Benign Tumours Are Not Harmless, Innocent Or Fine

Back in May my non verbal ten year old son went for a routine MRI scan because he has a genetic condition called Neurofibromatosis Type 1 (NF1). What happened next changed my entire family. A few weeks later I had a phone call from my son’s neurologist to say they had found a brain tumour and after discussions with a neurosurgeon and oncologist he had major brain surgery a few weeks later. My son was admitted to hospital and underwent a six hour craniotomy operation for a brain tumour biopsy. He had a long recovery.

Results came back that his tumour was ‘benign’ so I looked up the word and breathed a huge sigh of relief. According to the dictionary that meant his tumour was ‘harmless, innocent, superficial and innocuous’. Fantastic!

Except it wasn’t.

As his surgeon later explained it actually doesn’t matter wether a tumour is benign or cancerous as, especially in the brain, they are just as dangerous and cause major effects.

My son may need chemotherapy at some point. He may need further surgery. His tumour caused him to be epileptic, vomit, have visual difficulties, lose balance, be very lethargic, and be very unwell.

Benign isn’t fine and never will be.

We need to rethink urgently what benign means.

Having a benign tumour isn’t fine for Joe who has had two years of chemotherapy and is now almost blind.

Having a benign tumour isn’t fine for Tayen who is now on her fourth round of chemotherapy, epileptic, and is completely blind just to name a few of her very complex needs.

Having a benign tumour isn’t fine for Evia who is also blind and has had two years of chemotherapy.

Having a benign tumour isn’t fine for Logan whose tumours in his neck, throat, heat and arms are so aggressive surgery is no longer an option leaving him with lung disease, epilepsy, learning difficulties, scoliosis and hypotonia.

Having a benign tumour isn’t fine for Ella who has endured major surgery on her spine.

Having a benign tumour isn’t fine for Ronnie who has had chemotherapy and now has vision loss.

Having a benign tumour isn’t fine for Isobel who has a tumour in her head mouth and cheek and is blind in one eye and facially disfigured.

Having a benign tumour isn’t fine for Harley who has had two operations, 7 general anaesthetics, 5 MRI’s and chemotherapy.

Having a benign tumour isn’t fine for Jon-Paul who is in chronic pain daily with a tumour on his ankle.

Having a benign tumour isn’t fine for Heather who has had her leg amputated below the knee die to a tumour.

Having a benign tumour isn’t fine for Ruby who has endured surgery and 18 months of chemotherapy for a brain tumour.

Having a benign. Tumour isn’t fine for Dan who has had chemotherapy, sepsis and has vision and hearing loss.

Having a benign tumour isn’t fine for Harvey who needed brain surgery.

Having a benign tumour isn’t fine for Kiki who has had chemotherapy for a brain tumour.

Having a benign tumour isn’t fine for Kearyn who has vision loss.

Having a benign tumour isn’t fine for Teagan who also has had chemotherapy as vision loss.

Having a benign tumour isn’t fine for Elayna who is having brain surgery next month.

Having a benign tumour isn’t fine for Shay who has had two brain tumour surgeries so far.

And finally having a benign tumour isn’t fine for Evie who has operations to remove her tumours resulting in a facial nerve being severed and loss of hearing.

Are any of these cases ‘harmless, innocent, superficial and innocuous’? Is that how you would describe what my families and all these other families have been through and continue to go through?

Tumours related to NF1 May be benign but that doesn’t mean we can ignore them. Benign tumours cause pain, damage, deformities, disabilities and can kill.

For the sake of my son and all the thousands of other families living with benign tumours, wether NF1 related or not please can we redefine what benign means and stops giving the impression that benign tumours are ‘fine’.

They are absolutely NOT fine.

Please support the Childhood Tumour Trust campaign using the hastag #BenignIsNotFine

For more information please see http://www.childhoodtumourtrust.org.uk

Thank you.

Six Years On: How Has Having A Diagnosis Of Autism Helped?

According to my Facebook memories it is exactly six years today since my daughter was diagnosed. She was 4 at the time and had been going through the process of diagnosis for over a year by the time her appointment came.

I recently heard a parent of a child suspected of being on the spectrum say they would never look to get their child diagnosed as they didn’t wish them to ‘be labelled.’

So how has having my daughter diagnosed helped?

Firstly it helped HER.

