My Ten Year Old Son Doesn’t Know What Christmas Even Is

As his twin sister races downstairs eager to open another door on her advent calendar, excitedly counting down the days to Christmas Day, you watch TV flapping like any other day.

As your twin sister practices Christmas songs after school in preparations for her Christmas show in two weeks time you watch the same ten seconds of lifts on you tube and rock in your seat as you always do.

Christmas means nothing to you.

No letters to Santa, and definitely no visits to any grottos.

No decorating a tree with the family or even any concept of what tinsel is.

No singing Christmas carols or dancing to seasonal pop songs as they play in the shops.

It all means nothing to you.

Your world is oblivious to the hype, the busyness, the traditions that consume society at this time of year.

You would eat turkey and all the trimmings if it’s put in front of you, but you would equally eat any other meal presented too. It’s just food to you, nothing more, nothing less.

My autistic ten year old has no understanding or interest in Christmas. He is still consumed by his own world, dependent entirely on routine, not communicating verbally at all.

Honestly, some days that breaks my heart. I know we should not compare children as each child is unique and individual but at Christmas you want your child to be excited, happy, expectant. Instead my son is uninterested, unconcerned and unaware.

Christmas isn’t his ‘thing’. Neither is Easter, his birthday, the tooth fairy or any other number of occasions you can think of. None of it enters his world.

He won’t write any Christmas cards (he can’t write any letters let alone his name) and he likely won’t receive any either, family events and get togethers are too much for him so I stay home with him. The only Christmas event he will come to is the church service but even then he gets very upset because it’s different to how he perceives church to be. He doesn’t know Christmas carols and he wants the usual songs he is used to back.

He doesn’t like the changes.

He doesn’t like new stuff.

He doesn’t like Christmas.

I can’t change that. It’s who he is and how he is. I could cry my eyes out every day for years but it won’t change things. I’ve had a decade of crying and wishing things were different. I have accepted that Christmas just isn’t something my ten year old understands nor does he wish to partake in it.

Even if I bought him presents he would never open them. He’s never opened a birthday or Christmas present in his life.

I could pretend it’s all ok. I could move a tree near where he is and take a picture and pretend he’s part of it all. I could put seasonal clothes on him and imagine he chose them. I could buy and wrap stuff for him and dream that somehow the magic of Christmas would change him overnight. All that would do is break my heart more.

I don’t need that. He doesn’t need that.

So while I decorate my daughters bedroom with her and revel in her excitement, while I buy and wrap gifts for her eagerly looking forward to seeing her face on Christmas morning, while we sing and laugh together as we practice Christmas songs the other side to my life is that I am playing down everything as much as possible to keep my son at ease.

I walk a fine line of trying to celebrate and embrace Christmas with one twin whilst ignoring it’s very existence with the other.

My son has severe learning difficulties, severe autism and epilepsy. He can’t speak. He can’t care for himself.

He is full of life, full of fun and the love of my life.

But at ten years old he still doesn’t know what Christmas even is…and he most likely never will.

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My Severely Autistic Son DOES Have A Bright Future

Six and a half years ago when I took my toddler to a clinic and left with a diagnosis of severe non verbal autism , pica and global developmental delay my heart broke. It didn’t end there either. Six months later he was diagnosed with a progressive genetic condition. A year later he added vision impairment to his list. At seven he added an optic glioma, a form of brain tumour and at nine, epilepsy.

As I write this he is ten, with the developmental age of a one year old, the speech of a nine month old baby (he is non verbal), he isn’t yet potty trained and requires round the clock care. He has to be medicated twice daily to keep major seizures at bay. He needs six monthly MRI tests to monitor his brain tumours.

On paper his future doesn’t look good.

I have spent so much time breaking my heart for my son and all he will miss in life. He likely won’t fall in love, get married, have a family, have a job, learn to drive, attend college or university or live independently; all the things parents expect from their children as they grow. He can’t yet write his name, he’s never attended mainstream education and his care needs are so high I have been his full time carer since he was born.

So given all that information how can I possibly say my son has a bright future?

