I see you looking at my little boy.

I see you looking at him, and then looking at me as I’m looking at you looking at him.

Then you quickly look away, but steal another look at him.

And at me.

What do you see when you look at him?

Do you see a disabled child? 

A child who is awkwardly bottom-shuffling along the floor of the soft-play trying with all his might to climb a foot-high step?

A little boy who is attempting to feed himself custard, and it’s going all over his face and clothes?

A child that’s being pushed around in an adapted trike while we wait for the wheelchair referral?

You’re thinking, I wonder why his mum doesn’t help him over that step.

I wish he would get out of my Tommy’s way!

How can she let him make such a mess; why doesn’t she wipe his face?

Why is he eating custard and not a proper meal?

Why is he being pushed around in that thing, I wonder why he isn’t walking?

Poor boy. Poor family.

Look a bit closer.  

What do you really see?

I’ll tell you what I see.

A child who has had to learn the hard way, learn to let all the other kids push past him, knock into him, step on his fingers.

A child whose neural pathways are carrying scrambled messages from his brain to his legs.

A child who has bravely tolerated two years of feeding therapy and now eats orally, against the odds, even though the muscles in his mouth don’t work properly.

A child that sits patiently in the trike even though he wants to be off, on his bottom, exploring the world, and doesn’t understand why it’s not always appropriate.

Consider this: while your child has been running around at playschool making potato prints, mine has been making best friends with six different therapists.

While you have been back at work and pondering over baby number two I have been juggling part-time work with full-time therapy programmes.

While you can get a baby-sitter for a night out, we have to get friends to come to us, as we can’t rely on just anyone to understand his needs like we can.

And talking of friends, imagine if some of your closest friends became increasingly distant because they don’t know how to cope with, or react to, your child.

I don’t mind you looking.  

I don’t mind you staring.

I don’t mind you nudging your mate and talking.

I don’t even mind what you are thinking.

I did mind, for a long time, and it did me no good.

I have now reached a place where I can happily look at you, looking at my son, and look you in the eye, and smile.

Because he’s mine.

He’s all mine, I get to take him home and watch him grow, develop and flourish.

I’m sorry for you, because you’ll never get that divine feeling, that opportunity to watch something amazing happen.

Let’s put it into perspective.

You probably don’t remember the first time your child independently climbed up the steps and slid down the slide.

Box ticked!

Move on to the next milestone.  

Well, I can certainly remember the joyous first time we could safely release my son from the top of the slide, to slide down on his own.

While you were applauding your child for counting to ten in French, we were celebrating our son for pronouncing his first consonants.

Not necessarily in English.

I feel bad for you.

It’s hard not to look, it’s hard not to judge, and it’s hard not to wonder.

But it is easy to show empathy and compassion.

If you are curious – talk to me!

If you are offended – don’t look!

You make me feel empowered.

Empowered by your awkwardness, your embarrassment, your irritation.

I simply feel proud.  

Proud to know the real story and the real boy, and be a part of his really amazing journey.

I am also aware that for every insensitive and unkind person, there are dozens who are genuinely interested, impressed, endeared and enamoured by my son.

Those that can see through the spinal brace, inappropriate behaviour and delayed speech, and see the marvellous little man underneath.

On the scarce days that I strike up conversations with these people, it really makes my day.

I take comfort in the fact that we have made a tiny yet significant impact on their life.

I wish more people could be more accepting of the multi-dimensional world around them.

These days it seems that it is more socially acceptable to be cold, quiet and vapid than to be sensitive, open and amicable.

So, next time you steal a look at him, then back at me, and then sheepishly look away, perhaps go home and look in the mirror.

What do you see?

Talking to a friend the other day, I was recounting the dramas we have been through recently, regarding my two-year-old’s food intake disorder.

Part of my account went something like this:

“I’ve got this Facebook friend, who had a similar experience, and what she did was….”

But, when trying to conject the perils that my ‘friend’ had been through and how this relates to us, I kind of lost the interest of the friend in front of me, presumably due to the hypothetical nature of the story.

The problem is, to me this is not a hypothetical story, nor is she a hypothetical friend.

