“When will the twins go to school here mum?” A lump in my throat forms and my eyes start to well. I knew this question would arise one day out of my five-year-old’s mouth. I just wasn’t prepared for it on a Tuesday morning feeling a bit sleep deprived and thinking of one million other things. I hadn’t really prepared for the scenario.

“I don’t know they ever will.” My voice broke at the end of the sentence, choking back the emotion flooding inside me.

“But why not mum?” Of course, that would not settle the curiosity of a bright young girl.

“I just think there are better schools more suited to your sisters’ needs.” Naively I thought that would sort this conundrum that’s unfolding.

Grace, desperate to go to the same school as her younger twin sisters said “Well, I can just move with them?”

I hurry her into the school drop off, “lets chat about this later yeah? Have a good day!”.

As I get back into the car and drive off, I can feel my tears rolling down my face. I wish they all could go to the same school; I wish the same education for Grace would suit her sisters. Being objective about the children you have in front of you today to the children we dreamed of in pregnancy is hard but necessary for everyone to get their needs best met.

I forgot to dream about the scenario both my kids used mobility aids, the dystonia, epilepsy, medications, syringes and care/support plans that dominate our lives. They weren’t featured in my dreams and I am having to factor in now every time I leave the house with the girls.

We have been to visit out local state funded special schools that are best equipped to meet the girls’ needs and both are fabulous; peers are like our girls, teachers that aren’t phased by any medical jargon, equipment strewn down the corridors that look very familiar to the ones in my living room. Just one cravat – both schools are full and oversubscribed, they have wait lists and are both about a 2 hour round trip to get to the school gates in the traffic.

After months of liaising with our local council about our wishes, how to meet the girls’ needs from a health and education perspective, the council’s current offering, we have all agreed to an EOTAS package

This acronym stands for Education Other Than at School.

For some children this means going to an alternative provision provider, others can have teaching assistants come to deliver preset work by a teacher to support the child’s learning. In our case we have converted a classroom on site that is a room full of toys to enhance the children’s development.

We employ the teaching assistants that are trained and leave them to deliver a sensory led curriculum that’s overseen by a teacher on a monthly check in. They go off on educational trips that tie in with what they are learning for this term like a trip to the zoo & aquarium. The girls’ physical education means heading to hydrotherapy and riding for the disabled. By the time they see peers at the weekly social group they are in education 5 half days a week.

In the end, it may not have been the school set up I dreamed of when I first held my twins in my arms. It may not have been the path I had imagined for Grace and her sisters. But today, as I hold the keys to their unique educational journey, I’m filled with hope and gratitude.

Our girls are thriving in an environment tailored to their needs, Grace can join her sisters on weekends at the classroom if she wishes, bridging the gap between the educational worlds they navigate. It’s not the journey we planned, but it’s one filled with love, resilience, and the promise of a bright future.

Raising a medically complex child is an extraordinary challenge for anyone. Finding balance between caregiving working alongside your personal and working life can often seem like a changing enigma.

However, the last four years I have tried to get my own balance right caring for my own two complex girls Sienna and Scarlett. Sometimes the balance tips in the wrong direction. I am learning this can’t always be avoided, life can throw us curve balls. 

In this blog post, here are five effective ways I have used to restore some balance and order.

Work arrangements

I have stepped back from my customer facing job role to work more flexibly from home or sometimes alongside a hospital bed. Reducing my hours makes it easier to accommodate medical appointments and care needs.

Most bosses have empathy towards family health situations and being honest and asking for adjustments that enable you to still work in some way is often better than parting ways permanently. Covid taught us many roles can be done from home and in flexible arrangements.

Find your tribe.

Remember, asking for help is a sign of strength, not weakness. As soon as I stopped proclaiming I was fine and started asking friends and family for a little support, help came pouring in (not necessarily in hours of childcare on the ground).

I have got a handful of friends over the last few years that are able to hear out any situation and offer useful practical tips. Equally I am happy to give back to them my own knowledge on a matter. Family even offering to grab the odd prescriptions can make a huge difference in a tight schedule someday!

Managing the medical appointments

Mastering time management is crucial when juggling work and caregiving. Ask if the outpatient appointment can be moved to a day you didn’t have plans on? Ask if this can be a telephone appointment? Nothing to say and a routine appointment, can it be postponed for 6 weeks?

We make some protected time in the calendar that only urgent or emergency appointments can take place; Summer holidays, birthdays and Christmas events are areas I try to avoid after spending the girls’ 2^nd birthday at a 2-hour physio appointment highlighting all the things they couldn’t do. They are only kids once.

Accept Respite

Many communities offer some form of respite care relevant to the child’s age and needs, some in the day or even overnight to give carers a break. TAKE THE BREAK, GET THE SLEEP! For us in our area this looks like hospice respite stays a couple times a year.

We also have some support in the home and in community for days out. Since having a couple nights sleep a week it’s enabled me to face the week ahead and see some light in the cracks. Again, it’s not weakness taking the help, we can’t as carers pour from an empty cup.