This is by far the most important point. My daughter is able to accept herself, understand herself and find her ‘tribe’ by having an identity and knowing that while she may be different she is far from alone. Her mental health was one of the biggest reasons I sought for a diagnosis. There is no shame is being autistic and I seek to promote her autism as part of her wonderful, unique and beautiful personality. It is who she is and she embraces that.

Secondly it helped HER EDUCATION.

By having a diagnosis her anxiety is recognised and supported. Her selective mutism is understood and not ignored. When she takes language as literal teachers can see she isn’t being cheeky or naughty but it is a genuine processing difference. Her social differences are understood and can be supported. Her strengths can be celebrated and her struggles supported. Sadly without a diagnosis some services could not be accessed and therefore support could not be put in place. Having a diagnosis brought patience, understanding and help that she would otherwise have missed out on.

Finally it helped ME.

I am still the same parent I was before but now my mental health has improved making me a stronger and happier person. We are too quick to forget how much parental mental health can affect families. When parents feel they are to blame for their child’s difficulties, anxieties and struggles they become defensive, depressed and isolated. Unfortunately parent blame is rife without a diagnosis as it is assumed the child is struggling through poor parenting. This is very rarely the case but it has destroyed so many families when diagnosis is delayed or withheld. I am more able to embrace my child, celebrate her and enable her because I understand her better and no longer carry the burden of guilt that I am to blame.

Naomi’s diagnosis report is very different to the child she is five years later. Her autism now manifests in very different ways but she is still autistic and both of us celebrate that fact daily.

Autism hasn’t stopped her succeeding, in fact in many ways it has helped her. She’s a rule-abider, people pleaser, unique and funny individual who accepts her own quirks and is happy being herself. She has struggled and even added ‘extra’ diagnosis over the years including an eating disorder but in the six years since her autism diagnosis she has won several awards, been on prime time TV, fought and won for a disabled swing in the local park for her brother and even written some incredible blogs about her own struggles.

Would I still want her diagnosis today if she wasn’t already? Absolutely!

Diagnosis isn’t anything to fear, it’s a key that helps you understand and access support. It doesn’t define your child it just enables them to be free to be exactly who they are.

If you are worried about your child’s development do seek advice from your GP, health visitor or child development team. It is in everyone’s interest to support and diagnose where necessary.

Are We Diagnosing Learning Disability Often Enough?

Over his ten years of life so far my son has ‘collected’ a fair list of diagnosis. First he was given ‘severe autism with global developmental delay’, then six months later the genetic condition ‘Neurofibromatosis Type 1’, then a few years later two complex eye conditions, a year later a third eye condition (a tumour on his optic nerve), two years later epilepsy and in the last few months cortical dysphasia which at first appeared to be a brain tumour! Every one of those diagnosis was given by medical professionals, geneticists, therapists and neurologists. Yet one diagnosis seemed to just ‘happen’ over time that everyone knew about yet no-one spoke about: learning disability.

I knew my son was ‘behind’ others from as young as a few months old. He was ‘late’ to hold his head, give eye contact, respond to his name, speak, interact with his environment, crawl, walk, use a spoon and so on. There wasn’t anything in fact that he wasn’t late at. Before he was even two years old I was told verbally he had the woolly and hopeful diagnosis of ‘global developmental delay’. Wether intentional or not it very much gave the impression that one magic wonderful day my son would suddenly ‘catch up’ with everyone else and all would be perfect. When autism was talked about that became the ‘dominant’ issue and the global delay was rarely mentioned.

Until suddenly without anyone saying anything I received a standard letter from an appointment listing my son’s diagnosis and on it I read ‘learning disability.’ There was no appointment to diagnose, no waiting list to join and no discussion. His ‘global developmental delay’ just magically changed to ‘learning disability’ and that was it.

Yet for so many others that two worded diagnosis seems to never be mentioned. Why is that?

Party it seems to be due to an increase in genetic knowledge. We can now break down genes to an amazing level and more and more children and adults are being diagnosed with rare genetic conditions. While these conditions remain rare it is common for all ‘symptoms’ including learning disability to be generalised under the umbrella of the genetic condition. While years ago the opposite may have been true and the person had a general learning disability now we see the genetic abnormality to be the cause and therefore often lump everything under that one diagnosis. Perhaps as more people get diagnosed with the same genetic conditions we may find that not everyone with that condition actually has learning disabilities and therefore adding ‘with learning disability’ would be a more helpful addition to any genetic diagnosis.