Her story is very relevant, and she is very real.

She, and her son, are very close to my heart.

Yet, we have never met.

As much we cherish the support of our family and friends, there are some things that only those travelling the same path can totally understand.

The people that have gone through, or are going through, the same ups, downs, guilt, euphoria, anger, elation, frustration, grief.

Commonality through our children’s conditions.

Therein lies the cohort of individuals that I now wholeheartedly define as my friends.

These people, who started out as ‘friends’ in the ‘Facebook’ sense rather than the conventional definition, very quickly evolved into a group of the most valuable friends that I could possibly ask for.

These friends have played an absolutely colossal role in my emotional health.

Facebook had previously been a source of unwelcome reminders of all the things the other children are doing that my son might never do.  

Photos, videos, anecdotes, at times it was insufferable.

On the day of my son’s diagnosis, however, Facebook transformed into a safe-haven and fount of knowledge and empathy.

I made friends overnight.

Not just Facebook friends, real friends.

In 24 hours I went from the saddest, gloomiest depths of despair, to a place of hope, kindness, inspiration and expertise.

I did this through the discovery of a private Facebook group and my new ‘friends’ therein.

That was two years ago.

Since then, I have met many of them, shared some wonderful experiences and made some lifelong memories.

In the meantime, our friendships continue to be sculpted through our online communications, which is a life-line to each of us.

Our friendships grow and flourish while day-to-day we lead totally separate lives.

My second defining moment was through a Facebook support group for parents of children with acute feeding disorders.  

The founder of the group is the sole reason that my son avoided a feeding tube.

The wonderful lady in question is now a dear friend, as are many of the other mums in the same group, yet we have never met.

We connect daily for support, giggles, tears, struggles, and we rely on each other more than any of us could have predicted.

I harbour a special affection for all of my Facebook friends’ children and follow their progress with fondness.

All will message me in the middle of the night if I contact them with a problem.

All are fast to reach out when I post about my latest trauma with my son.

They are first to click ‘like’ when I post a photo of him doing something amazing*.

*not amazing to 99% of the population.

Regardless of whether or not I’ve been fortunate enough to meet my virtual friends, they are all close to my heart.

Maybe it doesn’t matter that we have never met.

Maybe it doesn’t even matter if we would get on with each other in real life.

If we are both getting what we need from the, ‘friendship’, then surely that’s all that matters?!

In fact, the dictionary definition of a friend is ‘a person with whom one has a bond of mutual affection’.

Nothing about going to the movies, trips to the shopping mall, or play-dates at the park.

The amount of time and energy that these friends have devoted to me, replying to messages, speaking on the phone, helping me complete funding forms, sending me links to specialist equipment, sharing their experiences, helping me feel less alone, would probably outweigh the time I have spent with my real-life friends, in the latter years.

I never directed this to be the case, it simply evolved.

Like a magnetic field, I am drawn to engage with, and open up to, these people, for reasons I cannot express on paper.

I salute you, Mr Zuckerberg, and I think my husband would like to buy you a beer for keeping his wife on the right side of sanity (most of the time!).

To my Facebook friends…thank you.

It started just like any other day.

I woke up in a good mood, I won a wrestling competition with Daddy on the bed, and had a yummy bottle of milk.

Mummy gave me some nice breakfast and got me dressed.

I shuffled over to Daddy ready for him to take me to nursery but he kissed me goodbye and went on his way to work.

Strange.

Oh well, perhaps today is a hospital day, I thought.

I was right.

Soon after, Mummy got our stuff together and we set off in the car.

I was playing happily with my musical book but I noticed that Mum wasn’t chatting away with me like she normally does.

It had been a much longer journey than usual to the hospital…

I babbled to Mum that I was getting a bit stiff and bored sat in the car seat… but we seemed to have finally arrived.

I looked up and realised this wasn’t our usual hospital.

Mum didn’t seem to know where she was going as she pushed me along the corridors.

She was definitely behaving a bit strangely today, so I tried not to whinge too much.

We went into a room and there was a man that I don’t remember meeting before.

He talked to Mum for a while and I bottom-shuffled around the room exploring.

