These times we are living in are hard, aren’t they?

Living through the last 12-months has sometimes seemed like a never ending ‘Groundhog Day’, and the current lockdown has seemed harder that previously due to fatigue and the weather not being so good.

It seems so dark, and I don’t just mean the still short days and long, long nights.

There is a sense of ‘darkness’ that seems all-pervading at times, affecting everyone’s mental health and well-being.

It’s harder and harder to get up in the morning, to be motivated for another day that seems just like every other day.

And it’s cold.

But there is something that we all too easily forget about darkness.

Darkness isn’t actually a thing, it’s an absence of a thing.

Darkness is an absence of light. Where there is light, darkness isn’t possible.

It doesn’t exist.

What ‘light’ looks like for each of us at the moment will be dependent on our individual situation and that of our family.

It will be personal.

But if we peer hard enough into the darkness, we might see a glimmer of light still burning.

And if we encourage it, if we feed it, if we focus on it, it will grow brighter and drive the darkness away.

It might be that we see light in the smile of our child, or in the first glimpse of a snowdrop or crocus fighting its way out of the ground.

We might see light in the joy of baking a cake that is actually edible, or in the sound of a blackbird singing as we take a much-needed walk.

We might see light in the progress that our child is making in their development, maybe tiny little steps, maybe steps that would be bigger if they were getting the therapies that they would normally get, but steps never-the-less.

In hard times before, times of ‘darkness’, I’ve found that looking for these signs of light and focussing on them really helps.

I read a book called ‘One Thousand Gifts’ by Ann Voskamp.

In it, Ann encourages us to find three things each day that are good, three things to give thanks for, and to write them down.

Sometimes it’s hard to find three things, sometimes the darkness is closing in and it’s hard to find the light, but look hard enough and it is there, look hard enough and we can all find three things to be grateful for.

And if you write the three things down, I used a notebook for this, it only took a few moments at the end of each day, over a year you end up with one thousand gifts!

One thousand positive things to look back on and be glad about.

One thousand glimmers of light that come together into a blazing brightness!

It has helped me to be able to look back at my notebook, to read the brief notes that were the ‘gifts’ for that day. “James’ transitions were quicker today”, “We were able to get outside into the garden and enjoyed seeing that spring was coming”, “No seizures today”…

Maybe doing something like this would help you to see more of the light and less of the darkness.

To give you a list of things to be glad and grateful for.

To help you see that even on the darkest of days, there is something, something, positive to cling to, no matter how insignificant it may seem.

Light drives the darkness away.

In time, spring will replace winter and longer sunnier days will come.

In time, lockdown will end and we will be able to rebuild some kind of new normality again.

But until then, let’s not stare into the darkness, but let’s look for the glimmers of light, and help them to burn brightly in our hearts!

We sold our last house when our triplets were little over a year old.

They say moving house is one of the most stressful things you can do…I doubt they factor in triplets to that saying, especially one with additional needs when you yourself have a serious neurological condition (Multiple Sclerosis).

We moved because our now six year old son was in need of a house that would accommodate a wheelchair, standing frame, hoist and any other equipment he would eventually need.

We have been through four and a half years of negotiating to get plans finalised and agreed then signed off on etc.

We’ve compromised in that we have a two storey house with a double garage that was fit to be adapted.

Those works finally began before Christmas in 2020 and are due to be finished in a few weeks, much to our amazement.

So what does this mean to our family?

Well! For one, we have a permanent ramp to our front door that is the right gradient for our son to go down AND up himself!

See the top photo and the joy on Jacob’s face!

It is amazing to see as we’ve been using a temporary steel ramp for our two step access while we waited for these works.

Jacob also now has a bedroom downstairs that will have a fully working hoist, toilet, changing bench and shower.

He might not be moving downstairs for some time yet to sleep overnight but he will certainly be utilising that space for his physio, changes, bathing etc.

It has a storage room to the side and we really can’t explain how welcome that is when he is a child with high physical needs and a lot of bulky equipment that isn’t the easiest to store.

He has direct access to his room from outside which is going to be invaluable to him (and a terror to us) in his teenage years!

As Jacob has epilepsy, the chances are my husband and I will move downstairs at some point to help keep Jacob safe, but we’ll do whatever works for our family.

As I also have MS it isn’t out of the question I will also be a wheelchair user at some point so we need to be mindful of that.

Thankfully, we were able to buy a house that should accommodate our needs for years to come, if not forever, although my husband is convinced we’ll move to the country one day!

