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

Sometimes I do.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Is Autism Awareness Helping My Autistic Daughter?

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

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

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

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

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

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

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

3. When autism focuses solely on difficulties.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

He’s fine, but so many others aren’t.

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

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

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

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

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

Why It Appears I Let My Autistic Son Get His Own Way

As usual my son is the first to wake up. It feels like I have only just got to sleep. I probably have. As he makes his way downstairs he switches every light on he passes, takes a handful of teddies with him and finally settles down on his chair with his two iPads before screaming for the TV to go on. His presence defines the household. His demands can seem relentless and his screaming earth shattering.

To almost anyone who reads about him, comes into my home or works with him, the impression is the same: I let my autistic son get his own way.

What people see is just the tip of the iceberg and the reason I am writing this post is to show that what can seem on the surface one way isn’t always the case.

My son is ten, he has severe autism. He has no spoken language. He has epilepsy. He has a progressive genetic condition. Most importantly for this post he also has something known as violent and challenging behaviour.

Violent and challenging behaviour in children with additional needs like my son is much more common than people realise. The reason is simple: people don’t talk about it. There is a shame that comes with it, as well as judgement, embarrassment and fear.

My son used to injure me. He would kick, punch, pull my hair, bite, destroy things, scream, harm himself and throw anything he could get his hands on. He was frustrated, angry and violent, both to others and himself. I couldn’t ‘have words with him’ as his understanding was (and still is) that of a one year old. He had no concept of being grounded since he never left the house without me or went anywhere and taking things off him proved counterproductive as he made absolutely no connection to the removed item and his behaviour.

I needed to understand him better not punish him. I needed to realise what was driving his behaviours, even when he couldn’t tell me.

His behaviour was similar in school and home so this wasn’t simply a parenting issue or an education issue, this was a behaviour issue that needed addressed consistently and with a lot of patience.

So what changed?

Well firstly I realised my son wasn’t being controlling. He was anxious.

He wasn’t being hurtful or selfish when he injured other people or property, he was dealing with emotions he had no idea how to cope with.

He was confused, upset, had unmet sensory needs, frustrated at an inability to communicate and be understood and he showed this in the only way he knew how.

Behaviour is one of the biggest and most effective ways we all communicate.

He needed things to change and that change started with me. I put in place a very low arousal home life. To the outsider it may look just like my son gets his own way but realistically we are actually all getting our own way instead because the entire family is now safe, our property is safe, and most importantly my son is safe.

My son does get to wake when he wants, watch TV when he wants and choose his meals. He has access to his iPad from the moment he wakes and when he wants a bath I bath him.

People can think what they like but by responding to his natural body clock and going with the times that suit his natural rhythm he is calmer, happier and more settled.

By allowing him to watch the TV he wants I am actually calming him as he uses the schedule of a well know children’s channel to know when his school transport is due, when it is time for his bath and when mealtimes happen. This eases his anxiety and helps him make sense of his world.

By letting him choose his meals he feels much more in control and less anxious as he then knows not only what is coming but when it is likely to come too. Surprises make him anxious, and therefore more likely to be violent.

As for the iPad: well it turns out this is his very means of communication, his voice so to speak, and without this he has no means of showing me what he wants or even if he is unwell. To deny him that is taking away the very tool that allows him to be understood.

Then there’s the bath: this is fundamental to his mental well-being and triggers him to know it is time for winding down for bed. By making this a time for arguments or battles because the time wasn’t convenient for me was one of his biggest triggers for his behaviour. I was inadvertently saying to him that it was my way or no way, which made him feel invisible, out of control and helpless.

Low arousal for us is about letting my son know that he is understood, loved and accepted for who he is. This is his home and he needs that place of sanctuary and escape to be able to recuperate and relax in order to face the world. He needs to feel like his needs are met and that the atmosphere is one of calm and love not anger and frustration.

Many would say I am doing him an injustice by allowing him to ‘have his own way’. The argument is that in the ‘real world’ this is unrealistic. I understand that totally but my child’s ‘real world’ isn’t going to be about an employer, a spouse and following the rules of the road as a driver. My son will have carers, support workers and respite staff and it is vital that they are not attacked in the way I used to be.

Low arousal isn’t about letting your child dictate. It’s about understanding, listening, responding and meeting the needs of our most vulnerable children when they need it most. It’s about responding to the communication that the challenging behaviour and violence actually is and recognising that a child is struggling and needs help.

You might see a child appearing to get his own way. I see a child who is understood, calm and happy.

Until you have lived through what I have you may never understand. I don’t judge you for that, I just hope you never have to experience it.

Who Will Fight For The Rights Of Less Able Autistics Like My Son?

This week the autistic community achieved something quite incredible. News began spreading earlier this week that a large government body had changed the wording on their site that said that anyone diagnosed autistic was now forced to inform the driving and vehicle licensing agency about their diagnosis potentially risking their driver’s licence.

