Emily Sutton’s husband, Matt, has hijacked her blog, and here’s what he has to say:

I don’t need lots of sleep, I can cope with disturbances such as my five-year-old climbing into bed for a cuddle at 3am.

Indeed, on the occasions my wife would like a cuddle at any time during the night that is always welcome so long as I get five or six hours and a good few shots of coffee the next morning I am more than functional.

Every now and then things catch up with me and on this particular Friday night I declared to Emily, my wife, “I am absolutely shattered! I’d like to convert my daddy voucher into a lie in tomorrow morning”.

The request was passed, and a restful night’s sleep prevailed probably with the sub-conscious positive foreboding of the prospect of an extra two or three hours sleep.

Although sometimes I struggle to make the most of a lie in because if I wake up I struggle to get back to sleep.

But this Saturday was perfect, I woke to the smell of fresh coffee from downstairs, cuddles from my boys and a re-assuring smile from my wife that meant that everyone was happy, things were under control and there was no urgency to accelerate my slow slumbering start to the day.

My relaxed demeanour wasn’t the only change to our Saturday morning routine – usually, I take our youngest boy, Coby, to Little Kickers.

Emily had already requested that she would take him on this occasion which meant I would get some quality time with Jenson, our eldest boy.

I planned to take him to our regular butcher to get the BBQ meat for the weekend and then to the local splash park, which is one of Jenson’s favourite activities.

Jenson has a rare chromosome disorder which manifests itself in many ways with mental, physical and learning disabilities.

His disabilities influence his behaviour and consequently mine and Emily’s behaviour in terms of what we expose him and us to as a family.

We often find ourselves asking should we take him shopping and absorb the judgmental looks when Jenson begins to tantrum when we are queuing at the till or should just one of us go shopping and not expose us all to the potential risk.

Discuss – maybe one for another post.

On this Saturday Jenson and I went to our butcher.

They know Jenson, Coby and me.

Usually Coby and I go and see our butcher men after Little Kickers, but today Jenson and I went to see them.

There was no queue, so I went straight into ordering our meat.

My mind at this point is busy.

Do I want the chilli sausages or Cumberland?

Jenson was walking around the butcher generally behaving.

Will he run outside into the road?

Will he run behind the counter?

Will he invade another customer’s personal space?

He was good.

He found a chiller cabinet with a sliding door and proceeded to amuse himself with a satisfyingly repetitive opening and closing action.

Again, I was uncertain as to whether this was acceptable behaviour, but Mr Butcher put me at ease by explaining how his grandson always does the same thing.

So, I felt at ease letting Jenson amuse himself in this way and finished my transaction.

However, a queue had formed, and a very elderly gentleman had taken exception to Jenson playing with the chiller.

The elderly gentleman slammed the chiller door closed, scowled at Jenson and looked at me to discharge his opinion of my incompetent parenting to let my five-year-old play with a chiller door.

Jenson was upset, I was angry with the old man.

Yes, old man, not elderly gentleman anymore.

I don’t know how much I paid for my chicken, burgers and sausages.

My mind was consumed with wanting to react angrily but supressed by the empathy for an old man that doesn’t know the bigger picture.

As Jenson and I left the butcher the old man said, “I would have got a clip round the ear for that in my day” and as much as I wanted to retort, “Euthanasia is legal in some countries”, I didn’t.

Still on a high from my lie in, the prospect of the weekend’s BBQ and still supping my flask of coffee prepared by my lovely wife, Jenson and I proceeded to the splash park.

We frequent the splash park regularly and it is a relatively safe place for Jenson.

Though I still must be on high alert as a parent as Jenson is very tactile and loves to hug other children or simply invade their personal space which as I’m sure you can imagine can go one way or another.

Unfortunately, it does often mean that we must leave such places prematurely or at the very least, make a handful of humble apologies to the parents of the harassed children.

Today Jenson invaded the space of a boy called Sam.

He hugged Sam, but rather than get pushed away, Sam hugged him back.

Jenson made the sign for “friends” before taking Sam’s hand and leading him to play in the water showers.

This whole short episode took me by surprise and I watched on, in growing wonder of the events unfolding before my eyes.

The next hour or so passed with Jenson and Sam playing together, forging a friendship through non-verbal communication, with hugs, hand-holding, splashing, running, chasing and lots of laughter and fun.

Sam was brilliant with Jenson.

He didn’t seem to care about Jenson’s rather direct interpretation on how to make friends and simply embraced it and accepted him for who he is.

There are many children who would accept the odd cuddle or approach from a strange child, but there are very few children that would choose to spend the next hour with that child, in preference to returning to their ‘age appropriate’ peers and activities.

Sam sacrificed his regular play, his regular activities, for spending time with Jenson.

