My job is to steady the ship

I’ve seen a few posts over recent months, referring to people in the pandemic being in the same boat, others saying that we’re in different boats but in the same storm; they both make sense to me.

Even before Covid, and I am guessing like many other families who have a child or children with additional needs, I felt it was my job to keep things together.

Throw in a pandemic, and I felt my role set up a gear – it was job to steady the ship. 

We hit our first storm just after Heidi was born – thrown into troubled waters, that definitely hadn’t been forecast, scrambling to get our life jackets on so that we could keep our heads above water.

We managed, just, to cling on.

We felt like were drowning in the early days, swamped with information, and the odd big wave (in the form of seizures or set-backs) that would come crashing in to us, knocking the wind completely out of our sails, and sending us off course.

We coughed and spluttered, and we held on, tight.

Somehow, the waves calmed.

The view cleared.

We were steadily heading forward, and it started, at times, to feel enjoyable.

We became a cruise liner – slowly moving in the right direction, going at our own pace, and taking in the scenery.

Between us we became the cooks, the cleaners, the entertainment (fun is still really important, despite additional challenges!), the weather forecasters, the deck hands, maintenance, logistics…the list goes on.

We had our little crew around us too – a close knit team, who came on board to help us out, bringing supplies, and guide us to shore.

We also met other travellers who were, thankfully, happy to share their journey and the lessons they had learned along the way.

As the months and years passed, apart from the odd rough patch, our ship continued to sail.

Very much the Captain (well, Steve might have something to say about that I guess!), it became my role to keep things organized.

I often joke about “running a tight ship” but it really is how I try and keep sane.

If things are planned, I know what’s coming up, I feel better.

When bad weather hits (usually in the form of an illness or hospital stay for Heidi, but recently with Covid and shielding), it’s a feeling of having to hunker down, pull together, and know that calmer times will be coming.

It never ceases to amaze me though how in those times of needed (and even when you don’t realise you are getting into troubled waters), how quickly other ships will appear alongside you.

Without hesitation, and without thinking of their own predicament, the army of support is there. 

Other families, other parents who simply “get it”.

They may be on a different boat, they may be experiencing the storm in a different way, but that all becomes irrelevant.

We are in this (whatever “this” may be) together, and we’ll do all we can to get through it.

Here’s hoping that better times are ahead, for all of us.

A bed fit for two queens

We were well aware in spring the physical delays on both girls were going to be sticking around.

Their older sister grace who was 3 at the time weighed 18kgs, lifting her sometimes reminded me of the looming future decisions of moving and handling both of her younger siblings.

I would put them all to bed exhausted from lifting them in and out of cots, postural seating and specialist equipment all day.

Then in typical SEN mum style I would sit up at night googling solutions to these problems on the horizons, asking other families slightly further down the line and let’s just say the mix of responses sent me into pandemonium.

So I am going to tell you of my experience.

Here in the UK we have what they call a children’s loan store of specialist equipment.

Occupational therapists from health or social care can put requests in to order new equipment or send out something that’s already in stock from the Aladdin’s cave every county has one tucked away on an industrial estate.

I do wish they could offer families like ours guided tours of the loan store or a catalogue that I could thumb from front to back like I used to with the baby store catalogues.

I could at least mentally prepare for what is and isn’t available, maybe even leave me an order form like the Avon lady does to pick all these wonderful pieces of equipment.

Can you just imagine?

So I knew medical beds could go a lot higher than typical cots.

I had researched a few brands, the benefits and features on the beds I needed.

I casually mentioned it to our health OT to be told we don’t meet the criteria and to go speak to the social OT, as to whom also felt we didn’t meet the social care criteria for medical beds.

This went back and forth between both decisions before being escalated and resolved via line managers.

It took 6 months of this debate before the beds finally arrived, I hadn’t actually seen them before the delivery day so was a little apprehensive that we had made the right choice switching at such a young age.

The loan store sent out 2 delivery men to put the beds together in the room and show us how they went.

I had so many bittersweet emotions that day, all the excitement was evened out by the sombre mood of “medical hospital beds”.

As they called me into see them all set up ready to go my heart burst they were very homely, wood finish, bumpers in a decent colour.

So much higher for manual handling and overnight cares, the tilt in space function is just divine, instantly everyone is sleeping better.

We fitted the sleep systems across into the new beds and know these beds are going to last them for most of their childhood.

We have decorated the room and beds with sweet wall décor and cosy blankets, drawers tucked underneath the beds to store clothes away.