Mum kept telling me off but I couldn’t help it, there was too much exciting new stuff to put in my mouth and throw across the room!

There were bandages, and some feet made of white plaster, and a real skeleton dangling in the corner!

The man went off and came back with a big white thing with straps.

Goodie, I thought, another toy to play with.

Mum scooped me up onto her lap, where she was sitting on the hospital bed, and opened a story book.

The man brought the new toy towards me and I reached for it excitedly.

But he grabbed my wrists, pushed my arms up and pressed the cold plastic around my body.

Ouch! It hurt but Mum didn’t stop him.

She held me really tight so I couldn’t get away from the horrible man.

It was really hurting now.

I cried out to make him stop but no one listened.

He pinned me down on his lap and pulled the white thing all the way round my body, and he was tugging on the straps at the back.

Why was Mum letting him do this to me?

I cried louder.

Mum gave up trying to read me the story.

The man flipped me over so I was on my back and I was struggling to take deep breaths.

This was so horrible, why wasn’t Mum doing anything to stop this?

I had tears streaming down my cheeks.

I looked up and saw that Mum did too.

The man left the room, mumbling something about ‘getting used to it’.

Mum pulled me in close to her, and I could feel her moving her hands around, trying to find a bit of my real skin to cuddle.

The plastic was covering most of my front and back.

Her tears dripped onto my bare shoulders.

Then she sat me on the cold, hard floor, and I immediately wobbled backwards.

This thing wrapped around my body was pulling me upright and I couldn’t keep my balance.

Mum propped me up again and I tried to stay sat up.

My usual method of movement, shuffling on my bottom, was really uncomfortable.

It was difficult to even reach the floor with my hands as the stiff plastic was digging in to my armpits.

I toppled forward, and planted my face on the floor.

Mum scooped me up and we were both still crying.

The man came back into the room and prodded me, rolled and manoeuvred me around again, and finally, took this thing off me.

Phew, I thought.

That was horrible, but it’s over now.

Mum and the man talked for a while longer and then he put the white object in a bag and gave it to Mum.

Back at the car, Mum put the bag next to me on the backseat.

It remained visible out of the corner of my eye and I found it hard to take a nap, knowing it was there next to me.

I must have slept because the next thing I knew we were home and it was lunchtime.

After lunch, Mum and I played with my toys for a long time.

Mum was being extra nice to me, lots of cuddles and laughs and tickles and all my favourite games.

She even let me watch my favourite videos on the iPad!

I was really pleased to see Daddy when he walked in the front door that evening, and I could tell that Mummy was pleased too.

They had an extra-long cuddle, but then Mummy started crying again.

Dad and I played with my planes and dinosaurs, and then Mum came into the room with the big white object.

I shrieked to warn Dad that it wasn’t a toy, it was for hurting people.

Mum took off my t-shirt and brought the thing towards me, like earlier.

I heard the evil crunch of the velcro as she wrapped it around me.

I struggled and wriggled.

I realised then that I needed to be brave, to show Daddy that I could be a big boy.

And I really didn’t want Mummy to cry any more today.

I sat still while Mum and Dad fussed over the straps.

When they were done, I looked down and inspected my new jacket.

It wasn’t so bad, in fact, I already felt straighter and more supported.

I showed Daddy how I could still bottom shuffle with it on, but I could see he was disappointed about how slow I was.

He put me on my ride-on car and I propelled myself forward; phew, at least I was still able to ride my vehicles!

I realised that the best thing to do was to be brave and not cry or make a fuss.

After all, it wasn’t so bad, it was actually quite comfy, and I bet none of the other kids had a shiny white shell like mine!

Mum took it off me, and we had tea, bath, story, snuggles, and bed.

I might have been imagining it, but I think Mummy and Daddy were being extra nice to me.

I got an extra-long go on the iPad and custard for my pudding!

Well, I must remember to be big and brave every day, if this is what happens!

We were young, free and single. Matt and I met ever so romantically over a spreadsheet.

He was an accountant in an NHS Trust and I was their auditor. It was love at first pivot table.

We were hard working and full of energy.

Matt had just qualified after years of exams, and his promising career was taking off.