I’ve never believed in things that were “meant to be” but maybe they are?

My wife had organised a skating session at our local skate park for our community of special needs families, I naturally wanted to invite Sam and his family and to mine and Jenson’s delight they accepted, changed their plans for the day and became part of our community.

I made a new friend in Sam’s mum and I am certain our families will become closer in the future.

Sam and Jenson played together in the afternoon at the skate park and they have both ended the day each having a new special person in their lives.

The moral of the story, the final thought.

Take from this information what you will but if you listen to me please don’t think I have any validated wisdom because I am 36 years old and ride a skateboard!

Take every positive out of your day, hold onto it, keep it close when the negatives try to invade.

They will dispel as quickly as they attempted to precipitate into your thoughts.

But above all else remember:

Respect your elders, even when it’s difficult, and welcome in the wonders like Sam.

Friends have been asking me when I’m going to write some more blogs.

I had come to love blogging about things that are important to me, about my experiences and feelings, but because life went systemically crazy, I couldn’t risk sitting down and writing down my experiences as I didn’t trust what I might say!

Nonetheless, it was constantly on my mind that I wasn’t able to get down on paper, what we were going through, over the last year.

Blogging for me during Jenson’s first three years of life was a therapeutic release.  It allowed me to retain some sense of sanity and expend some pent up anxiety and perhaps even resentment and anger.

So here I am sitting at my computer again with a frenzied worry that I’m not going to be able to recapture the writing spirit that I harnessed previously.

I have so much to say, so much has happened… But I’m sitting here staring at the keyboard, not really sure where to start.

We had a baby.

We brought a typical child into our world of special needs chaos, not unfamiliar I’m sure, to many readers.

The whole experience has been a rollercoaster ride of emotions, ranging from pure celebration of all things ordinary, through to the desperation of how I would possibly get through the day.

Who would have thought that increasing the number of humans in our family by 33% could increase the potential for stress, chaos and disorder exponentially?

One minute I’m rejoicing the delights of the sheer normalness of a baby achieving milestones, while breathing a sigh of relief that as each day passes I can’t find a reason to question his chromosomal make-up.

The next, I am spoon-feeding and nappy-changing a four-year-old who’s launching toy trains at his baby brother while playing hide-and-seek in my tupperware cupboard.

It is a petrifying thought that I perpetually and relentlessly have two small people whose survival and development rely purely on my actions every single day.

Some days, it quite simply feels like they are sucking the life out of me. Other days, it is the most joyful experience I could possibly imagine.

Probably the hardest part of these last few months has been my inability to cope with anything outside of the house when I don’t have a second adult to help me.

Coupled with people’s inability to understand why this is the case. To this day I still have friends that ask ‘do you and the boys want to join us at Costa for a baby-chino?’

A day at home with no other adult around is like a life sentence, made all the worse by the guilt I feel for not providing stimulation, fresh air and fun.

But, the great moments so far, far outweigh the not-so-good times.

Like when the oldest decides that instead of climbing into bed with us at 6:45am, he will head straight to his baby brother’s bedroom, reach into his cot, and say the word ‘brother’ for the first time.

Or when the youngest laughs with glee at his big brother who is splashing frenziedly in the bath, and signs for ‘more bubbles’.

I know that this period of time in which I am experiencing tumultuous ups-and-downs is relatively short lived – although feels like a lifetime right now – and before I know it I will come out of the fog and into another chapter. Not necessarily an easier chapter but a new set of challenges, joys and chaos.

I’m reminding myself that I’m playing the long game.

It will pay dividends and we will all be winners.

One thing is for sure though, my concerns about bringing another child into the world, and into this crazy family of ours, was the best thing we could have done.

For all of our sakes.

Last weekend something lovely happened that gave me a renewed hope for the future.

It was a simple occasion of two families crossing paths at the perfect moment.

We had spent the afternoon in the alpine adventure park attached to our local ski centre.

Matt ran around supervising five year old Jenson’s excitable explorations of each and every corner of the park, while I supervised one year old Coby’s tentative attempts to walk the plank and traverse the rope ladder.

It was a typical family outing for us where Matt and I barely set eyes on each other for about two hours.

The most contact we had was a fleeting glance across the park and a quick swap-over of children to give each other a break.

We were accompanied by our lovely friends who also had their two young children with them.

We’d barely had any chance to catch up with them due to the respective demands of our broods.

So when ‘alpine bar’ and ‘beer’ were mentioned in the same sentence Matt didn’t need asking twice and we were heading up the hill to the comfort of the warm indoors.

The warm, bustling, heaving, children-everywhere, stressed-parents, indoors.

