Autism, brain injury, SEN parenting

Christmas for an Autism Sibling

He’s throwing the presents
Screaming, demanding
I’d hide in my shell
If I had one to hide in

The new toys cause trouble
He wants what I have
My room is my bubble
Where he can’t push and shove

My brother is different
His brain’s not the same
I can’t have my turn
when we’re playing a game

I want to play properly
But I just let him win
Because Christmas is harder
For children like him

He’s making more noises
His hands on his ears
He’s making bad choices
He’s raging, in tears

My mum’s sad and tired
She’s tired of trying
She hides it from us
But I think she’s been crying

It’s time for my story
We’re about to begin it
But my brother is calling
She’ll be back in a minute

My brother needs cleaning
The 2nd time this hour
She’s gone more than a minute
He needed a shower

They say Christmas is magic
And I want to believe it
But he’s broken my sleigh bells
Mum says he doesn’t mean it

She says it’s because
He’s not able to face
The excitement of Christmas
He’s all over the place

He wants to see Gran
And he needs his routine
But there are last minute changes
Due to Covid-19

He wasn’t expecting
To be told they can’t come
He can’t bear to wait
And he’s coming undone

He spins in his hammock
When he needs to feel calm
I give him his space
He means me no harm

But his roaring is scary
And I don’t like his swearing
He punches himself
And he bites what he’s wearing

I live for the times
When he grabs hold of my hand
Leads me to his space
Wants me around

Gaming together
Inside the screen
A place where he’s happy
A space in between

The meltdowns and upsets
A space where he’s free
And I’m right there beside him
As I always will be

SEN parenting

The cocoon of lockdown

Like so many other families we’ve been home for weeks now, hiding away from COVID-19, or ‘that stinky virus’ as the boys have taken to calling it.

Social distancing is nothing new for us. As a family affected by autism, we already do a fair bit of social avoidance. It’s harder for us to get out and about due to my son’s unique behaviours, we already get groceries delivered, rely heavily on Amazon Prime and only go to autism friendly activities and support groups. In school holidays we’ve been known to stay home for weeks at a time, though never this many before.

When the schools closed I did wonder how we’d cope. My sons special school is not just where he learns. He has vital friendships with likeminded peers, he has therapeutic input from skilled teachers, a speech therapist, physio and OT, and other professionals visiting regularly to advise.

Parents everywhere are suddenly stressed and panicking as they fumble their way through home education packs. Social media is bombarding us with posts by parents feeling inadequate, overwhelmed and guilty about screen time (sound familiar?!)

And ‘special needs’ parents are quickly realising that it’s completely unrealistic to take on the SEN teaching role. We do not overnight suddenly become special needs teachers, speech therapists, psychologists, habilitation specialists etc etc. We are already carers 24/7 and that’s already enough! I for one am not trying to fill any of these extra roles. What my son needs right now is to feel safe. We are in the safest place we can be and we have each other.

For once there has been no rushing around to appointments and therapy sessions, no juggling of IEP meetings and care plans. Everything is on hold and it is a humongous relief to be able to stop battling for once, stop jumping through those hoops.

We have routine. More routine than normal – every day is the same! It’s completely impossible for me to work from home while the kids are home so we are enjoying a slower pace and creating new rituals. PE via You Tube (thank you Cosmic Kids yoga, Gonoodle and Bounce Patrol), collecting sticks in the garden and playing with them for hours, finding time for each other.

At first I felt overwhelmed by their virtual school work, endless emails with helpful attachments, links for boredom-busting activities, arts and crafts ideas and advice sheets from therapists incoming from all directions. Now that I’ve made a conscious effort to log off more and just hang out with my boys, It all feels much more doable.

We miss our family members and dear friends, so we’re checking in often so we don’t feel cut off. I’ve been through extreme anxiety about the virus and the children’s health, the ‘what ifs’ took hold over a terrifying few days nursing my little one through a sky high fever. These are strange days indeed and it is absolutely heart wrenching to think about all those losing their lives and the selfless medics and carers putting their own lives on the line. The news is deeply shocking and saddening but strangely compelling. We have never lived through anything like this, it really is history in the making and our kids will be picking up on that. They know things are different right now and that we are living in unique and very challenging times.

I hope that my boys will remember, not the fear, but the time spent together, siblings bonding, Mummy on the trampoline, baking wonky cakes and endless hilarious puppet shows where the puppeteer forgets to hide!

