What Did You Just Say?

From the rude to the ridiculous, from the insulting to the insane.  Stupendous and shocking, ignorant and inflammatory.  Here is a selection of the ‘best of the worst’ things that have been said to parents of children with disabilities. 

Which ones can you relate to? Which ones make you most mad?

Let’s start with the old favourite: “He doesn’t look autistic”.

Where do we even begin with this one!  Similar in intent to “But he looks so normal”, there is just no response that can do justice to the stigma and stereotype that this is perpetuating.   

What exactly should a person with autism or a disability look like? Such a comment can be attributed to basic ignorance, naivety, or living under a rock for the past fifty years.

Then there’s those who show envy:

I wish I got a new car every three years”, “I wish my child got free transport to school”, and so on.

Actually, I would rather he could WALK!  I would rather he could take himself safely and independently to school, like other children his age, skipping along the playground to his class while I chat to other mums at the school gate.  

I’d rather not be driving this cumbersome, oversized van past four schools before arriving at ours, seven miles away in the next town.  Every day struggling for a parking space large and long enough to extend the wheelchair ramp.

To the downright dangerous:

She’ll eat/drink if she’s hungry enough”.  One of the most ill-informed statements ever known to man.  And to make this one worse, it has even been known to be uttered by health professionals! 

Feeding/drinking/oral-motor issues are one of the most misunderstood and misrepresented phenomena in the world of children’s health, and yet one that most people have an opinion on!

The knowledge-by-association comments can be incredibly enraging:

My friend’s sister’s nephew is autistic, so I understand”, along with “my cousin has a chromosome disorder, I think it’s the same one”, and other similarly absurd sentences.  Such people are often trying to find common ground, but are entirely medically illiterate. 

However, when they proceed to deliver chapter-and-verse about the experiences of these tenuously-linked people, and depart golden nuggets of advice, it becomes extremely tempting to accidentally stamp on their foot.

Following on from the above, one thing that becomes apparent to a parent of a child with a disability, is how many amateur medical experts there are out there! I bet every one of us has been offered a plethora of well-meaning, but quite frankly, totally useless advice.

 Ranging from the mildly frustrating: “Have you tried….” [mashed banana/parenting courses/being stricter/alternative therapy] to the highly irritating: “She’ll grow out of it”, “He’s just a slow learner”, “She’ll catch up” and even “They’ll find a cure for that” (my personal favourite).

This one has a particular sting in its tail, and saddens me greatly:

Weren’t you worried about having another one?” or even “Were you offered a termination?

How does any parent begin to know how to respond to this? I can remember one time being asked this in a playground, when heavily pregnant with my second child, I pointed to my 3-year-old and said “Would it be so awful to bring another one of those into the world?” Sadly, I know I am not alone in having had anti-natal professionals offering highly loaded ‘advice’ about terminations, anti-natal testing, and ‘risk factors’.

We can’t conclude without mentioning the question that trumps all others:

What’s wrong with him?

Vocabulary is everything.  The word ‘wrong’ implies damage, harm, impairment, and promotes the construct of segregation and exclusion.  While it is not a vile word in itself, it naturally invokes an inflammatory reaction because we as parents see our children for all of their wonderful qualities and attributes, despite their difficulties. 

Let’s just finish off with a quick-fire of some more shortlisted favourites:

You must be so tired, make sure you have time for yourself

But at least she’s happy

But everyone is somewhere on the spectrum

When will he die?”

Special children are only given to special parents

There are so many more questions and comments that have been omitted from this article and I would love to hear of others that I have missed, and more importantly, how you have responded!

Let’s finish by acknowledging that the majority of people are mindful and thoughtful of what they say, and the above examples are luckily, few and far-between. 

It is also important to recognise that children should be encouraged to ask questions and show curiosity, and that a child’s unfiltered vocabulary may not always be appropriate but should not be chastised in the same way. 

Celebrate the Uncelebrated

May we celebrate the children who see the things that we don’t see.  Who hear the sounds that are silent to us.  Who touch the things that we will not.  Who speak the words that we dare not. 

Follow the child that explores the world without legs.  Watch the world through the eyes of the child who cannot see.  Talk to the child who has no voice.  Learn from the child who cannot be taught.

Let us follow the children who seek out the rain and the gales, the storms and showers.  Who find joy in the crunch of icy grass and in the clamour of hailstones on rooftops. 

