If We Treated Royalty like We Treat Disabled People

A place fairly local to me recently had a visit for an official opening by a Princess.

Traffic was rerouted, roads were closed, the police were out, places were decorated and painted, plaques were erected and photographs taken for the press.

It was a pretty big event attracting a lot of attention.

It got me thinking: what if we treated royalty the same way we treat disabled people like my son?

A new supermarket is opening and royalty are coming to visit. For security and health reasons they will be coming with an entourage of others to ensure their welfare is OK.

As a result, they kindly request that all aisles are wide enough for access, free from unnecessary clutter that might block them and that any music or noise is not too loud so as to not cause any distraction to the royal visitor.

I can tell you for a fact that that supermarket would have every aisle cleaned, cleared and that music would be adjusted to the exact level required in a heartbeat because… well royalty are important aren’t they?

Royalty may visit for a brief moment but I want to visit with my child regularly. Will you do the same for my child?

Still in the same shop and the member of royalty is struggling to walk. They are tired, their muscles ache and their body just isn’t doing what they would like it to.

They really need a trolley that can accommodate their needs and even though the standard ones are everywhere these just don’t have big enough seats.

For their protection and safety, they need strapped in safely. I can tell you if royalty needed such a trolley it would be ready and waiting for them, clean, warm, and dry and exactly where they needed it to be.

The cost would never come into play and in fact, the supermarket would proudly show off how accommodating and inclusive they were to the world.

But what if my child just wants the same thing?

After a short time, the member of royalty needs to be excused to visit the bathroom. Staff have already been allocated to ensure cleanliness is of the highest standard, access is clear and welcoming and everything is in place.

But there’s a problem… what with the amount of security staff, the fact the royal princess is fatigued and in pain a standard toilet on this occasion isn’t suitable.

They require a bigger room with a hoist and a bench for their privacy and health.

The supermarket were made aware of this beforehand and ‘just in case’ they had everything built and checked to ensure her majesty could have her needs met in the dignity all royalty should have.

Even though her highness may never visit again, or only occasionally, no expense was spared because royalty is important and pleasing them matters.

What a pity my child isn’t royalty.

The princess is hungry and the supermarket has a restaurant which smells delicious. It’s upstairs but of course this has all been thought about with clear signage to an accessible lift wide enough for not only the princess but everyone who cares for her too.

They don’t expect just one member of staff to squeeze in with her alone because we all know princesses need numerous staff to ensure all is well.

On arrival at the restaurant, staff have already provided a clear space for the princess where her own chair can fit not on an end where it makes her look different but she can slide in beside everyone else and take part to the exact same level everyone else can.

Staff go out of their way to bring her food to her without question even though this may be a once in a lifetime visit.

Would they do the same for my child if it was us?

The local community are eager to see the princess.

The police have been out in force and made sure no car is parked on the pavement and the council have even sent workmen to smooth the path and clear it of debris and little bumps as the comfort of the princess is of paramount importance.

The fact my child gets pushed in his wheelchair along the same stretch daily and we struggle to get past cars mounted on the pavement, holes that cause wheelchair wheels to get stuck and curbs that are high and difficult to mount doesn’t seem to matter.

For royalty no expense is too much, delays never happen and people will do anything to make their life better.

The supermarket, or wherever else the princess visited were publicly praised for their actions. Everyone applauded their thoughtfulness and forward thinking.

They were commended by their head office, staff given awards and everyone was delighted that the princess had all her needs met and more.

At a debrief it was noted that no money was too much to spare, no unnecessary delays happened and the attitude of everyone was welcoming, inclusive and understanding.

We would do it if it were royalty coming. So why can’t we do it for my child?

Being a Parent to a Child Like Ethan

There are so many great things about being a parent to a child like Ethan.

People tend to not know that.

They tend to think or imagine our lives as sad ones or a life full of struggles and battles; while on one hand that is absolutely spot on, there are also some pretty cool things about being Ethan’s mammy.

