It’s not a secret that you can’t walk

Although we truly believed you would

Last summer

And this summer

But we are still waiting

 

It’s not a secret that you can’t talk

But the few words that you can say are like the sweetest music

And when I say ‘I love you’, you say ‘bike’ or ‘cat’ and may never say ‘I love you too mummy’

 

It’s not a secret that you have difficulty learning

Learning to read, write, paint a picture for mummy’s fridge

Learning to push the train along the track

Rather than destroy the track

Learning that it’s not ok to hug strangers

Or throw your iPad across Starbucks

 

It’s not a secret that you wear a spinal brace

Although I used to buy extra-large jumpers to conceal it

And I want to punch people when they ask how long you will have to wear it for

Because it may be forever

 

It’s not a secret that you wear specialised boots

And will never wear Converse or Nike

 

It’s not a secret that you own a walking aid, a wheelchair, a school activity chair, an orthopaedic chair, a bath board, a toilet seat and a standing frame

And we have a cupboard full of free nappies

 

It’s not a secret that your best friends are Iggle Piggle, Noddy and Thomas the Tank

And your favourite playground is the consultant’s waiting room

 

It’s not a secret that I have cried seven times this week

And it’s seven days since I had a bath

 

It’s not a secret that I feel constant anguish over your future

Or the lack of it

Or the uncertainty of it

 

It’s not a secret that my fridge is full of wine

My cupboard is full of chocolate

And my calendar is full of appointments

 

It’s not a secret that I want to spend precious weekends with you

Not drinking wine with my mates

Like the old days

But reserve the right to want to drink wine with my mates at a moment’s notice

When I really need to talk about my woes

And expect them to understand

 

It’s not a secret that I used your disabled badge in Sainsbury’s car park the other day when you weren’t with me

 

It’s not a secret that the last four years have felt like forty

But forty of the best years of my life

 

It’s not a secret that I swear under my breath about 27 times a day

Some of them at you

Some of them at your baby brother

And some of them at your daddy

Not under my breath

 

It’s not a secret that I wake in the middle of the night to listen to you breathing

And sometimes creep in and stroke your face

Because you don’t really like me doing that when you’re awake

 

It’s not a secret that we wound the bobbin up

And back again

About twelve times yesterday

And I pointed to the ceiling, the door, the window and the floor

And you looked at me

And clapped

And signed ‘again’

 

It’s not a secret that I sometimes lie when friends ask if I’m OK

Because to explain why I’m not ok

Would be too painful

 

It’s not a secret that I sometimes have to hurt you

To keep you safe

To keep you out of harm’s way

To keep your quivering body still

Under the X-ray machine

Or to administer your medicine

 

It’s not a secret that the tears I shed for you

Are mostly tears of happiness

When you say a new word

Use a new sign

Get another award from school

Or give your baby brother a cuddle

 

It’s not a secret that I wipe your nose

Your bottom

Your tears

And will continue to do so for much longer than most mums will do for their children

 

It’s not a secret that everyone who meets you is intoxicated by your enchanting spirit

And that it’s because of you we have become better people

 

It’s not a secret that I only share a small proportion of my life with the world…

…because the rest is a secret.

I remember it like it was yesterday; pulling the car up onto the driveway and hearing Jenson say “hhhmmm”.

As a non-verbal then two-year-old, he was beginning to try to enunciate some simple words, and this was his version of ‘home’.

His poor oral-motor skills meant that progress with speaking was painfully slow.

He had attempted to speak the word ‘home’ hundreds of times before so this was nothing new.

However, when I turned to look at Jenson in the back of the car, I was met with his beaming smile, and his hands making a gallant effort to create the Makaton sign for ‘home’.

This was a defining moment that signified a clear breakthrough in Jenson’s communication.

The first time he had attempted signing.

For the past few months we had been repeatedly signing various basic words to him, and facilitating signing through games and play.

We hoped that some of it was blueprinting on him, but the truth is that we had no idea if anything was registering, because he was making no visible efforts to copy us.