Let us not feel self-conscious of our children who prefer the park gate to the swing or slide.  Who favour wildlife over humans. Who choose to run but won’t walk, who will bounce but won’t sit. 

Encourage the ones that care not for toys, but who make their own play

Who delight in tipping cereals onto the floor but won’t eat them from a bowl. 

Let those children show us how to discover the world through their own eyes and not through the filters we wear. Let them teach us that beauty is found in the fire in our eyes, not in the make-up that surrounds them.

Embrace the child that wears wellies in the summer and flip-flops in the snow.  Who listens to Christmas songs in July and still believes in the magic of Santa at the age of 14.

Let us acknowledge that teacher who measures a child’s success by their smiles, and measures their strength by their spirit.  Let that teacher teach us all.

Let us not recoil from the child whose grasp is too firm, whose kiss is too wet, whose voice is too loud.

Congratulate the children who sing but may never talk; who swim but may never walk.

May we take the weird out of weird. Make the alien into acceptable. Change the odd into enigmatic.  Take those children and hail them. Share them with the children of today who will become the adults of tomorrow.

Celebrate the uncelebrated.

A bus driver, a life lesson and a random act of kindness

My ten-year-old, Jenson, adores buses.  A day does not go by without his bus obsession cropping up in some form or other.  He will happily watch buses on YouTube for hours on end.  He has bus-themed reward charts at school and home.  His teachers use bus numbers to teach him mathematics, and ‘creative’ bus advertising to help with his reading.

Of a weekend, we can often be found in our local high street, bus spotting, bus riding, hanging out at bus stops and talking to bus drivers.  While his younger brother and dad spend every weekend playing football and riding bikes, he and I spend most weekends on, or around, buses.

Last weekend was no different. 

Jenson and I were hanging at his favourite spot in the high street, deciding whether to keep watching or to take a trip.  A new favourite of Jenson’s, the number 23, pulled up, and the bus driver got off the bus to take a short break. 

He was one of those people who as a parent, you immediately feel comfortable around, he engaged with Jenson and chatted about buses.  He then invited Jenson onto his empty bus to ‘test the bells’ to which Jenson happily obliged, followed by a sit in the driver’s cab.  Jenson was thrilled, as was I. 

The date was Sunday 13th November, and that morning, the local community had organised a Remembrance Sunday parade down the high street, incorporating the two-minute silence.  The driver asked me if we had just been taking part, and I answered no. 

I explained that Jenson finds it difficult to stay silent; he can’t process the instruction, and doesn’t understand the gravity of the occasion.  Therefore I tend to avoid such occasions, for fear of drawing negative attention due to his inappropriate behaviours.

The bus driver then really surprised me, with the incredulous look that came over his face, and his words that followed.

He exclaimed “What!! Why not?!”.  I was taken aback, and attempted to repeat what I had previous said to justify my reasons.  He persisted: “This is crazy!”. I must explain at this point, that despite his terse and direct words, our new friend was clearly a gentle, caring man.  Although he was challenging me, his intentions were clearly borne out of a belief in equality and fairness, as was demonstrated by what next left his mouth. 

“Who cares what the world thinks?  The world needs to learn more about differences.  Who cares if he is not silent, just because they tell you that you should be silent?  The world needs to understand and embrace differences.  The world needs to be more understanding, and they need people like you and Jenson to show them”. 

Feeling a little like I was being told off by the headmaster, I was at a bit of a loss as to what to say next.  I sheepishly concurred that I agreed with him, but that I still have trouble being brave enough to put this into practice, due to many examples of negative attention that we have attracted on past occasions in similar types of situations.  At this point, it would have been easy to reflect and conclude that no-one understands a day in the life of a parent like me, unless you walk in those shoes.  However, there was something about my new bus-mate today, that made me stop and think.

Dissatisfied with my answers, the bus driver continued to give me a stern talking to; encouraging me to never mind about other people.

His tone was kind, but firm, with sentiment and compassion. After about five minutes, his break was over, and the next thing I knew he was ushering us onto the bus to sit down at the seats nearest the front.  He started the engine, shouted “Let’s go for a ride”, and we were off!  Before I had a chance to resist, we were taking a 20 minute round trip to the terminus and back.