I’ve compiled a list about the ‘perks’ of being a parent to a child with special or extra needs – and yes, I purposely choose the word ‘perks’ because there are perks, well, I see them as perks!

One: The Wheelchair

You want to see some kindness in the world?

Watch how helpful people are when they see you struggle with a wheelchair – my gosh people can’t do enough for Ethan or I as we try to navigate a world designed for working legs!

Two: The Peeps

Ah man, the peeps, my peeps!

We met them absolutely everywhere – without Ethan I don’t think I would have ever met some of the kindest, most genuine, most caring people ever to grace this earth- people who care for Ethan because they choose to – they are the best kind of people.

Three: The ‘Inside’ Track

Ah yes, my fellow SN parents are smiling at this one. We all know how the ‘inside track’ works – we know who is who and how to get to the who of the who-ness, oh yes there is a whole other language when talking about the ‘inside track’.

We can also tell you tales that would leave your mouth open about what goes on within the ‘inside track’ – yes, indeed, we each have a story or twelve to share regarding the ‘inside track’ on services, hospital, appointments and even consultants – but never worry, we don’t gossip… we simply ‘share’.

Four: Assumptions

Sometimes it can be annoying when people assuming anything about you, other times it can work to your benefit. And yes this is a perk!

When queuing with my son, simply because he is loud or in a wheelchair, people let us skip! Ah, it’s great, I like this perk a lot.

Five: Free

Look it, I am not going to lie here and it may seem crass but it is what it is. People, I mean absolute strangers, give Ethan things for nothing. I don’t know why.

If Ethan likes something in a shop, I do tend to buy it but Ethan can often like more than one thing or something way out of my price range and that’s when it has happened – some random kind person insists on buying what he wants or the shop owner tells him to take it!

Now, it hasn’t happened in a while but back when Ethan was partial to a whopper of a meltdown, he was getting freebies left, right and center.

Six: Learning

I am always learning. Every single day I learn something new.

I don’t even know I know half the stuff I know until a friend rings or my sister rings wondering what to do with their neurotypical child who is unwell – I normally know what to do! Isn’t that amazing?!

There are things I know now that I would never have had any interest in learning when at school/college – but now, now I can talk you through a peg clean, a site clean, what to use on an infected site and I can show you some physiotherapy to help with carpal tunnel pain or joint pain or mobility issues, not to mention how to spot a chest infection before it even becomes one!

Oh, I also have a vast knowledge about drugs – the legal kind (FYI)

Seven: Experiences

We as a family have had some amazing experiences because of Ethan. We have been witness to some truly touching human kindness.

We have done things we would never have done had it not been for Ethan – for example, we got married on Don’t Tell The Bride – yes the TV show, because Ethan has a terminal condition we wanted to be married and to have Ethan be a part of our day.

I personally, would never have started my dream of writing had it not been for Ethan.

Ethan drives me to be better, to do better, and to always try, without him, I truly believe I would still be dreaming about writing and working in a job which just pays the bills. He make me live.

Eight: Gross

There’s nothing that can gross me out. NOTHING.

I have cleaned it all, moved it all, picked it all up and off floors and walls – I am actually able to clean the dirtiest of nappies while not smelling it at all!

No, I don’t use a face mask, I simply breathe through my mouth and there it is – the big secret on how to clean up a mess without getting sick yourself!

Nine: Laugh

I laugh. I laugh an awful lot. Sometimes I laugh at things that parents like me would kill you for saying aloud.

See, there’s a rule within my community, we can joke and laugh about the sh** which happens in our lives, but you can’t – it’s a little like that rule where you can call your own mammy names but no one else can.

I always had a good sense of humour but since becoming Ethan’s mammy I really laugh at a lot more stuff that would have the average parent crumbling with embarrassment.