In the meantime, we are totally in love with the new freedom these changes have given our son at a time when he really needs to know doing things himself IS possible with a few changes.

We also have a new car (read my other blog about that if you’re bored!) so things are starting to get easier in terms of physical lifting etc which is hugely needed with a strapping six year old!

He’s also a typical six year old in terms of emotional control (or lack of) so we’ve had the doors widened to accommodate his speedy manoeuvres around the house!

I’m looking forward to many years of enjoyment from the changes that are being done by these excellent builders and tradesmen.

I hope they see the difference it is making to our lives and see the joy on our son’s face as he whizzes down the ramp (albeit MUCH too fast!).

It’s hard not to go down the memory lane of ‘this time last year’… Pre-Covid, pre-lockdowns, pre-home schooling, pre-groundhog days.

As I sit and type this, I am looking at his smiling face.

It beams out at me from a shelf high in my sitting room.

That picture was taken last Summer, it caught him as he was; truly happy, truly innocent, truly handsome, truly Ethan.

My Ethan.

This time last year I was eagerly awaiting the return of my manuscript from a local publisher here in Galway called, Tribes Press.

The only people I had told about my pending manuscript was my husband D, my big brother Liam and of course Ethan.

They were all pretty good at keeping a secret!

As we all know, the pandemic hit in March of 2020.

By then, my darling brother was in his final weeks of life.

I, too consumed with pending grief and still trying to ensure Ethan’s transition to adult services would still go ahead, simply left the manuscript to one side.

My brother passed away on the 22nd of March 2020.

Before he left us, he asked me to ensure I got the manuscript published.

He was an artist, amazingly gifted with what he could turn a lump of clay into and I, according to him, had ‘a gift with words’.

By the Summer, I decided to do my best to bring my words and tales of Ethan to life.

After many corrections my manuscript was ready to be turned into a book.

It was exciting but I was riddled with nerves and self doubt.

The plan was that the book would be on sale in December of 2020.

Plans are funny aren’t they? We all make them, while knowing in a blink of an eye they could change.

September 23rd, six months after my brother Liam passed away, my beautiful first born son, Ethan, left this world suddenly.

My heart was already broken but when Ethan left me, it felt like my broken heart split into a million different pieces all at once.

I found it hard to breathe, let alone think of the book.

Time was a blur for a few months until one day in November something made me contact Tribes Press.

In January 2021 my book ‘Ethan & Me’ was released to an overwhelming response.

People from all over the world contacted me to tell me what the book meant to them and while reading and seeing all the posts about my book, I felt a little bit of my darling boy lived on in those who read it.

‘Ethan & Me’ is one family’s story of courage through adversity as they raise a child with special needs. It’s a story about hope, love and courage. There are many laugh out loud moments in the midst of the daily challenges.

Ethan was supposed to be here with me on this journey of publication but instead he is within the pages, very much alive and very much Ethan.

For those of you interested in purchasing my book you can do so here:

https://tribespress.com/product/ethan-and-me-pre-order/

Thank you so much to Firefly who have been very understanding of my circumstances over this past year, I hope to get back to writing regularly again for the site that helped me so much over the years.

Life during the pandemic for many has stopped, but although there have been delays and changes to the way we have our appointments, our appointments have continued because the simple fact is, they have to.

SEN life does not stop, not even for a global pandemic.

This week we had our latest review Alfie’s paediatrician via telephone.

I went into the call pretty positive, thinking Alfie was doing well, and though he is, and he never ceases to amaze us, it still was not an easy appointment and threw up some things I was not expecting.

We discussed Alfie’s medications and whether they were working, I explained I was concerned that his stomach acid PH is still high despite the medication he is on, and she said she would make a referral to the gastro team.

And that was that.

She then asked if there was anything else that I wanted to discuss, and before I knew it, I was voicing a lot of concerns without realising.

Such as wanting more information on SDR surgery and Alfie having an MRI scan to ascertain the level of damage to his brain, and the possibility Alfie is having vacant seizures.

The school had mentioned it, and I had felt like the world’s worst parent for not noticing.

Alfie has been going ‘blank’. I thought he was simply daydreaming, but the reality is he may be having seizures.

Another thing for our boy to deal with.

Straight away our paediatrician came up with a plan of action to look into things further and get Alfie whatever help he may need, but it was not a conversation I felt prepared for, nor one I intended to have.

Alfie’s future is so uncertain and when things get thrown up like this it gives me the worst anxiety and sense of panic.

It feels as though whenever things seem to be going ‘well’ for us (and I use that term loosely), something crops us and sets us back.