Unfamiliar with such random acts of kindness, I was taken aback but I soon relaxed into our impromptu journey, with the driver chatting away, and Jenson chatting back, much to the amusement of the other passengers. I took a moment to savour the pleasure and excitement that Jenson was experiencing, and I found myself speaking more loudly and excitedly to Jenson, as we chatted about landmarks that we were passing.  I was deliberately heeding the bus driver’s advice about throwing abandon to other people’s perceptions.

Rather than hush him, and keep my voice low, I did the opposite, and it felt great!  

I noticed that Jenson was responding to my more relaxed demeanour, and my ease was having a very positive effect on his own behaviour.

On our return to the high street, we had another lovely chat and I learned our new friend’s name, and he told me a little bit about his family. 

We have since met up a few times with Laslo, and taken a trip on the number 23.  Jenson is happy that he has a new friend and I am happy to have experienced a random act of kindness that has definitely lead to a positive change in my own behaviour and outlook.

In Laslo’s words, “The world needs to be more understanding” and “Who cares what the world thinks?”  I am now trying to adopt this mantra every day, thank you Laslo!

When people say “I don’t know how you do it”

It’s a phrase that parents of disabled children hear frequently, along with “I think you’re amazing”, “What a wonderful family you are”, and words to that effect.

Despite being a regular recipient of such compliments, I still find I am at a loss to know how to react or what to say back.

I politely respond, “Thank you, but no I’m really not!”, when really I want to say “You’d do exactly the same if you were me”.  I find myself wanting to grill them on what they think I am doing that warrants such kudos. 

Fundamentally, what am I doing that is so amazing, other than bringing up a child that I love? I am doing everything in my ability to ensure he is safe, well, and cared for, which is the same as what every other parent I know is doing too, right?

I guess the difference is that I am having to put a whole heap of extra work into this journey, and the path is fraught with obstacles

Perhaps they see the exhaustion on my face, or witness me repeatedly declining invitations to social occasions.  It is nice to hear compliments from people that recognise and observe the struggles that I go through, but it frustrates and saddens me that maybe they are drawn to the obstacles I face and not the joy of the journey. 

And so here I am asking myself why I find it so difficult and awkward to be complimented on my parenting. I think this is partly down to the unrelenting, perpetual guilt that I experience, that makes me feel undeserving of any parenting plaudits. 

For me, the focus remains on all the things that I haven’t done as a primary carer; all the things that I should be doing more of; all the things that I feel I have failed at.  

It’s the time I spend alone with my other child because he needs me to show him I have the same amount of love for him too.  It’s the therapies or extra care that he misses out on because I’ve run out of time or energy.  It’s leaving him on his iPad for longer than I should so that I can get tasks and chores done.

It’s a daily battle with feelings of ‘I-could-do-better-for-him’, and ‘what-if-I’d-done-this-differently’. 

When someone praises me on how magnificent I am for what I am doing for my son, this also seems to unhelpfully focus my mind on the differences he has and the reality of the situation. It serves as a reminder that I have a seriously different life to other people, and it reminds me of the gravity of my situation and the severity of my child’s condition. 

I previously felt purposeful in my professional life, but I relinquished my career not long after my son was born.  I now need to feel I make a difference and serve a purpose elsewhere, and so by focusing on making a change and having a positive impact gives me this life narrative. 

For me, I have ended up in the spotlight, advocating for families like mine, representing parents who cannot represent themselves, and crafting new services to counter the existing under-provision.  This is not for everyone, and I do not seek praise for this; it is a personal and somewhat selfish act that helps me unravel my own demons. 

I am truly grateful for the accolades that are bestowed upon me, but please know, I am just another parent doing another difficult job, and yes, you would do exactly the same, and like me, you would do it through unconditional devotion and love.

My Water Baby: The Therapeutic Power of Blue Space

The beach has been my backyard for the past 20 years, but it was only when my son was born nine years ago that I really started to make an ally of the ocean. 

Having had many sorrowful experiences at soft play sessions, baby groups, and library sing-songs, I soon realised that our true sanctuary was the beach. 

My baby, still undiagnosed, was struggling to find his way in the world, inexplicably not conforming to societal expectations. 

But through his blue space, he found his safe-haven, unchallenged by cultural expectation.

In his primal state of infantile exploration, the beach became his chosen playground. 