Another reason seems to be the increase in autism diagnosis. I see more and more children diagnosed on the autism spectrum who do have clear learning disabilities but who can not get the latter diagnosed because of a (wrong) assumption that ‘it’s all part of autism’. Yet according to the National Autistic Association, the leading UK charity for autism here are the facts:

Between 44% – 52% of autistic people may have a learning disability.

Between 48% – 56% of autistic people do not have a learning disability.

Autism, on its own, is NOT a learning disability.

Autism, according to Wikipedia is described as follows: ‘Autism is a developmental disorder characterized by difficulties with social interaction and communication, and by restricted and repetitive behaviour. Parents usually notice signs during the first three years of their child’s life.’

Where as ‘learning disability’ is described by Mencap, the leading charity for people with learning disabilities as: ‘A learning disability is a reduced intellectual ability and difficulty with everyday activities – for example household tasks, socialising or managing money – which affects someone for their whole life.People with a learning disability tend to take longer to learn and may need support to develop new skills, understand complicated information and interact with other people.’

Mencap goes on to say that around a THIRD of people with a learning disability may also be autistic. By default that means two thirds are not.

Autism and learning disability are two very different conditions.

I am thrilled that we are progressing with genetic knowledge and diagnosing more and more genetic abnormalities and differences. With knowledge comes power. I am also delighted that we are becoming better at picking up both children and adults who are autistic. But I do hope we continue to make sure that everyone, like my son, gets a diagnosis of learning disability when necessary because without it we are denying both present and future support (it’s a life long condition), limiting educational support, and leaving children and adults feeling failures because they don’t understand why they are struggling.

Oh and let’s not only make sure we continue to diagnose learning disability when necessary but let’s make sure more parents, professionals and medical experts explain that global developmental delay is unlikely to mean ‘catch up’ and actually is just a fluffy pre-diagnosis to learning disability.

Let’s tell people the truth. There is no shame in learning disability so why hide it?

My son isn’t hiding his learning disability and neither should anyone else.

What My Ten Year Old Taught Me About Learning Difficulties

A few months ago my ten year old daughter said something that changed the entire way I look at learning difficulties. I hope it will make you think too.

I remembered it was a Wednesday because that’s the day that clinic is always on. I had picked my daughter up early from school as she had an appointment to see a specialist. My daughter attends mainstream school where she is thriving even though she is autistic, has an eating disorder and anxiety. Coming out of school for appointments is a regular occurrence and this specialist was one she had been seeing for six years. I wasn’t expecting anything significant to happen as that day was just a regular check up.

I was right; the check up went as expected and there was nothing significant to report…well nothing significant about the appointment that is.

What I didn’t expect to happen was the conversation in the car on the journey there. Who knew that a ten minute conversation could leave a lasting impression that has radically changed my thinking!

The journey started off quietly. My daughter is so anxious in school she doesn’t speak (a condition known as selective mutism) and sometimes if I pick her up from school during the day it can take a few minutes before she chats freely. I always carry on and let her talk when she feels ready, if she even wants to that is.

I pulled out of the school car park and headed to the clinic. I was at the second set of traffic lights when she started talking. Out of nowhere she asked a simple question:

Mum, do I have learning difficulties?”

As I drove I answered her question as honestly and as simply as I could. I have a background in teaching and thought I had a good knowledge of what learning difficulties is so I told her that we usually class learning difficulties as a struggle with academic things like maths, reading, writing and understanding what people say. She thought about that for a brief moment and then checked her own understanding by listing a few children she knew from her class, also including her own brother who attends a different school and who has severe non verbal autism, who she thought fitted this description. Knowing her class well from volunteering in her school I was able to confirm to her that, yes, all the children she had mentioned, including her brother, did in fact have learning difficulties.

As I concentrated on the road ahead I wasn’t expecting her next comment at all.

Mum, I don’t like the name learning difficulties.

I had to ask her why. She was ready to answer right away.

“Well I struggle with some things but people think I am clever just because I can read and write, but all those children I mentioned are clever too. I mean my brother can use google street map, My friend knows loads about superheroes and my other friend is great at building Lego. So why do people say they have learning difficulties just because reading or counting is hard. That’s unfair.”

I was so glad I was just pulling into the parking at the clinic because what she had just said was so powerful I needed her to say it again.

‘Naomi can you say that last bit again please?’