At Christmas, Alfie vomited, despite having had a fundoplication, after things had been going well with his feeding tube and he had lost some weight, we got that back on track and now this.

I have been reassured that if Alfie is having seizures, then they can be managed with medication, but the mere possibility he is having seizures was not something I was prepared for and truly brought us crashing back down to Earth with the unknowns that come with having a medically complex child.

I am the parent of a two year old boy that has disabilities and I’ve lost count of the number of people who have said to me that things must be “so hard.”

That our life must be “so hard”.

Some of these comments come from strangers, sometimes they come from professionals or friends.

Regrettably they even come from my own mouth but not because I feel like our life is hard because of Joseph.

Unfortunately we are part of a system.

A system that nobody would choose to be in because it is a system that is far from ideal. 

It is a system that ensures parents like me regularly have to almost prove to complete strangers (sometimes people with very little knowledge of children with needs like ours) that our lives are difficult just to be able to access necessary care/equipment/resources to meet our children’s basic needs.

We have to answer invasive, probing questions and justify everything.

Whilst I’d like to acknowledge that many people who make these comments do not have ill intentions and I can appreciate that sometimes people are trying to express understanding or empathy at our situation within such a system.

I’d also  like to address the issue when these type of phrases are used in relation to the child’s disabilities or medical complexities.

I certainly can’t speak on behalf of every parent out there.

But I do want to talk about the true difficulties of parenting a child with disabilities from my own experiences.

Dealing with negative attitudes, ignorance and preconceived assumptions is what makes our lives harder.

It is other people and systems that make our lives harder. 

It’s the education system that undervalues pupils with disabilities that makes their nursery/school experience harder.

It’s the medical system that often refuses to cover care and resources that children need to be comfortable and to thrive.

It’s having to jump through hoops, making endless phone calls and filling in ridiculously designed application forms and paper work to access the most basic but essential things.

It’s relying on charities to pick up the slack where these systems are failing.

It’s the negative attitudes towards disabilities, especially the prevailing attitude of pity that is often disguised as “niceness” — yet blatant ableism — that suggests our lives are “so hard,” but not representative of the reality of my child’s diagnoses.

If you ask any parent to use words that describe parenting, most of them will inevitably use words such as hard, exhausting, complicated, lonely, expensive.

Because parenting, in general, can be all of those things.

Parenting is hard.

Many of us will agree that this parenting lark is one of the hardest thing we have ever had to do.

Yes, parenting my child in an ableist world makes it much harder than it needs to be.

But not because of my son.

Not because of who he is. Not because of his diagnoses.

It’s hard because this ableist world fails to consider the lived experiences of disabled individuals, failing to see them as fully human, or as deserving of dignity and respect.

But these attitudes are not acceptable. 

That is a fight I will keep fighting for my son until I take my last breath.

I am very passionate about raising awareness of families like ours and always do my best to politely educate others.

I am aware that not all ignorance comes with malice. It is merely a by-product of the society we live in.

Until I had Joseph I was ignorant too.

The fact that I was makes me even more determined to help others understand and to change attitudes towards people with disabilities.

I would like to tell those people what parenting a child with disabilities is really like;

It’s like having a toddler, because he is a toddler.

It’s summer in the park on a huge picnic blanket.

It’s lazing around in front of the telly on rainy afternoons.

It’s celebrating birthdays.

It’s having inside jokes. 

It’s negotiating with a toddler who has his own mind and interests even though he is none verbal. 

It’s Sunday morning cuddles squishing into one bed.

It’s lots of hugging.

It’s trips to the safari park and sea life centres.

It’s lots of words of affirmation.

It’s tantrums.

It’s feeling like we need a break.

It’s expensive.

It’s putting his needs above our own.

It’s doing anything to make him happy.

It’s praying for 5 minutes more sleep.

It’s working so hard to help him achieve and learn new things and celebrating like  lunatics when he does.

It’s messy, it’s exhausting, it’s beautiful, it’s parenting. 

It’s caring about social justice issues that affect my son and other children we know, and I will challenge anyone who believes my child or children like him shouldn’t have the same rights or opportunities as other children their age. 

Its all of these things and so much more. 

It’s life!

Because here’s the thing: disability is a part of humanity. It always has been. It always will be.

And we will continue to have brothers and sisters, and sons and daughters who are disabled.

It is about time that society caught up and learned that it is not a lesser way of living, or rather it doesn’t and shouldn’t ever have to be. 

Parenting my child with his abilities is not “so hard.” 

Being a parent of a child with disabilities in a disabling world..now that is hard.