Stay safe everyone and savour this down time if circumstances permit. The Stoics would say that we should remain calm at this time of great adversity. But we do all need more love, patience and reassurance than ever.

SEN parenting, Stoicism

“Hello” she lied.

I’m writing this blog, my first for some months, with a new perspective. My father died recently and I guess I am beginning to traipse through some of the stages of grief.  

Right now I just feel so angry. Not because Dad has gone, (I don’t think that has even begun to sink in yet), but because the world can be so petty and trivial. My tolerance, patience and resilience are depleted and I just don’t want to engage with the mundane.   When people say trivial things or present me with little niggling problems or issues to address / add to the pile (as so often happens with special needs parenting), I want to say ‘No that’s not important’, or ‘No that doesn’t work for me’, or just ‘I don’t care about that’.  

I’ve called this post ‘hello she lied’ quite simply because even saying hello to (some) people right now does feel like a lie. What I actually mean instead is, ‘leave me alone.. ‘ 

There’s a part of me that likes to please everybody, keep people happy by ensuring their needs are met over my own. To the point of self-sabotage. Fortunately for me, special needs parenting naturally brings with it an incredible inner strength and drive. Suddenly catapulted into this minefield and wholly governed by the need to nurture and protect our children, special needs parents can’t afford to be a walkover. In order to get our children’s needs met, we have to speak out rather than comply.  

A very wise psychotherapist pointed this out to me last year and gave me my favourite quote yet:

‘Compliance is annihilation of true self’ – Donald Winnicott.  

And my new perspective is actually quite empowering. As a special needs parent, life is rarely trivial or mundane anyway. There are constantly big issues to deal with and lots of smaller ones too. Always. It’s actually vital to be able to put things in order or perspective. This matters. That does not.  

And to remember that it’s ok to run out of resilience. Especially having just lost a loved one! I’m having a tough time right now and that’s ok. It was my dear Dad who always told me ‘stay stoic’ and it’s thanks to him that I am writing this blog.  

Somebody I love has died and it hurts. There’s nothing more to say.

‘Who maintains that it is not a heavy blow? But it is part of being human’ – Seneca (on death) 

“Goodbye”, she explained.

Autism, brain injury, SEN parenting

Day surgery for my ASD child – trauma, guilt and stinky doctors

My DS is zooming up and down the hallway singing the Star Wars theme tune joyfully. I ask him how he’s feeling and he says “great” and “holy mackerel I’ve got BB8” (a game character he’s very pleased with). I’m so happy that he’s back to his sunny funny ways because just 4 hours ago it was a different story entirely.

He had to go for day surgery to have a tooth removed (in the end they took 3, while they were there..) It was to be his second experience with a general anaesthetic, the first time had been very traumatic for him so I’d tried to organise things differently this time. We’d been promised a play therapist or specialist learning disability nurse to be an advocate for him and help him with coping strategies, to be first on the surgery list so it would be over sooner, a pre-med and skilled anaesthetist to insert cannula without him being aware.

None of the above happened. In actual fact, he was last on the list, received no special measures whatsoever, was given no time for pre-meds x 2 to take effect before being pinned down and gassed with mask held over his face until he went under kicking and screaming in terror “no” and “please don’t!”

I have to say that it goes against every bone in my body to allow that to happen to my boy. He trusts me to protect him and he was so damn frightened in that moment I just wanted to grab him and run.

There is nothing stoic about the way I feel today about his autism and his brain injury and the fact that it makes him so anxious, and demand avoidant (unable to comply with anything he’s not sure about.) Most children, my youngest included, will accept a cannula needle in their arm with but a few tears and squirms and can then be anaesthetised gently and kindly. Today I sobbed for his trauma, at his terrified pleas for them to stop and for all the future occasions when, as an adult with special needs, he will again have to be held down and sedated in order to receive any treatment.

When they led me from the room where he lay finally with no fight left in him, they told me to go and get a coffee, that they would come and find me. Coffee?! Are you crazy?! You have my boy in there, held down against his will and at your mercy. I’m going nowhere sister until you come and get me and return me to his bedside.

And as I knew he would, he awoke from the anaesthetic in an absolutely petrified and traumatised state that continued for hours. He cried hard and loud. Kicked, punched, and used the F word for the 1st time in his life. Repeatedly.

