It’s a Snow Day! Or… How To Entertain a SN Child When Their Routine is Stuffed

The white cold stuff has arrived in Staffordshire and the countryside looks stunning.

Once the initial excitement from the Small One at the presence of snow and the confirmation that school is closed for the day has passed, the inevitable boredom sets in.

And the sense of parental panic begins to build.

Sam thrives on routine. He does not enjoy his routine being disrupted and he loves school.

Once he realises that school is cancelled but Mummy still has to go to work, he starts to pout.

This child wants BOTH parents home to play.

Poor Daddy has to somehow entertain this non-verbal mini-dictator, who like anyone else gets bored with any one toy or activity with remarkable speed.

Que the increasingly frustrating game of guesswork to identify what the little chap would like to do next.

If all else fails, the Electronic Babysitter (a.k.a. the TV) goes on, if for no other reason but to allow one frazzled parent to top up on the caffeine and go for a wee.

We have a hierarchy of things To Do in situations such as this.

We start with offering a choice of toys. Once he’s had enough of choice 1, he chooses another toy or some arts/crafts.

After that, its another toy or cartoons. The ultimate toy choice however, when all else fails to make him smile, is Lego. Lego is Sams most favourite toy ever.

My little Master Builder loves nothing more than sitting with Daddy, putting bricks together.

If he’s tired, he’ll lie down but still watch Daddy at work. And with some luck, before he loses interest in this activity Mummy will be on her way home to relieve Daddy, and to get out the story book complete with silly voices.

If all else fails, building a pillow fort within which to build Lego is always a winner.

While we can’t stop days like this when routine just goes to chaos, we can at least ensure that we get through it with Sam entertained, and our sanity (just about) intact.

Now, would someone be so kind as to pass some coffee, while I keep my fingers crossed for a swift return to school tomorrow?!

Fits, Fears, Faith and Facebook

I remember so vividly the morning that James, our 16-year-old Autistic son, had a fit; a full tonic-clonic grand mal seizure, something he’s never had before.

It is right up there with the most scary, frightening things I have ever experienced in my life (James knew very little about it himself, thank God)…

Even writing about it now brings goosebumps back as I remember what happened…

James had had a bit of a disturbed night, and so had been late getting up. It was about 10am and he had come downstairs; I had just helped him get washed and dressed and had taken his pyjamas out to the kitchen to the washing machine.

When I returned moments later, James was fitting… he was rigidly stiff, having rapid muscle spasms, and losing consciousness. Although it only lasted a couple of minutes I think we lived two lifetimes in that time…

In some ways we went into autopilot as our response to this crisis…

My wife, Clare, stayed with James and made sure he was safe from further harm while I grabbed the ‘phone and called for an ambulance.

Having someone calm on the other end of the ‘phone, asking relevant questions, taking important details, giving us things to do, continually reassuring us that help was on the way, all helped massively.

As the call ended, and with James’ fit having stopped, we awaited the ambulance, who arrived about five minutes later…

Five minutes during which I remembered that our faith brings calm in a crisis, offers reassurance and a presence that is so important in a storm.

We prayed, for God’s presence, for peace in the storm, and for James that he would recover fully and be fine.

Not for the first time, the words to my favourite worship song were a comfort and inspiration to me… “Christ alone, Cornerstone, weak made strong in the Saviours’ love. Through the storm, He is Lord, Lord of all…”

The paramedics arrived, James was assessed as being out of danger.

Plans started to form for arranging for him to get some tests (regular readers of my blog will know that for James going to A&E at that time was not possible).

Once the paramedics had left, with James weak from the experience, sleeping through the day, we knew God’s presence with us, his peace and comfort, he was with us in the storm and was Lord over all…

We posted details of what had happened on Facebook, asking our friends to pray for James if they were the praying sort, or to think positive thoughts about him otherwise…

The response overwhelmed us as so many people held us, and especially James, up in prayer and thoughts.