It all felt somewhat abstract and we worried that it was to prove futile.

And then, our first Makaton epiphany: We discovered Singing Hands.

Up until then, Jenson had shown little longevity in front of the television; he would rarely sit and watch for more than five minutes.

Immediately on the introduction of Singing Hands into our lives, he was sitting mesmerised for the entire 45 minute DVDs!

It was as if these songs and scenes had accessed a new area of his brain.

Before long, Jenson was watching the DVDs on repeat.

The magical and captivating songs, hosted by the vocally-blessed founders of Singing Hands, Suzanne and Tracy, have provided a fun, simple and creative means of learning a good basic vocabulary.

Children are drawn in to the catchy and familiar lyrics and bright and cheery scenes.

Naturally, we watched the DVDs along with Jenson, and I even caught Jenson’s daddy conscientiously teaching himself the signs for colours while ‘I can sing a rainbow’ was playing on repeat!

I have no doubt, that Jenson’s inaugural attempt at signing in the car that day, came as a direct result of his new found love affair with Singing Hands.

I would highly recommend Singing Hands to all parents of children with communication needs, and in fact I know of many families with typical children that love them too.

We even went to watch Singing Hands at the theatre last Christmas, and that was truly magical.

Seeing the children’s faces light up when their favourite screen stars appeared on the stage was a moment to remember.

Singing Hands resources can be purchased via this link. Videos can also be accessed via YouTube.

Our second Makaton epiphany was the masterpiece that is Mr Tumble.

Jenson won’t go a day without watching an episode and not only has his signing come on leaps and bounds through this great TV show but also his attempts at speaking.

The catchy songs and hilarious characters ingeniously captivate children’s imaginations.

The dialogue that Jenson’s new found skills have afforded us is priceless.

He now has the ability to communicate to us his basic wants and needs, and we can respond, answer and satisfy him.

His fine motor skills are poor and so his signs require a certain level of interpretation, for example, ‘daddy’, ‘more’ and ‘bed’, all appear similar!

But to those that know him well, we can contextualise his movements and decode his gestures.

Both Singing Hands and Mr Tumble have been lifelines for our family.

They have curtailed the inevitable frustrations of not being able to communicate, and have allowed us the ability to engage in a basic dialogue with our son.

By learning signing, Jenson is developing his cognitive abilities, fine motor skills and even his concentration levels.

His baby brother is even starting to learn some signs too!

It is wonderful to feel that two-way connection with your child, even if it is as simple as ‘what do you want?’ – ‘yoghurt please’!

The reality is that we have no idea if Jenson’s speech will develop to the extent that one day he can hold a conversation.  But who says those conversations need to be in spoken English?!

His new enthusiasm for signing has opened up new hope for us.

Being just 17 months apart in age, my sister Lucy and I were like best friends growing up.

That has continued into our adulthood, and now, as grown-ups and mothers, this friendship is stronger than ever.

Personality-wise, we are like chalk and cheese, but perhaps that’s why it works.

As young girls we would hatch plans to have babies at the same time in life, and speculate on how our kids would be the best of friends: siblings rather than cousins.

As fate would have it (or perhaps we inadvertently created our own fate), we found ourselves ready to procreate at the same time in life.

We both commenced an industrious effort to conceive, along with the gallant assistance of our husbands.

We fell pregnant within six months of each other, Lucy leading the way.

When my gorgeous nephew Elian was born, the adoration I felt for that little boy was like nothing I had ever experienced.

Six months later, I had my own beautiful little baby boy, Jenson.

Our boys had a, ‘brother’, each and our childhood-hatched plans had come to fruition.

Therein began the genesis of our boys’ brotherly love. From that very early age and between those tiny tots, a unique relationship started to emerge.

Only a year on, my sister gave birth to a second boy, Xander.

We were all very excited by the prospect of three little boy-rascals running rings round us all, and moreover by their threefold brotherly bond.