Unwatched by his peers, who had achieved it far, far sooner, he first learned to roll back-to-front and back again, when lying on the soft forgiving sand, encouraged by the natural cambers that had formed the night before. 

His first experience of independent mobilisation was similarly exhilarating, a few months later, down the very same cambers, on his bottom. 

He would sit on the water’s edge for hours, the tide tickling his toes and the salty spray decorating his face, such effort taken in propelling himself just a few taxing feet forward and backwards, left and right, rogue waves catching him out and knocking his tiny and unsupported body to the floor as he giggled and gurgled in the water.

He would sleep his best sleeps on those nights, sapped and satiated by his time in the blue. 

I loved the lingering taste of sea salt on his nose as I kissed him good night.

I would really enjoy those times alone with him, escaping the pressures of new-motherhood by avoiding the inevitable conversations with fellow mums about milestones and progress and the looks, sighs, words of wisdom and sympathy. 

I welcomed its predictability, its consistent terrain, total neutrality, lack of territory or ownership. 

Every visitor comes with no greater or less entitlement to its offerings, just to borrow a bit of beach for as long as they choose, no booking system or timeframes to conform to, and no unexpected factors to scupper plans.

In pastimes I had been a nervous visitor of the ocean, feeling like an imposter in a foreign and hostile body of water, anxious of its unpredictable movements and volatile behaviour.    

But while my son’s affinity with his blue space was showing no signs of abating, my own trepidation of the sea was swiftly diminishing, through the sheer non-negotiable responsibility placed upon me to facilitate his only true love and connection with nature.  

As a family we were happiest on the beach; the non-judgemental landscape was such a reprieve from the everyday challenges we encountered in our urban world.  

His love of the waves was indiscriminate and in fact it was the days where the sea was at its iciest, stormiest or angriest, that he would shriek with joy the loudest.  

With my firm and protective hands round his waist, he would swim and splash, kicking against me to push farther out towards the blue horizon. 

I am unsure at what point I realised that he was swimming on his own, but it was certainly a long, long time before he could walk. 

His self-taught writhing, flapping and ungainly movements were somehow propelling him through the water, and alarmingly most of the time in an underwater motion.

It was a challenge to remove him from the sea, as he would happily stay for hours, but the blue of his lips and the wrinkles in his digits indicated he needed reacclimatising. 

We would wrap him in his robe and he would shuffle to his same favourite spot and lie on the warm sand, slowly returning his body temperature to its regular state.

At times we were guilty of overstaying our time in the water; the intensity of his enjoyment obscuring the signs of hypothermia, and his inability to self-regulate, identify and respond to, his own needs caught us out now and then.

My boy is now nine and this Spring will see our tenth year of enjoying family time on the beach. 

Now a fully mobile, sociable and inquisitive child, he knows no social barriers, usually befriending a dozen families and as many dogs with his charming and convivial personality on any given day. 

His inability to grasp the concept of personal space and belongings has left us having to explain and apologise to strangers on numerous occasions about their punctured beach ball or flattened sandcastle structure. 

But mainly we find that people are beguiled and captivated by his gregariousness and loving manner and will happily share their borrowed bit of beach with him, and surrender their buckets and spades.

So, I look forward to another season of sea, sand and sanctuary, in the one collective place that we can spend time as a family, unjudged, safe and content, with each of us in our true happy Blue Space.

Dear Carer, Dear Friend

They told me I qualified for help from social care.  ‘Respite’, they called it.  They put some money in an account for me, and told me to find ‘staff’.

I didn’t want staff.  I didn’t want strangers in my home.  I wanted to fix my child, but no one was helping me with that.  I was lost, I was desperate.

You came into our house, and into our lives that day, and you’ve never left.

You didn’t notice when the house was a mess.  You didn’t care when I was still in pyjamas.  You talked and you listened, you watched and you learned.  You took instructions sometimes before they even left my mouth.  You absorbed like a sponge. 

Nothing is weird or unusual to you, you don’t flinch when dinner lands on your lap, toys are thrown at you, and your hair is pulled out.  When he’s at his worst you still seem to find his best.  You are so patient and gentle yet so firm and focussed.  You are calm, organised, and proactive; everything I want to be.

You bring experience but also open-mindedness.  You take direction but also direct me.