Screamed that he was going to kill the doctors. The stupid doctors, he would kill them all. When given a toy he threw it back hard in the nurse’s face. Piles of cloths for his bleeding mouth were ripped to shreds. I tried so desperately and in vain to comfort him, held him tightly, didn’t flinch at the punches. He repeatedly hit the porters and nursing staff too, as well as me and his support worker. This is not normal behaviour for him. He was just inconsolable.

All medical observations were refused. All day long he remained absolutely convinced that they were coming to get him with the blood pressure monitor, that he would be squeezed and hurt. The nurses could not (and did not want to) get anywhere near my boy.

Post surgery, we were eventually wheeled to a private room after being on display in a ward of eight beds for all to gape and stare at (and stare they flipping well did of course). Seven other families with children who had had their operations calmly (and hours before DS). All eyes upon my traumatised boy and no word or even look of comfort or empathy, just rude and gormless staring and sneering, watching ‘the show’. I wish to God that they could walk a mile in my son’s shoes, to know the terror that he was feeling right there and then and to understand and respect his need for acceptance, empathy, privacy.

And when it was over, it was over. He got it out of his system, the pre-med sedation finally kicked in and wore off and he had some pain relief. They gave him a trauma teddy bear and a Batman sticker and discharged us quicker than you can say Jack Robinson.

And here he is a few hours later, obsessing over his new Xbox game and tormenting his brother. And here I am, with another groove of guilty conscious that I will forever carry. I let them hold him down with a mask over his face. Again. (It happened the same way the first time he was anaesthetised when he was 5 years old.)

Is there a stoical way of letting this be ok?

It’s hard, it’s really hard to see your child so frightened. I don’t think it is ok really and I don’t know what the answer is. Sometimes in this world, we all have to do things we don’t want to, things that worry or disturb us but that will ultimately be in our best interests.

It’s what I try to tell him but he’s not interested. He’s sticking with “I won’t do it” and “those stinky doctors”. Well to be honest after today, I can’t help agreeing with him there!!

Autism, SEN parenting

The Thomas Centre – ‘no apology’ holidays for families affected by Autism and related conditions.

The Lincolnshire coast

It’s summer holiday time and we are at the wonderful Thomas Centre in Lincolnshire. It’s our 3rd holiday here and it’s truly a relief to be back! The boys love it – they are happy, safe and parted from their devices as there is so much to keep them busy.

The huge 80m play barn has soft play, giant chess and skittles, table tennis, air hockey, a pool table and lots more. Outside there is space to run around, 25 acres in fact!

The children are enjoying hide and seek in the grounds and woods surrounding the accommodation. There are fun outdoor play areas for young and old alike, a football pitch, basketball hoop, huge sunken trampoline and a go kart track with enough karts for the whole family to race around! Even my four year old can reach the go kart pedals this year.

Skittles in the play barn!

The swimming pool is just the right size for families to enjoy their private hour slot daily. My boys love splashing around and making as much noise as possible and there are no worries about who we are splashing or upsetting / deafening!

The best thing about the Thomas Centre and the real reason we are here is that nobody bats an eyelid at DS’s noises and behaviours. The Thomas Centre is a specialist holiday centre for families affected by autism and related conditions. It’s a truly non-judgemental environment. The owners Richard and Jan and the other families staying here, all know how hard a ‘mainstream’ holiday can be.

When people stop and stare everywhere you go, when the public just don’t understand the noises, tics, meltdowns and unusual behaviours that can result from the need to self regulate in stressful, busy environments. When you just want to relax as a family without feeling exposed and judged, swimming constantly in a goldfish bowl.

Like so many special needs parents, I hear myself saying sorry again and again every time we leave the house. To all the people who my son collides with, leans into, or offends with his noises and phrases. I steer him past the people and I say sorry. There is absolutely no need for apologies here. In fact ‘no apologies’ is a rule at the Thomas Centre. We are having an apology-free holiday and it’s an incredible relief.

My son beats his fists hard on his chest when he is stressed and makes loud, unusual and repetitive noises. This makes people stop to stare, tut or sometimes laugh mockingly. The Thomas Centre is our haven – because here no one is laughing at him.

Other families are similarly affected and we are all feeling a huge relief to be in such a safe space and to be surrounded by the safety of others who know.