It is fair to say that the first couple of years were a baby-blur for both of us. For Lucy, because she had two under-twos to contend with, but for me a very different reason.

Since birth, Jenson had been showing an increasing number of worrying physical and developmental issues.

Along with the perpetual hospital visits, I was emotionally drained.

Months and months of uncertainty were followed by a diagnosis of a rare genetic disorder, which presented as many questions as it did answers.

Fast forward two years:  Jenson is now approaching four years old and we are in a stable place with his health, development and schooling, albeit that he requires full time care and individualised therapy.

Now that I have provided the necessary pre-amble and set the scene, I come to the purpose of this blog, which is to pay tribute to my nephews.

The fog has somewhat lifted and the optimism of life has returned, and I can reflect on the past and anticipate the future with philosophical excitement.

My two gorgeous nephews, who squabble and row, fight and squeal, tantrum and terrorise just as ordinary three and four year olds do, show an extraordinary level of compassion and gentleness towards Jenson.

It is with great fondness and pride that I see the empathy that my nephews have fostered for Jenson.

My youngest nephew, who is barely into his fourth year of life, is fanatical about trains.

Last week, his meticulously constructed train track, equipped with bridges, turntables, and signal boxes, met an untimely demise when Jenson decided that the pieces of track made good projectiles across the playroom.

The poor little fellow suppressed his tears and set about restoring his masterpiece. Not a complaint in sight.

The three boys share a passion for vehicles; cars, bikes, scooters, trikes. Between them they possess a plethora of ride-ons.

The general rule is outdoors only, however Jenson is permitted to ride his trike indoors as this provides him with an element of independent mobility.

My selfless nephews seem to have an innate understanding of this exception to the rules and never show dissidence to it.

Seldom do they ask for ‘their turn’ because they see how much Jenson enjoys and needs that trike.

The behaviour that we witness from these little lads is captivating and awe-inspiring.

During play, snatching is eclipsed by sharing.

At the dinner table, rowdy outbursts become quiet conversations.

In the garden, running and wrestling is overtaken by hand-holding and helping.

They advocate for Jenson in the playground, and try to facilitate his involvement in activities that his poorly legs find arduous.

They industriously try to help him learn to walk, and demonstrate clear pride in knowing that they are playing a part in Jenson’s development.

They talk to him on FaceTime even though his words are somewhat undiscernible and conversations are one-sided.

They react endearingly and patiently to his insatiable demand for kisses and cuddles, which are often a little over-zealous.

Even before Elian and Xander were too young to have the situation explained to them, they subliminally and intuitively learned to alter their behaviours when in Jenson’s company.

And now that they are older, they accept Jenson for exactly who he is…

they have developed a level of comprehension way beyond their years.

I truly believe that they do see him as a third brother, and indeed Jenson shows such adoration towards them as if they were his own brothers.

It has been an extraordinary journey, and one I feel privileged to be part of.

I am very proud of my nephews and gratified that Jenson has played a part in helping them along the path to becoming honourable and humble young men.

It’s been a joy to watch the evolution and of this pure and simple brotherly love.

When I started my campaign to secure Jenson a place at Victoria Education Centre to be honest I didn’t know exactly what I was fighting for.

I just had a feeling that this was probably going to be the most important fight of my life…..

Well, Jenson started in class Explorers in September this year, and now half a term in, I now know EXACTLY what I was fighting for.

And yes, it really was the most important fight of my life!

People would ask me “Why do you want him to go to that school?” and I would babble something along the lines of ‘integrated therapies’, ‘inclusive approach’, individualised learning’.

But to be truthful these were just abstract phrases, the meaning and importance of which I had not fully appreciated at that point in time.

Seven weeks into Jenson’s school life at the tender age of three, I can wholeheartedly confirm just how crucially important these factors were in choosing a school for Jenson and also in getting him a place at this school at such a young age.

I am staggered and overjoyed with the enormous progress he has made in this short time he has been attending.

Equally, none of the improvement Jenson has made comes as a huge surprise to me because from the moment I met Sue, Gill and the team I was absolutely certain that great things were about to happen.