“Ok mum. Why do people say my friends and my brother have learning difficulties just because reading and counting is hard for them. I think that’s unfair. Don’t we all struggle with something?’

I let her words sink in before I even turned my engine off. I couldn’t actually believe that I had never thought about it that way before.

It took my ten year old to shake up my beliefs. She doesn’t see any of her friends, or her brother, as different. She recognised that everyone struggles with something, after all even though she could read and write and count well here she was attending a clinic because of something she struggled with. Why wasn’t her issue classed as learning difficulties when her friends and brother’s struggles were?

Children can teach us so much if we let them. What my ten year old taught me about learning difficulties is something I will never forget.

It isn’t fair to judge anyone by their struggles when every single one of us struggles with something. We really aren’t any different to anyone else.

Thats powerful. I had no idea my ten year old could be so insightful.

Three Things I Have Learnt About Children’s Speech From My Non Verbal Son

I thought I knew a fair amount about how children learnt to talk. I knew they watched their caregivers, mimicked sounds and eventually words, and over time those build up to two word sentences, then perhaps phrases, and finally fluent speech. I knew some children spoke a little later than others and some were a little harder to understand but until I had children of my own it never really occurred to me that some children never learn to speak at all.

My son is almost 11 and he still can’t speak. I never knew that was even possible but in the long journey I have been on since he came into my life his lack of speech has actually taught me so much about children’s speech in general. All my assumptions and generalisations were in fact ignorance based on nothing more than limited experience and lack of knowledge.

It’s amazing how having a child who struggles with something others manage seamlessly can make you learn!

So what has my non verbal child taught me about children’s speech?

Through him I have learnt that:

1. Speech is actually not the most important thing after all: communication is!

I was so caught up with panic at the fact my toddler didn’t say any words that I hadn’t noticed how he was communicating! His eyes, his body language, his facial expressions, his noises all communicated in ways that words couldn’t. He had, and still has, ‘happy noises’, ‘agitated noises’, ‘tired noises’ and ‘excited noises’ and by understanding and responding to them we can communicate really well despite a complete lack of spoken language on his part.

We (notice I had to do it too to teach him not just him) have experimented with using objects to communicate, photographs, picture cards, drawings, pointing, and sign language. He didn’t immediately latch on to any particular one but he can sign ‘yes’ and ‘thank you’, he does point now and again and in the end he developed his own very unique means of communication using google street map. What he lacks in spoken language he more than makes up for in ingenious ways of getting his point across in other ways.

2. Lack of speech doesn’t mean lack of understanding.

Receptive language and expressive language are two very different things but until I had a child who can choose his own dinner, follow a simple instruction and get his shoes when I mention I am going to the shops, but who couldn’t actually speak to me I had no idea this was normal. My son isn’t deaf. He hears everything said which unfortunately isn’t always a good thing because when I say to anyone he can’t speak most people then seem to talk to me and completely ignore my son. Even worse are comments like ‘that’s a shame’, and ‘I’m so sorry’ like my son has some awful infliction when he just happens to be non verbal.

My son does have learning difficulties but even taking that into consideration his ability to understand is years above his ability to talk back. The lack of spoken language doesn’t always mean learning difficulties though and given other ways to communicate many non talkers have shown they can gain degrees and pass their driving test and achieve in ways many thought impossible.

3. Having a child who struggles with any aspect of speech is not the fault of the parent.

Did you know that the first thing that happens when you finally get a referral accepted by speech and language therapists is that they send you on a parenting course? The message very much seems to be (wether intentional or not) is that the parent is somehow at fault. My child isn’t non verbal because I am an awful parent. Contrary to what many think my son has books read to him daily, I talk to him all time, I sing nursery rhymes,, he has experienced language enriched environments from birth and he couldn’t be loved more. He just doesn’t talk.

I’ve been through the guilt questioning what I did wrong. I’ve felt the judgement of others and often still do. I know that pitied look when a stranger talks to my child and I explain he can’t speak.

When your child doesn’t master skills other children do there is a feeing of isolation, failure and despair that you are in fact the world’s worst parent. That is, in fact, so untrue. If anything the opposite can often be more accurate as parents over compensate for their child’s struggle by taking time to attend courses, do research, and buy all sorts of resources to give their child the best chance to succeed. My experience of families with a child who struggles in any way with speech is that they move heaven and earth to support their child and go above and beyond. Having a non verbal child is very very rarely due to neglect.