Yesterday we ventured out briefly to a nearby seaside resort. It was too ‘peopley’ for my DS as we tried to buy some supplies on the high street and his noises and stims were heightened. People stared and tutted as usual and one woman took particular offence to us standing in the bakers shop as DS was rocking and leaning into people unable to stand still. We were all very relieved to be back safely at the Thomas Centre and back in our PJs!

Holidays here have been designed with the whole family in mind. After all, we all really need a break from time to time. ASD children and their siblings can relax and play contentedly as their parents are able to switch off and know that all the children are safe and happy.

The holiday properties here are beautifully designed and no expense has been spared. Luxurious furnishings, huge comfortable squishy sofas, large dining tables for families to gather to eat and play, spacious comfortable bedrooms and high quality bathrooms and wet rooms with deep tubs for soaking the cares away.

While the kids are bouncing and racing around with their walkie talkies, we adults are reading, watching films, wearing face packs, soaking up the glorious open aspect countryside views and listening to the blissful sounds of happy, relaxed children playing and being themselves. I wouldn’t have it any other way – happy holidays!

Autism, brain injury, SEN parenting

My child has a brain injury – please don’t laugh at him. It’s really not helpful..

Once again today, I had to leave the house with my two children and brave a supermarket. ‘It’s a weekday, it won’t be too busy’, I thought to myself. ‘I can do this’. But once again, that turned out to be false optimism. I could not.

We only wanted a pack of sausage rolls and a bunch of flowers! So that my little one would not go empty handed to his nursery graduation party. How hard can it be, I wondered? To purchase those 2 items and get safely back to the car?!

Well the first thing that happened was that my DS (autism, brain injury) ran off banging his chest and not responding to my calls to come back / walk nicely / calm down. As he span and crashed his way up and down the aisles he bumped into various members of the public and their trolleys. I heard myself apologising over and over again as I tried to steer him away from said people and in the direction we needed to go.

“Well. I’m just a bit worried that he’s going to hurt himself” a stern lady berated me. I bit hard on my tongue as I debated what the point would be of trying to begin to explain that I CAN’T STOP HIM FROM BOUNCING AROUND! But that she is blimming welcome to try if she thinks that his chaotic behaviour, poor balance, visual impairment and lack of depth perception and sensory overload must somehow be down to lack of discipline or my failure to ‘rein him in’.

The sad fact is that the complexities of brain injury are hard for other people to understand. It has been suggested to me that I should carry info cards to give to people. Something along the lines of ‘this child has a brain injury’. By way of explanation. The trouble is, I feel so defensive about the constant negative and hostile reaction of others that I can’t help feeling it’s none of their business. And also that they probably don’t want to be told.

Perhaps such a card would be useful to explain his needs when communicating as he gets older. To give to medical staff, police officers, bank cashiers etc. But for the judgemental general public, I’m still not quite sure what the right approach is.

I mean, how for example, would I go about distributing said cards when there is a whole crowd of people just stopping to stare. Which is the 2nd thing that happened to us in the supermarket today.

We somehow managed to get to the tills with the two items we needed. My little one was clinging to me in tears because he had been pushed into a chiller and banged his head. As I scooped him up under one arm, DS also decided to cling to my neck knocking me off my feet (he’s getting so big now he’s 9) demanding his hug / share of me.

At the self service till, I did at least somehow manage to scan the items before DS took them and threw them, of course setting off the ‘assistance is needed’ alarm. No assistance was forthcoming, DS was now spinning like a whirling dervish while beating chest furiously like Gorilla Grodd and little one was just crying and climbing up my leg.

As I looked around desperately for the assistant to come and save us, I noticed all the lovely people who had stopped to stare. Two men were openly laughing at us. Just flipping laughing. At his brain injury and all the chaos that has since been following us around. Well let me tell you people something. It’s not very flipping funny from where I’m standing.

My little one never did get to his nursery party. He was too upset because Mummy was hyperventilating, big brother was in trouble as usual for hurting him and he just wanted to go home and never leave the house again.

So, to all you who will stare. Perhaps next time ask yourself, is there something I could do to help this family rather than stand and gape or sneer.

That’s all from me, (the rather unstoic mother today!)

Autism, brain injury, SEN parenting

Your brother is different – how best to approach the chat about Autism with younger siblings?