Quite simply this: Quality of life isn’t determined by what other people think.

I thought my child should find a partner, perhaps have a family of his own, get a job, drive, contribute to society in some way and make a difference. I thought he should go to school, perhaps onto college or university then find happiness and fulfilment in a career of his choice.

But who says any of this is a bright future? Who determines these things as quality of life?

In actual fact my son has an amazing future ahead of him, one very different to how I imagined, but even more incredible!

He’s never going to carry the burden of responsibility so he won’t stress about interest rates, taxes, mortgages or company shares.

He’s never going to become embroiled in complex relationships so won’t experience the heartache of divorce or family breakups.

He will remain blissfully sheltered from many of the awful things that life carries with it like murder, abuse, political turmoil, homelessness, drugs or wars.

His simple life will be the envy of many.

His needs will be met, either by carers or myself, for as long as I live. He has a sister who adores him and who I know will do all she can to make sure he is looked after too.

He will spend his future not in the drudgery and stress of daily commutes to work or long shifts but in doing what he loves most. He’ll be taken swimming, the cinema, cafes, shops, garden centres and day trips. It will be like he’s retired without ever having to have done the fifty plus years employment first.

Clothes and food will be provided for him. Other people will arrange whatever finances are required, drive him or support him in transport and make sure he is happy and well.

His future is, in fact, what so many of us would dream of. He will watch what he wants on TV, explore the world via google street map and see family often.

He will, as he already does, be surrounded by love, respect and support.

I’ll take him to as many lifts as he wants because his years of education will be complete.

I am not deluded. I am not just looking at life from rose tinted glasses. I am fully aware that my son will always need a huge level of care and that I may not always be around to give him that. I, more than anyone, understand how vulnerable and naive he is and always will be. I know i will fight budget cuts, endless complex forms to have control of his finances and health needs and that I will likely get little to no respite when he passes from children’s care teams to adult care teams.

This won’t be easy for ME but for HIM the future is bright.

We are so quick as a society to assume that anyone with learning disabilities, severe autism or complex needs is a burden. We see their quality of life as somehow less because it doesn’t follow the tradition path of higher education, work and raising the next generation. We see their inability to pay taxes as somehow awful and view them as beneath others.

My son, and thousands of others, walk a different path in life. They face a future quite different to that which we see as ‘normal’. Yet their future, their existence, their needs, are not in any way less or second class.

My severely autistic son’s future is full of life, love and fulfilment. That to me is the epitome of a bright future and quality of life.

I am looking forward to it and if he understood what the future was I know he would be excited too.

Six Reasons Why Autistic Children Might Struggle With Losing

Last week I was at a school party with my daughter for Halloween. She’s not a fan of parties yet wants to be there too. It’s a huge internal struggle for her as she as she wants to be there like everyone else but realises she is different too.

The free dancing, general socialising, and snacks were hard enough but worse of all was when the games began.

My daughter loves games. She loves the rules and obeys them precisely. She likes that they are organised, structured and fair. The only problem is…she has to win!

They played one game which she lost right at the very start.

In front of her peers she could not hide her upset and I had to remove her from the room to save her embarrassment.

It’s now over a week later and she still can’t get the fact she lost out of her head. She can’t process it or make sense of it.

Of course all children can find it hard to lose but for autistic children it can be so much worse.

It’s not about just telling them to be a ‘good loser’, or using logic to explain that only one child can win out of everyone there. There are very valid reasons why autistic children can find losing hard and before we can help them we need to understand them better.

1. The Spiky Profile

Autism is a complex disorder and it usually comes with what is known as a spiky profile. This means that a child’s development is at different levels in different areas that what might be expected for their age. So, for example, while my daughter is on par with her peers in maths ability she is years behind in social skills. While her peers have mastered ‘good sportsmanship’ she isn’t there yet. It doesn’t make her any less it just means she needs extra patience and understanding. All children develop at different rates but somehow society expects all children to accept losing gracefully by the time they start school. For many autistic children this just isn’t realistic.