You ask about ME.  You care and you listen. You make me tea and you make me sit down and drink it.  You are sensitive and sympathetic but not patronising or judgemental.

We have good days and we have bad days.  We learn together.  We reflect on days gone by and feel collectively proud of what’s been accomplished.  You have seen me at my worst, and at my slightly-better-than-worst. You bring out my best.  You show me it’s ok to be me, and reassure me I am doing an ok job. 

Over time you’ve shared your own stories, and over time we have become friends.  You’ve confided in me, you’ve celebrated and cried with me.  I’ve watched your career and your home life change and evolve.  When life has been cruel and you’ve been at your lowest, you somehow find strength in him and it diverts your pain.

When he’s been through lows and times of real difficulty, you’ve pulled us all together. 

I’ve been a shattered mess and you’ve been the tower of strength.  I have watched you enjoy him and in doing so I have remembered how to enjoy him too. 

You’ve made him so funny! He tells me the jokes he has learned and repeats the naughty words and silly actions.  You’ve got your own private jokes and phrases and he loves that you have secrets.

You’ve been brave! When I was so scared to leave the house, you showed me resilience. 

You didn’t falter at the looks and glares, you didn’t fret over the possible obstacles.  Your primary aim has always been to give him every ounce of what he wants and what he needs, with a brilliant ‘screw-the-rest-of-the-world’ attitude.  You’ve taught me how to grow a thicker skin.

They said, don’t employ friends.  They said, you’re their manager, not their mate. 

They told me to give clear instructions and maintain boundaries. Draw up contracts.  I still forget you’re here to be paid; you make me feel you’re here out of choice and not for an income. 

Your name is hollered on repeat when you’re due to arrive, and he watches and waits with excitement. 

The house feels lonely when you leave and you often leave late because you’re so engrossed in each other.

You’ve been his therapist, his taxi, his teacher, and his advocate.  And you’ve been his best friend.

My child is a better person for knowing you. 

If I could turn back time. What would I tell myself?

If I could time-travel, I would go back to the day you were born. And the days, weeks, and months that followed and tell myself the following five things.

“You were expecting a ‘normal’ child.  Your world has shattered into a million pieces.  You have lost something you never had. But that you were preparing for the past nine months.  You think your life as you know it is over, but I am here to tell you it has only just begun. 

Listen very carefully to these five very important things.

Number One.  You will love this child.  This is a love that has no bounds.  A love that can and will move mountains; will stop you in your tracks; make you breathless; make you stronger, prouder, and braver than you can ever imagine.  This is a love that is borne out of who your child is, not in spite of.  It is a primal, elemental love that cannot be rivalled.

Number Two.  The future is your enemy, and the present is your friend.  Do not think about all the things that might be difficult in the future. All the battles, all the differences and all the challenges.  No one, especially not the professionals, knows what the future holds.  No benefit can be gained from suffering over the what-ifs. In fact, the what-ifs are usually much worse in theory than in reality. 

Number Three.  Other people are ignorant, thoughtless, and thoroughly tactless.  They are also well-meaning, kind, compassionate and unknowingly prejudiced.  They mean no harm; want to alleviate your pain, give you optimism, and contribute to lessening the burden they see you carrying.  Their input will usually involve personal accounts of their cousin/neighbour/best friend’s brother, which they will naively assume help your cause.  They won’t, but you won’t tell them that. Rather, you’ll smile sweetly and change the subject. 

Managing your expectations

Which leads me to Number Four.  For every friend you lose (and there will be scores), there will be a new friend who will change your world.  Some may be travelling a similar path; some may cross your path for other reasons.  You will encounter a whole new team of superheroes. Your child’s advocates – teachers, therapists, care workers.  You will entrust these amazing individuals with your child’s life, and you will cry and celebrate with them.  They will show you a whole new species of supreme humanity.

Number Five.  You will overhaul your expectations of life and parenthood.   You will recode the hard wiring of what you have come to know as happiness, pain and love.  The joys, woes, challenges, celebrations, will be the same as parenting a regular child.  But with greater extremities either way.  And please believe me when I tell you that the intensity and elation of the up-sides will eclipse the downsides.  In this you are truly lucky.  In a life where nothing is assumed or taken for granted, you will treasure and savour Every. Single. Moment.