So many wonderful messages of support and offers of help; so much encouragement and kindness… I couldn’t possibly include them all, but here is just a selection:

“Oh, God, we cry out to You on behalf of James and his entire family. Comfort them as only You can, and make a smooth path for them in dealing with this frightening situation.”

“Stay strong mate, know God is holding you all as a family and lean on his love and care – praying for you all.”

“Praying peace for the entire Arnold household. May the hand of God be upon you all right now with favour, restoration and health.”

Facebook, and social media generally, can often get a bad press.

It is sometimes used in hurtful and damaging ways, but it can be, and often is as in our case at that time, a wonderful way of people standing together with those who need their friends…

I can’t begin to adequately express the gratitude we have to the 70+ people who responded, and the many more who also stood with us in prayer and thoughts.

As we look at James today, laughing and full of mischief, eating like a horse and seeming to grow taller by the day, it seems another lifetime ago that he was unconscious, unresponsive, breathing shallowly…

James has had further fits since, and will be starting medication soon, but whatever the future holds we can face it with confidence knowing that our God is greater and is with us, as are our amazing and wonderful friends from across the world who are ready and willing to stand with us in the storm.

Situations like this, frightening though they are, develop our faith and closeness to God and help us to value our friendships all the more… and to be grateful for social media that can bring those friends together!

“Even though I walk through the darkest valley, I will not be afraid. You are with me. Your shepherd’s rod and staff comfort me.” Psalm 23:4 (NIrV)

Who might you and I show concern for and comfort today?

A Child’s Day with Cerebral Palsy

You’ve just turned 3 years old, your mind right now is like a sponge, taking everything in and all you want to do is explore the world!

“What’s that over there?” “What does that do?” “I need to go do that!” “Mummy’s going over there, I’m going to see what she’s doing” but wait a minute.. .

You can’t. You know what you want to do so why is your body stopping you?

You see everyone else walking about, picking up toys and exploring the environment around them why can’t you do that?

You may be somewhere new and just want to run and hide behind mummy but you can’t. You become confused, upset, frustrated…

That is the every day reality for a child with cerebral palsy.

My son has quadriplegic cerebral palsy and his mind works in the same way as any other toddler, he can talk and has an amazing understanding of everything but physically isn’t able to sit up, crawl, move around, walk and even struggles with his hands with some tasks, it’s the one part of his brain that unfortunately became damaged when he was born prematurely.

Anyone who has a child will know that they get into EVERYTHING, they will turn your house upside down and sometimes you’ll get a bit annoyed with this and lose your patience after saying “please don’t do that!” for the 100th time that day, but imagine your child couldn’t do any of that…

If you don’t have a child with disabilities then you probably haven’t ever thought about it, you’ve never had to!

And I’ll be honest, I had genuinely never really heard of Cerebral Palsy before my son was diagnosed, I had never seen a child not being able to walk when they should be able to so I never even realised it was an issue for some!

The reality is that unfortunately it is, for thousands of children.

Cerebral Palsy means that you struggle with coordination and control of your muscles, you have seen everyone around you sit up and move around, you fully understand the concept of this but when you try… no matter how hard, your body just doesn’t seem to be able to do this.

It can be frustrating, it can be upsetting but the most important thing is to NEVER give up.

Despite his disabilities, my child is happy. Very happy in fact!

I teach him that his disabilities don’t define him, he can still do what his friends are doing and we will always find a way to ensure he is included in all the fun and games with his friends and family and it’s so, so important that everyone else does the same too, he’s just like me and you so he doesn’t need to be treated any different.

He just wants to play like all his friends so please teach your children that it’s OK to be different, make friends with children of all abilities!

My son cannot walk but my son can be happy, he has the most determination I have ever seen, he is loved and he will ALWAYS be included.


It is estimated that there are 350 million people worldwide living with a rare disease.

That is the only statistic I will share with you today. I have written many, many times about the statistics around having a rare disease.