My son is amazing. He is funny, clever, excitable, affectionate and fun. He just happens to be unable to speak.

His inability to form spoken words has actually taught me more about speech than I ever thought possible.

You don’t always need words to communicate anyway.

When Special Needs Parents Are Told: ‘We don’t have money for that!’

Earlier this year my son became very ill. A routine MRI carried out under general anaesthetic found a large area of concern in the right frontal lobe of his brain. He underwent 6 hours of brain surgery where a segment of his brain was removed for biopsy and it took months for him to recover. Add in the fact he has severe learning difficulties, severe autism, epilepsy, a progressive genetic condition and he’s not able to speak and might you understand why I was extremely concerned about his return to school last week.

It wasn’t until two days before school was due to start back that I finally heard about his transport arrangements, and when I did I immediately felt sick. I had just spent three months caring for him since his operation, and over ten years caring for him before that ,and I knew instantly that the arrangements to get my child to school were unsafe and put him, and others, in danger. Yet despite numerous calls, emails and letters, plus the backing of medical professionals and social work later and I was faced with the decision to either put my son in that multi occupancy vehicle or keep him home. Taking him myself isn’t an option due to distance, the fact I have another child and the fact it is logistically impossible to be in two places at once.

Why were my son’s medical, development and mental health needs ignored in favour of the cheapest option? Because, as I was told numerous times when I requested single occupancy transport,: ‘We don’t have money for that!’

Now I get that my son is costly. In the last six months alone he has had thousands of pounds of medical treatment free on the NHS including scans, tests, appointments, consultations and brain surgery. He’s had a hospital stay with twenty four hour nursing staff. Everyday he has very expensive anticonvulsant medication just to keep his epilepsy under control. He was issued a wheelchair free of charge and he receives incontinence products delivered to the home at no cost. No-one ever once said they couldn’t treat his brain mass that was making him ill because ‘we don’t have the money for that!’ No-one has ever said he can’t see his neurologist or neurosurgeon or any other specialist due to cost.

Yet all his medical and communication needs can be ignored in favour of the cheapest bid when it comes to school transport?

Then there is trying to ensure he has an assistant with him at all times in the school day. Apparently my local authority don’t allocate named one on one staff preferring the cheaper option of general classroom assistants to help wherever the schools feel necessary. Why? Because it’s best for the children, ensures every child’s needs are met and gives them the best chance of success while being kept safe? No! Because it’s the cheaper option.

Despite being non verbal at ten my son hasn’t received any input from speech and language for years. He’s never been assessed or offered an alternative communication device that could help ease his frustrations. Why? Because of lack of money!

I list so many more times when I have been told that what my child needs in order to be safe, nurtured, included, and able to achieve isn’t possible…because ‘we don’t have her money for that!’

I haven’t ever met one parent of a special needs child (or children) who hasn’t been told at one point or other ‘we don’t have money for that’ wether it’s respite, educational support, sibling support, mental health support or adaptation to their house.

‘Lack of funds’ is the single most given reason why families with special needs children struggle. It’s what affects the mental health of parents (and children) the most. It’s what deprives millions of opportunities, vital support and independence.

Yes there isn’t an infinite amount of money in the world but should the most vulnerable in society be the ones to suffer?

When you tell me ‘we don’t have he money for that’ what you are really saying is my child doesn’t matter. His safety doesn’t matter;his welfare doesn’t matter; his life doesn’t matter. You are saying society doesn’t care.

Everyone has potential. Every life matters. Should there be a cost attached to vital support? What if that was your child put at risk?

What if someone said to you that you didn’t matter, you were not worth investing in, you should just accept what is given wether it meets your needs or not? Would you accept second best because someone said ‘we don’t have money for that’?

There are too many children with needs being put in school transport that is unsuitable, unsafe and transporting them for way over the government guidelines of time just because their parents are told there is no money for any other option.

There are too many children struggling in education, having to be withdrawn because of inadequate provision and placed in mainstream when it isn’t right all because of lack of funds.

There are too many families denied vital respite putting lives at risk all because of lack of money.

There are too many children and young people denied access to support such as speech and language, mental health workers or occupational health all because of cutbacks.

Our children matter. Our young people matter.

You can’t put a cost on the importance of a life.

My child deserves so much more than your glib and thoughtless comment of ‘we don’t have money for that!’

Your child deserves better too.

Can We Take Autism Acceptance Too Far?