I took a deep breath, feeling the anxiety rise up inside me, and politely pushed the double buggy through the crowded bar and seating to find the last unoccupied table.

By the way – double buggies. How do parents of twins do it? Apparently they are “only four inches wider than a regular buggy” but heck!

That four inches can sure give you a whole lot of shit.

Not to mention having an oversized five year old with limbs hanging out just asking to be squished in doorways.

I could feel multiple eyes watching my efforts to appease a sensory-overloaded, slightly exhausted yet highly excitable boy who was refusing to sit down, while I was trying to speed-read the kids menu and remove twelve layers of coats and jumpers.

Two high chairs in one arm, a wriggly toddler in the other, and guiding the buggy into a corner spot with my hip, I managed to negotiate everyone into position.

Matt took leave to the bar “to beat the rush” while I grappled for Jenson’s iPad while throwing PomBears in to the mouth of my littlest.

Feeling proud of the relatively successful outing so far, I dared to look up and glance around.

Noticing only a couple of mums and dads curiously looking our way, smiling politely and quickly glancing away, I was relieved when I spied my husband returning with my well-deserved glass of wine.

Noticing that half of his Ringwood Best was already gone, I resolved to let him deal with the inevitable carnage that would ensue when Jenson realised there was a soft play area across the way.

The iPad worked for long enough to settle Jenson until his jacket potato arrived.

As predicted, before long Jenson spotted the play area and the dozens of children running in and out.

His tuna mayo was no longer of any interest and he launched himself out of his seat signing ‘friends’.

I gulped and exchanged the familiar look with Matt that said

‘You or me?

It’s definitely your turn.

You’re closest.

YOU OWE ME.’

I was relieved when Matt jumped up having read my non-verbal instructions and followed Jenson accordingly.

He returned alone about five minutes later looking unusually relaxed.

This was a strange turn of events.

When I gave him my perplexed ‘what have you done with Jenson?’ look he simply said ‘it’s ok, he’s made some friends’.

Now this is where it gets interesting.

Jenson’s idea of making friends is along the lines of wrestling WWF style, or big aggressive cuddles and sloppy kisses; either way it usually doesn’t go down well with other kids and we will then retreat promptly.

My curiosity got the better of me and I went and peered into the soft play area.

I was greeted with a sight that I honestly didn’t ever think would be part of this motherhood journey for me.

A group of children were standing in a circle around Jenson. He was turning to each, one at a time, to play ‘round and round the garden’.

One little girl was coordinating the affair, by telling Jenson who was next and helping him move his hands.

He was paying close attention and was clearly quite taken by her.

When you have a child that you didn’t know would ever be able to stand, speak or play, never mind have a basic grasp of social interaction and turn-taking, a revelation like this can really knock you sideways.

Just as I was drinking in this sight to behold, Jenson started to cuddle a child a little too roughly.

I approached and took him to the side, reminding him to use ‘gentle hands’.

The aforementioned little girl approached me and I could immediately tell why Jenson had taken a shine to her.

A stunning little lady with golden locks, engaging eyes and a warm smile, she told me that she liked Jenson’s accent.

Jenson doesn’t really speak sentences; he laughs a lot and will talk incessantly in single, somewhat incoherent words.

So this took me aback and for some reason I felt that this lovely little angel deserved an explanation.

So I mumbled something along the lines of thank you, he can’t talk properly because his brain doesn’t work like other children’s.

Well as if this little poppet couldn’t endear herself to me anymore, she then proceeded to say ‘that’s ok, he’s really nice’.

Simple.  Pure.  Innocent.

I retreated to my glass of wine with a little tear in my eye, eager to relay the story to our friends, who, having known Jenson for several years and have shared our torment in public situations, were equally in awe as Matt and I were.

Jenson remained in the soft play area for another twenty minutes or so, with some minimal supervision from Matt and me. We had established that there were three children that had taken Jenson under their wing, one of whom being the little fair-haired girl. They had established his abilities and limitations and were keeping him safe and including him in their games.

We sat, watched from afar, and chatted.

CHATTED!  A simple luxury that had become a stranger to us both when out of the house with friends.

We decided it was time to take our little pickles home and so I went into the soft play area to retrieve Jenson.

As I approached the play area and saw Jenson was still happily interacting with his buddies, I had an enormous desire to locate the parents of the mystery girl who had befriended Jenson.

I glanced around at the gaggles of mums and dads and decided that it would probably be a silly exercise to approach strangers’ tables and ask if they own a little blond girl.

So I resolved that in this instance, I’d have to leave without passing on any recognition.

One dad was already in there gathering his brood, and I was delighted to establish that he was father to a little boy called Luke, who had been one of the three that was instrumental in Jenson’s enjoyment.