2. The Overgeneralisation

When my daughter loses in her mind it isn’t just a game, it’s everything. Her mental health deteriorates so quickly and it escalates from ‘I didn’t win that game’ to ‘I am useless at everything’ in minutes. Nothing will persuade her out of the mindset that she didn’t win so therefore she is terrible at everything, everyone hates her, and there is nothing she is good at at all. Many autistic children can be like this. They process the game as something of major significance and losing becomes the be all and end all. All rational thought leaves and they judge themselves by the sole fact they lost at one thing. While some may think this is ‘stupid’ or ‘childish’ it is a very real anxiety and needs patience and understanding.

3. The Humiliation

One thing my daughter can not abide is being the centre of attention in a negative way. She hates people staring at her or seeing her as different. Her social anxiety makes her believe that everyone thinks of her as a loser so the humiliation of publicly losing a game just reinforces that fact in her own mind. The shame of not being the best, the embarrassment of having to ‘sit out’ and the added cheers from others who continue to play only make this worse. Despite the fact she knows it is fair she will argue that ‘it’s not fair’ because in her mind fairness equates to only her winning. Which leads to the next point…

4. The Expectation

Losing well takes practice but how can you practice something that causes so much anxiety you can’t cope? It doesn’t matter how much you try to explain to my daughter that the reality is only one child will win and statistically that is very unlikely to be her, she will then argue that is ‘should be’ and ‘could be’ her so she plays with the attitude of ‘I am going to win because I want to’. While this is admirable and makes her play well and push through her social anxiety about joining in, it all falls apart very suddenly when she doesn’t win. It’s a catch 22 situation because if she accepted she was unlikely to win she would never agree to join in in the first place! I. Her mind she has already played out the game already. That’s the only way her anxiety will allow her to play but her imagination has her winning so when the reality is different the crash is big. Expectation vessel reality is always a hard one for everyone.

5. The Inability To See Things From Others Viewpoint

My daughter isn’t selfish. She is actually one of the most empathetic children there is but when it comes to games her anxiety becomes so high she goes into self preservation mode. In that mode she can’t look at someone else’s point of view so forcing her to congratulate the winner won’t work. She feels cheated and angry at the winner so how can she say ‘well done’ to them? Her own feelings and upset become so huge they are overpowering preventing her from having empathy for anyone else at that precise moment.

6. The Lack Of Control

One of the hardest things about any sort of game, wether it’s snakes and ladders or musical bumps, for an autistic child can be the absolute lack of control they have over any of it. The randomness of what you may thrown on a dice, or having an itchy nose when you should be frozen in musical statues is uncontrollable and that can bring huge anxiety to many children. They can’t predict and they are out of their comfort zone which can cause upset, frustration and challenging behaviour.

You would think with all that my daughter would hate games. In fact the irony is she loves them! Yet no matter how many different games we play she still finds it deeply distressing to lose.

The important thing is I recognise that and I understand and we continue to work on good sportsmanship often.

Like everything it’s about patience, understanding and compassion.

So the next time you see a child crying because they lost at pass the parcel or getting angry because they were ‘out’ at musical chairs spare a thought for the difficulties they are dealing with and remember we can all struggle to lose…especially when it comes to football!

To The Parents Of The Disabled Child Who Doesn’t Look Disabled

Dear fellow parent,

I understand.

I understand what it’s like to be in the park and others wonder why you are sticking so close to your child, perhaps guiding them or supporting them to do what other children much younger are doing easily. I know what it’s like to see parents and children stare at your child, laugh at them or worse…walk away from them.

People would understand if your child looked different, if you were pushing them in a wheelchair or if they had a walking frame. I see your child’s disability even when they don’t look disabled.

I understand.

I have a child just like that too.

It’s the expectations isn’t it. They look fine so why are they not talking like others expect, acting age appropriate or joining in with others? The assumption that ‘looking fine’ means they are ‘fine’ and that we are the issue not the child. Oh do I understand that!

Our parenting is questioned just because our child doesn’t ‘look disabled ’ whatever ‘looking disabled’ is even meant to mean? People think we are over protective, over bearing and causing the problem. Yet they don’t know what we know. They don’t see what we see.