The time has come for me to tell my little one about his brother’s difficulties. He has been asking a lot of questions recently such as “Why does my brother make all those silly noises?” “Why does he do poos in pants?” “Why does he need help all the time.” And (the hardest one to answer) “why can’t I have a kind brother?”

It’s true that his brother is not kind to him most of the time. He is autistic and not able to regulate his emotions. He does not filter his behaviour to please others or to be socially acceptable in the way that most kids learn to. He just says or shouts what he feels. Unfortunately this is often “go away stinky baby” and “I hate you”.

I’m not really sure how to approach this big chat and have been looking for guidance. There are various books that can be used as tools to explain to younger family members, eg ‘My sister is special’ or ‘My brother is a super hero’, but I don’t think that this tack would work in our case. I completely agree that the emphasis on any disability should be on the positive and on the cans not the can’ts, but in our experience, autism is hard. I’m just not sure I agree with the ‘Autism is a super power’ approach.  And my little one certainly does not think that it’s super when he is being pinned down, strangled or screamed at.

Image by Andrew Martin from Pixabay

I would also feel uncomfortable telling him that his brother is ‘special’ – they are both equally special to me and I do not want to give the impression that one is more ‘special’ than the other. I have always felt more comfortable using the terms ‘disability’ or ‘additional needs’ as they are rather more to the point than ‘special needs’ which might be interpreted as skirting around the issue (or even as condescending in some people’s view.)

So what do I say when my little one gets to play nicely with a neurotypical child and then comes to me asking why he can’t have a nice kind brother like ‘that boy’?

I can’t begin to tell him the real reason, which is the brain injury that his brother sustained while being born. He is too young to be told that being poorly can have such devastating and permanent consequences. His brother now has a diagnosis of autism among many other challenges and autism is something that can be slightly more easily explained than brain damage, so I will go with that for now.

The best resources I have found are those that focus on how we are all different. We all have our strengths and talents, our funny ways. And some brains work differently too.

This brilliant video ’Amazing Things Happen’ is the best explanation of autism for children that I have seen. It describes the special wiring of an autistic person’s brain and explains how the brain can become overwhelmed and confused. This video could definitely help develop understanding about sensory overload and the meltdowns that can follow.  It also has a great visual description of ‘stimming’ – unusual self-stimulatory behaviours that regulate and calm, such as rocking and flapping, (or beating fists on his chest in my son’s case!)

This is the approach that feels right for us. Yes we are all different. And maybe some of us seem to be more different than others! And that’s ok!

brain injury, incontinence, SEN parenting, Stoicism

Another load of laundry?! – making peace with your incontinence.

close-up-equipment-hand-1321725“What’s the matter Mummy” you ask, you’ve come out of your room to see. I’m on my knees in the bathroom scrubbing poo from the bath mat. I’m trying to stifle my sobs but one has escaped and reached your little ears. 

“Nothing’s the matter love, Mummy’s ok, I’m just a bit tired” I reassure you and you scamper back to your room unravelling the loo roll as you go and leaving another trail of chaos for me to sort out. When I’ve finished scrubbing.

I’m crying because of the poo that I’m scrubbing. Because it’s on my feet and it smells. Ten minutes ago it was on your legs, feet, clothes and you’ve trodden it everywhere. It is the fifth time today that you’ve soiled and needed cleaning. I’m sobbing because your skin is sore, you’ve run out of clean trousers, I’ve already started the 4th wash of the day and now there’s more soiled clothes and a mat to add. I’m crying because I can’t keep up. 

And because you’re 9 and you should be continent by now. And because I want to scream this ‘should’ at you and I feel guilty, so guilty for wanting to scream at you about your incontinence. Because you can’t help it. 

I’m crying because you don’t care when you’re covered in poo. You say you don’t feel it coming. You discard your Incontinence pads, forget to put on your underwear, know that Mum will clean you anyway. 

I’m crying because it’s so damn hard and unfair. We didn’t choose this. I’ve been thinking that a lot recently. Some people believe that we get what we focus on, what we believe in, what we aim for. For a while I chose to believe that your brain would heal, that I would find a therapy that would ‘just rewire’ the damaged parts  and that you would ultimately be just fine. I’ve been holding onto that – there are always more strategies, therapies, special diets and supplements etc to try. But what if this is it?