I have written about awareness of rare diseases and how we as a society can help encourage more research into rare disease.

I have written every year for four years about the last day in February and the fact that it is International Rare Diseases Day (RDD)

To find out more about the campaign this year please visit here.

This year I wanted to share with you all the reality of the things people have said to me over the years regarding Ethan having a rare disease.

Some make me laugh now but didn’t at the time, others still make my blood boil and some are just lovely.

I have a feeling I am not the only parent to have been asked these kinds of questions regarding their very own rare gem.

Ten Things I have heard since my son was diagnosed with a Rare Diseases…

Really? Is it that rare. Are you sure… I’m only asking because I am nearly 100 percent sure that there was a boy in my friend’s cousin’s neighbourhood who had that or something like it and sure they never mentioned rare.

Yep, I am 100 percent sure that the condition my son lives with is rare but hey maybe you’re right and I am wrong.

Aww you’d have no idea that there was anything going on with him, he just looks a little bit Down syndrome or a little Autistic… to be honest I thought he was a dwarf …isn’t that rare too though?

These are the kinds of comments that really shouldn’t be in your head but if they are, you should really never EVER say them out loud to anyone especially a parent of a child with Down syndrome, Autism, or Short stature,in fact just don’t say it to any parent of any child with a disability.

Trust me, it will save you huge embarrassment and may I suggest googling the terminology you are using – you twat!

Sure aren’t we all rare eh?

No. No we are not all rare.

We are all unique. There’s a difference. Come back to me when you’re the one explaining to a doctor how to medically treat your child.

How did they diagnose him with him being so rare? I mean, a lot of people are probably walking about with the syndrome and not diagnosed. When you look at it like that, you’re very lucky he got diagnosed.

Oh dear. It took almost 6 years to get a diagnosis for Ethan, considering his syndrome, I am pretty sure there are parents out there who know something is going on with their child and they are on the cusp of being told it’s a rare genetic metabolic terminal syndrome called Hunter Syndrome.

I am also pretty sure there are no undiagnosed adults living with Hunter Syndrome, as getting to adulthood without having a metabolic issue glaring at a doctor is very unlikely…

Children are generally diagnosed between birth and 2 years due to the issues which present.

Normally a child is given an appointment with a metabolic specialist in a specialised children’s hospital before discovering what is ravishing their child.

I Googled the syndrome and I have to say it looks like there’s a cure coming, so never ever give up hope.

This is a tricky one because I know this is intended to give me hope and it is well intentioned.

So, I nod and say yes, yes… money is the issue, have you donated?

Did you happen to notice that that is being driven by parents? There’s no funding. No government grant or aid to help.

Ethan will never benefit from this possible cure (due to his age) but there are children out there who will.

So, if you’re going to talk to me about a possible cure, at the very least have donated, it is the first thing I will ask you.

So you don’t hear much about rare diseases day, like ever. I had no idea until I read your piece that RDD is the last day of February.

Thank you. Thank you for reading my writings.

Share it. Please share it, commenting isn’t enough. I need you to share it.

Do you know that if there was more awareness within the general public and within the medical profession, children would be diagnosed sooner, families wouldn’t have to fight to be heard by all the wrong doctors and research into many rare diseases would begin as awareness would lead to funds and funds lead to research and of course research leads to treatments and cures.

What is it like explaining to doctors about Ethan? Do you get annoyed or do you like knowing more than them? (when it comes to Ethans syndrome) I once told my GP about Ethan and they had never heard of MPS before let alone Hunter Syndrome, it felt good.

So many friends and family who know Ethan well have asked me this and the truth is in the beginning I hated it because I assumed I wasn’t explaining the syndrome right.

I would see their eyes glaze over and then they’d excuse themselves while furiously going through Ethan’s file.

Now, I am more comfortable with gently explaining it and telling them what it is I think Ethan needs in order to feel better.

There is a mutual respect between GP’s and parents like me.

Aww bless it’s not easy but sure it could be worse, I mean at least it’s not something like cancer he has.