Ten: Perspective

I find I write a lot about perspective but it is true – my perspective is what keeps me going, without Ethan, I don’t think I would be capable of having such a healthy perspective to most things in life.

It is a shame for all of us that we cannot gain such a perspective without having a child like my son but I suppose that’s why I find myself writing about perspective quite often.

It is like a superpower given to parents like me and one we must share with parents not like us – There is far more to life than grades, milestones, awards, achievements…all any of us have is the here and now – be present in the present, as best you can.

So there you have it, just the tip of the list of the perks of being Ethan’s mom

Always Choose the Tutu!

Last month was Heidi’s birthday.

In previous years, this has been quite an emotional day for me – bringing back memories of when she was born (she suffered an HIE event, a lack of oxygen, needed resuscitation and was really quite poorly).

This year seemed different though, and I looked forward to it, her day, and a chance to celebrate how far she’s come.

We planned a little party with close friends and family, and all was going well, until the week before when Heidi fell ill.

Now it’s not uncommon for Heidi to get chest infections – she’s non-mobile and has a trachi, and is just one of those things that we are almost always waiting for.

This time was different though – her chest was fine, her sats (oxygen levels) were good, and she didn’t sound rattly.

This time it was her tummy, she was bloated and uncomfortable, and we didn’t know what the best thing to do was.

Thankfully we have open access to our local Children’s Unit, and they know us well.

After a few trips in and out, we were given antibiotics to treat Heidi for C. Difficile, an infection which, we have since learned, most commonly affects people who have recently been treated with antibiotics, which Heidi had.

She was given them for pseudomonas, which is common in those who have a trachi, which is notoriously hard to shift, which wasn’t causing her any problems, which is annoying as the antibiotics not only upset her stomach but also triggered seizures, which had been otherwise under control for almost three years.

Aaargh, the challenges hey!

The good thing was that Heidi was quickly settled and stable, but the bad news was that we had to cancel the party, due to the chance of not only passing anything on to others but of her immune system being lower than normal and so susceptible to picking something else up.

At the risk of sounding like a spoiled brat, I was gutted. Why, of all the weeks, did Heidi have to be poorly now?

Of course, I know it’s not her fault, and just wish I could make it better when she’s under the weather, but it was one of the few weekends where we had made plans; friends of ours were moving to Australia and having a leaving do, my sister had booked to come over from Holland, another friend’s little girl was having her birthday party, so it really was meant to be a weekend of social-butterflying for Heidi.

We even had outfits planned for each event, that’s how much we had been looking forward to it all.

Did you used to have a “best” outfit when you were younger? We did, saved especially for only the most important of occasions.

I think my Grandma even had a “best” tea and coffee set, and “best” cutlery!

The absolute best outfit this year was courtesy of Auntie Rachel – a tutu no less.

Anyone who knows me knows that I’m not the girliest of girls, and Heidi often rocks a pair of leggings (much more practical when wearing AFOs, at least that’s my excuse) rather than a dress, but we were going to go all out for the birthday girl this time.

When the party didn’t happen, I learned an important lesson – don’t save things, don’t wait for the weekend, don’t miss out on any opportunity that comes your way…

Basically, always choose the tutu – wear it any day of the week, not just when you have a party planned! No-one ever knows what’s around the corner, but I guess with our kids, we know that things can change quickly, and plans are often cancelled.

We rely on friends and family understanding that, knowing that we always do our best, but sometimes fate just throws a curve-ball.

Heidi soon recovered, thank goodness, and the party can be re-arranged. I quickly got over my sulk too, feeling rather childish at the way I reacted…in my defense, your honour, I was very tired!

First Responders Go Above and Beyond the Call of Duty

Last August, during the first week of school, our son Chance came home and seemed a little “off.” He was pale and clammy.

He proceeded to lay down on the floor with his tablet and wanted nothing to do with the after-school snack I offered him.

This in itself was alarming since the first place he usually heads after school is the refrigerator.