Suddenly those mixed feelings had gone I was now climbing up to peg the bunting on the wall like any other kids room.

Everyone that has seen the bedroom has been so complimentary.

It is now a bedtime sanctuary fit for a queen; we all cannot wait to go in there every evening to wind down.

My only regret… that I didn’t push for it sooner.

there is no point putting your head in the sand hoping these issues will go away or having an “I will just manage” attitude, everyone is happier in suitable equipment and now I am no longer sat panicking about the future, I am in control planning for every possible outcome come what may.

My next adaption mission… bathing and hoisting!

Snow Days and Sensory Issues

Earlier this month, we got a snowstorm.

Not a big deal for most of the country, but in our little corner of Northern California, it’s almost unheard of.

It rarely snows in the wintertime here, and if it does, it usually changes to rain before any snow has a chance to accumulate.

This time we got a full 8 inches of snow, and while my three boys were more than happy to go outside and play in it, my daughter wanted nothing to do with it.

She’s 14, on the autism spectrum, and has many sensory issues.

She lasted about five minutes outside, and most of that five minutes were spent trying to get fresh snowflakes off of her mittens.

She also wasn’t digging the way the snow felt when she tried to walk in it.

She walked over it like she was walking on hot coals, even though she had boots on.

No amount of coaxing offers to build a snow fort-not even comparisons of the wintery scene to one of her favorite movies- Frozen- could change her mind.

She couldn’t get back inside fast enough.

Aside from the sensory stuff, she was a little jarred about how different everything looked, covered under a blanket of snow.

She kept pointing out the window, and I reassured her that it would start to melt when the sun came out.

I didn’t even think about snow being a challenge for her before this snowstorm because it’s not something we have to deal with very often.

I never realized how many sensory challenges come along with winter weather.

I grew up in New England, where snow was a regular occurrence, and I remember all the layers of clothes, the itchy wool hats, and the heavy boots lined with plastic bags so our feet would stay dry.

The scarves covering half of our faces and the bulky gloves and mittens we wore that inevitably would get soaked within ten minutes of playing outside.

I can see now how any of those would be a nightmare for a kid with sensory processing issues, so I went online and searched for some tips to make snow days more enjoyable for kids with sensory issues.

I found some good ideas such as:

Letting your child pick out some winter clothes, and get them used to wearing them before winter actually hits.

Check out online stores that specialize in sensory-friendly clothing.

Help prepare them by reading lots of stories about winter activities.

Before the snow melted, I was able to implement one suggestion of inside sensory play with snow. I scooped some up in a bowl and let her play with it at the table.

She played with it until it started to melt, which I’m considering a win!

Now, hopefully, it won’t be several years before we see some good snow again!

Types of tube feeding

This time last year, the only experience we had had of tube feeding was when Rory and Alfie were in SCBU as new-borns.

But in the last year, everything has changed.

We have done NG tubes, NJ tubes, G-tube, and GJ-tubes and now we are back to our MicKey button.

So, I thought I would write about what we have been through, to hopefully provide helpful (rather than clinical) information to anyone who may be at the start of their journey.

For us, any type of nasal tube was absolute hell for a multitude of reasons.

We did NG tubes for roughly 2 months and though they are easy to use once passed, the trauma of having the tube passed was truly horrific, and Alfie struggled to tolerate the tube when it was in- we never managed to keep on in for more than 12 hours which would mean a new tube had to be passed each day.

For NG feeding, the steps are PH test, flush, feed, flush, finished. Simple and easy, though gravity feeding takes its toll on your arm!

NJ is similar, but significantly different all at once.

Any feeding tube that is jejunal requires the feed to be done very slowly as the liquid is going into a small part of the intestines called the jejunum, rather than the stomach.

For those suffering severe reflux, it can be ideal but is not without its problems.

For NJ tubes, the passing of the tube is not easy, the tube must be ‘floated’ down gradually, which means an NG tube with more length being pushed further down every half hour or so until it goes into the jejunum, and this is confirmed with an x-ray.

We never had one successfully passed with Alfie as each time they tried, Alfie either ripped it out, or the tube wrapped back up out of his stomach into the oesophagus rather than going into the jejunum.

We did, however have a GJ tube (gastro-jejunal) tube for quite some time so have had our fair share of jejunal feeding, and I must say, it was tiring.

Jejunal feeding is nearly constant.

Alfie was fed for approximately 19-20 hours a day and the bowel movements are something else (picture poo everywhere several times a day!).

