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.

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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

SEN parenting

Self care for special needs parents

The stoic mother

Over the years, since becoming a ‘special needs’ parent, I’ve learned that I must choose coping mechanisms. I can spend my days feeling hard done by and resent the myriad of challenges that my son faces on a daily basis. Constantly reminding myself to celebrate each mini-milestone while frantically searching the internet for ‘strategies’ and therapies and neurological experts who might come up with a cure for his brain damage.

Or I can choose to accept. I can’t control this and I can’t fix it. I can’t undo it. But I can choose how I respond to it.

I am slowly but surely learning that self care is vital. That I can’t care for the children if I am broken and exhausted. I have to schedule ‘me time’ in my to-do list. Down time. My list needs to tell me its time to sit down, wrap myself in a blanket and do nothing.

And yes most of us do have to add self-care to our to-do lists! It doesn’t come naturally and we have to work at it. I need the motivational quotes, the gratitude journal, daily warrior pose to remind me I can be strong, feel strong (warrior pose is great for this – I highly recommend if like me, you don’t have time or energy for a regular yoga practice. Just stand in warrior ll for a few mins each morning before you face the world!).

And write about it – getting it all down on paper can be very cathartic. I’ve been needing to write this blog for a LONG time!

Also never underestimate the importance of talking about it. Connecting with other parents in a similar boat is absolutely vital to my sanity – it’s such a relief to talk to others who understand. And nobody is going to mind if you burst into tears. Nobody is talking about diets or ballet / piano lessons, it’s real, it’s raw and it’s mutually therapeutic. Other special needs parents just get it – It’s truly a safe place to vent.

These women know how it feels when your child literally draws a crowd when they have a meltdown in the supermarket, when you’re up to your elbows in poo and have run out of over sized pull ups / pads. When you’re so isolated because you can’t take your child to the shops, out to eat, to the cinema etc. When you have to cancel your day / whole week because you’re too exhausted to face the world. Other SEN parents know. They are the people to make connections with (and to schedule spa dates with if you can get away for a few hours!)

My heroes in this life are almost all other SEN parents, facing unimaginable challenges as they so gracefully and selflessly guide their vulnerable children through the SEN minefield of exclusions and rejections all the time walking the special needs tightrope and managing to balance perfectly.

These women humble me and centre me.

I would love to hear from you if any of this resonates with you. Feel free to comment below or say hi on Facebook. And thanks for reading. Stay stoic!

Autism, SEN parenting

A unique perspective – an autistic child’s view of the world

Children say the funniest things sometimes. They take things literally, ask endless questions and can melt our hearts with their insights and declarations about the world. Individuals with autism can be very literal in the way they interpret language and may not always understand sarcasm or figurative speaking. If you tell an autistic child it’s raining cats and dogs they may well expect pets to fall out of the sky (and be quite concerned about their safety to boot.)

My DS often makes me laugh very hard. “You said Grandad can play the piano by ear Mum but he’s using his fingers”. Sometimes he says things that make me well up with tears – reminding me of his vulnerability. And sometimes, with his unique perspective,  he just damn well hits the nail on the head. 

I encouraged him recently to come and look at the sunset through the window. He climbed up on the bed next to me, stood up and peered out. “Wow ORANGE WIND!” He exclaimed. Yes sweetheart, it is orange wind – isn’t it fantastic? 

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The Stoic Mother

Raising a child with a learning disability has many challenges it’s true, but I consider myself extremely blessed to have the pleasure of his unique daily insights. His conversation is completely unfiltered, no social niceties, no unspoken rules. He says what he sees and what he thinks and that is immensely refreshing. 

Autism, brain injury, SEN parenting

Don’t stare…care – when people stare at children with a learning disability

https://www.annmariejohn.com/2018/02/how-to-avoid-embarrassing-meltdowns-at-grocery-store.html
image credit

I’m writing this for the lady in Tesco’s today. This is what I wish I had said as I’m never very good at saying it at the time; I’m guessing you’ve never come across a child with a brain injury before? Because if you had any understanding of the kind of behaviours that can result from such an invisible injury, I doubt that you would have been so shocked and offended by my son. His behaviours are what you might call ‘unexpected’ so your reaction is something we regularly encounter. But recently, my DS is becoming more aware that he is being watched and judged negatively. He just doesn’t understand why.

I wouldn’t ordinarily take him into a busy supermarket. In fact I go out of my way to avoid such situations by getting groceries delivered and making sure we never run out of essentials. Why? Because shopping is just not easy for my son. The glaring fluorescent lights, noises incoming from all directions, beeping checkouts, booming tannoy announcements, crying babies, people down every isle to literally bump into and the queues that are just not possible for him.

As soon as we enter the store, he bolts. He’s running straight up the fruit and veg isle, taking little notice of the people he is barging past, he’s beating his chest with his clenched fists and making a  ‘rargh rargh rargh’ sound. All of the shoppers are stopping to stare. First at him, then back at me, perhaps wondering why I am not ‘reining him in’?

I chase after him and try to physically steer him to the pharmacy counter. It’s the only reason we are here, I need to collect this damn prescription – it’s an essential I haven’t been able to pre-plan for and we’ve got to do this. People are still staring as now I am half steering half pushing him in the direction of the pharmacy.