If you’ve read any of my other blogs, firstly thank you.

I am always genuinely amazed when I get messages saying “your blog really resonated with me” etc.

Apart from the fact I find this cathartic, I love talking about my kids.

But, Jacob, this one is all for you (albeit future you!).

I hope one day when you’re old enough you will read this (I’ll probably bribe you with chocolate but whatever works eh?!) and understand just how much you mean to me and of course your entire family.

Where do I begin?

You, your brother and sister were our little miracle triplet “ICSI pixies”, meaning a team of incredible doctors and nurses helped us to have you.

You were loved, wanted and treasured before you were even in my tummy.

I remember so vividly telling friends and family that we were expecting triplets and the absolute joy we felt that you were coming into our lives at last.

Then we found out you had spina bifida.

We hurt, I want to be clear about that.

But sweetheart, we hurt for you.

As someone with Multiple Sclerosis and a nurse, I knew the challenges you may face with your condition and no parent wants that for their child.

In saying that, spina bifida messed with the wrong family!

You have a team behind you who love you so deeply they’ll never be able to tell you (as they love Ben and Chloe too!).

One of the first things people told us when we started to share this difficult news was “I’ll be right there the whole time”.

That’s proved true for so many people.

You have a family who love you for exactly who you are, especially your brother and sister.

There is a saying I tell you even now when you are only six that says “If you want to know how to treat a child with special needs, watch their siblings.” It is so true.

Ben and Chloe accept you fully for exactly who you are because that’s who we love, flaws and all.

You see we are all flawed, it is just unique to each person.

For example, MS aside, Daddy says I can be a bit “nit picky” with details…I’ll leave you to work out whether he is right or not! (Remember that chocolate Jacob…)

Despite that, there are people who I thought would be with us for the long haul who have left, for varying reasons.

You see, having a child with additional needs (as part of a set of triplets!) when you yourself have a disability yourself doesn’t exactly come with a guide.

I did a lot of things wrong.

I am sorry for that because in losing those friends I also lost their children, who inevitably would have been friends for you.

Some people couldn’t handle the level of pain I felt when you were going through prolonged struggles and wanted me to be something I wasn’t.

We lost them too.

I am sorry Jacob, I wish I could offer you a whole army of ready made friends because that is exactly what you deserve.

However, we found support in new people.

As I write this we are in lockdown three during the covid-19 pandemic that I am sure you will read all about someday and vaguely remember the days mummy stumbled through homeschooling!

My cousins and I have got back in touch and are using an app called “Marco Polo” which allows us to send video messages to each other.

They are a great support to me which in turn allows me to be a better Mummy for you.

I also have a dear friend who has been there through thick and thin and now has a beautiful second born daughter who I am sure you will grow up to play with whenever all the restrictions are lifted.

There are also the friends we have made through spina bifida, you’ll know who I mean in a lovely little girl who is very close to your age and has similar health challenges.

You are about to start a new school, but are leaving behind a literal classroom full of friends who will miss you so much.

My own Mum loves me as I love you (and I love her right back in return, she is incredible).

She taught me how to love, and it is because of her I am able to be the Mummy I am to you.

I need more help than I’d like to do things and I know you even currently feel the same and will face that all your life.

Jacob please listen to this especially…needing help is NOT a weakness and it takes great strength to know how and when to ask for help.

I hope I teach you that so that you can live your best life.

I love you so much little man and want to thank you for the journey you are taking me on.

I’d take your pain away in a second but I couldn’t imagine changing anything else about you.

To me, you are my perfect little boy.

Thank you for being exactly who you are sweetheart, I love you to the moon and back, as well as all the stars in the sky.

Love always, Mummy xxx

James, my autistic son, gets cold feet.

Sometimes this is because he often prefers to go barefoot, sometimes this is because his blood circulation isn’t as good as it might be, or maybe it’s a combination of the two.

He likes to have his feet rubbed, to warm them up, but he has also enjoyed having his feet immersed in a bowl of warm soapy water and washed.

The sensory feeling of having his feet in the warm water is really enjoyable and having us washing his feet with a flannel tickles and is fun; the floor sometimes gets a wash too, as do we!

As I wash James’ feet, there is another thing going on as well; I am serving James as I wash his feet, being like a servant to him.

I might be his Dad, he might look up to me in many ways and (sometimes!) do what I ask him to, but in that moment I am on my knees washing his feet, serving his needs.

To me, it reminds me that a vitally important part of my role as James’ Dad is to meet his needs, to do whatever needs to be done to help him.