Chance has chronic lung disease, so any unusual behavior like this puts us in high alert mode.

A few hours later I put him to rest in our bed, hooked him up to his pulse ox machine, and didn’t like the numbers I saw at all.

His breathing was getting shallow. I started throwing things in a travel bag and called 911.

By this time he had fallen asleep, only to be awoken by five first responders standing over him ten minutes later.

He was petrified. They all tried their best to calm him down, but nothing was working.

My husband had to carry him out to the ambulance, kicking and crying the whole way. It took a good 20 minutes to calm him down enough to where they could put an oxygen mask on him en route to the hospital.

Chance ended up being admitted for pneumonia and spent a few days under observation until the worst of the virus had passed.

About a week after he was discharged, my phone rang.

It was the Redding Fire Captain; one of the men who just days earlier had helped load my writhing, flailing son into the ambulance.

He asked how Chance was doing and we chatted for a few minutes.

He then asked if it would be ok if he and some other guys from the department paid Chance a visit with the firetruck and ambulance when he was feeling up to it.

I was floored. He went on to explain that this was something they routinely do many for chronically ill children in the area.

They bring the ambulance and fire truck around when they are well, so they can sit in it, explore it, honk the horn, etc.

He told me that this (usually) helps diminish the negative connotation and fear that a lot of these kids associate with the first responders and their vehicles.

That weekend, the fire truck and ambulance pulled up to our driveway once again.

Our kids got to explore the vehicles to their heart’s content, while the crew patiently answered all kinds of questions, and even let them water the lawn with the fire hose!

Chance was enthralled, and most importantly, was left with positive memories.

Should we ever need to call an ambulance again, I am pretty confident he won’t freak out quite as badly as he did in August.

I am still in awe and extremely grateful that they would go out of their way to make sure kids like my son won’t be so scared of emergency vehicles.

I also need to mention that this visit was on the heels of one of the many wildfires that plagued Northen California last summer.

All the fire crews were stretched to their limits over and over, and they still made time to make a difference to a little boy who now excitedly points out every ambulance and fire truck he sees, and wonders aloud if his new friends are in there.

Why Kids Ask the Best Questions

We were out with Heidi the other week, and met a family who had a little girl, a couple of years older. As is often the case, she came straight over and had a good old look.

“What’s that?” she said, pointing to Heidi’s tracheostomy.

I could see her mum look a little unsure, but I encouraged more questions, explaining each one in the most straight-forward way I could; her trachi is a little plastic tube that helps her breathe, and no it doesn’t hurt; her feeding tube is like a special straw that goes straight in to her tummy to give her milk ‘cos she can’t eat like we can, isn’t it amazing?; yes she can see you, even though can’t talk back she loves it when people chat to her.

And that was that, very simple, all she needed to know, and she carried on with her day!

Kids seem to have this great ability of accepting others for who they are. Yes Heidi is different, but not it a bad way – in their eyes that just means that they tailor their behaviour to suit her needs, often making a fuss of her, bringing her toys, and tickling her to raise a smile.

They don’t judge her for what she can’t do, they don’t see her diagnosis, and more often than not they see her equipment as being “cool”… especially the hoists, I mean, who wouldn’t want a giant swing in their living room?!

I think as we grow older, we sometimes lose the innocence that children have, and worry about asking questions, so we stay silent.

I can’t speak on behalf of other SN parents, but I know I would much rather get a smile and some questions, rather than feel that someone is just looking at us.

The best encounters have been when strangers have simply asked what Heidi’s name is – no need for anything more than that, it starts the conversation, breaks down the barriers, and I’m more than happy to chat away.

People do sometimes get it wrong though, and I’m not surprised – it’s a minefield of political correctness these days. A couple of hints though for anyone who may want them…

Try not to start a conversation with “what’s wrong with…?”.

The first chap who said this to me threw me off-guard completely, possibly as he said “what’s wrong with him” as Heidi was sitting there in a pink top and clip in her hair.