You don’t know when you’re having a bowel movement. What if that’s ok? You will always need personal care and support with your toileting. Maybe that’s ok too? I still have a long way to go towards acceptance. I find it so hard to see your skin soiled and sore and I worry that you will be rejected and laughed at by the world. Your soiling is hardly your most unusual behaviour after all. 

And that’s why I’m on the floor, scrubbing and sobbing. Because I’m worried about you and I’m exhausted. 

What would the Stoics say? Perhaps that an exhausted parent in such a position should be focusing on cultivating resilience and inner strength? That the one thing of importance should be my inner state – it’s the only place I will find a haven. 

‘And where can man find a calmer, more restful haven than in his own soul? Most of all, he whose inner state is so ordered, that he has only to penetrate thither to find himself in the midst of a great peace- a peace that, to my mind, is synonymous with ordeliness’. – Marcus Aurelius. 

An ordered mind- that’s what is needed! Can I order one on Amazon?! In my exhausted state, I lack the clarity of thought to make sense of it all. 

Autism, brain injury, SEN parenting

Redressing the balance – when special needs parenting becomes overwhelming.


Parenting is a 24/7 role. For some, there is literally never a break or a chance to rest and restore. Single parents and special needs parents know this only too well.  And as for single special needs parents, I’d just like to say – you are doing a phenomenal job! I’m saying this because you probably don’t hear it anywhere near enough. And it’s the truth.

And if you’re anything like me, you’re probably also exhausted, overwhelmed and have trouble stopping to redress the balance.

In the early years, after my son was born with brain damage due to lack of oxygen, we had appointments and assessments most days. Certainly several every week. We saw paediatricians, neonatologists, a physiotherapist, occupational therapist, ophthalmologists, health visitors and doctors and later a speech therapist, portage worker and sensory loss social worker.

We also went to weekly multi- sensory sessions to stimulate his vision, cranial osteopathy sessions to heal his brain and breast feeding counsellors (who knew that having a child in NICU for weeks would stop the milk flow?)

In those early months, many parents are coping with this whirlwind of follow up appointments while still in a state of shock and unresolved grief after the events of their child’s traumatic arrival. They may have seen their baby fighting for life, attached to tubes and wires, a machine breathing for them. And been unimaginably helpless as they were unable to hold, comfort or feed their newborn. Upon leaving the neonatal unit and taking their baby home, they probably haven’t slept for days or even weeks.

Unable to stop and begin to process any of the trauma, worries and dashed hopes and expectations for their child’s future, or the fact that their world is now very different and very stressful. They just get on with it, just function, go through the motions, cope. Often developing symptoms of PTSD but not having the time or energy to do anything about it.

Then come the pre-school SENCO meetings, visits from the vision support team, mobility officers, trips back to the NICU hospital for clinical trial assessments. Later come the educational psychologists, autism and communication specialists, continence nurse. And not to mention the endless paperwork and battles for funding, disability benefits and the elusive Education and Health Care plan. Parents have to fight so hard for these essential services and provisions for their vulnerable children.

And the appointments need preparation – most special needs parents are VERY well armed when seeing a specialist. With intelligent questions after hours of research and with a list of essential bullet points. In my experience this is the only way to get results. The specialists need the bullet points about your child and will use them in their report and recommendations.

And after the appointments comes the homework. Occupational therapists think we have time to design, print and laminate visual resources for every activity our children ever do or may want to do! And physiotherapists assume we have an hour a day to spend on their recommended therapy regimes. Psychologists want us to fill in detailed behaviour charts and the continence nurse wants a food diary AND a poo chart!

(Note I’m not belittling any of these vital services or the difference they can make. Just having a little rant!)

Many of us are also caring for other children, trying to hold down part time (or even full time) jobs while beating ourselves up that we are NOT DOING ENOUGH! We really convince ourselves that we are somehow letting our vulnerable child down and we should we doing more and it’s all our fault etc etc.

Well if any of this sounds like you, I am here to tell you something –

You are flipping amazing! Resilient, unstoppable, a true warrior.

Being an advocate for your child IS unrelenting. It is a full time job (you ARE doing enough!) And it’s ok to come to a standstill from time to time. In fact it’s essential.

When I feel overwhelmed, I like to write it all down in a list. I call it a ‘duck it’ list (or something quite similar). All of the appointments, responsibilities, phone calls and emails, forms and paperwork, places my child and I need to be and tasks that others are expecting from me. And then just scribble out the stuff that can blimming well wait!