I mumbled something to the dad about how great Luke had been, and he was clearly delighted to receive my platitudes, and complimented his boy on his good behaviour with a fatherly pat on the head.

As the boy and dad left the play area, the dad called out ‘come along Freya’ to which Jenson’s little blond buddy scuttled out from under the soft play tower she’d built for Jenson.

‘Wait, Freya’s yours too?!’  I exclaimed before I could stop myself.

‘Yes they’re twins’ said the bemused dad: ‘Luke and Freya’.

Well at this point I was concerned about two things, crying in front of a stranger and looking like a bit of a fruit-loop in front of a stranger.

So instinctively I knelt down to Freya’s level (figuring that a small child was less likely to notice the growing pool of tears in my eyes than a grown up), and I said to her ‘thank you Freya, for being Jenson’s friend today, because Jenson doesn’t have many friends so today you made him really happy’.

Freya looked up to her dad as if to ask permission to talk to a stranger and quietly said, ‘We had fun’.

I stood up and mumbled something to Freya’s dad about his children being very special, and he was visibly touched and grateful for the compliments towards his twins.

As we were leaving Freya gave Jenson a lovely wave and Jenson excitably yelped and signed ‘friends’.

Taking stock of the situation on the way home, Matt and I agreed that it was a bittersweet scenario where we were celebrating such an ordinary, natural occurrence.

One that is taken for granted by regular families every day, and one that we didn’t allow ourselves to believe may ever happen for Jenson.

At home that evening, I had the overwhelming urge to reach out to the parents of Luke and Freya.

The fleeting exchange that I had with the twins’ dad was repeating in my head and I wished I could have been more vocal, more enthusiastic and more complimentary.

Been able to communicate to him just how significant his children had been in making for such a lovely experience for Jenson and for us.

But it was for fear of appearing emotionally unstable to a stranger that I had held back.

So of course I took to Facebook.

I recounted a short version of the events of the day, and at the end of my past I requested that everyone share it so that I may find the parents and share the thoughts that I’d been unable to share at the time.

Within two hours the post had attracted over 100 shares and lo-and-behold the twins’ mum sent me a message!

She was modestly grateful for the compliments about her children and explained that the children had been talking about Jenson a lot since their meeting.

She also explained that her eldest daughter had been present and in describing her to me, I figured that she was the older of the three special children that I had witnessed being Jenson’s friends.

We are all very much looking forward to meeting up soon and watching our children play together once again.

Jenson asks every day for Luke and Freya and I am told that they also speak of him too.

I have decided that if I am to take one thing away from this experience, it is to approach future such situations with less trepidation and more optimism.

Because I am sure there are many more children out there that would take Jenson under their wing just as Luke and Freya did.

And ultimately, if our children are learning this lesson of inclusion and understanding at this early stage in their lives, this can only be a great thing for the future.

One of the lesser known eating disorders is ARFID (avoidant/restrictive food intake disorder).

ARFID is a psychological disorder where the individual has clinically significant difficulties with eating or feeding.

The onset of ARFID is usually during a child’s infancy or early years, and is attributed to a number of circumstances.

Severe reflux during the new-born period can instigate bottle/breast refusal, as can a traumatic choking experience during weaning or early childhood.

Children with autism spectrum disorder may demonstrate sensory processing issues associated with certain colours, textures, tastes and smells.

Some neurological conditions can result in underdeveloped oral motor skills in young children and babies, resulting in eating and drinking being an unnatural and alien experience.

This was our story: Jenson was 13 months old when we learned of his neurological genetic disorder and by then the damage had been done.

But whatever the cause, the consequences of ARFID include a learned and instinctive behaviour towards food where the young person considers it to be a threat and therein instigates food refusal. It is akin to a phobia.

Sadly ARFID is largely unfamiliar among health professionals as a recognised mental health disorder, and it is dangerously un-resourced by our health authorities.

I have sat in front of many health professionals educating them on the subject; most have been eager to learn but some still box it with ‘picky eater’.

Where weight isn’t an issue, for example if a child is surviving on just chicken nuggets or potato waffles, parents are frequently told the child will ‘grow out of it’.

Parents are judged, sufferers are misunderstood. Consequences can be devastating.

Very sadly, the default care pathway for small children where weight gain is compromised is to place a feeding tube.

This is the equivalent of sticking band aid on a wound and leaving it untreated. Children who have tubes placed often relinquish their potential to eat forever.

At 2 and a half years old and with a dangerously low consumption of high calorie prescription formula, we were at our wits end with Jenson’s refusal of anything solid.

He was dancing dangerously close to dehydration and his contempt of all foods was not showing any sign of waning. It was a heart-breaking and gruelling couple of years which traumatised all of us.