This comment especially when cancer is used makes no sense to me.

If my son had cancer he would have treatment and that treatment might get rid of the cancer.

Having a rare syndrome like Hunter Syndrome means that there isn’t enough research or people alive with the syndrome to force government into funding a research lab in order to make a drug which might cure the syndrome.

There is no drug, there is no cure and there is no government research into this syndrome.

Parents in America, England & Europe are the ones trying to raise funds in order for a lab to be able to do some research into some form of a cure for Hunter Syndrome because it is rare and rare doesn’t register with governments.

Do you know how many people have Ethans syndrome? Do you know how many of them live in Ireland or England?

I like these kinds of questions.

It makes me think that there is a genuine interest in Hunter syndrome – in the whole world there are roughly 2000 living with Hunter Syndrome, three of them are girls.

In Ireland there are 9 boys and one girl that I am aware of, living with Hunter syndrome and in the UK there are roughly 52, living with Hunter syndrome.

So basically you’re telling me that the chances of you having another child with the same syndrome is fifty percent if he’s a boy, yet you had two more babies after Ethan was born! Wow, I don’t think I would have done that.

Well don’t hold back or hide your true feelings!

This kind of comment used to bother me but it doesn’t so much these days.

The chances of me having that defective gene to pass onto Ethan is really where this began. Genetics are fascinating.

My parents had more chance of winning the lotto than passing that gene to me.

It was just something that happened at the time of my conception.

Simple as that – the scary thing is, it can happen to anyone.

Had I been a boy, I would have had Hunter syndrome- yes having a boy with Hunters is rare having a girl with it is ultra rare. I carried that gene unknowingly all my life.

I would never have known either had it not been for Ethan.

Ethan was almost 6 when diagnosed, which means his brother was already running around like a hyper 4 year old.

Years went by and we thought our family was complete, two lovely boys.

Like many parents, we didn’t plan on our third but found ourselves looking down the barrel of a nine month wait to see how this baby would come into the world.

We got lucky.

But, we decided no matter what that our last son would get everything he needed if he were to have Hunter Syndrome, we knew the ropes by then and were very confident we would be able to get him into medical trails (we had tried this with Ethan but heartbreakingly he wasn’t a suitable candidate) which were ongoing in England at the time.

I am very happy to have three little boys and know how lucky I am to have them and I guess that’s what makes me different from those who ‘know damn well what they would or wouldn’t do’ in my situation.

But hey, they have a greater chance at winning the lotto than being in my situation!

The bottom line is – having a rare disease is not that rare and parents and those with rare disease like to talk about their journey, they encourage thoughtful questions, conversations around awareness and what life is really like being rare.

This year the campaign is all about #ShowYourRare – so please do that and use the hashtag.

Here’s my little Rare Ethan


Five Things I Want for my Daughter with Complex Needs

1. To know how much you matter.

You are loved, important and valued. There are days feel an overwhelming guilt that you aren’t with me. You go to school, and you go to respite.

When you aren’t around me physically, you’re one of the only things I think about.

Everything I do is with a view to making your life easier and more enjoyable.

I do my jobs when you aren’t there as much as possible so that when we are together I can enjoy you fully and completely. It’s not just me though – daddy feels the same.

Your whole family feels the same. In fact, our friends, and even people we haven’t met that know of your journey – they are all rooting for you and see your importance in this world.

You fought hard for your spot here on this planet – harder than most of us have had to fight.

There are people out there who won’t understand, but they don’t matter – you, and your happiness, do.

2. To not be defined by what you can and can’t do.

You are not defined by what you can and cannot do.

A wise lady once said to me “If you judged me on my ability to speak Mandarin… I’d look pathetic. But if you judged me on something I can do or can enjoy… That’s what it’s all about.”

I’ve seen you  struggle amongst your peers to keep up, or even just to take part sometimes.

But with the right people around you, and with your sheer determination – none of it matters.