I guess I always just pictured school as a place for learning the conventional things in life, albeit in our case tailored to Jenson’s special requirements.

I had pictured him in the Explorers classroom making glittery pictures, bashing a tambourine, learning the names of farmyard animals, maybe even swimming with armbands.

What I had failed to realise was that his, ‘learning’, journey was destined to be so much more holistic than that.

Jenson’s teachers have developed his behaviour, his patience, his social skills, his choosing and communication.

They have taken it upon themselves to get Jenson drinking water and eating a rounded selection of foods, a feat that, for anyone who knows the battle we have had with Jenson’s extreme psychological aversion to feeding, is nothing short of incredible.

Every little issue I have thrown at them via the student planner and my incessant emails and phone calls (spot the obsessive mother!) they have taken my requests on board and addressed my questions and concerns.

Nothing is too petty or too bothersome for them.

In the mornings we are awoken by Jenson exclaiming, ‘Ooool!’, through the baby monitor (his version of ‘school’; his speech is improving too, thanks to Nicky!).

The journey to school is filled with anticipatory excitement, and as we pass Tesco and approach the school, the excitement mounts; ‘Ool, ool!’

When waiting in the entrance hall for his teacher to collect him Jenson cannot contain his excitement and often slips in through the automatic doors, much to Chris’s frustration!

Typically half a dozen staff members will pass by and without exception exclaim, ‘Good morning Jenson!’ and he will often reciprocate with a cuddle and kiss.

At first I would be slightly embarrassed and apologise while peeling Jenson away from his embrace.

But the Victoria experience has taught me that our kids are accepted for who they are; diversity is a great thing!

To name a few notable milestones, in the past seven weeks Jenson has learned to feed himself, drink water, swim with armbands, walk confidently with a walker, answer simple questions, and abide by routine and structure.

If these can be achieved in half a term at three days per week, I am very excited about the future!

As far as proud-mummy-moments go, they don’t get much better than seeing your child receive a Student Achievement Award, and over the past seven weeks Jenson has accumulated five!

These are presented during the lovely Lower School assemblies which have been an honour to attend.

Yesterday was the beautifully delivered Harvest Festival.

Next month, we have the Christmas Fayre. I have joined the Friends of Victoria group and plan to become involved in the Parents’ Participation Group.

My calendar has never been so full! I have met some lovely mums and carers, and some amazing children.

Each and every member of staff without exception has made us feel like their sole purpose in life is to advocate for our child, to develop him, protect him and achieve the very best for him.

For the best part of Jenson’s life we have felt like we are on the outside looking in.

Now for the first time, Victoria has made us feel like we are part of a family, a community, and that we are protected, accepted and cared for.

I look forward to being able to write again in a few months about more new milestones that Jenson has achieved, and to continue this exciting story.

Dear Daddy,

You knew from the moment I was born that I was different, but instead of letting it freak you out, you embraced it and you nurtured me.

You thought I was nothing less than perfect even from the first day when all the doctors were looking at my imperfections.

Every morning when I wake up it’s you that comes to get me.

You cuddle me in close with your big, strong arms and scuff my face with your scratchy beard.

I know you are desperately tired and need to get ready for work, but you play wrestling with me on the bed and Daddy, I know that you let me win.

You are my best playmate, and my best friend.

I know you are waiting patiently until the day that I can kick a football, and ride a skateboard.

I know it breaks your heart that I might never be able to do these things, even though you won’t admit it.

But thank you for loving me just the way I am.

You tell me you love me and call me, ‘mate’.

I love you too and you are the best mate any little boy could ask for.

You say I’m, ‘epic’, to all your friends and you show me off to everyone.

You aren’t embarrassed if I shout for attention or if I throw cake.

Thank you Daddy, for making Mummy happy, because when Mummy is happy then I am happy.

When you cuddle and kiss her, her face lights up, even when she shrugs you away to get on with the cooking.