When your child won’t feed from you, breast or bottle, or eat your prepared foods, the emotional onslaught as a mother is harrowing.

It was Jenson’s low muscular tone throughout his body that meant he had reduced oral-motor coordination.

His mouth sent messages to his brain that any spoonful or mouthful was a choking hazard: it was threatening his life.  The brain responded by creating a barrier and feeding refusal was born.

We had exhausted all the well-meaning advice from speech and language therapists, occupational therapists, dieticians and paediatricians.

He was classified as ‘failure to thrive’ and gastrostomy surgery was scheduled.

It had been the most upsetting and traumatic few years, watching your child seemingly choose to starve themselves, and for no one to understand, never mind be able to help.

I accepted that a gastrostomy was inevitable but a small voice in me was shouting out that he deserved to learn to eat, that I must not just give up on this possibility.

As a last resort I trawled through Facebook groups. I found some expertise about ARFID and I can only describe it as an epiphany.

We challenged and campaigned our local NHS but were unsuccessful at being heard or understood.

However, we were fortunate enough to secure some private specialist help and an expert team to pave our way forward to bring Jenson closer to accepting food.

So today, at 5 years old, Jenson asked me for a cup of water, and then electively and independently fed it to himself. Only parents of children with ARFID will understand the magnitude of this event.

So I whipped out my phone, took a photo (see above!) and whipped out my laptop, and wrote this blog.

Jenson is now eating a range of foods but we still have a long way to go to counteract the underlying and widespread effect that his ARFID caused to his relationship with food and feeding.

ARFID is not picky eating. It is not bad parenting. The child won’t just eat when they’re hungry.

In fact, the feeling of hunger becomes so normalised to them that they can develop a permanently distorted and diminished appetite.

In ARFID, a sufferer’s brain will react pathologically to food akin to a diabetic reacting to sugar. They may gag, vomit, thrash out, cry. Therein lies the perpetuation of the no-eating cycle.

Health implications can be huge as a result of chronic malnutrition. But ARFID can also have widespread social, developmental and educational consequences.

Bullying, social isolation, dental decay due to severe oral sensitivities, traumatic school lunch breaks, families unable to dine out together.

Family bonding is often underpinned by the dinner time ritual and routine, but where this is interrupted by an ARFID sufferer the whole family is affected.

It is excruciating to watch and experience ARFID in its path of destruction.

I hope that this medically recognised mental health disorder can become more readily diagnosed and treated, and that the healthcare system can resource our health professionals so that children don’t have to suffer like Jenson did. #beateatingdisorders

I’d like to take this opportunity to thank the wonderful team of people who turned things around for us.  Jenson’s feeding fairies:

Midland Psychology Specialist Feeding Service

Active Play Therapies

#tubetochicken

#martinmethod

Mums of disabled kids: We’ve all got ‘that friend’, the one that would do anything for you and your child.

The one that always knows what to say, when to call, when you need an extra-big cuddle or extra-large glass of wine.

As we know too well, when we become parents of disabled children we can experience desertion and isolation, and this is all the more heart-breaking when it comes from people you classed as friends.

But this blog is not intended to bang the drum about friends deserting you when you become a special-needs mum.

There are a million blogs out there on that topic.

Today I want to talk about the friends that support and champion us. The ones that understand us and our children, that give with no expectation of thanks or reciprocation.

One thing that became apparent to me shortly after I found myself catapulted into the category of ‘special-needs parent’ was how fortunate I was to have a friend who was just there.

Yes, you. You know who you are.

For the first 12 months of my son’s life, I don’t think I’ve ever needed a friend as much as I needed you then. I’m not sure that I even knew how much I needed you then, and how much you did for me.

I certainly didn’t thank you, in fact it’s only now, five years on, that I can take a retrospective view and see just how important in my life you were.

It’s difficult to express exactly what made our friendship so valuable and instrumental in my mental health and sanity.

Often it’s just the little things that make a big difference.

You always know what to say even when there’s nothing to say.

You behave like a protective parent on my behalf when the three of us are out in the big wide world.

You cry with me when I share my sorrows.

You’ve given up your one day off to be with me and my child.

You give the most thoughtful presents; you don’t make embarrassed excuses for why you have chosen something from the toddler section.

Your first question when we meet up is always “How’s my little man?”

You show incredible persistence at trying to get me out for an evening, even though most offers are deflected by my claims of being tired and bad company.

You demonstrate continued efforts to work hard at our friendship, even when mine have been desperately poor in return.

You never tell me everything happens for a reason. Or that God only gives special children to special people. Thank you for that.

You get to know my child, inside out, even though it means having your beautiful hair pulled out and your clothes slobbered on.

