Autism Isn’t A Lifestyle Choice

Autism diagnosis continues to increase year on year. With that comes more awareness and hopefully more acceptance. More and more adults are now seeking diagnosis and some even ‘self identify’ as autistic. Not a day goes by when there isn’t a press article, a blog, a meme or a TV programme featuring or talking about autism. So has autism become a trend, a cool thing to be, even a lifestyle choice, and is this right?

Autism isn’t something that should ever be taken lightly. For many, my son and daughter included, it’s a significant disability requiring life long support. They made no choice is being autistic and they can’t choose to stop having it either. It’s part of them p, and always will be.

Recently I was having a discussion with someone and I was asked if I said my children were autistic before they had their official diagnosis. Of course they WERE autistic before they had their official diagnosis, they were born autistic after all, but prior to official diagnosis I said that my children were ‘under investigation for autism’ or ‘waiting to be tested for autism’ and later on, having sought advice from their paediatrician, I was told they had a ‘working diagnosis of autism’ meaning everyone was treating them as if they had an official diagnosis as we waited to reach the top of the waiting list so they could access services immediately based on need. I never once said they ‘were autistic’ as a formal diagnosis until it was confirmed.

Things were similar with my husband. He suspected he was autistic, as did every professional working with us, but as nothing was confirmed we didn’t say to anyone. That wasn’t because he wasn’t autistic it was because, until confirmed, it was based on suspicion, our own research and the thoughts of others who were unqualified to formally diagnose. Until formal diagnosis my husband didn’t tell anyone he was autistic or even suspected he was autistic, other than me. After diagnosis he was happy to share the news both privately and publicly.

Yet everyday on social media, in comments on this blog and in groups, I see self diagnosed adults with no formal diagnosis of autism confessing to know more about autism and my children because they ‘are autistic’ or ‘choose to identify as autistic’. It’s become ‘normal’ to be allowed to say you are autistic even without any formal diagnosis.

Autism isn’t like being vegetarian or vegan, it’s not a religion you choose or a trendy way of living or identifying. You can’t be autistic one day but not the next when it suits you. You can’t be at little bit autistic’ either and you absolutely can’t pick and choose autistic traits like it’s a pick and mix in a sweet shop!

Doing a Facebook quiz and getting a certain score does not mean you are autistic. It means it might be worth investigating further; nothing more.

Now let me clarify that I am well aware that the more information about autism there is the more likely many adults will discover they are actually on the spectrum. This is exactly what happened to my husband but the words of the doctor we went to at the time have so much wisdom in them:

Autism is something for the experts to decide, not individuals, because like any condition it needs thoroughly tested. For everyone’s sake it’s better to know for sure than assuming anything.’

Autism for all three of my family is a disability. In no other disability would it be acceptable to just say you have a condition without actually having proof. You may be diabetic or have Scoliosis or have arthritis but until a doctor or expert confirms this it is dangerous to take medication for those conditions and say you have them if you don’t. There is a valid reason why many services need an official diagnosis before you can access them.

Now I know formal diagnosis for autism isn’t perfect. I know there are a few people misdiagnosed by the experts and I appreciate waiting lists are long. I also appreciate that access to formal diagnosis isn’t always even available.

However, if you have truly and thoroughly researched autism and believe you are autistic then by all means share your thoughts privately with your family or close friends. By all means look for support and answers. Just don’t hail yourself as an expert on a condition that you haven’t formally been diagnosed with yet.

My issue isn’t with genuine people who are autistic but can’t access formal diagnosis for financial or other reasons. My issue isn’t with children being let down by the system and left to struggle. I do understand the heartbreak of knowing your child or loved one needs support but being unable to access that. These all need addressed.

My issue is people that see autism as a ‘lifestyle choice’, a way of identifying because it fits with their own thoughts even if qualified professionals don’t agree and then using their self appointed status to publicly assert themselves as an expert on those formally diagnosed like my children.

My issue is people who say they are autistic yet in the next breathe say ‘but I probably wouldn’t get diagnosed’.

You can’t just decide yourself you are autistic. Your own opinion of yourself isn’t of more importance than trained professionals. It takes more than one person to agree on a diagnosis of autism for a reason.

Autism isn’t a lifestyle choice, it’s a complex lifelong condition that affects people forever.

Don’t make my children’s disability into a trendy way of life. Don’t say you have a disability publicly until you know for sure. I want to understand more about my children’s condition but I don’t need self confessed ‘know it all’s’ who aren’t even diagnosed themselves telling me how to support my children.

Autism and Anxiety – An Awful Combination

Another school morning and another anxiety filled hour for my autistic daughter. Her life is filled with rituals, fears, worries and restrictions and nothing is getting easier. She has autism with generalised anxiety and the combination is awful.

It all starts with how she wakes. (Well actually it starts even before then because she often has nightmares.) She immediately has to check that everything is how she left it before she fell asleep. She has to have certain comforts in bed and they are all lined up just so. If anything has moved while she slept her anxiety becomes extreme.

“Mum, someone came into my room again last night!”

“Mum, I can find ….I need you NOW!”

Things must never change. Nothing can ever be moved. That’s her rigidity due to autism but then the anxiety kicks in when something changes and her whole world spins out of control before she’s even out of bed.

Anxiety, autism and sensory issues then affect what she will eat (usually the batter from chicken nuggets for breakfast because she has AFID (avoidance restrictive food intake disorder) and will only touch a select few foods.) Clothes have the same problem and I am down to just three pairs of school trousers she will accept and two polo shirts. I have no idea what I would do if my washing machine ever broke! Socks cause huge anxiety but going without them causes even greater anxiety again. She can’t cope with school shoes so she has trainers.