It was also worrying as there is always a tube around for little hands to pull or to get caught on something when playing, so we never felt at ease.

Finally, there is the MicKey ‘button’.

Our little, ‘low’ maintenance feeding tube. Though it has been the best fit for us, it is still tiring sometimes.

Each week we have to check and change the water in the balloon which is nerve wracking as that is how the tube stays in place.

But on the whole, using the tube is relatively easy.

You attach the extension to the button, vent the stomach if needed, flush, feed (we use a pump or syringe dependant on feed type), flush and detach the extension.

What’s your favourite photo of your child?

Possibly like no generations before, our children have grown up with their whole lives being captured on camera.

Whatever our views on social media, many of our children have had their lives broadcast to the world as every achievement, milestone or event has been posted on Facebook, Twitter, Instagram or a hundred other platforms.

As parents and carers we’ve amassed hundreds, possibly thousands of photo’s and video clips of our children.

Maybe, like me, you keep planning to spend a day or two (or ten!) cataloguing them properly someday, or maybe you’re more organised than me and have done this already.

But in our vast collection of photo’s of our child (or children), there will be favourites; photo’s that just captured a moment that was really special, or held for all time a look on our child’s face that was pure joy.

Photo’s that we look back on with nostalgia and delight, reliving that moment again and again in our hearts and minds.

What is your favourite photo of your child?

If you are willing to share it, maybe you could add it to where this blog post is shared on Firefly’s social media sites.

Maybe add a brief description of the moment that it captures.

Mine? Well, it’s got to be the one I’ve used with this post.

A photo of James taken years ago when he was just six years old.

It was taken at the park as James played in one of those large plastic bowl swings, the plastic causing his hair to stand on end with the static electricity.

The photo is low-res, his hands are out of focus as he is clapping with delight, it wouldn’t win any photography competitions, but I just love it!

The look of sheer delight on James face, his eyes looking straight at the camera sharing his excitement and the connection of the moment.

He is so blissfully happy as he played, as any child of six would be, his additional needs irrelevant for that moment as he plays and laughs.

We might have all sorts of reasons why a particular photo will be our favourite, but whatever your reason is, if you are willing, why not share it so that it can delight others too.

If you don’t want to share it, or can’t, then why not find it anyway and have a look at it yourself, remembering everything about that special moment and savouring the memories in your heart.

I hope James’ joyful smile will reach your heart, that the light in his eyes will bring light to you in this dark season, and that the delight he is experiencing will remind you of happy times that you’ve spent with your child, and will encourage you to look ahead to better days to come.

I can’t lift her forever

I won’t be able to lift her forever.

I won’t be able to lift her much longer. That hurts.

Both physically, and emotionally.

I realise there will be those parents out there who are still able to carry their 16 year old up the stairs, and to you I take my hat off! 

But that isn’t us.

Amy’s movement disorder is characterised by constant unpredictable and very strong movements.

Every transfer brings both danger and discomfort to both involved.

There is of course the added risk factor of the two feeding tubes that can’t wait to wrap themselves around any piece of furniture they can and cause emergency button changes.

It’s hard to explain really.

But having a non mobile child makes me want to be able to lift her forever.

I don’t want to rely on hoists.

The world doesn’t have enough hoists, and if I agree to hoist her from now on – it isolates us further from the outside world.

It’s a tough pill to swallow that she isn’t my baby anymore, she is a growing child.

She is only going to get bigger.

Holding her is a nice physical thing we can do.

With all of her harnesses and straps it’s hard to cuddle her when she’s in her chair.

I love the feeling of holding her close and carrying her; but it isn’t sustainable.

People gasp when I carry her – they can’t believe how she is almost as tall as me.

Their gasp is usually followed up by “oh my goodness, watch your back!”

Leaning over her bed to dress her each morning has me grunting and groaning like an angry walrus.

I especially struggle now to lift her from her mats on the floor and into her chair. 

From about the age of 9 months I’d say it has been an almost constant onslaught of new equipment arriving, being measured for equipment, equipment being adjusted and so on.

Initially this was incredibly overwhelming.

Where would we keep all of this stuff? Will it ever calm down? Will we ever not need all of this stuff? 

It is a huge learning curve.

I remember confiding in one of our specialists and saying “I really wish she could sit up unaided” and I think they misinterpreted me as their response was “oh don’t you worry, we’ll have her sitting!”