It’s ok to cancel your day / whole week once in a while. If you’re feeling overwhelmed, you need to redress the balance. In order to take care of your special child, you need to take care of YOU.

I don’t mean to tell you to cancel medical appointments – I know only too well how hard these can be to re-schedule and how impatient these services can be to discharge your child if you’re not committed.

But perhaps there will be things in your list of stressors that you can just let go of? By working out what can wait, what’s not so important today and what can be crossed out all together (my favourite part), you might just buy yourself some rest.

My new favourite sentence?

“Sorry I can’t.”

SEN parenting, Stoicism

Stoicism for special needs parents – could the philosophy of the ancient Stoics be helpful when bringing up a child with disabilities?

four_caryatids_erechtheum_acropolis1Many modern philosophers and health practitioners believe that the ancient philosophy of Stoicism is still highly relevant today.

According to the Stoics, the route to a peaceful mind lies in being clear about what we can and can’t control in our lives.  Some things are simply out of our control and we should not waste energy on trying to change them. We should expect to come across hard times and embrace them.

According to Stoicism, misfortune is all part of life and is just accepted – carry on regardless.  It’s all ok!

That’s all very well, you may be thinking, but what about those people out there who are really suffering – day in day out? People living with chronic illness, disabilities, depression, bereavement and grief?

And when it’s our children who are suffering, it’s harder still to make sense of. As parents, it’s our job to protect our children and it’s very hard to see them facing the constant challenges that their disabilities bring. The pain we feel for them is very real, as is the grief for the life that they ‘should have had’. Isn’t it human and perfectly natural to grieve and to feel pain and loss when something really bad has happened to our loved ones?

In my experience, yes absolutely. And it is also very easy to get trapped into this mindset. ‘It’s not fair, it should never have happened, he didn’t deserve this.’ And to feel resentment at the rest of the world for the prejudice and lack of acceptance that people so often demonstrate. It’s not surprising that many special needs parents feel so isolated and that they and their child are ‘hard done by’ that they have to face all these challenges.

It’s enough to keep us angry for a lifetime, living in a perpetual state of resentment and regret and forever dwelling on the injustice that life has served.

Could a stoic approach be helpful to parents of children with disabilities? Many of us are just too exhausted to find solutions, coping mechanisms, we just function. Just getting through another day can feel like a miracle. When we are praised for our strength and resilience, or even for how stoic we are, we can’t help but wonder ‘what choice do I have?’

After many months working with a very good counsellor, talking about my own son’s brain injury and associated challenges, I’m realising that acceptance is key. Yes this is hard, it’s very hard. And that’s ok. I can’t fix it. That’s ok too.

(I’m still working on this mindset..)

The Stoics taught that we should see things as they are, without prejudice or expectation. This approach helps us to accept what can’t be changed, take action where we can and to move forward with courage and persistence to overcome our obstacles. This is much easier when we are not overwhelmed with negative emotions and judgements about how things ‘should be’.

It is clearly not an easy philosophy to apply to parenting a child with disabilities. The fact remains that there are numerous obstacles to overcome. All too often, it feels like an uphill struggle and a constant battle. It is very difficult not to make judgements about how things ‘should have been’.

But we all need a code to live by, tools to help us make sense of it all and to help us navigate the minefield while trying to make sure that our own needs and the needs of our children are met.

From what I understand, Stoicism does not mean shrugging off our challenges; and it doesn’t mean that we should not feel our pain. More that we learn to let go of the negative stuff we cling to – the anger and frustrations. To keep our thoughts ordered and controlled so we can face those challenges with strength and inner-stability, which is surely something worth aiming for.

There seems to be a common misconception that the Stoics were cold and unemotional. To feel and overcome emotions is not the same as not to feel them at all. There is an excellent explanation on this topic here, by author and psychotherapist Donald Robertson.

So, for those out there facing a life less ordinary, yes it is true that we have a lifetime’s work ahead of us. Perhaps, if we can try to face the day to day challenges using the cardinal virtues that the Stoics referred to (wisdom, courage, morality and self-discipline), we may begin to feel some inner-peace.

I have been reading a great book on this topic, one I would highly recommend. It’s called ‘Stoicism and the Art of Happiness’ – Donald Robertson.

“It does not matter what you bear, but how you bear it” – Seneca