We had similar interests, namely cycling, rock concerts and general decadence.

Life was a systematically organised rollercoaster of fun blended seamlessly with sensibility.

Matt changed job and moved up a notch in the Grand Career Plan.

We set up a small accountancy business together working from home to earn some extra money.

We had no idea of this back then, but we had an immeasurable amount of time at our disposal.

We had ample funds to line our pockets, which allowed us to fill our lives with richness.

We decided to start a family.

We knew it would be life-changing in so many ways, but we had absolutely no doubt that we were ready.

We were correct.

Having Jenson was the best thing that we ever did.

People had warned us of the things we would be relinquishing, but we never looked back at our former days and wished for them back.

That was then, this was now, and this was great.

I didn’t miss work.

At all.

I loved being a mum, and welcomed the new purpose I had in my own, “Grand Life Plan.”

However, life during Jenson’s first two years was tough.

He had a total of 200 appointments:  a staggering statistic that I still can’t quite believe.

When I returned to work when he was one year old, I found it especially hard-going, but we had no choice financially.

I still find it hard now.

In fact, merely balancing my job with my hectic schedule proves difficult enough.

I sometimes wonder how I will get through a week and the list of essential tasks and appointments.

My primary job is carer, PA, therapist (and the list goes on), nonetheless I manage to squeeze in my 3 days of proper work.

It is an everlasting juggling act.

There are times when I have to work late into the night to make up the hours, where I simply haven’t been able to deliver my 3-day working week during working hours.

Our accountancy business is running at a snail’s pace because everything else takes priority.

We daren’t abandon it as we know that it may one day prove to be a necessary source of income.

I have never had grand aspirations to achieve highly in my career; I am content with a good, steady job.

Lucky really, because the option of rekindling my career and going up into management is simply not viable.

Where other mums are able to shift the day-to-day responsibilities over to caregivers, albeit for a handsome fee and a huge burden of guilt, this is not an option for us.

I have to not only attend many appointments, but co-ordinate Jenson’s care plan and deliver therapies that I could not entrust on anyone else.

Matt continues to mark his career territory in his new job, and struggles to attend Jenson’s important appointments while working the hours required to establish himself on the professional ladder.

He is a terribly sensitive soul and he is perpetually torn between being there for his vulnerable son and emotional wife, and investing his time at work in order to mark out a robust future.

I am so proud of my husband, and so grateful that he takes the pressure off me to be a comparable contributor to the family finances.

He is my first line of defence, my emotional backbone and the family provider.

But the job sometimes consumes him during this career-defining time of his life.

It really upsets me to see the guilt and sadness on his face when he returns home having missed story-time and snuggles for the forth night in a row.

As for me, despite doing my best to give Jenson everything he needs to give him the best start in life, I still go to bed every night with a pang of guilt that I could have done more: more physiotherapy, more signing practice, tried him on more foods, given him more cuddles.

Life with a non-ambulant, non-verbal toddler can sometimes be tedious, where I am so limited to the activities I can entertain him with.

By 6 o’clock I desperately need adult company, and have to override my frustrations when Matt repeatedly returns home from work later than he had intended.

It was his tenacity and perfectionism that had attracted me to him in the first place and now, a few years on, I find myself admiring and despising these qualities in equal measures.

Last week, Matt was offered a new job.

One that pre-Jenson, we would have celebrated and welcomed with absolutely no reservations.

It is the success story that he mapped out all those years ago when he buried his head in those text books for years on end.

We have deliberated over whether he should take the job, mainly because of the fine balancing act we feel that we are already treading.

It will involve more travelling, later shifts at the office, and more responsibility.

Less flexibility to attend appointments, and less capacity to mitigate my emotional requirements.

Matt adores his evening cuddles and snuggles with Jenson, and his morning drop-offs at the nursery.

He tries his best to get to the gym and play football each week.  

He would most likely be surrendering all these things.

Not to mention further depleting the time we spend together in the evenings, catching up and taking stock of our busy lives, and giving each other the love and attention that we need.

We already struggle to maintain the equilibrium now, so we are both worried what the future may hold.