Naively I took this to mean that one day she would sit up unassisted and was thrilled.

I imagined our house without all of the seating, I pictured holding her without having to work with/fight against her stronge extension reflex and dystonic movements.

7 years on and the equipment is bigger than ever and continues to grow. 

Gone are the days we could just lift her into a bucket swing, or leave a pram in the car and just carry her (along with various medical equi[ment!).

I can’t believe I used to complain she was heavy back then!

Holding her now can mean a black eye, a nose bleed or a fat lip.

Changing her nappy can mean kicks to the face.

She is getting so much stronger as she gets bigger; her limbs hold more weight than ever before.

It takes time to adjust to how things are likely to look in years to come.

It’s hard to imagine that her next growth spurt will render me unable to perform any transfer without hoisting.

My problem with hoisting is this.

Amy is like any other child in that she never likes to be in the same spot for long.

If she were mobile I am confident that she would be in every room, on every piece of furniture 100s of times a day.

She relies on us to perform those transfers and help her navigate her way around the world. Hoisting takes time!!

Every transfer will need to be warranted and carefully considered.

Some days she goes in her chair and within a couple of minutes is crying and shouting because she wants to lay on her mats on the floor to then want to be sat on your knee on the sofa.

Our day is often made up of many transfers.

She has an expectation that if she wants to be elsewhere, then she should be, imminently.

It must be so frustrating relying on someone else to anticipate what you’ll want next and I want to be able to be there all the time and keep up with the demands.

I was once told she isn’t safe to hoist alone.

When Phil is at work I will have no choice but to do these transfers by myself.

We have had several different sling assessments now to try and minimise the risk of her throwing herself out of the sling or causing one of us injury.

It surprises me that a small person can cause so much destruction!

Unfortunately, she doesn’t have any awareness of danger.

Dressing her involves rescuing her several times from the edge of the bed and manoeuvring her to safety.

She cannot be left alone on her mats on the floor, nor can she be left unattended in her chair as she does things like rip hair out or cut her face and neck.

So I anticipate that when I do eventually bite the bullet and begin to hoist, I should probably get round to working on my fitness levels and improve my reflexes!

I’ve received several warnings from other parents and also our team that I need to be careful.

To protect my back. To hoist every time, not just sometimes. They’re right.

They’re the ones who have had the slipped discs, the back problems, the inability to care for their child whilst they recover from injury. 

I go to sleep many nights promising myself that tomorrow I will start hoisting her.

I also promise to eat better, drink more water, complain less and so on.

But it’s easier said than done in the cold light of day!

We are lucky enough to now have hoist tracking in two rooms in our house.

We have carers here that use it regularly. It requires two people really to do it – to control the hoist, and another to ensure Amy’s safety and prepare where she is being hoisted to.

Phil recently bought an inflatable bath.

We have a small wet room and miss baths dearly.

Yesterday Amy went in it for the first time. It was the longest she’s been calm and without music/iPads for a very long time.

She kept doing beaming smiles at us as if to say “this feels amazing, thank you”.

It was such a beautiful moment.

It then made me sad to realise how hard it had been to get her in and out of the bath and that this isn’t something we can feasibly do in years to come.

There is no prospect for hoist tracking in that room, and it’s too small for a portable hoist to fit in.

It’s bittersweet making these memories.

I sometimes wish we could just win the lottery and build a huge purpose built house with tracking and level access facilities in every room.

Because she isn’t going to change, but the environment around her needs to.

I’ll do it one day, I know I will.

I’ve been told that often parents like us often don’t start hoisting and continue to lift when they shouldn’t.

I know I’ll need to start breaking this habit to cut corners, as long term it won’t be good for any of us.

MAND Awareness Day

Every year on 23 February parents of children with this rare condition set about raising awareness about this relatively unknown genetic syndrome.

I happen to be one of them.

Isla was originally diagnosed with 2q23.1 Microdeletion Syndrome.

In Isla this causes autism, epilepsy, intellectual disability and other associated issues.

We are 12 years into our journey raising a child with this condition and 10 years from the realisation that something wasn’t right with our child who reached all her initial milestones. 

From the time Isla was diagnosed her condition has been renamed MAND by Geneticists.

This stands for MBD5-Associated Neurodevelopmental Disorder.

This encompasses not only microdeletions but also deletions, duplications or disruptions within the genetic region of 2q23.1

Isla’s tiny deletion is on the long arm of the second chromosome.

The deletion itself is small enough at 180kb to not necessarily be problematic.