So please don’t be sad.  Don’t miss out on the first few precious days, weeks, and months, because of misplaced sadness and grief.  Avert those feelings of loss and exchange them for eager anticipation of what is to come.  Know that you will be a good parent, a great parent.  And be kind to your partner.  He or she is travelling their own same but different path, and you are a team.  The BEST team.  And you are the luckiest parents in the world.”

What is Early Intervention and why is it so important?

Early intervention is the identification and provision of effective early support to children and young people who are at risk of poor outcomes. It incorporates social, educational, physical and mental health needs.

Preparing for the journey

There is so much that can be said about the world of early intervention. But the first thing I want to say is that it should come with a warning.  It is often so painfully difficult to get a need for intervention recognised and resourced.   You need to be resilient when battling for your child.  You may need to find courage to be outspoken, and conviction to articulate.  You’ll need to struggle through the times of despair and anguish, and muster energy and strength to persevere.  Self-doubt may even start to kick in when, after being challenged and refuted numerous times. You question whether your fight is legitimate and justified.

Being resilient

The most gruelling of fights for our family was our battle to secure interventional feeding therapy for my child. Who has oral-motor disorder and acute sensory processing difficulties, which lead to a condition called ‘avoidant and restrictive food intake disorder’. The feeling of being continually ignored and placated was utterly shattering. We endured a long battle to secure his early-years place at his specialist school. A school which provides in-house therapists and specialist interventions, which was so imperative to his development. We have undergone ongoing battles with the social care system to acquire respite care. So that he, his young brother, myself and my husband, can have an element of respite and practical help at home. 

In each situation it has felt like we have needed to demonstrate critical, dire circumstances, before our needs have been taken seriously.

Why early intervention is so important

The importance of early intervention should not be under-estimated. But sadly it is often the case that a child or young person fails to receive the interventional measures that they require.  These failings can often be attributed to funding, lack of diagnosis or recognition of need, resource issues, and untimely interventions.

The key part of the phrase is the word ‘early’.  Put simply, the earlier that a need is identified, and the sooner that an interventional measure is put in place. The greater the likelihood of a positive outcome. 

In a child’s formative years, the brain’s neural connections are being activated at an exponential rate. As a result of everything they are living; mentally, visually, physically, experientially.  Their experiences are having a direct impact on their rapidly developing brain architecture.  Thus, early interventional measures for a young person can inform and influence the future hardwiring of a child’s inner computer.  For an infant whose development is a cause for concern, early intervention can have a colossal impact on their physical health and cognitive progression. 

Similarly, during the teenage years, a person’s brain is learning to shift the emotional learning from the primitive system, towards the sophisticated frontal lobes. This evolutionary process is moulded by all the raw external influences it experiences.  Therefore, in the case of a mental health or social-emotional issue in older children and adolescents, interventional measures being implemented on a timely basis can have a profound effect on their trajectory into adulthood. 

Recognition and acknowledgement phase

The very first stage for each and every family is the recognition and acknowledgement phase.  Differences, disorders, and difficulties come in all shapes and sizes. And a parent must first identify, recognise, and act upon, their child’s presentation. Which can be a difficult and distressing process.  This can often lead to stages of denial, depression or anger, before our practical minds take over and we are ready to ask for help.  The critical path to early intervention can often be obstructed by the lack of a diagnosis and this obstacle can cause its own arduous difficulties.

Once ready to act, and furnished with evidence and fuelled by the desire to help our children, we move on to the stage of researching the best course of action. In some cases, this can be straight-forward, such as a physiotherapy for a physiological condition. But in other cases of mental health disorder, behavioural or communication problems, the interventional options are not so clear.  This stage can be the toughest time for any parent, as our child’s condition often deteriorates or becomes more omni-present, while the ongoing efforts to source help to ‘fix’ it seems to be futile.

All too often we must fight to be heard.  Whether it is to obtain a diagnosis in order to be included in a care pathway, or to be accepted for an intervention that has a long waiting list, or that has strict acceptance criteria. The most upsetting scenarios is where a child is not considered to be ‘serious enough’ to be accepted for treatment or intervention. In this country it is a sad fact that for specialist or costly interventions you often need to be ‘in crisis’ or ‘critical’ to be given any resource from the system.