The autistic community responded to this and rallied together defending their rights incredible well. They tweeted MP’s who battled for them, they started petitions and shared them everywhere, they made sure the leading charities supported them and they even looked into the law on the matter. As the wife of an autistic man who drives daily, and who I even taught to drive, I found it heartening and wonderful to watch a community come together and demand action. Days later the wording was changed back to its original wording that means autistic drivers, like those with any other condition or disability which could potentially impact on driving, only need to inform the agency if they feel their autism would affect their driving. Brilliant news indeed and a massive win for the rights of autistic drivers.

However, despite having an autistic husband who has been driving over 11 years I was very quiet online about the campaign even though I fully supported it. (I did sign the petition obviously.)

There was one simple reason for my silence and that was this:

It was great to see the autistic community defending themselves, and rightly so, but would the same autistic community, and society in general, be so outraged and campaign so valiantly if the violation was against the less able autistic community like my son?

I can’t help but think who will fight for my son’s rights?

Will his fellow autistics or those in society defend him, write petitions to ensure he is protected and contact members of parliaments about things that affect him? Will the public be so outraged and vocal about things that affect his rights? Would campaigns for the less able autistics get as much media coverage?

One thing is certain: my son will never be able to advocate for himself. He has no ability to speak, diagnosed with co-morbid learning difficulties and epilepsy and developmentally a young baby. Yet still every bit as worthy as a human being.

This week autistic drivers defended themselves. The very fact this group passed the drivers test, many having had to also pass a theory test too, proves a level of cognitive understanding and ability that makes them capable of self advocacy and defending their own rights well. I’m not a huge fan of ‘functioning labels’ but the very ability to drive means the group targeted have a level of awareness and understanding that my son will never reach. This in turn meant they could rally so much public support.

My son won’t ever be able to vocally speak up for himself.

He won’t be able to tweet anyone to come to his aid.

He won’t be able to start or even sign a petition. He likely won’t even know what one is.

He won’t be able to lobby for change.

I 100% stand by and support what was achieved this week but I also can’t help but wonder would we be so outraged as a country, as a community, if an agency violated my son’s rights like happened this week?

You only need to look at campaigns and petitions for things like making sure the police are trained in autism to help protect the most vulnerable autistics, campaigns against autistics being held in assessment and treatment units for mental health patients, campaigns to stop unnecessary force when dealing with autistic children and young people with learning difficulties and/or challenging behaviour, and even campaigns for the dignity of autistic children like my son to have suitable ‘Changing Places’ bathrooms with a hoist and a bench, to see that such campaigns need more support both from self advocates and society in general. What are the charities, celebrities, members of parliament and media doing to support campaigns such as these which are and do affect less able autistics like my son?

I advocate on my son’s behalf but many in the autistic community find that offensive saying my son needs to be enabled to advocate himself. The fact is he won’t ever be capable of that level of awareness or understanding. I have to be his voice. Until the day I can no longer do so I will fight for my son’s rights as a human being, child and eventually an adult. I will do everything in my power to see him respected, treated with dignity and be understood.

I just hope that if the time ever comes when his rights need defended that others within the autism community, and in society as a whole, will come together and stand up for him in the same way they stood up for themselves this week.

He’s autistic too, even if he won’t ever work, pay tax, raise a family or even drive.

He’s still every bit as worthy, valuable and he should have just as much rights.

If we say we support the rights of autistics are we fighting for the rights of the less able as much as for those who can advocate well themselves?

Will you stand with the less able autistics like my son?

The Importance Of Telling Your Autistic Loved Ones ‘Don’t Ever Change’.

The day my son was diagnosed autistic I broke my heart. He was almost four, had only just started walking, had no spoken language and he was very developmentally delayed. I wanted to do everything possible to ‘make him better.’ I wanted to change it all.

16 months later, in a different clinic, I took my daughter to be tested for autism too. I sat solemnly while the paediatrician and specialist speech therapist listed all the reasons they felt she too met the criteria for diagnosis. I didn’t cry but I did feel concerned about her future. I wanted to change the thought that she might struggle.

Five years later I sat in another room, in another city, with another speech therapist and a psychologist as my husband received his diagnosis. This time I wanted to change his past, prevent the years of misunderstanding and bullying and the subsequent depression it left him with.

It hasn’t been easy for me to accept and embrace the fact that, all except myself, my entire immediate family are all autistic. I can see looking back how I consumed myself with the need to help them communicate, help them socialise, and help them adapt to even the simplest of change. I was tying myself in knots and exhausting myself. In my attempt to help them I was inadvertently telling them they had to change.

Now it IS good to empower autistic people with the right tools and support to succeed in life. It IS right to encourage, help and teach them. But what we mustn’t do is force them to change the very being of who they are.

As my children grow and shine in their different ways, and my husband processes his own diagnosis, I am doing my best to help them embrace and celebrate their own uniqueness. I came across this simple post in a Facebook group posted by an autistic adult friend of mine called Joseph. His three words are what I want to say to my autistic loved ones.

‘Don’t ever change.’