It upset me (not the boy bit, I found that quite amusing). There’s nothing “wrong” with our children – yes, they have extra needs, yes they have challenges, but they aren’t faulty.

They are amazing.

If you’re unsure what a piece of equipment is, just ask, it’s better than guessing.

In a rather busy hospital waiting room, Heidi needed suction – now there’s no being discreet when it comes to switching the suction machine on, and whilst it used to make me feel self-conscious in the early days, I now couldn’t give two hoots.

Heidi needs it, so we use it.

Anyway, I could sense that we were being watched, and when I had finished suctioning, a nearby gentleman piped up with “is that one of them defibrillator things?” in a pretty loud voice.

Erm, nope! I tried to explain what it was, but couldn’t really get a word in over his comments of “poor thing, poor thing”…!

Which leads me to another hint – don’t feel sorry for us.

Life can be challenging, sometimes we are tired beyond belief, not sure how we’ll make it through the day, but we (again I don’t want to speak on behalf of everyone else) don’t want pity.

A little empathy yes, but please try not to do the head tilt (you know what I mean!) and feel sorry for us.

Instead, offer to make us a brew and tell us we’re doing great!

So, let’s try and learn from our children, all of them, whether with or without additional needs. They keep life simple, see the good in things, and accept everyone for just being themselves.

Oh, and my favourite question so far from a little person – “can Heidi have beer through her tube?”. No sweetheart, babies (she was 1 at the time) don’t drink beer. But maybe when she’s older…

Awesome, Amazing, Actually Autistic… That’s My Boy!

For parents of children with special/additional needs, there is often so much negativity, so much that is hard, so much that makes us want to curl up in a ball and cry.

Two years ago, James had his first recorded epileptic event, adding a new chapter to his journey that already included chapters called ‘Autism’ and ‘Learning Difficulties’.

His struggles with epilepsy and other significant changes going on then caused him great anxiety, to the point where in the summer of 2017 he just stopped going out of the house; school, clubs, shops, church, his favourite café, everything just stopped.

For over a year he couldn’t cope with going anywhere, couldn’t even manage anything more than a few, tentative, steps out of the back door of our family home to collect things we had left there to try to coax him out, blinking, into the daylight.

For over a year he was isolated from the outside world other than visitors that came to the house, and even then his engagement was limited to a handful of people who he really trusted to get close enough.

In August last year, things started to change; James unexpectedly agreed to come out for a drive to the local tip, a curious choice for a first trip out after a year, and hard to create a celebration there, but we did our best!

This innocuous start led to other excursions, to the shop, to the café, and by the autumn of last year we even started to say the word “school” again!

It’s now eight months after that initial short trip to get rid of some garden waste, a trip that seemed to declutter something for James too.

Over the Easter holidays we’ve been able to enjoy some great times visiting James’ favourite places; here are a few of them:

The Tip: Yes, it’s still there as a place to visit, James enjoying seeing stuff being thrown over the wall and watching all the huge machines that ‘live’ there.

The Farm Shop: A must for a drive out, James is so well known there that everyone knows him by name, and they order in his favourite iced gingerbread specially!

The Café:  A little grassy airfield in north Dorset has a lovely café and we stop there for millionaire’s shortbread and lemonade; a perfect pit stop as James watches the little planes taking off and landing.

The Brewery Shop: Yes, you did read that properly, we take our 16-year-old to the brewery shop, but for him to buy cans of his favourite tropical (and definitely non-alcoholic) drink.

And James has been getting back to school too…

Slowly, starting with a short visit once a week and building it up, today he was there for lunch and most of the afternoon, overcoming his anxiety and spending quality time with his school friends and the staff there.

We celebrated by, you guessed it, going to the tip!

We also went to the farm shop for James to do his shopping and say hello to the lovely staff there.

James was out of the house all afternoon and actually found it hard to come back inside the house when we got home, he wanted to do more!

