son was diagnosed I did mourn and see his autism as a tragedy. As I learnt more, understood him better and learn to communicate the way he understood I changed. Now I delight in telling random strangers when he is flapping, giggling and smiling at lifts that ‘this is due to autism. It bring him and so many others delight.’ My son has significant difficulties and will need life long care but the public can clearly see that without me having to share. What they may not know is how excited he gets about mashed potato or lifts or certain songs.

When we focus on the struggles we are telling the general public that autism is something awful to fear, some terrible condition that afflicts sufferers and something we should be looking to cure. If my daughter could read some of the things said in the name of awareness her self esteem would plummet, she would become very self conscious and her anxiety would soar. I’m trying to help her see herself as amazing, wonderful and clever and I’d love the world to see that about her too.

So how do we do bring awareness in a way that really helps children like my daughter?

I can’t tell anyone how best to bring awareness of something that might affect them in a very different way to how it affects me. Autism can be hard, it can come with meltdowns and it is healthy to have different opinions on organisations, colours and logos. However, one thing we all need to do is stop and think about the bigger picture: is what I am doing helping the public to understand, accept and include everyone with autism? Am I bringing a balance? Would my child be comfortable reading what I have written about the condition they live with?

My daughter is ten. She attends her local mainstream school and she not only knows she’s autistic but she loves sharing her own unique views with the world. She couldn’t care less what colour you chose or what organisations you support. She doesn’t want the public to just know about her struggles, nor does she want everyone to assume she will have public meltdowns.

She’s just quietly, respectfully bringing awareness in her own way, and showing that despite all the arguments and negativity there is a different, more peaceful, way to advocate and bring awareness.

Autism is a huge spectrum affecting people of all nationalities, races, religions, sexes and ages. It’s vital we raise awareness but we need to do so in a way that not only helps my daughter but the many millions of others like her too.

Here’s how she is bringing her own awareness by using photographs.

When Something Isn’t Right And Your Child Can’t Tell You

It’s Monday morning and I’m trying to dress my non verbal ten year old while he screams at me and makes it abundantly clear that he isn’t wearing uniform today and he doesn’t want to go to school. I persevere, despite his protests, and remind him gently that ‘today is Monday. First school, then home’. I know he understands but he still clearly doesn’t want to go.

His transport arrives and with a LOT of persuasion he finally accepts the inevitable and off he goes to school.

Half an hour later here I am sitting drinking a cup of tea and secretly congratulating myself that I made it through another Monday morning and I got my son to school despite his protest.

But then, with my warm cuppa still in hand, I read this online and I gasp audibly.

https://www.heraldscotland.com/news/17510158.parents-kept-in-the-dark-over-teacher-struck-of-for-force-feeding-toast-to-autistic-boy-at-south-lanarkshire-primary/

What if my non verbal son was trying to tell me something wasn’t right this morning and I didn’t listen?

This story hit home because I know of the school, but even more personally I know one of the families. The cover pic above was a picture that appeared on my social media the day it happened. I cried the day I saw that pic, and years later reading what actually went on to cause the bruises, I am crying again. That child could have been mine…same age, same diagnosis, same location, both non verbal. I have used the photograph with full permission from the family, who quite rightly, want people to see the damage that was caused.

While the full story isn’t mine to tell what I can say is that even with obvious injuries, parents who were proactive and highly concerned, and professionals keen to support, it has taken four years to get this case to the point where the teacher has been struck off for six months. When the child came home from school looking like he did above both parents immediately knew something serious was going on, but when your child can’t communicate and doesn’t have the cognitive understanding or social ability to know when something isn’t right where do you start?

For years my friend faced every school morning the same way I did, and she too would remind her son ‘first school, then home.’ We are both, sadly, used to seeing our son’s struggle and we believe professionals and schools when they tell us ‘everything is fine’ and ‘our children are just wanting to stay home because it’s an easy option’, or ‘they are struggling with the transition or sensory difficulties’.

There was far more damage done than bruises to my friend’s son’s face. Four years later he is still on medication for anxiety and it took over two years to get him him to go into school happy again. It’s taken multiple amazing teachers and support assistants to undo the damage one teacher caused. The damage to the trust of the parents will last forever.

The abuse didn’t start the day the child came home covered in bruises. For months the child screamed and withdrew and refused school yet, just like I did this morning, they encouraged and persuaded their child to go anyway. The guilt of that can not be measured.

The authority may have apologised to the family but it has taken four years to get any sort of justice, though a six month suspension doesn’t feel like justice for what they went through. In that four years the family had no idea of the true extent of what went on until the case came to the general teaching council for consideration. Not only could their own child not communicate the full account, but those that could have told them chose not to until they finally heard in a courtroom four years after the event.

Children like my friend’s son, and my own son, are among the most vulnerable in society. They are transported to schools miles from home, unable to say if they are injured or even shouted at. When they have challenging behaviour we are told ‘it’s all part of their condition’ and when they don’t appear to want to go to school we are told to push them, cajole them and persuade them.

But what if something isn’t right and your child can’t tell you? What if your intuition tells you things are not all they seem?

My intuition told me this morning that my son had just enjoyed a weekend at home eating his favourite foods and watching what he wanted on YouTube and he didn’t want that to end. Despite my gut telling me he is ok at school there will always be that nagging feeling that perhaps everything isn’t as I hope it is.

I don’t ever share stories like this because I am not an advocate of spreading fear However, this goes way beyond that. There are lessons here for everyone.

1. Schools who are privileged to have our most vulnerable children need to make sure they have everything in place to safeguard them. Staff who whistleblow must be given protection. As parents we need to know there are adults who genuinely care for our babies.

2. Parents need to trust their own intuition. If something seems ‘off’ never dismiss it.

3. Parents must be listened to…by everyone. There is too much at stake not to.

4. Schools, authorities and investigators must stop hiding the truth from parents.

5. As a society we need to take the responsibility seriously for making sure the most vulnerable, especially those who can not communicate, are looked after. If you witness abuse report it, always.

I made some silly excuse today to drive the 14 miles to my sons school to unexpectedly call in. I just needed to do so for my peace of mind. I peeked into the class where he was smiling, engaged in an activity he was enjoying and the room was highly staffed.

He’s fine, but so many others aren’t.

If you have concerns that your child is being abused in any way, wether in school or anywhere else, speak up. Contact professionals involved with your child, contact the police, gather evidence and information and inform the management of the school immediately. Have everything in writing and find organisations who can support you.

It’s vital that cases like this are talked about ,though it must be stressed that things have now changed in the school concerned and the vast majority of people working with children like my son, and my friend’s son, are amazing and kind.

Sadly as a parent to a childI with high support needs who is non verbal I will always have that worry:

What if something isn’t right and my child can’t tell me?

With thanks to the family involved for their bravery in allowing their story to be shared.