When we get to the counter, there’s a queue. My eyes instantly well up. We can’t queue! ‘Don’t cry don’t cry, you can do this’. There’s a shelf of Easter eggs nearby, I take him there and point at the colourful tempting array of shiny eggs. It’s enough to engage his attention and he doesn’t bolt. He grabs 2 Easter eggs, Peppa Pig ones and brings them back to our place in the queue. He spins around and around on the spot with the eggs, banging them together and repeating ‘stinky peppa pig’ over and over. He runs to and fro between the shelf of Easter eggs and me in the queue as I try to take the eggs from him. Suddenly he notices that you, the woman behind us in the queue, are staring at him, mouth agape.

He approaches you, gets very close to your face, just to check. Then he asks ‘why are you looking at me?’ I hear you gasp in horror at the insult you feel. You’re muttering to your companion ‘OMG how dare he, blah blah’.

I can feel your eyes burning a hole in my back as you are demanding an apology, you want me to grovel.

What I should have told you was that he was not being rude. He really wanted to know why you were looking. Despite my very best efforts – with behaviour charts and flash cards and explanations and rewards, he doesn’t understand that his behaviour is unusual. Neither does he know how to be rude. He just wanted to know why you were looking. Did you want to engage with him? Did he know you?

What I wanted to ask you was this – would you stare agape at a child in a wheelchair? A child with a visible disability? Probably not I would hope, because that would be rude right? So, why do people feel it’s ok to stare at children with learning disabilities?  I think my DS asked a fair question. Why were you looking at him? And I didn’t apologise or explain as I felt it was a matter between you and him. It is very obvious that he has a disability and we have as much right as everyone else to be out and about collecting a prescription.

And what you don’t know is that every time we leave the house to go out to a public place, I am filled with dread and anxiety about how people like you will react. And every time we get back home, I close the door, lean against it shutting the hostile world out and breathe a heavy sigh of relief vowing that we will never venture out again. But we do. And each time, we hope and pray for more acceptance, understanding, compassion and kindness from the world.

Autism, SEN parenting

Dear Neighbour – what I want to tell you about autism

Today you invented a new word. Spectrumy. What does that even mean?! I was talking to you, my neighbour and acquaintance of over 7 years and the subject of DS’s Autism came up. “Oh yes my children are ‘spectrumy’ too” you told me.

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image credit

And… “I have very difficult children, they are extremely sensitive”. You went on to say “We are all ‘spectrumy’ in my family…though more the Asperger end.” (You said this like you thought Aspergers was the more elite end of the spectrum!) 

Yet I imagine you know nothing about the very real and often completely unmanageable daily stresses of people really living with Aspergers syndrome – so your self diagnosis makes me feel hopping mad. In my mind you are belittling everyone with Autism. Your children, who often come to play in my garden, do not appear ‘spectrumy’ to me in any way, shape or form.

I want to tell you what autism really means for our kids but I don’t know how to begin. A dear friend springs to mind, whose non-verbal child smears poo on his bedroom walls and regularly bolts as, like so many autistic children, he’s in a constant state of fight or flight. He needs 2 adults to keep him from harm and hold him safe when he has a meltdown. 

I tried to tell you how people don’t understand when my DS bangs his chest and roars like a gorilla in the face of strangers when he is stressed and you just laugh out loud. You think I must be joking. Exaggerating. 

I’m sorry to hear that your children are sensitive. Then surely you must know how it feels when they can’t cope with the lights, noise and crowds in a shop and they lie on the floor beating the ground with their fists? When they need a weighted blanket to be able to sit for five minutes to give their bodies a rest from the constant hyperactive over stimulation that they are never free from. And even then, how you have to hold them still. How they need to rock, spin, hit and hug themselves constantly in order to feel regulated? Or is that not the kind of sensitive you meant? 

A few weeks ago, it was you again who felt you must comment when you saw me struggling to unload a big boys bike with special parent handle from my boot. You told me I was likely too late in the day to teach my son to ride a bike (he’s 9). You told me that you have to ‘get them when they are young’ like you did.

What you fail to comprehend is that my big boy is not like your kids. When he was younger, all he wanted to do was spin around and around and sit under the table lining up toys in precise rows. You obviously know nothing about developmental delay – of how it can be both physical and cognitive.

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You have no idea that DS can’t use the pedals even now, that he doesn’t have the strength in his legs and feet, nor the coordination to pedal and steer, not to mention the concentration and focus needed to ride a bike. That he can’t bear to keep holding the handle bars because he needs his fists to beat his chest. That he always bangs on his chest with clenched fists when he’s stressed and that sitting on the bike makes him feel stressed. 

You don’t know that unless I take him out on the bike with the special handle, he will never have the experience of riding a bike. But I don’t ever expect him to graduate to riding freewheeling without the parent handle and yes I am happy to push him along with the special handle for as long as he can cope with giving it a go. Because it’s a bike; he’s a boy. It’s what we do right?! This is what we need to do before we give up and apply to a charitable fund for a special needs trike. 

Oh but shouldn’t you know all of this already though? As your children are ‘spectrumy’ too right?! 

I don’t say any of this though. I mean where do I even begin? I just nod and grimace. This post is for all those SEN parents out there having to deal with a lack of awareness. Who hasn’t heard someone say “oh but we are all a bit autistic right?” “I file my paperwork in alphanumeric so I must be on the spectrum”! 

Stay stoic!