It’s a million miles from where we were a year ago and we couldn’t be prouder of him…  our awesome, amazing, actually autistic boy!

Maybe you see your child somewhere in James’ story…  Maybe they are stuck inside, anxious about going out anywhere, retreating to the safety of home.

Maybe you worry about whether this will ever change, whether there is hope for the future…

James’ story says that there is always hope… always… so take heart, keep persevering, keep on keeping on and looking forward to that day when a simple trip to the tip becomes the best day of your year!

Then make sure the next trip involves a café… and cake!

Learning to Accept Kindness

It was always a plan to go back to work once our baby was in school.

It was always a plan to find my place in the industry and do something I love whilst earning.

With a lot of you in a similar boat, you will know the strong feeling of disappointment and unknown belonging when that time comes but you are restricted by your child’s health to go along with the plan and get back into work.

This has come with many restrictions.

Finance is tight, and there are many boundaries when it comes to enjoying life if something costs.

I often get the stern eye from the husband when I have had a cheeky meal out or spent too much in Debenhams… please tell me I’m not the only one?

A huge barrier has been getting Zachariah exactly what he wants and needs. We just cannot afford it with one wage and the DLA benefits.

We have had to rely on the kindness of others to help us through difficult times.

My in-laws have helped us with donations and our friends and the wider community have pulled together to raise important funds for Zachariah.

Around 4 years ago now, when Zachariah was approaching his 1st Birthday, it became apparent that he would need a Wheelchair.

The pram was not supporting him enough and soon would be too small… Yes, he was a big lad! Due to our area, this was not something that would be funded until he reached Pre School age.

With no hesitations, our close friends and church pulled a huge fundraiser together and raised around £4,000.

Zachariah got the much-needed wheelchair plus other amazing pieces of equipment such as the well-loved GoTo seat!

It was extremely emotional watching everyone come together and bring a little something to create a successful event.

At the end of last year, we were blessed with an adapted property from the council. With a name like ‘adapted,’ you would think this would include the garden…

However no luck, the garden is an absolute shambles with every flag being a different level and angle. After spending so much doing up the house, and myself struggling to do the little work I had been offered, it was financially impossible to pay for the garden to be done up.

I thought about fundraising but didn’t want to be judged as we had already been so blessed as a family.

However as people began to hear about the garden, they automatically wanted to help and yet again another fundraiser formed.

Whilst in planning and advertising, a charity popped up and wanted to help.

They visited us last week and pledged to do our whole garden! I was utterly amazed and overwhelmed at the generosity.

We are having Zachariah’s garden completely transformed to suit his needs and monies raised at the fundraiser will buy a portable hoist to allow Zachariah access to all parts of the garden including the swimming pool/hot tub.

I have learned that people want and love to help. And when people offer it is best to accept with gratitude.

It is not naturally easy for me to receive help, I guess there’s the voice in my head telling me that I should be the one to give my son everything he needs, however, I have had to overcome this pride as there are so many beautiful people out there who love to give and help others.

These people are truly amazing and we owe them everything.

I guess it’s similar to compliments. They can be so difficult to digest.

I was approached recently by a lady at church, who wanted to tell me how much she believes I am doing an incredible job with Zachariah and any doubts I have about this should be thrown away.

I truly did not know what to say. I end up feeling quite embarrassed and anxious.

I haven’t worked out why, but I guess sometimes we can struggle with the attention when we focus so much on our children. It isn’t natural for us to hear kind words about ourselves.

In these situations, we should embrace them and thank the person for being so kind.

As kindness should be celebrated and encouraged. It will overshadow those negatives if we take time to focus on it.

Whether it be words or acts of kindness, learn how to accept them as some people really are for us not against us.

Much love,

My Daily Miracle xx

Are You Being Silenced As A Special Needs Parent?

I don’t know about you, but I passionately believe in free speech.