To be willing to put down whatever I think of as ‘important’ in that moment, whether that is work, church, household chores, whatever, and to wash his feet.

As I wash James’ feet, I see the joy on his face through the connection that we have; he chuckles and laughs, he delights in what we are doing and in the trust and relationship that we have.

As I wash James’ feet, I learn humility and servanthood.

In my ‘day job’ I spend time helping children’s, youth and families workers to be inclusive, and that humility and servanthood is the attitude I try to adopt and encourage others to take.

We work together to see change happen… to serve, to wash feet.

Because when we’re on our knees washing feet it’s hard to feel self-important, it’s hard to feel superior, it’s hard to consider ourselves ‘better’ than the person we’re serving.

We put their needs first, they are our focus, this is the most important role for us in that moment, nothing else matters.

We meet their needs, we change, we don’t expect them to.

Whether as you read this you are a parent or carer with a child with additional needs, or you work with children, young people or families where there are additional needs present, let us all metaphorically roll our sleeves up, get a bowl of warm soapy water, get down on our knees adopting an attitude of servanthood, and wash some feet together….

And as you do so, look up at the face of the child or young person you are serving, you might just catch a glimpse of them smiling back at you.

When someone first meets Isla they may see a girl who holds herself awkwardly, won’t meet their eyes and is either overly friendly or just plain rude.

However if they were to stick around for a while they might see all the following amazing things about our girl who marches to the beat of her own drum.

That she is kind

She loves her friends and people close to her, her family, her dogs and her teachers.

These people are her world.

She prides herself on being kind although this might look different than grand gestures.

If you have found a friend in Isla you are a special person indeed.

That she has an inquisitive mind

Isla may have been diagnosed with moderate intellectual disability but she is a fountain of knowledge when it comes to subjects that interest her.

She knows the Solar System off by heart and loves to find out how things work.

She just has trouble applying her knowledge into real life.

That she is affectionate

Saying that people with autism aren’t affectionate is not always true.

Isla loves nothing more than a cuddle and is very tactile.

She prefers it to be on her own terms but that is just like anyone else.

That she is hilarious

Isla enjoys making people laugh even if most of the time it isn’t intentional.

You can’t help have a chuckle at the way she expresses herself. 

Idioms and irony are slightly lost on her but she can dish out her own version of sarcasm and metaphors.

Her views on the world and her determination to make sure things are done in the correct way 

That she sees the world differently

When with Isla you really do start viewing the way we live our lives in a very different way.

You start seeing the noise, the hustle and bustle and behaviour of humans in a different light.

You will start seeing signs and logos that you have never seen when Isla brings them to your attention.

Isla likes the detail and she will often see things that you would never normally notice. 

That she is brave

Going out in a world that doesn’t make sense is scary.

When you afraid of balloons popping, candy/lolly wrappers and rain and ice life can be hard.

She overcomes her fears daily and carries on the best she can. It does help put things in perspective.

When we were told Alfie had an unsafe swallow and would need a feeding tube, it felt as though it was something else for us to grieve, another loss to overcome, another thing to learn and get used to.

All I could think of was how much Alfie had lost, how much he enjoyed food and would miss it, how far he had come in learning to feed himself his drink and how heartbroken I was.

All I could see were negatives and how it was one more thing for us to go through.

Another parent was in x-ray at the time we found out, I was sobbing after Alfie’s barium and asked her about her child.

He had a feeding tube and was having a feed whilst we were sat there.

It just looked so clinical and I was terrified.

I was horrified when she said she loved her child’s tube. How could she, I thought.

I judged and I could not understand how she could feel anything but upset towards it.

But Alfie has been tube fed since May 2020 and I now know what she means.

Our tube feeding journey has not been easy by any feat, but nearly 1 year on and Alfie is doing so much better and the benefits of the tube far outweigh the loss.

Alfie is healthy and well, he is gaining weight and the stress of Alfie not eating well or drinking enough has gone.

Alfie is allowed food orally for taste and oral pleasure provided they are not liquids or similar but are also not completely solid- basically foods that melt are ideal such a quavers or very thick yoghurts.

Instead of sitting and slowly feeding Alfie for hours and pushing when he is tired, we connect his tube and away we go, whether he is awake or asleep.

Gone are the days of falling asleep worrying that I would need to make sure Alfie ate more the next day, now I know exactly how much Alfie has had and the calories he has consumed.

Sometimes it does feel too clinical, and of course I wish Alfie were able to eat orally safely, but he cannot, and we have to make the best of what we have.

The most important thing is we have a way to feed Alfie that keeps him safe.