Thank you for coming to get me when I wake up at 5:30am on Saturday mornings and letting Mum stay in bed.

She gets so worn down during the week even though she doesn’t do as much work as you, I am quite a big job and she works hard!

I am so glad that you get to the gym and football practice, even though your heart is telling you to come straight home from work.

I love that you have big strong arms for lifting me and I love hearing about all the goals that you score.

Thank you for all the presents you buy me even though some of them are really for you, like all the different models of planes and cars.

One day I will learn all their names and make you very proud.

Thank you for taking me to the park even though you have to carry me up the slide and catch me at the bottom.

And you have to hold onto me on the see-saw and roundabout even when all the other kids are doing it themselves.

And you don’t mind the other kids pointing and the mummies staring.

Thank you for my huge collection of vehicles that I can drive around the house and garden, and for understanding how much better it makes my life to have a bit of independent mobility.

I love it when you chase me and it makes me go faster!

Thank you for carrying my tractor, even though it’s the heaviest of them all, down to the park so that I can ride outdoors.

Sorry about all the times I go the opposite direction to where you’re heading, I just get so excited with the steering wheel!

Thank you for letting Mummy go out with her friends every now and then and for going easy on her the next day when her head hurts a bit.

Sometimes Mum needs to put all our troubles to one side and drink mummy juice with her friends.

Every day in our lives as parents to special needs children we encounter things that challenge us.  We just get on with it.

Going on holiday is no different; we are just paying for the privilege of doing it in a different setting.

So, it is imperative to get everything just right, so that the whole family enjoys themselves.

We all work so hard in day-to-day life that we deserve to redeem some quality time to put our worries to one side and let our metaphorical hair down.

We anticipate upcoming holidays with so much excitement because they are often the one and only time in the year that the family can be together properly.

There is so much at stake for that one or two weeks!

Even when we have downtime in our family (which is hardly ever!), it’s not genuine downtime, because I always find something that needs doing, a form that needs filling in, a call that needs to be made, a bunch of clothes that needs to be ironed.

I can no longer allow myself to simply sit back and relax because of the guilt I feel for not doing the jobs that need doing.

Holidays take away the option of doing those jobs, and place you in a position where you are forced to separate yourself from the daily struggles, giving you the opportunity to relax and let yourself forget about those horrible tasks back at home.

The problem is, if a holiday is not chosen wisely and planned properly, you can end up more stressed at the end of it, and need a holiday to recover!

So, here are five basic tips that might help families such as mine to make the most of their valuable time off:

 1. The Stay-cation

A holiday doesn’t have to involve an expensive visit to an overpriced commercial resort or a foreign country.

There are many good reasons to simply stay at home.

Turn off your work emails, dig out a few dust-covered DVDs or board games, search out some local attractions in your area that you simply haven’t had time to visit before, and take some day trips further afield.

Spend quality time as a whole family, where the stresses of everyday life are pushed into the background for a few days.

Children respond to, and savour, the joys of having their parents’ undivided attention and if those parents are relaxed and happy, this can harvest wonderful feelings of togetherness, regardless of whether you are home or away.

Save on the overpriced cost of flights and family accommodation, and use the money to treat your family to some indulgences at home.

 2. The Seaside

Time on the beach can be wonderful therapy for our children.

The freedom of being by the sea, playing in the sand and splashing in the waves can work wonders.

There are so many aids available to help physically disabled children enjoy these things, such as the Upsee for paddling in the sea, or the GoTo Seat for sitting in the sand and making sandcastles.

I have personally found the seaside to be a liberating experience for our whole family; we can be outdoors in the public arena but we have our own private space where we don’t have to worry too much about upsetting others with the clamour that our son makes, or the behavioural differences he may display compared to the next family.

There’s something about the combination of the sea air, the warm sand and the freedom of the ocean that makes for a recipe for a happy family day out.

 3. Happy Parents = Happy Kids

Make sure that the holiday is about fulfilling the child’s needs as much as your own.