I strongly feel that it is one of our most important rights, and it is one that I would willingly go to the barricades to defend, but when does discussion, debate, and even downright argument spill over into something much more sinister?

And what does this mean for those of us that campaign and stand up for the rights of some of the weakest in our community, including children with special needs who cannot speak up for themselves?

Maybe you have experienced this too, particularly recently, as it seems to be an increasing trend of our times for people who disagree with something or someone to refuse discussion and debate in favour of trying to silence the voice of the person they disagree with; to try to claim a position of authority which refuses to accept or engage with any other views than their own.

Those of you that are regular readers of my blog will know that I often include my autistic son, James, in what I write about.

His and our story continues to help many families who are on a journey a bit like ours, and overwhelmingly the comments we receive from readers are positive and encouraging.

We do, however, also get comments that are quite the opposite; that challenge not only what is written but my right to have an opinion or to write about it at all.

For example, some in the autistic community (but only a small minority, by no means all, most are wonderful), maintain that as a parent of an autistic child I have absolutely no right to share his, and our family’s, story.

People that have never met James, have never met our family, make assumptions about us as parents, decide whether we are actually autistic ourselves or not, and then pass harsh and unbending judgement about our lack of a right to share our story.

Now I have absolutely no problem at all with debate and discussion with people who disagree with me, that’s healthy and helps us all to learn from each other and to grow together, but to condemn someone to silence for having a different viewpoint to your own, based largely on unfounded assumptions and unfair prejudices, seems to take this over the line into what could be received as controlling and dangerously oppressive behaviour.

We’ve seen examples in the fairly recent past both from around the world and more locally where the crushing of free speech and the promotion of a single approved ideology that has to be accepted by all has led to terrible oppression and horrendous consequences for anyone with a different viewpoint, especially free-thinking liberal minded people.

Maybe you have experienced this kind of silencing yourself?

Maybe you have been told what you must believe, or what you must say or not say? Maybe that has been by people in the disability community, or by professionals, or by other parents, or by family or friends? Maybe you have been able to stand your ground, or perhaps you’ve found it to be just too hard and have given in?

If that is you, remember that you do not stand alone, you do not fight alone, your voice matters as much as anyone else’s and it deserves and needs to be heard. There are many of us that are right there with you.

So, I’ll keep on speaking out, keep on standing up for those I feel called to stand up for, and will respond to the hatred with kindness, to the anger with compassion, to the oppressors with forgiveness. I encourage you all to do the same, let’s all stand together in love…

Who Am I?

Stranger: “Where do you work? What’s your job?”

Me: “Work? My job? Well I, I emm… I’m a carer.. for my own child…”A question that I always tend to get a bit nervous over.


Because how do I answer?

I HATE saying that I’m a carer, not because there’s anything wrong with that because there’s definitely not – carers are truly amazing, but I just don’t really feel like a carer I guess. I’m just a mum?

Doing what every other mum would do in my situation!

When I’m asked if I work or what I do for a living I just don’t know what else to say!

I stay at home because I can’t go back to work.

I need to be around for appointments and therapies and although I’ve actually tried looking, I just can’t find anything that would work around my child’s needs. But I feel guilty for not being at work – how crazy is that!?

I think it’s something a lot of mums feel, whether their child has any additional needs or not, we feel like we should be out working.

Because that’s what we have always been taught.

From such a young age we are asked what we want to be when we grow up, and even if you were to say “a mum” then you would probably give the person asking the question a laugh and then be told that yes, that’s a lovely thing to wish but you also need to have a job!

It’s great to have a career and do well at your job but after we do have children we also need to be able to feel like if we don’t return to work straight after maternity leave then that’s not a bad thing!

I wanted to go back to work after having children and it was never my intention to stay at home but I am trying to tell myself more and more not to feel guilty!

To enjoy the days and be happy knowing that it’s not a possibility for me to return to work just yet or any time soon probably! And that’s ok.