My advice to parents and carers who are seeking early intervention:

  • Gather evidence: Keep diaries, records, and photographic/video evidence.  Insist on written clinic letters following each appointment, and statements from educational settings.  Make notes of all phone conversations and appointments, and keep a timeline of everything.
  • Know your statutory rights. Find out national and local timeframes such as Referral to Treatment (RTT), maximum waiting times, and any requirements for meeting treatment criteria.  Acquaint yourself with your rights in the healthcare, social care and educational systems. This can be asking for referrals, second opinions, specialist consultations.
  • Ask for help: Take a friend or family member to appointments.  Tap into charities that have an abundance of material and resource to help you. And who may even be able to represent you at meetings. Persevere where progress is slow, even if that means calling and emailing frequently. Do not be afraid of being a nuisance!
  • Fortify yourself with as much emotional strength and support as you can. Surround yourself with positive people that love, support, and understand you and your child. Do not be afraid to ask for help.  Be prepared for a battle but be assured that it will be worth it once you come out the other side.

Climbing the Metaphorical Mountain

“It’s not the mountain we conquer, but ourselves.” Edmund Hillary

Perhaps you knew the moment your baby was born.  Or perhaps a doctor sat you down one day and gave you The News.  In that very moment your destiny, and destination, changes forever.

In the beginning it is a very emotional affair.  One emotion that almost all parents will feel is DESPAIR.

Where on Earth do I go from here? How on Earth will life go on?

Your search box is filled with text that you didn’t know existed last week.  Words with far too many letters; words you can’t even pronounce.

All you can see is a mountain in front of you, so high that you can’t see the top.  So steep that you only see a wall.  The ground is rugged, uninhabited, sharp and dangerous. No human would choose to climb this mountain.

But slowly, after what could be days or months, the realisation comes over you that you have no choice.  In order to proceed with life, and for the sake of your family, you must climb this mountain.  You’ve got to climb it with no ropes or devices, no user manual, no training.

You hear distant voices coming from the top of the mountain.  People encouraging you, cheering you on, urging you forward.  They are sending you well wishes and virtual postcards from the summit.

You google ‘top of the mountain‘ but the results are too scary and daunting for you to deal with right now.

You see some distant figures making the climb above you.  You catch sight of some who are clambering effortlessly, while others seem to be slipping down the shingle and making little progress. But all of them are beckoning eagerly, telling you to keep on climbing.

The people at the top are hollering to you that it’s great up here.  They are telling you to keep your spirits up and stay positive.  You find it really difficult to believe them.

You challenge them with questions that you aren’t sure you want to hear the answers to.  You desperately want to hear the success stories, the heart-warming tales.  You aren’t ready to listen to tales of those who fell off the mountain.

You want to hear that each and every warrior making that journey reached the top and lived happily ever after.

Finally, finally, after what seems like five hundred years condensed into five minutes, you reach the mountain’s peak.

Words cannot express the euphoria you feel.  You have finally reached a place of acceptance, a feeling of peace and serenity.  You feel like you are home.

Not only does it feel like home, but you cannot even remember your former home.  It’s like you chose this place; this place chose you; and now you would not choose to live elsewhere, even if the choice was presented to you.

Some days the view is amazing.  You still find yourself gasping at the breath-taking little things that you could never really see from back down on the ground.   Some days, there is a rainbow so stunning it catches your breath.

Other days you are exposed to the harsh climate of the mountain top; the relentless rain and the blistering sun. The harsh and cruel storms and destruction that no person should normally be exposed to.

But as those storms pass, you once again see the sparkle of the paradise in which you reside.

You glance down at the rest of the world going about their lives on the ground, most of whom are unaware of the realities of life up here on the mountain top.

You send regular updates to friends and family, and sometimes they even come to visit.  But they don’t get to see and truly understand the miracle of this place like you do.  They don’t comprehend when you try to explain, the magnitude of the mountain and of the journey you undertook to get here.

Only those who stand alongside you here on this summit will ever truly know how you are feeling, what you have experienced, how you feel fear and how you rejoice in life.

From time to time, you hear a distant voice calling you from down on the ground.  You look down and see yourself, a few months or years ago. That person, and the family stood there around them: that was you.

You shout down the same words of encouragement that were once shouted down to you. The family send you the very same questions that you once sent.

And of course, you answer them with the same patience, understanding and empathy as yours had once been answered.

A little while later, that family comes to join you.  And life goes on.