You never once wince or recoil.  You just laugh and continue the play fighting that you know gives him such enormous joy.

I have stopped apologising to you on behalf of my son. You just get it.

This perseverance has paid dividends because now it’s you that he asks for when I say we are going to see a friend.

It’s your name he yelps when he sees a silver soft-top drive past.

It’s your picture he scrolls to on the iPad photo library.

You doesn’t have your own children, is it because of this or despite this that you have so much love to give mine?

Thank you, to my friend and all of the other friends out there. The job you do for us is worth more than you will ever know.

We have just been victorious in our third giant battle against the powers-that-be, and I wanted to share our experience so that it might help empower others that might need some help or encouragement when battling with their own challenges.

Stepping back in time, our first battle was when Jenson, aged two, required psychological interventions to treat his severe oral aversion.

We challenged our local health authority to provide funding for a service that was outside of the usual NHS remit.

We encountered months of contesting and campaigning, and endured a thoroughly miserable time, during which Jenson’s intake had reduced to a dangerously low volume of his prescribed high-calorie milk, and he was refusing all solids.

Dancing dangerously with dehydration, and a week before the surgery date for insertion of a feeding tube, we were victorious in securing the service we required, which made a life-changing difference to our whole family, and to Jenson’s future.

Our second triumph was securing a place at Jenson’s specialist school at the age of three.

After looking closely at all three special needs schools in our area, we were absolutely resolute that one of these was the best school for him, and the only school that could fully meet his needs.

The school is run by a charity and provides everything under one roof, including orthotics, physiotherapy, speech and language, paediatric consultancy, horse-riding and hydrotherapy.

The local authority, however, wanted to send him to their choice of school, which being a local authority school, was ‘lessening the burden on the public purse’.

After a lengthy battle, we were successful at securing a place for Jenson at our number one choice, where he has just entered his second year, and is thriving.

This brings me onto our latest battle, which we have just conquered.  We have finally secured transport for Jenson to and from school.

We were denied transport initially, on the basis that we were offered a place at this school on the agreement that we provide the transport ourselves.

I originally bit the local authority’s hand off with delight at having won a place at the school for Jenson, but one year later, and being back at work after a second baby, I was really feeling the pressure!

Two hours per day of driving backwards and forwards was really encroaching on my professional work and my ability to care for my children.

I decided to investigate the legalities of the situation and thereby I established that we are legally entitled to transport.

As I delved deeper into the laws and codes of practice and the specifics of the situation were unravelling, it was evident that we were weaved into an ever-increasing web of loop-holes and ambiguities.

Still, I battled through and 12 months on was successful.

It is fair to say that I have spent a ridiculous amount of time on my computer while battling through these ordeals: Google, Facebook support groups, contacting people that I knew, hassling people that I did not know!

I pestered the authorities – NHS and Council, gently at first; I ascertained who my allies were and scoped out my adversaries.

I wrote letters of complaint, I submitted appeals; I even put in Freedom of Information requests, just to raise my profile as the ‘bothersome mother’.

I trawled through government statutory framework documents, local authority policies, and codes of practice.

I quoted The Education Act 1996, and even referenced a High Court precedent regarding qualification of the term ‘public expenditure’ in regard to the overlap of education with healthcare costs.

I sent emails with ‘high importance’ flags, and I sent carbon-copies to line managers and as high as the Director of Children’s Services and NHS Chief Executives.

I spent hours on the telephone to SEN agencies, children’s disability charities and legal advisors, appealing for advice and expertise knowledge.

I calculated and submitted NHS reference costs to demonstrate the benefit to the public purse of our choice of approach.

(For example, in 2015/16 it cost a national average of £2,313 for endoscopic insertion of gastrostomy tube in a child and £212 for every gastroenterologist consultant-led appointment.  It also costs £20 per day for the prescribed specialist feed.  The alternative one–off cost to provide psychological treatment was unsurprisingly a significantly cheaper option, but to impress this point upon the powers-that-be was an unwieldy task!).

I wholeheartedly believe in our NHS and our social care system, and am proud that our country has these services at the heart of our society.

If this was a politically-motivated blog then I would have an awful lot more to say about the way that our current government chooses to use national resources and prioritise it’s spending and austerity plans, but I will save that rant for another day!

It is certainly true, however, that the systems embedded in our society are not always easy to navigate and without tenacity, resourcefulness and a huge dose of bloody-mindedness, it is easy to sit back and accept less than you are entitled to.

I could go on and on about the battles that we came through to get the very best and most appropriate treatment, care and education for our son.

I’m sure there will be more battles to come, in the future.  But for now I am content that we have done the very best for him so far in his short life.

Once upon a time we were drifting through our happy, ‘typical’ lives, all spread out across the country, never for our paths to become intertwined.

