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

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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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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!