Disgruntled parents who are getting under each other’s feet, or who are cheesed off with the low grade accommodation, are a dead-cert for impacting negatively on the whole family experience.

For example, if you have a toddler then it’s unlikely you’ll be going out for romantic dinners in the evenings, so ensure you book accommodation with a decent sized kitchen and dining area, perhaps a sunny terrace, satellite TV, or all of the above!

Why not even indulge in a setting with a whirlpool bath or hot tub, which the whole family can enjoy?!

 4. Do Your Research

More and more attractions these days give concessions for admitting a disabled child so look out for destinations that offer these, to keep the costs down.

Research the attractions for exactly how accessible they are, for instance does a boat trip allow for a wheelchair, and can parents accompany children on the smaller rides?

Use resources like Trip Advisor to see what others have said before you.

Call them in advance and you will be surprised as to how accommodating some attractions can be.

Use social media sites to request some suggestions and advice, there is bound to be someone who lives nearby the place of interest that can give you some invaluable pointers.

 5. Relax!

Use the opportunity of being away from home and everyday life to put your feet up and let your guard down.

Try to be more relaxed about doing things that you might not choose to do at home.

For example, if you avoid soft play because of the difficulties of carting your child to the top of the slide or the awkwardness you feel about the looks and glances from other parents, a holiday is a good time to expose yourself to these things.

You might surprise yourself with how much better and easier things are when you are relaxed.

Plus, everyone around you is a stranger therefore you will care less.

Maybe use the holidaying experience to experiment with changes that you had been toying with but hadn’t got around to, for example dropping a child’s nap, or feeding in public.

 

Whatever your choice of holiday, enjoy some wonderful and well-deserved time with your family…. You deserve it!

Happy Holidays!

My plan didn’t start off too well with an ill-fated marriage that lasted less than two years.

After several years in the wilderness I finally met the man that was put on this earth just for me.

We eventually fell pregnant but not before many agonising months of tests and uncertainty.

I started to ponder excitedly over our future child.

I still had faith in my fairy tale whereby my child would be remarkably fantastic, but I allowed myself to become a little more realistic.

I conceded that it didn’t matter if they were not the most gorgeous-looking child, the top of the class, or a trophy-winning athlete.

I acknowledged that child birth was going to be painful, and that motherhood would be draining and life-changing.

However, my optimism remained intact and I felt, like most mothers-to-be probably feel, that I was immune to the heart-breaking and life-changing scenarios that we are only vaguely aware of, in the periphery of our lives.

When I was due to give birth, I remember the age-old phrase of ‘as long as they are healthy’ making a few appearances, but this was just lip service and we didn’t really give any consideration to what the words represented, or the alternative.

The moments that followed Jenson’s birth defined the rest of our lives.

After a flurry of panic, machinery and swift moving doctors, my bundle of blue and grey bones was placed in my arms.

He gazed up at me and my life was complete.

I had my movie-moment: I cried, my husband cried, the baby cried.

It was a cacophony of delightful bliss and mounting anxiety.

He was rapidly surrounded by a gaggle of specialists.  The first, most noticeable thing was his birth mark; a squiggly purple blemish that patched its way from his foot up to his buttock.

It will always stay with me that my first thought was will he get a girlfriend?

Little did I know that my initial anxiety over this unsightly imperfection would soon be eclipsed by much more onerous concerns.

I often reflect back on how shallow this thought process of mine was, but I see that it represented my pre-motherhood naivety to the special needs world in which we now live.

As we counted Jenson’s fingers and toes and drank in our brand new son, we soon noticed the distorted positioning to his left foot, and the unnaturally clenched and overlapping fingers on his right hand.

As he opened his eyes to gaze at his mummy and daddy for the first time, we noticed that his right eye was larger than his left, and he had asymmetrical features.

When he didn’t take naturally to feeding, his high palate and very narrow mouth were brought to our attention.

The list of medical concerns grew as the hours and days went on.

Nevertheless, we left the hospital a few days later in a state of hazy bliss to embark on the start of our new life as a family of three.