They can’t see autism so they don’t know it’s there.

They can’t see global delay or learning difficulties so they must not exist.

They were not there when you received the genetic diagnosis so they don’t know.

They haven’t experienced the epileptic seizures so therefore you must have made them up.

They don’t know anything about the myriad of specialists you have visited or the volume of appointments your diary is full of.

They see your child and make assumptions based on the fact they look ‘normal.’

I understand.

You dare not mention that your child receives disability money. You know from experience that you will be accused of using your child to get money.

Why? Just because your child doesn’t ‘look disabled’ so therefore according to society they can’t be disabled.

I understand.

You see I have a child like that too. I get the sideways looks when I hold my almost ten year old tight as we walk. I hear the sniggers as he flaps and makes baby noises as we walk down the supermarket aisle. I know the judgement at the school gate when my child is the different one yet he looks just like any other child.

For some reason disability is meant to be noticeable or else it must not exist. People have this strange notion that if something can’t be seen then it must not be believed.

I know how that makes you feel because I feel it too.

We should not need to justify our child disability just because they don’t look disabled as people expect. It shouldn’t matter what someone looks like and people are so quick to judge.

So know you are not alone.

Know that I understand.

I am right there with you.

You do what you need to do for your child and know I support you.

Together we can raise our beautiful disabled children who don’t look disabled and hopefully one day others will understand too.

Yours lovingly,

A mum of a stunning but very disabled little boy.

This blog originally appeared here

My Child’s Mental Heath Concerns Me

I held my new born crying baby in my arms like she was the most fragile piece of china worried she would break in my arms just by being held. She didn’t break, of course, and many people told me ‘babies bounce’ and ‘they are much hardier than you think’.

Except my baby isn’t resistant.

Only it wasn’t her little bones that were precious and fragile, it was her mind.

How do you protect a child’s little mind from breaking?

She was always nervous. So scared to crawl that she eventually just shuffled on her bottom instead. So terrified to take her first steps I thought it would never happen. Scared of other people, frightened of noisy toys, crying if she was separated from me.

‘Some kids are shy’ they would say.

‘She’ll get there in her own time.’

‘She’s picking up on your anxiety’

‘You are an over protective mother.’

I knew my child though. I saw the fear in her little eyes. It’s more than how I parent and I was right. Eventually she was diagnosed as being on the autism spectrum. I was told she was anxious. I knew that already. She was different from all the other children. So much younger emotionally and socially. She was terrified of other people. A little perfectionist.

I watched on as what little confidence she had fell off her like leaves falling from a tree in the autumn wind.

Vulnerable

Scared

Terrified

Fragile

Her mental health much more of a worry with each birthday she marked.

My daughter isn’t resilient. She can’t ‘shake things off’ or ‘let things go’. She can’t ‘brush things away’ or ‘just forget them’. Little things are major to her. Anxiety rules her life.

If she comes home from school and a toy has been moved she breaks down. If she wants something from a shop and it’s sold out she can’t sleep that night. If she gets a sum wrong or spells a word wrong her anxiety builds up to the point she won’t eat. She can’t cope with being wrong. That’s not my parenting that is severe anxiety, autism and mental health difficulties.

They told me children are not fragile. But my child is. Her bones are strong, her body healthy but her little mind is fragile.

I was right to hold my baby gently worried she would break. I could feed her, teach her, hold her, encourage her but I can’t make her mind any different to what it is.

My child’s mental health concerns me. I worry for her future.

The Top Ten Offensive Comments People Have Made About My Autistic Family

I have two beautiful and wonderful autistic children. I also married a unique and handsome autistic man (though we were married 19 years before he was diagnosed). They all enrich my life but being different does seem to attract attention at times…and not always positive attention!

As a parent and wife I have had to develop broad shoulders and thick skin to many things people say about my family. I thought I would share the top ten most offensive ones and explain why they hurt so much and what you could say instead.

Firstly I want to stress that this is not to condemn anyone or make them feel awful. It’s about education and understanding so if you have said any of the following don’t feel guilty just endeavour to think and understand more from now on. Thank you.