It is because it also deletes part of the MBD5 gene that causes the problems. MBD5 is a gene which is haplosufficient.

In simple terms this means the remaining copy of the parental gene is not adequate to produce the needed gene product to preserve normal function. 

MAND parents find each other through a private Facebook group that was set up in 2011.

Even though our children are all unique they share similar characteristics.

Every Awareness Day we find many more families who find relief in finding support and knowing there are others out there sharing the same challenges, battles and heartbreak.

We also celebrate our wins and love for our children with others who understand.

Other goals for our Awareness Day are to educate others thereby increasing understanding.

This will hopefully lead to inclusivity and hopefully in time foster necessary medical research worldwide. 

Our Awareness Day is largely run online through our public Facebook page.

We ask that people dress in blue and upload a photo to show their support.

If you would like to help us you can visit


#bluefor2q and #mand 

Self care

When you have children your time to yourself is limited.

When you have a disabled child, you get almost no time to yourself.

Our evenings are taken up with seizures and settling Ethan.

We are lucky that Ethan goes to his Dads every other weekend which gives us 4 evenings to ourselves a month.

We try to have a date night on one of those nights because it is so important for us to spend quality time together un interrupted.

Me and my hubby are a great team but we need time to reconnect as people rather than just parents.

Over the last year I’ve had to learn different ways of self care to get myself through.

Steve and I will tag team through the week and take it in turns to get up and down.

In order to survive the last year we’ve had to take it in turns some evenings to have early nights.

When you think of self care you automatically think of baths and face masks. These are great but its also important to go a bit further and find techniques you can use to relax your mind as well.

So whilst I use these as mentioned below, I’ve also found other ways to really relax my mind.

On those early nights I’ve found that making my skin feel good has helped relax me more.

A face mask followed by some calming music and a magic mask called a space mask has helped me relax to sleep.

I highly recommend the space mask to relax tired eyes and relieve tension headaches.

I have also been doing a lot of mindfulness throughout the day.

Its really helped to calm me before the day and I’ve used the breathing techniques throughout the day to calm me when I’m feeling anxious or stressed.

I have found doing some colouring in the evenings has given me something to focus on rather than my thoughts going crazy in my head.

It’s perfect for me with having to get up to Ethan as I’m not constantly pausing a TV program!

Although we do still watch TV programs they just takes longer to watch with all the pausing!

The last thing that’s been helping to keep me feeling more myself has been some gorgeous roll on aromatherapy scents.

My best friend bought them for me and they help relax me during the day with the use of the different smells and herbs.

Its so important to look after your mind and I really have found these things have helped to relax me more and to allow me to look after myself ready to face day to day tasks with Ethan.

Normal need not apply

The big, whimsical sign in the window of a shop gloriously proclaimed that we should ‘embrace your journey’; coupled with a suitably serene and beautiful scene in greys and pale blues, it was one of those inspirational artworks folk seem so keen on these days.

Embrace your journey.

I’m sure the majority of parents with SN kiddos do indeed appear to do so.

After all, I’ve never encountered a love stronger than that which exists between SN families.

It’s a choice to keep loving one another through the ugliest and most appalling of experiences after all.

And we all laugh a lot too, often about our kids’ antics, the often hysterically funny mishaps or events that we live through (honestly, you wouldn’t believe us if we told you the half of it!)

Then there’s the usual family photos of us with our children – the bright smiles hiding the fear and heartbreak of knowing that such precious, calm and healthy times more often than not are the exception, not the rule.

Its hard to explain to someone who hasn’t lived it just how powerful a driving force this life is.

It forces you to find reserves of strength and resolve you didn’t know existed.

Having a child who relies on you to be their voice and advocate is both a privilege and an enormous responsibility.

Night after spent wide awake worrying over whether the right decision has been made, or whether you could’ve done more, done better.

Days spent juggling work, chasing appointments and equipment, filling in funding applications, liaising with schools/Councils/transport providers, all while trying to maintain a happy, regular family life for our children.

Exhausting? Yup. Worth every second to see our babies happy? Absolutely.

Special needs parents are warriors.

We take on far too much simply because we have to, not through choice.

For many it is more than the human spirit can survive; this isn’t a journey we can walk alone.

Yes, we embrace our journey, as do those who walk it alongside us whether they are fellow SN families, friends, relatives or professionals.

Its just that our journey often bears closer resemblance to Frodo and Sam’s journey across Mordor than Dorothy’s journey to Oz!