Isaac won’t ever really understand what that means. His significant learning disabilities give him such a pure and simple outlook on life. While his care needs might be high the core things that bring him joy and pleasure are quite basic. He loves his food, his same bedtime stories every night, lifts (elevators), his bath routine, looking at photographs on my phone and soft play. I took him to soft play recently and watched with pride and overwhelming love as he flapped contentedly to himself unaware of anyone around him. He doesn’t care what anyone thinks of him, he lives each day like it’s the best day ever and he loves deeply. Why would I want to change any of that? He’s amazing exactly the way he is.

Naomi is at an age and developmental stage where she is much more aware of her differences. While her peers attend clubs and groups, play popular video games and play outside she is still happy to line up little plastic toys and immerse herself in her own make believe world. Her literal interpretation of language brings me so much joy as she, quite rightly, reminds me to say what I mean and not use ‘funny phrases’. Her thoughts on life astound me and her ability to empathise and care are incredible. Yes, she admits herself, that she finds some things harder than others but then she’s the first to tell me ‘everyone is different and we are all good at different things.’. She knows she has autism and she isn’t ashamed of it. She’s exactly who she was meant to be and any issues regarding that are for me to work through, not her. Would I really have wanted her any other way? She’s wonderful exactly as she is.

My husband’s autism looks very different to the children’s. He has spent his life trying to change and adapt, fit in, be included and be accepted. The world has tried to change him for over sixty years and as a result he felt ashamed, different, and stupid. Seeing the mental and physical scars he now lives with as a result of this makes me even more determined that our children need to feel loved, accepted and wanted for exactly who they are.

Therapies have their place. Strategies to support have their place. Teaching and practicing social skills have their place.

However we also need to teach our autistic loved ones that they are accepted, loved and amazing exactly as they are.

They need to hear the simple truth of these three words:

‘Don’t ever change’

When You Lose Purpose As A Parent Of A Disabled Child

I’ll be called a martyr mum for writing this. I’ll be accused of being self indulgent and making my child’s disability all about me. That’s all fine by me because I know I am breaching a big social taboo, putting myself on the firing line and making myself vulnerable. So why am I writing this? Well because I am far from alone in experiencing this and others need to know they are not alone.

Let me start by back tracking a little. When I was in high school and I was choosing subjects I was encouraged to think about my future. What did I see myself doing after school? What grades did I need to achieve this and how would I go about progressing my life. In other words what was the purpose of all my learning. I was instructed to ‘make the most of myself’, ‘aim high’, and ‘study hard.’ I ended up choosing an academic path and graduated from university with an undergraduate degree in teaching. I had a career path set out ahead of me.

So ok life didn’t quite go as planned and the sudden death of my dad threw me a curve ball, and though I did graduate I then went on to find employment in lots of different roles as I tried to figure out who I was and what I wanted from life. I worked, I paid my bills, I paid tax and I achieved. Regardless what employment I had, I had purpose.

I then got married and ten years later gave birth to twins. They became my purpose as I raised them to the best of my ability. I expected my children to be my new purpose for their whole lives, perhaps interspersed with some voluntary work or helping in things child related such as play groups and later schools.

It then transpired my children needed lots of support. Both are classed now in different ways as disabled. My son will require life long care.

Suddenly my purpose became fighting for everything he needed. Yes he was the disabled one but with a complete inability to ever advocate for his own needs I had no choice but to take on that role…for the rest of my life.

He’s now ten. I’ve fought for the early intervention, I’ve fought for the right primary school. I’ve fought for services, professional involvement and support. I’ve begged, cried and emailed more times in the last ten years to strangers than I ever thought possible.

And here I am with a severely intellectually disabled son who will require round the clock care all his life and I am starting to lose my purpose fast. As preparations start for high school, a time in life when he should be becoming increasingly independent, developing his learning to prepare for his further and gaining life skills for the workforce, I am left thinking how does any of this stuff relate to my son who is currently unable to care for the most basic of his own needs and still can’t write his own name?

He won’t go to college.

He won’t work.

He won’t handle his own money, live independently or ever drive.

I am expected to be his full time carer until the day I die. I am supposed to carry on doing intimate care on a teenager and grown man, entertain and educate a child who will never know what a wage packet ever is, give him the best and most fulfilling life possible and deal with all the financial implications of life with a disabled teenager and adult.

They never mentioned any of this at the careers conventions I attended in high school.

No-one told me people like my son existed let alone that parents of such children are expected to devote their entire lifetime caring for them full time.

I don’t resent my son. Not for one moment. I adore him, love him unconditionally and delight in every part of him. But where is my purpose in life? Am I really just the person sitting singing nursery rhymes to my adult child and watching Peppa Pig for eternity on YouTube?

I will fight for him.

I will love him forever.

I will do everything in my power to make his life meaningful and enjoyable.

I will give up my dreams, my future and my purpose for him because he is worth it.

I will sacrifice my future for his.

That’s the only purpose I have left now. It’s what being the parent to a disabled child with such high needs as mine requires.

So go on call me a martyr mum. Tell me my son’s disability isn’t about me. My son is severely disabled and relies on me just to get washed and dressed, communicate and live.

My sole existence is caring for him. That’s the only purpose I have and ever will have until the day either he or I passes on. If the pressure and weight of that burden is self indulgent then so be it.

Sometimes forever just feels a very long time.