1. ‘Will they recover one day?’

Why is this offensive? Autism isn’t an illness or a disease that gets better. It is a lifelong difference that should be embraced and understood. By asking if my children will recover you are implying they have something awful that needs treatment or therapy to get rid of it. You can’t ‘get rid of’ autism and you insult my family by implying or suggesting they should get over, recover or get better from their unique differences.

It would be better to say ‘Maybe they will change the world one day!’

2. ‘It’s that modern day ‘in thing’ to cover up poor parenting.’

Why is this offensive? You are saying autism is fictitious and that the unique make up of my children and husband which makes them who they are is a negative thing brought about by something I (or in my husband’s case his parents) did. Autism isn’t ‘new’ despite the fact we now understand it better and therefore diagnose more often. Autism happens in poor families, rich families, highly skilled parents, working class, the unemployed and the elite. You will find autistic children and adults in families with a huge variety or parenting methods so there is absolutely no evidence to suggest it has anything to do with poor parenting and suggesting otherwise implies ignorance.

It would be better to say ‘It’s more common in modern days but hopefully that helps parents feel much less alone than before.

3. ‘I’m praying for a cure.’

Why is this offensive? You are praying to change the very being of who my children and husband are! You can’t cure or remove the autism from them any more than you can take out their hearts! God made them exactly who they are and he accepts them and loves them. Why would God want to cure someone he made wonderfully unique?

It would be better to say ‘I’m praying for you as life must be a bit more difficult at times for you.

4. ‘It’s a slap he needs not a diagnosis.’

Why is this offensive? It questions my parenting and implies my child is unruly and undisciplined when he is autistic, not a brat. We say autistic people are very rigid but in fact society is very rigid in how they expect people to behave. Acting differently to expected does not mean my child needs corrected it means we need to be more tolerant and understanding.

Instead you could say ‘It’s understanding he needs and that can start with me.’

5. ‘I hope none of my kids ever copy yours!’

Why is this offensive? It implies my child’s behaviour or actions is something unacceptable to others. It’s usually said to me when my child is flapping, spinning, making repetitive noises, or not answering when spoken to by a stranger. The fact my child is non verbal seems an alien concept to some. There are so many amazing things both my children (and husband) do that I think if other children (and adults) copied their resilience, energy, enthusiasm, excitement and empathy the world would actually be a better place.

Please rephrase your comment to ‘There is so much my children could learn from yours!’

6. ‘Oh everyone has a bit of that really so what’s the big deal?’

Why is this offensive? By implying everyone is on the autism spectrum you imply my children’s and husband’s struggles are not valid and their diagnosis is worthless. In order to be diagnosed with autism you have to meet a high level of criteria and be assessed by professionals in a number of fields of expertise. If we were all a little bit autistic why would we bother diagnosing anyone?

It would be much better to say ‘Oh you have a diagnosed condition. That’s quite a big deal!’

7. ‘They never had that in my day’

Why is this offensive? It implies autism is made up. You only need to meet my family to know this isn’t true. Oh and for the record my husband was born autistic and he’s 60 so it’s ‘been around’ much longer than people think!

Instead it could be said ‘I know autism was around in my days too but unfortunately it wasn’t as well recognised back then.’

8. ‘I’m so sorry. That’s awful.’

Why is this offensive? You are saying that my children and spouse are so defected and bad that them being autistic is something to be ashamed and depressed about. There is nothing awful about autism. Don’t say you are sorry please. It is NOT a tragedy.

If you want to express love when someone is diagnosed please say something like ‘I’m so thankful for you. Being autistic doesn’t change you and I am still your friend.’

9. ‘Are you sure he should be in mainstream with normal kids?’

Why is this offensive? You just implied my child isn’t normal! You also implied my child has no right to be educated among his peers. That is dangerous, insulting and very very hurtful.

Instead be supportive and inclusive and tell me ‘I am so glad your son is in mainstream with my child. It’s how it should be and we all gain from it.’

10. ‘He seems fine to me!’