Then, along came Mother Nature with a pregnancy, and into that pregnancy she kindly dished out an extra pair of chromosomes.

Our babies were born and, therein, began our journey into our special world of friendship and discovery.

The next few months would include some very dark, sad, and overwhelming moments.

Times of frustration, deep sadness and desperation.

The feeling that we were alone, watching the others, that used to include us, going about their seemingly easy and relaxed lives, with their neuro-typical children.

Then, one-by-one, in our own time, we decided to look for help by way of social media.

We joined Facebook groups:  Tetrasomy 18p (created by an aunty in New Zealand) and the official Chromosome 18 Registry & Research Society group.

The fog started to lift, as the existence of other families, just like us, was unveiled.

I trudged through these groups, desperately seeking out any members that were also in the UK, and it became apparent that there were a handful of families.

While doing this, a message popped up from my now dear friend Jessica, welcoming me to the group, and offering some beautifully heartfelt words.

The exact words that I really needed to hear right there and then.

Since then, I would like to think that I have paid that gesture forward to several other families, who at a later time were going through the exact same anguish, and who now, are also very good friends.

It was apparent to me that Jess, myself and the other parents that I had connected with, could really benefit from a UK-based Facebook group.  So that’s what I undertook to create.

My primary reason for starting the group was for practical purposes; so that UK families had a place to discuss topics that were specific to the UK.

For example, how to navigate our NHS for therapies and equipment, discussions around childcare and education, and the social care and benefits systems.

However, I did not anticipate just how quickly this group would grow and flourish.

Before long, we were sharing our anxieties, celebrating our triumphs, confiding in each other with our concerns, posting pictures and videos and bouncing around ideas.

Friendships were born and were growing at an exponential rate.  Even the dads and grandparents were getting involved!

At this point, only a handful of us had met up, through the previous European conferences, but in the main, we existed as ‘virtual friends’.

It was evident to me that we needed to arrange to get everyone together.

Six months later in the height of summer 2015, my husband and I hosted our inaugural ‘Tetra Get-Together’ at our home in Christchurch, Dorset.  Seven families came from all across the UK.

We had an absolutely wonderful weekend of fun, barbeques, beach, surfing and sunshine.  You can read the blog I wrote after this event, here.

This was the advent of our new-found friendships, from virtual friends into the world of real-life.

Skipping forward two years, I have lost count of the number of times we have met up with our dear friends.

Holidays to Devon, six-hour road trips between Harrogate and Bournemouth, Christmas concerts at the theatre, weekends in Bristol, trips to visit new-born brothers and sisters, a charity half-marathon in aid of Chromosome 18, and of course most recently, an amazing group get-together in Croydon which hosted in excess of 80 people!

I have been asked by the Chromosome 18 registry to blog about the, ‘blueprint’, that has made our group so successful.

I really cannot put my finger on why, or how, our Facebook group became so much more than a Facebook group.

One thing is for sure, we put our children at the heart of everything we do, and we celebrate each other like family.

We cherish achievements and lament the losses, we confide like the closest of friends and we harbour no envy, judgement or prejudice.

When we meet up, I find myself feeling so relaxed and at ease, relinquishing those usual concerns about the pressures and judgements we are exposed to in our regular lives.

We are the centre of our own universe; we are the typical ones.

We need show no embarrassment or shame, where real life would impose it on us.

Is it luck or coincidence, or something more metaphysical, that resulted in us all being so like-minded, and such kindred spirits?

And that goes for the dads too; their interests, senses of humour, and characters are uncannily compatible.

We have regular FaceTime calls so that the children can laugh, chat and show each other new skills.

We have WhatsApp groups for regular contact, we send birthday gifts in the post and even ‘thinking of you’ gifts at sad times.

We always have a meet-up in the planning; right now we are hatching our plans for a long-weekend in London for the Singing Hands Christmas concert.

Last month we had our wonderful friends from Harrogate visit us in Christchurch for a week, and we shared some wonderful days out and made life-long memories.

Life before Tetrasomy 18p is a distant memory, and if I ever find myself answering the theoretical concept of ‘if I could take away Jenson’s t18p’ my initial and overriding reaction is one of horror, that I would lose these friends, and Jenson would lose his best buddies.

Where some of our old friends have dwindled and deserted, our friendships have grown and galvanised.  We have taken residence deep in each other’s hearts.

I would class the friends I have made through Jenson’s rare genetic disorder among some of the very best friends I have ever had.

It’s a bizarre thing really, the way that fate determined a group of people’s paths to cross, who would otherwise never have met.

In September last year I took Jenson to school for the first time.

My little baby boy was only three years old – was I doing the right thing?

Would he thrive, or be overwhelmed?