There are so many things mummy can’t do either, but there is plenty I can do. You are the same.

Not able to walk? We’ll get you a cool wheelchair to show off to your friends.

Not able to eat? So what… you have a formula that’s got better nutrition in it than any of us get.

You have learned to communicate without words and get better at it everyday.

You amaze me everyday with what you can do and the challenges you have overcome.

Through you I learned to take nothing for granted and to celebrate everything.

3. To be happy and understood.

My entire life pretty much revolves around meeting your expectations and needs. I spend a spend a lot of time ruminating, wondering, planning.

I want to know what makes you sad and what makes you happy. One day maybe you’ll use eye gaze technology to make sure everyone is aware of what you want or need.

But until then we will work tirelessly to make sure we hear you and read your expressions, sounds and movements.

There is a whole world out there that don’t know you how we know you. They might not know how to make you happy, so we need to teach them, and find ways for you to tell them.

It pains me to think of your eyes screaming something out to me, and me not interpreting you correctly.

You must get so frustrated with us.

If I’m ever not with you I feel a panic inside that maybe your needs won’t get met, or if you’re thinking I’ve abandoned you.

Sometimes you get so distressed for seemingly no reason – I hope one day we can get on top of that and we can figure out how to placate you.

4. To feel socially accepted and have access.

This is a big one. There are too many places we can’t go because of steps of lack of facilities.

The places we do go… sometimes we come across people who don’t understand.

I really hope that one day more people in the world learn some compassion and respect that people are different.

What makes us different makes us beautiful. You are beautiful and you deserve for everyone to accept you and provide access.

I’ve seen children stare, and even adults – unabashedly.

Let’s stare back and smile and wave.

I’ve heard people tut when you have a moment of excitement and can’t keep the squeals of joy to yourself.

I’ve seen other people be obnoxiously loud, and you struggle to cope.

One day we’ll find the balance.

I don’t expect friends round for tea, or sleep overs or a lot of the “typical” things I thought would happen before we met – I hope that we can build our own “norm” and traditions and that your crowd support and adore you how we all do.

5. To have no/minimal pain.

Every intervention or therapy you need – it’s a reminder of how hard you have to work to achieve a level of normality in life.

Recently at the dentist I had to help two people restrain you whilst they performed a descale and polish.

You were so distressed it’s going to take 4 sessions. I hated that you didn’t understand and thought I was helping these people torture you.

Everything we do is with a view to preventing pain, or surgery.

Too many times I’ve had to sign a consent form, or watch you fight against a cannula insertion not knowing why it’s happening.

I see your muscles fail to loosen in the morning and spend time massaging your legs and helping you stretch.

I see you writhe in pain from your sore limbs.

I wish I could take that pain away.

No child or person should have to endure such pain. I wish I could take that pain for you.

Do You Work?

My reply is always the same, yes, I am a full time carer to my twins, one of which is medically complex.

I accept the frowns and sheepish glances that follow.

I am mostly asked this by medical professionals, my interpretation is that this is just the automatic chit chat used to seem interested while the computer loads.

No real thought process has gone into the question and therefore they always seem caught out by my nonstandard reply.

I regard myself as many things, a wife, a mother, a PA, a disability advocate, a nurse, my daughters voice, a red tape warrior, a fundraiser, a blogger, a caffeine addict and most importantly I am me.

Losing your identity as a parent is part of the massive learning curve when you have children.

For me it has been a bit harsher. I returned to work after 10 months of maternity leave.

I gained back my independence, had adult conversations and gained a new focus.

But due to Violets health, I had to reduce my hours twice and eventually left my role after a short 9 months back in the workplace.

It wasn’t a choice, it was a necessity.

Often you will make decisions based solely on the best interests of those you love, you wouldn’t ever change those decisions but they still have a incredible impact on your life.

I feel a great purpose and reward from sharing our journey and experiences with others.

I am finding myself again along the way and I like the new version of me.