Then she has her rituals every morning. Set things must be fully completed before she can leave even when time is short. Cries of ‘mum have I got time for…’ can’t actually be answered with a no or she collapses in a heap unable to function. Her mind has so many open boxes that must be closed before she can step out the door. Leaving any open means her day will be preoccupied by one unclosed box and she can’t move on. She can’t ‘just ignore it’ or ‘forget it for now’ or ‘do that later’ because autism and anxiety don’t allow for that.

She has to please everyone. Homework must be done to the letter. Missing a night isn’t an option because anxiety tells her her teacher will somehow know and reprimand her. Her own conscience condemn her because she has to be perfect.

Even before she gets into school she must be first or second in her line because otherwise in her mind she is late. Anxiety makes her thoughts irrational but autism prevents her seeing it that way. Autism then distorts how she perceives the world and those around her then anxiety tells her she’s useless, foreign and not wanted. It becomes a vicious circle controlling everything.

She can’t break rules for fear of being shouted at. Fire drills sent her anxiety spinning because she has to go outside in indoor shoes and without a coat, two rules that she can’t break due to her anxiety and autism. Being outside at the ‘wrong time’ sends her stomach in knots for weeks afterwards. No amount of social stories or reassures help.

Every day is exhausting. Anxiety exhausts her as she lives on her nerves never feels adequate or good enough or perfect enough. Then autism tells her this will never change and that everyone looking at her is doing so because she’s done something wrong.

Autism affects her ability to communicate then anxiety prevents her overcoming this.

Autism affects how she understands social situations then anxiety makes her feel the world is better without her.

Autism means she must obey the rules then anxiety makes her fear for the consequences of being unable to do so through no fault of her own.

Autism makes her vulnerable then anxiety means there’s nothing I can do to change that.

Autism Is a lifelong communication disorder affecting how she communicates, thinks, understands language and interacts with others.

Anxiety is worrying, unease and fear about the unknown.

Together they are crucifying my daughter and so many others.

There is no cure but that doesn’t mean I give up trying to help her.

My daughter is beautiful, kind, caring, compassionate and smart. If only the awful combination of autism and anxiety left her alone others could see her potential and love even more.

When animals and prisons have more rights than those with autism and learning disabilities

There are some blogs that tear me apart to write. This is one of them.

Today a government report was published with the title “The detention of young people with learning disabilities and/or autism.” You can read the report in full here: https://publications.parliament.uk/pa/jt201920/jtselect/jtrights/121/121.pdf

I read about it in the press today and cried. My own child has autism and learning disabilities. He’s non verbal, epileptic and he is doubly incontinent. I am not ashamed or embarrassed to say that at times his care needs are extreme and I struggle. Reading the introduction Members of Parliament wrote to their own report was like reading a diary and a glimpse into a future that could so easily happen to my family. Could this be your story?

Too often the pathway to detention is predictable. It begins from before diagnosis. A family grows worried about their child. They raise concerns with the GP, and with the nursery or school. It takes ages before they get an assessment and yet more time passes before they get a diagnosis of autism. All that time they struggle on their own with their worries and without help for their child. This pattern continues throughout childhood as families are under-supported and what little help they have falls away when the child reaches the age of 18. Then something happens, perhaps something relatively minor such as a house move or a parent falls temporarily ill. This unsettles the young person and the family struggles to cope. Professionals meet to discuss what should happen, but parents are not asked for their views. Then the child is taken away from their home and the familiarity and routine which is so essential to them. They’re taken miles away and placed with strangers. The parents are desperately concerned. Their concerns are treated as hostile and they are treated as a problem. The young person gets worse and endures physical restraint and solitary confinement – which the institution calls “seclusion”. And the child gets even worse so plans to return home are shelved. The days turn into weeks, then months and in some cases even years.”

The report says “we are inflicting terrible suffering on those detained in mental health hospitals and causing anguish to their distraught families.” It makes recommendations that it says are ‘urgent and not complicated’ but that ‘We have lost confidence that the system is doing what it says it is doing and the regulator’s method of checking is not working.

Let’s stop there for a minute. Here we have some of the most vulnerable people in our society having terrible suffering inflicted on them with our own government saying it has lost faith in its own system to protect them.

Would you believe me if I told you that the 2,250 children and adults with autism and/or learning disabilities detained in such places have LESS rights than animals or even prisoners?

Seriously!

Some basic research into the rights of animals showed me that they had the right to:

• need for a suitable environment

• need for a suitable diet

• need to be able to exhibit normal behaviour patterns

• need to be housed with, or apart, from other animals

• need to be protected from pain, suffering, injury and disease.

So why are children and adults with autism and/or learning disabilities denied a suitable living environment, a suitable diet, the right to exhibit normal behavioural patters, housed appropriately and protected from pain suffering and injury? If we (rightly) wouldn’t accept this treatment of animals why are we accepting it, as a society, for those with autism and/or learning disabilities?

What about prisoners who have committed crimes, broke laws and harmed others…none of which I might add apply to those with autism and/or learning disabilities locked up in these so called hospitals?

Prisons are inspected and prisoners have strict human rights including:

• protection from bullying and racial harassment

• being able to get in contact with a solicitor

• healthcare – including support for a mental health condition

All prisoners should be able to spend between 30 minutes and an hour outside in the open air each day.

Did you see that? Even prisoners MUST have time outside every day. Yet so many of the 2,250 children and young people wrongly detained in hospitals with autism and/or learning disabilities under the mental health act are denied this.

It tears my heart and souls apart to think that an animal or someone who has killed others has more rights than my non verbal autistic son.

I can’t accept that.

Can 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.

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.

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.