For the first few months, we lived in a mist of new baby fever where our new little darling was our entire world.  The numerous hospital appointments, and well-meaning health visitors, were merely a rude disruption to our otherwise perfect family life.

The unrelenting referrals, appointments and tests started to become tiresome, with professionals poking, prodding, photographing, postulating, prognosing and pondering.

We tolerated this parade of strangers with the underlying confidence that soon it would just be a bad memory and blissful family life would be resumed.

In a world where everything was new to us, we had no idea how far from the, ‘normal’, new-born arena we were.

Alas, Jenson’s seemingly isolated problems didn’t simply disappear, as I had innocently anticipated.

Looking back over that time, it seems incredible that we didn’t recognise or give credence to any consideration for something more onerous.  I look back and see how naïve we must have seemed to those on the outside.

My husband and I had been existing in a bubble of perfection: Jenson had his little problems that we considered to be simply a transient phase that we needed to endure.

I don’t remember us having any conversation in the context of ‘what if’; we genuinely believed every little problem Jenson had was a compartmentalised issue that would resolve itself, and that each was mutually exclusive.

We continued to address his problems with the attitude that they were finite and fixable, and no one, not even health professionals, suggested that we should prepare ourselves for an alternative scenario.

Amazingly, we continued in this manner up until Jenson’s diagnosis, at 13 months.

Suddenly everything fell into place and all of his individual issues could be attributed to an extra little rogue chromosome in each and every cell of his body.

As much as we felt like we had been hit by a truck, we also felt a sense of relief for having a reference point, and an explanation.

I see now that the journey through the first 13 months of a pre-diagnosed Jenson was a gentle gradient into the world that we now live.

It was a kind and temperate exposure to the truths and tears that we have become accustomed to.

Our world as we know it is so far removed from the ordinary world that we could not have survived unharmed without that gentle acclimatising journey.

Our reality now is a world of special needs, hospitals, therapies, funding, education plans, mobility aids, meetings.

But we do normal things too! We go on holidays, we go to the park, Jenson goes to nursery, we go to work, we play with train tracks and diggers, we splash in the sea.

We just have our own bespoke and individualised ways of doing these things.

The bottom line is that this is all we have ever known, and this life was somehow divinely chosen for us.

We are not in a position to reflect on how differently things might have ended up, or how much easier life could have been.

We are not interested in these scenarios; this is our life and this is wonderful.

These are special times with a very special child.

We cherish every minute of Jenson’s life, in spite of, and because of, his special genes.

This is a difficult blog to write because I am simply not sure that I can do justice to the subject of this narrative.

It was a struggle to pick a suitable title, because the likes of ‘Supergran’ or ‘Great Granny’ simply seemed insufficient at embracing the magnitude of my message.

It is certainly true that we don’t fully appreciate our mothers until we become mothers ourselves.

Over the past three years I have come to appreciate and depend on my mum more than I could possibly have imagined.

Mum has a monumental influence on my family’s life.

She is a resource that I simply could not function without.

Jenson would be less happy, life would be less organised, and, well, I would be a bit of a mess.

As the mother of a three-year-old with multiple and complex needs, I have to rely on others more than I would like to.

This is a sentiment that will be very familiar to many readers.

My gratitude towards my mum for the reliance I can place on her is, quite simply, boundless.

I feel fortunate beyond belief for having my mother in my life, and for the amazing grandparenting role that she plays for Jenson.

From the day of diagnosis, when my world was irrevocably turned upside down, she has been right there by my side.

She has nurtured, embraced and cherished Jenson.

At no point has she wished for him to be, ‘normal’; for it is his very differences that make him so special to her.

She loves him unconditionally and she advocates for him and protects him like nothing I could have imagined.

My emotions fluctuate on an hourly basis from euphoric to miserable and with no prior warning.

My mum moderates, mitigates and pre-empts these moods in a truly deft fashion.

If I am glum because we have experienced a set-back, Mum will pick me up, shake me off and get me back on track.