I am an emotional liability most of the time these days and I know that Matt is very conscious of doing anything that will rock my instability any further.

We decided that Matt should turn down the job.

It was a hard decision, but I think it is the correct one.

The time will come when Jenson’s needs become less, and I think we will know then that the time is right.

This decision making exercise has shown me just how having a special needs child impacts so extensively on every member of the family.

It makes me realise that Matt needs my support as much as I need his; he carries a larger emotional burden than I credit him with.

It would be easy for me to use all my energy on Jenson but the truth is that despite his outer strength and resilience, Matt warrants a good share of it too.

So this post is for all the daddies out there that carry such a weighty burden of responsibility and who carry on regardless, for the sake of their beloved families.

Too often we read articles about the lows of special needs parenting. The sadness, envy, guilt, anger, despair, frustration, anxiety: it reads like a list of 7 deadly sins.

It’s entirely understandable to have these feelings: we all do, and I agree that it makes us all feel comforted to know we are not alone in having these feelings.

We even share and repost these articles on social media in a vain attempt that the rest of the world might have an insight into our lives!

However, I believe it is really important to recognise and celebrate the incredible highs that we experience too.

I also think it is crucial that those people close to us are aware that we have these feelings, and that actually, life IS good.

Before entering the world of special needs I would have looked upon a family such as mine with pity and sympathy, and I would have felt relieved that it wasn’t me that had been dealt that hand.

By sharing our positive experiences and emotions, the people around us are all the better for knowing that we don’t need their sympathy.

That in fact, we experience feelings that they do not, cannot and will not experience.

And actually, it is them that, at times, should feel envious of us.

And this is why:

1. Joy

When your child achieves something that six months ago you could not have dreamed they could achieve, that feeling of exhilaration is amazing.

It is often the most minor of things, but to you, it represents so very much.

There is a definite incremental shift in our capacity for experiencing excitement from everyday life.

I suppose it’s simply an enhanced appreciation of the joys of life resulting from the awareness that nothing can be taken for granted.

The absolute jubilation I experienced the very first time Jenson demonstrated the coordination to bash a xylophone with a beater would challenge the ecstasy experienced by a lottery winner.

2. Pride

I am so proud of Jenson and I frequently show him off.

True, the feats that I am demonstrating to others would be easily overshadowed by Jenson’s peers.

However, as parents of special needs children, we have carte blanche to show our children off when they achieve the most innocuous of things.

This is an extra special bonus that came with having our children.

At two and a half, while Jenson’s friends are learning the third verse of, ‘Mary had a little lamb’, I am proudly displaying his new skill of clapping his hands.

3. Humour 

It’s 6:30 am and I have been up for one hour.

I’m wearing yesterday’s underwear and bags under my eyes.

The to-do list is longer than my arm and we have run out of Jenson’s prescription.

Matt is running around stressed because he’s late for work.

I would pay quite a sizeable amount of money right now to crawl back under my duvet.

Lo and behold, just when I start wondering how I’m going to get through the day, Jensen lets out a chuckle that would bring a smile to the most miserable of folk.

I’m not sure what he’s laughing at, and I don’t think he really knows either.

Perhaps the animal noises coming from his toy.

Matt and I laugh in response.

Impossible not to, it’s contagious.

He laughs at us laughing, seeing the response he has caused, and feeling proud of himself, he ramps it up a notch.

We laugh louder.

He chuckles harder.

The avalanche effect is born.

We are fixed.

Today is not going to be so bad after all.

4. Appreciation

A new-found appreciation of the little things in life, such as relaxing in a café with a cup of tea, having an uninterrupted night’s sleep, or going on a family picnic that is idyllic rather than bumbling chaos.

Also, of course, the appreciation for the wonderful people in our life without whom we could not function.

5. Awe

We are in awe of our children.

The things that they have to endure on a daily basis astonish us.

Just when we are at tipping point, they pull another one out of the bag.

Their ability to absorb so much that life throws at them, whether it be physical pain, or dealing with everyday life that conflicts with their sometimes irrational requirements.

We are in wonder of their resilience.

I was dreading taking Jenson for his echo-cardiogram on his heart.