Why is this offensive? Because my son, my daughter and my husband are all fine already! They do have struggles (wether others see them or not), they do react differently to others sometimes and they may communicate in unique ways but they are perfectly ok too. Just because we don’t see someone’s struggles does not mean they don’t exist.

It’s much more respectful to say ‘You look well. I am proud of how well you are doing.’

The vast majority of people don’t mean to offend and I understand that. However a more careful choice of words and respect go such a long way.

Here’s a cute picture of the three most amazing autistic people I know. Why would anyone want to say any of the above about them?

The Difference Between ‘getting better at coping’ and ‘growing out of Autism’

My daughter is now more than half way through her primary school years and in a few short years she will face the transition to high school. She has come so far since the day she was diagnosed with autism exactly a week before her fifth birthday.

She reads fluently.

She writes beautifully.

She has a friend.

She talks in long sentences and can have a full conversation with me.

She is ‘doing well’ at school.

She no longer flaps in public, hides under tables or cries when people look at her.

She’s growing, maturing and slowly getting independent. So much so that an acquaintance recently asked me if she still had autism.

I wasn’t sure wether I should laugh or cry.

For anyone who is in any doubt: autism is a life long condition. You don’t ‘grow out of autism’ but you can learn to adapt and cope better. It is the latter that my daughter is mastering.

She has realised that others laugh and mock you when you flap in the school dinner hall so she soon stopped doing it. That doesn’t mean she doesn’t want to or need to she just knows it’s not the acceptable thing to do.

She has learned social chit chat enough that when people she is familiar with make small talk she no longer comes across as confused or ignorant. We have spent years working through different social scenarios to help her learn coping strategies. We have spent months on the same social story until she could reply with a simple ‘I’m good thanks’ to the question ‘how are you?’ As long as conversations continue as she has practiced she appears to be a fluent communicator.

She has learnt that not everyone loves to hear non stop information on the same subject. She has learnt that not everyone needs the same strict order of events as she does and that other children enjoy the change from routine even if she doesn’t. She understands what is expected of her and does her best to conform.

She hasn’t been cured of autism in any way, she has just learnt that to get by in life she needs to mimic non autistic people in order to survive.

As a society we are telling autistic people, wether we agree or not, that being non autistic is the best way to be. We start at a young age by placing as many autistic students, like my daughter, in mainstream school in the hope that other students will ‘bring them on’ and perhaps even ‘cure’ them. We may never actually say as much but we expect THEM to change and not the other way round. If a child is unable to hide their autism, mask their sensory issues, or cope with the demands of everyday school life we deem them a problem and educate them elsewhere like they have somehow failed.

My daughter has learnt to do what society expects of her. She mirrors her non autistic classmates in order to survive and so to onlookers it can easily be mistaken that she no longer has autism just because they can’t see her autistic traits any more.

You can not grow out of autism. It doesn’t happen. My daughter will one day be an autistic adult. She is proud of her autism. She knows she is autistic and she isn’t ashamed. Yet in school she could easily be mistaken as the same as her peers.

It’s called camouflage autism and it’s extremely common in school children and adults.

They can look, act and talk like non autistic people but that doesn’t change the fact they are autistic.

The difference therefore between getting better at coping and growing out of autism is that the first is extremely common whilst the second is in fact impossible.

Just because I have spent years helping my child to cope in a world that is foreign to her does not mean she is cured.

Just because my child can make it through a day at school, or an adult can make it through a day at work does not mean they are not autistic.

They are autistic people all around you, living in your street, at your work, in the shopping centres and driving on the roads who have all developed ways to cope and live in a world that is different for them. They may appear the same but they aren’t. Camouflage autism is all around us, if only we knew.

Think of it this way. If an Australian came to live and work in the UK and over time lost their accent, their Australian ways of doing things and blended into UK culture would we no longer say they were Australian? Of course not.

So why do we think because an autistic child or adult is learning to cope better that they are suddenly no longer autistic?

Maybe if people really got to know others and embraced autism more we would see that while at times it is admirable to want to be like others it is also wonderful to be your true self too: autistic or not.