If on the other hand, Jenson has just amazed us with a new skill, Mum is right there beside me shouting from the rooftops.  She experiences the very same raw, visceral emotions as me.

I don’t need to tell her what I am thinking; she simply knows.

I don’t need to tell her how I feel; she feels it too.

The emotional connection between Mum and Jenson is unparalleled.

His face lights up when she arrives, he cries when I prise him away to leave, and they exist in their own harmonious little bubble while they are together.

Mum’s been to the school of difficult parenting, having raised my sister and me, and she understands the arduous nature of this thankless journey.

She appreciates those powerful feelings of wanting to protect and provide for your child.  She knows how my mind works and can second-guess my reactions, my emotions, my thoughts.

She knows Jenson as well as I do.

She watches me parent him and she absorbs like a sponge, she locks in to my techniques, my preferences, my strategies and she takes these forward in her grandparenting.

She knows when to object and question my judgement, and when to accept and assent.

Mum is sensitive to when my husband and I need quality time with Jenson, even though I know she is eager to see her grandson.

She knows that we need occasional romantic nights out, and her offers of babysitting flow in abundance.

Attending a plethora of appointments is tough, especially while holding down a job.

And as we all know too well, they don’t make it easy for us, like giving lunchtime appointments to a two-year-old, or clinics that are running an hour late with a waiting room full of 20 agitated children and a modest supply of (mostly broken) toys.

Having Mum there not only makes things easier, but dare I say, sometimes even fun!

Whether it is gathering up the pile of detritus that we have dumped in the consultant’s office, or wiping up yoghurt from the floor of the waiting room, Mum is my wing-man.

She rearranges her own life to be there for us, to attend the appointments, to pick him up from nursery when I’m running late, and to look after him at short notice when he’s poorly.

I struggle to ask all the questions I want to ask, while I’m being distracted by Jenson playfully asphyxiating the poor doctor with his own stethoscope, or empting the clinical waste receptacle all over the floor.

I then struggle to remember all of the important information that has been departed on to me, for the very same reasons.

With Mum there, Jenson has his favourite playmate, and I have a dependable second set of eyes and ears.

I also have a second line of defence in a difficult conversation, a second opinion where things are not straight-forward, and an emotional backbone when I am dealt bad news and need a cuddle or tissue.

An eternal pillar of strength, but also an objective and rational third-party, Mum’s presence at appointments can be invaluable.

Carrying the bulky supply of feeding, changing and medical provisions along with the ever-increasing stock of entertainment resources, a second set of hands has proved to be indispensable.

Remembering all of these items, where I am prone to forgetting, is equally key to a successful trip out of the house.

My mum excels at all of this.

She is the most organised, pragmatic and systematic person I know.

Another important point about Mum is that she just gets on with it.

She cares not what folk think; she takes Jenson to Rhyme-Time, playgroups and soft play, immune to the vast differences between him and the other children, and insulated from the looks and comments.

All hail the bank of Mum!

If I was to add up the amount of time that Mum has spent caring for Jenson and equate it to even the humble salaries commanded by carers or pre-school practitioners, I would be indebted to her for the rest of my life.

Mum looks after Jenson for two full days per week and this does not even account for the additional appointment she attends, or the times when she looks after him so that my husband and I can have a night out.

What makes this fact all the more staggering is that Mum gifts her time to Jenson wholeheartedly for the love of that little boy, and for no reward other than to see him grow and develop, and spend time with him.

Mum is the most innovative person I know.  I have lost count of the number of times that I have been greeted with another new skill learned through Mum’s imagination, resourcefulness and tenacity.

Perhaps it is down to her former life as a PE teacher, but Mum has an amazing ability to create ingenious ways to push Jenson forward, physically and cognitively, yet keeping fun at the fore of all activities.

One day it might be a new set of colourful homemade flashcards, the next it is a novel technique to get him eating a new food.

Mum loves Jenson and Jenson loves Mum.

Simple, pure, divine and unconditional love.

And Mum, I love you too!