He is severely sensitive to being touched and prodded, especially by strangers.

I had been fretting over this for days, thinking over the possible ways to appease him and keep him still throughout the 20-minute ordeal and avoid sedation.

After some minor wriggling, and getting used to the cold jelly and strange probe, Jenson lay back in my arms and listened to a story.

There he stayed for the whole 20 minutes as if he subconsciously knew it was for his own good and was overriding his instincts to fight and resist.

I could physically feel his fear.

I walked away from the hospital that day in awe and wonder.

6. Humility

Through our journeys we are exposed to a realm of children with a range of different issues.

We frequently experience feelings of humility towards families that have a terribly tough time and are astounded by the resilience they show.

Equally, we are often in a position where we rely on others more than we would like; whether this is friends, family or health professionals.

We are so very grateful for the extra mile that they will go, to make our day better.

A glass of wine with a friend when it’s been a tough day, even when she was due at work an hour ago, an extra half an hour therapy when the physio’s shift is over, or a box of goodies in the post from a loved-one, ‘just because’.

Jenson took a while to settle into nursery.

He was out of his depth to some extent with all the other ‘ordinary’ toddlers running around rambunctiously.

Jenson’s key worker was aware of my protectiveness and concerns, and she would call me at the same time every day to update and reassure me.

Despite the other children in her care, she would hand him over at the end of the day with a verbal account of each and every thing he had achieved, every ounce he had drank, who he had played with, what he liked and didn’t like.

I felt so humble and grateful that she reached out and recognised my trepidation; she made those two days a week so much more bearable.

7. Togetherness

Our children have a role in our families that could not be replaced.

They provide us with a feeling of solidarity.

We go out of the house as a family, even when it would be so much easier to stay indoors, hiding from the world.

On days when things are tough, we would rather be together facing the elements, than alone, functioning separately.

On weekends, my husband loves to take Jenson to the supermarket.

This is a chore that I avoid due to my irrational fear of attracting negative attention in a situation where I cannot escape.

Matt, on the other hand, would rather be together, with his boy, and face those challenges.

His positive attitude translates into a positive experience, and they inevitably have a blast!

I love seeing their naughty looks on their faces when they arrive home as if they’ve been up to mischief.

At first, especially during that haze of new-born fever, you feel like your little treasure really is the best-looking baby that ever did grace this planet.

No other baby could compare!

It is a credit to you to receive these compliments, after all, you created that little cutie, out of your own DNA, and why indeed should you not feel immensely proud?!

As part of my arduous yet enriching journey through Jenson’s first few months of life, I have so far been honoured to meet many babies and children who probably, in reality, do not get showered with such niceties.

Why not? Because they don’t look quite right.

They don’t meet that stereotypical norm that we are programmed to accept and expect in society.

They don’t resemble the cute squishy picture-perfect little pickles that we see on Pampers packs or on baby formula adverts.

What makes these children less deserving of compliments?

Jenson is a very special and unique child who has a multitude of physical and developmental problems, but as fortune would have it, he is (to the untrained eye) a ‘normal’ looking baby.

And in being a ‘normal’, looking baby, he is in receipt of many a sweet compliment.

It is only since being exposed to the less fortunate children around us, that I have been less allured by these comments than I used to be.

You see, I would give anything to swap Jenson’s deep blue eyes and button nose for a brain that is developing properly.

To exchange his mass of shiny floppy hair for a straight spine.

I would sacrifice his scrumptiousness for the sake of him being able to look up at me and say ‘mummy’.

If a baby’s deservedness of praise was measured by their ability to learn, copy, play, speak, walk, then Jenson sadly would have had very few.

And it is these abilities that I would do anything for.

People who really know Jenson share their excitement with us for the remarkable progress he has made to meet milestones and climb metaphorical mountains that we never thought he would reach.

When he achieves the previously unachievable, like negotiating his ride-on car around the garden, eating yoghurt, or bashing a toy with a hammer:

It is the responses to these achievements that we really love, from people that really understand.

So compliment away friends and strangers, but maybe have a thought about the depth of your platitudes and think about what things in a small child’s life really are worth gushing over.