I have become stronger, more resilient, incredibly assertive and direct.

Qualities that are essential when battling never ending quests for support, funding or diagnoses. That’s your “work” now.

Parenting a child who can be in and out of hospital at a moment’s notice and who has an endless stream of appointments, doesn’t mix well with employment.

In fact, it makes it pretty much impossible.

The future we hope will bring more stability with Violets conditions and allow for a calmer and dare I say it “normal” family life allowing for more advanced planning.

And who knows maybe even a new career?

Vacationing With Jaylen

Before my family and I started going on vacations we would always change our minds.

Reason being we weren’t comfortable with people staring not only at my son who’s in a wheelchair but my husband whose an amputee.

I often talk to other families who feel the same way about taking their families out.

So, they just stay home rather than go out and have people stare at them.

Which is something I try to encourage them not to do and I always tell them my experience from our first and second family vacations.

It was about three years ago when we started going places. I’ll never forget our first vacation.

We went to the Great Wolf Lodge in North Carolina.

This place isn’t very accessible but there is plenty to do.

We decided to go here because our kids love water especially my son. And it’s an indoor waterpark. I hate being outside!

While there of course we got the stares on the elevator or in the restaurant. But when we were in the waterpark the attention really wasn’t on us.

So, we really got to enjoy ourselves. The experience was amazing, and we have gone there every year since our first visit.

Our second vacation was at the beach.

The experience was not as good.

Well with us not use to going anywhere we were thinking we could take our son to the beach in his wheelchair. Well we found out that wasn’t going to work.

We ended up carrying him while still in his wheelchair to the water. By the time we got there we were bombed.

You know how the sand can take a toll on you when you’re walking through it.

Well imagine walking through it carrying a sixty-pound boy in his wheelchair.

When we got by the water of course people were staring at us because we just carried a wheelchair with our son in it. But the stares didn’t bother us this time.

I guess because we were tired from carrying the wheelchair. We just focused on enjoying ourselves and not on the people wasting their beach time looking at us.

Luckily, they have those beach wheelchairs that you can now rent when you go to the beach.

And there are a lot of more accessible beaches now.

So, when looking for places to visits don’t think about what others may think, don’t think about how people may look and of course you may run into some problems but most importantly have fun.

Now We Are 40

Recently I posted about approaching my 40th and feeling wrung-out.

I was in a massive funk.

Years of caring has taken a heavy toll, my body is broken from lifting and I have acquired some exciting sounding conditions.

Sometimes you need to voice those feelings; this is a far happier post – I am a larger dress size then I’ve been before, a few grey hairs (an excuse for funky hair?!), pregnancy and gravity have conspired so now certain parts of mine anatomy are heading south.

And I don’t care one jot.

I didn’t expect Motherhood to be like this. Unintentionally, I formed a picture in my mind of who my child might be; happy, intelligent, loving, academic possibly.

I’ll be blunt – when Sam was diagnosed I was terrified that I would be up to the task, grieving and overwhelmed.

You lose the child you thought you had, while still loving the child before you.

It is hard as Hell.

I grieve for what my boy won’t experience. For what his Dad and I won’t experience.

But I wouldn’t swap him for anything; I couldn’t be prouder of this little human. He is the happy, intelligent, loving child I dreamt of.

He’s taught me more about myself than I learnt in the 32 years before he arrived. He is so much more than his diagnosis.

He is a child, first and foremost.

Life continues, alongside the daily medications and seizures it’s easy to miss the joy in everyday mundanity.

There’s magic in reading a bedtime story, painting, or going out for a walk together.

Many friends would do anything to have just one more day with their babies; I’m incredibly lucky to be Mum to this amazing little boy.

Life should be lived; even if making plans only to cancel thanks to epilepsy seems to be par for the course.

So, stuff it.

I intend to grow old as disgracefully as possible, with my little partner in crime by my side chuckling away at his bonkers ol’Mum.

Bring it on 40’s, I’m ready for ya.