My husband is autistic. Both my children are autistic. I am a huge advocate of autism awareness and acceptance. However I am also a realist and deeply honest and something that has been worrying me more and more is the fact that we seem to be moving perhaps too far in our pursuit of autism acceptance and I am now wondering if the scales are now tipping too far the other way?

What do I mean?

Well for many years the voices of autistic adults were ignored and suppressed. In more recent years, thankfully, this has been changing and some of the most successful advocates for autism are now autistic adult self advocates. This IS a good thing and I don’t want us to stop hearing from autistic adults. I have learnt so much from them and I would love my own daughter to emulate some of them as she matures and grows.

However, there is a balance and with the growth of self advocates there has been a real suppressing and abuse of parents of autistic children (and adults) who have been threatened and bullied because their thoughts seem to clash with the autistic self advocates.

You see autism is a very different experience for different people. For some adults it is just seen as a different way of thinking or a unique way of looking at the world and for them that is absolutely fine and right. Then there are parents, like myself, of children who may never talk themselves and who have extremely high care needs and require round the clock care, diagnosed with the same condition, yet living very different lives. For those families, and I say families because it affects everyone not just the autistic child or adult in these cases, autism is a huge disability and they have a right to voice that too.

Here is a good example of how things have changed:

Six years ago when my son was just four, screaming all day, smearing, non verbal, still in nappies and attacking me I would read posts on support groups which read ‘Help My child is always in meltdown, attacking me and stimming. I’m exhausted and struggling.’ I could identify and I would say so. So many others said similar and the person posting was validated in their struggles while a few would give some ideas of things that had worked for them. Everyone wanted to help both the child and the parent but at no point was the parent made to feel awful for struggling.

Fast forward six years later and the same post in the same group gets very different comments because things have changed. We have been told by autistic adults how much they need to stim and how we need to accept them for exactly who they are and embrace their differences. While that is absolutely right it has also lead to parent bashing and now the same parent gets comments such as ‘how dare you make this about YOU!’ They are called a martyr mum for struggling and some even go as far as to threaten to report them for abuse claiming the child is struggling because they are such an abusive parent. What then happens is the parent feels worse than ever, even less equipped to support their child and even more isolated than before.

Then there is the cases of genuinely concerned parents desperate to help their struggling children asking about therapies in order to help their child make friends, communicate better or cope better in school and they are jumped on by autistic adults who were damaged by certain therapies as a child and who say the parent isn’t accepting or loving their child as they are because they want to change them.

We are fast reaching a point where parents are no longer allowed to be human, or ask for support or want to help their autistic child. We are no longer allowed to mention anything that even hints that our child struggles or that they have any difficulties or we are accused of ableism.

Apparently I am not politically correct and ableist by saying my son has severe autism, he is non verbal at ten, not toilet trained and has the academic ability of a baby. However that IS exactly what he has. He has low functioning autism and his reports even state ‘severe mental impairment’. Stating that he won’t get married, have children, live independently and need 24 hour support all his life is suddenly taboo and offensive because his autism is just a different way of looking at the world and nothing more. According to some self advocates I should have my son removed from my care because I dare to say his autism is a disability. Apparently none of his difficulties are actually his autism and all other conditions. They say my attitude is what disables him and not his autism.

We need the voices of autistic adults, as parents we need to know what to avoid and how best to support our children BUT we need to also be allowed to struggle too. The seesaw of acceptance has to swing both ways.

For a long time parent voices out weighted those of autistic self advocates and that was wrong. Now I feel we are in danger of swinging the opposite way and parents who are sleep deprived, heartbroken at watching their child self harming or struggling with suicidal thoughts, or just exhausted by the same ten seconds of a video on replay for 8 hours, are vilified for daring to say autism can be difficult.

Can we take autism acceptance too far?

If we continue to see it just as a different way of thinking or seeing the world we are in danger of losing educational support for so many struggling children and throwing them into mainstream because ‘autism is not a disability’.

We are in danger of losing vital financial help for families because they are too afraid or programmed not to admit their child’s struggles.

We isolate struggling parents leading to an even bigger chance of vulnerable children being abused and parental suicide.

We cut back vital adult services for those who need it because we see anyone with autism as just different and not therefore in need of support.

We need a balance and an acknowledgement that autism is experienced differently by different people and that’s ok. Some need very little support while others need much more and that includes parents as well as autistic children and adults.

Until we accept that the balance of autism acceptance will never be right.

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.

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?