Was I right to abandon mainstream nursery for this specialised early years provision, at such a young age?

I cried that day when I dropped him off.

Well, he cried later that day when I picked him up.

He didn’t want to leave; he was having far too much fun.

We haven’t looked back since.

It’s impossible to quantify or put into words (or a school report) how much Jenson has learned in these past three terms.

To paraphrase the school’s standpoint on assessment: it is preferable to assess students by what the school values the most, not what is easiest to measure.

Two plus two might still give you “cat” in Jenson’s world, but ask him to join in with a sing-and-sign or sequence the letters in his name and he is showing impressive advances.

Therein lies the conundrum.

How can we reliably evaluate a child’s progress in confidence, patience, independence and attention?

Jenson’s teachers have shown me that in fact, these things are wholeheartedly valued, observed, appraised and documented at every step of the way, and our children are rewarded and recognised throughout their learning journey.

Gone are the days when I fretted over whether Jenson would acquire any academic skills or qualifications, whether he would show prowess in the prose of Shakespeare or Chaucer, solve a quadratic equation or apply Newton’s second law of physics.

The conventional definition of ‘achievement’ has been overturned and we have a whole new realm of measurements by which to define Jenson’s progress.

Despite coming from family that holds academia in high regard this was a surprisingly easy u-turn for me to take.

It has been refreshingly pleasant to be able to abandon the stark, one-size-fits-all assessment framework of the mainstream world, and embark on a learning platform uniquely designed with Jenson in mind, putting enjoyment and positivity at the centre of everything he does.

He is a different child to that coy, bottom-shuffling little three year old I dropped off at school last September.

He glows with energy, sparkles with excitement and dives head-first into new challenges.

In three school terms he has progressed from bottom-shuffling to independent walking, with the help of specialist equipment, physiotherapy, orthotics and a whole heap of determination, from himself and the team around him.

There were a few tears of joy that day when I came into the classroom to see five of Jenson’s teaching staff standing in a circle around him, cheering him forward, as he took his first steps.

Who would have ever predicted that, one year on, Jenson’s repertoire of vocabulary would be so vast, and he would be able to answer questions and communicate his wants and needs?!

Or that for a child that wouldn’t eat or drink until he was two and a half, he would be willingly sitting with his friends at lunchtime, eating adult size portions of stroganoff?!

Amazingly he seems to know the days of the week:

Monday morning he greets us bright and early with, ‘oool’, (school) and, ‘erk’, (daddy going to work).

I’m sure he knows when it’s a Wednesday as he says, ‘imming’, (swimming).

This year Jenson has received a plethora of awards and certificates, including four swimming badges, student of the week on five occasions, awards for art and technology, music, speech and language, PE and physiotherapy.

I have attended the Friday lower school assemblies and the end of term assemblies to watch the award presentations and I have shed a little tear for each and every one.

At the most recent presentations, Jenson has even walked up to Mr Brown to accept his certificate, before taking a lap of honour, hugging each of his Explorers staff, and reluctantly sitting back down!

It has been a privilege to meet Jenson’s class buddies each of whom I have become very fond of.

I’m really looking forward to watching William, Barney, Elisa, Leanne and Delilah grow and learn along with Jenson, in the many years to come.

I’m also so grateful for the friendships I have made with parents and the support I have received from the staff, on a personal and professional level.

The support network and feeling of family spirit is omnipresent throughout the school.

I now also meet up with mums outside of the school which gives us all a great opportunity to let off steam, chat without interruption, and laugh and relax together.

My family has also been actively involved in raising money towards the school’s expedition to NASA, Florida, for some of the older students to achieve the Gold Duke of Edinburgh award.

There have been enough memorable occasions this year that I could write a book; a blog just isn’t sufficient.

Along with an open invitation to attend the weekly lower school assemblies, parents are encouraged to attend the end of term assemblies and a host of other social events throughout the year.

Events this year that are etched in my memory are the Harvest Festival, Christmas Carol Service, Victoria Grand Prix, sensory bubble workshop, performance by the Bournemouth Symphony Orchestra, and Vintage Car Show.

The amount of extracurricular and off-curriculum activities that are provided leave me at a loss to know where the staff find the time!

Whether it be trips out, visits from theatre companies, national sports week, Strictly Come Shakespeare, or creative arts week (the list goes on), the dedication, inspiration and sheer hard work from staff is awe-inspiring.

If I could sum up with the three most inspiring things about Victoria, it would be the warmth, energy and unity that you feel every time you step through the front doors, the equity with which the students are treated across the school, and the unequivocal passion and dedication imparted by every member of staff.

The year has been a whirlwind of fun, learning, friendship and discovery. And that goes for Jenson and myself!