Self-Care Matters

Perhaps the most critical aspect of maintaining a healthy work-life balance is prioritizing self-care. Often tricky to plan in regularly or particularly if a child’s health status isn’t as stable, it may have to go bottom of the priority list for a minute.

As soon as life allows again planning in the odd date night, going for a walk, or doing a hobby you enjoy can really help. When life doesn’t allow quite as much time to go out and physically take time away from your caring role, meditating, journaling and practising gratitude may help. It could be as simple as reading a prompt sheet and thinking back to your day and every tiny thing you have accomplished.

This can massively help with creating a positive mind set. Tiny habits add up consistently to some significant changes. Looking after yourself not only improves your mindset, but it also often improves your wider attitudes towards work and how you view your role as a parent carer.

I wish I could practise what I preach, sometimes the balance is all out. I can work and barely find time for myself, or the girls get unwell and I miss a school event that I desperately wanted to go watch but know my caring role takes precedence. When the dust settles remembering I count too, as does all our family and working ultimately helps pay for our daily life can sometimes put my caring role back into perspective.

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!

We have learnt so much about early intervention in the last 20 months.

I could quite literally write a directory book on what is on offer, how many different therapies all can play a part in a child’s rehabilitation.

I have noticed even between two girls the differences, what makes them motivated whilst the other one screams the place down in protest, we have also found picking our time of day is crucial.

Early intervention is ideal for our girls because it takes advantage of the extremely adaptive features of the developing brain better known as the process of neuroplasticity, making new neural pathways around areas of damage through repetition to produce a muscle memory of correct patterning to improve motor function.

The earlier to start the better, the biggest gain in early intervention is within the first 5 years of life but it can continue well into retirement, play golf and you will soon understand muscle memory.

 A big part of early intervention being effective is consistency.

We are asking our girls to learn a new neural pathway and to keep reminding them until that newly carved path is well run in and here to stay.

The other things we are up against is the easier routes that may produce a less favourable movement pattern can be easier for them to do and a hard habit to break, such as over extension and increased tone in limbs to give a false sense of stability.

Another hurdle we have come up against and learnt very quickly is that these kids just keep growing and growing, from tiny 3lb mites to 24lb chunky babes from 42cm to 92cm, they can’t stop.

Thus these tiny muscles that are learning to work hand in hand are also having to strengthen and compensate that extensive growth to carry a very heavy head full of knowledge!

Whatever type of therapy, physio, hydro, OT, SALT head control is absolutely vital for success.

For physio, head control is vital when attempting to roll, sit, crawling, to stand or walk.

Jerky uncontrolled movements of the head can often trigger the arms and legs to reflex or increase in tone to try and gain control.

In hydrotherapy weak control can lead to a dip of the head to look more like duck diving than swimming.

An OTs dream for fine motor skills to progress is a well-supported head either independently or using specialist seating, SALT also need a decent level of head control or supports in assisted seating as oral skills to eat or speak also require control of the head.

So if there is only one thing you can focus on at the start of your journey its head control from tummy time or any exercises that make your little one work those head and neck muscles little and often.

It really is key to move forward to bigger things, even just 20 minutes a day focused on improving strength and control of the head can make huge improvement!

Why is it in the evening when all the kids are tucked up fast asleep we end up missing them a little?

No matter how challenging the day has been, even if everything went wrong that could go wrong, we still want a night-time cuddle?

That unconditional love is what keeps us going.

That first summer we had all 3 girls it was total chaos.

Sleep was non-existent, I picked up the wrong baby out the cot at night on more than one occasion, placing back a sleeping baby whilst the other is still lying there crying is on a par with handling an unexploded hand grenade.

One sudden move and its game over they are both up screaming.

Made the odd rookie error of walking down the hallway with a screaming baby at 1am and before you know it I also had a 2 year old up on the baby monitor to join the party.

I actually remember like it was last week.

Sitting there with both baby girls trying to feed and wind whilst reading a book to Grace at 3 in the morning desperately convincing her it is not morning time yet.

Praying all of them might go back to sleep for just a few more hours.

The days all rolled into one and the weeks went by.

Before we knew it Christmas came along, both of the twins slept at the same time and it was the first hot lunch I had eaten since they came home.

It was surreal not having to bounce a crying baby or rock a double pram with one hand whilst shovelling food in like it was the last supper with the other.

Somehow in a blink of an eye we were in national lockdown living in a pandemic.

Celebrating the first birthday for both girls proudly sat in there adaptive seating, I could of pinched myself at how far we come.

Then time flown being at home and ended up with a 4 year old sassy pre-schooler who knows her numbers, letters, started ballet and horse riding.

We have applied for a reception place at school, even looked at nurseries to take the twins for a couple sessions a week to get used to socialising.

The baby years are a thing of the past, I am starting to strangely miss the steriliser, the middle of the night parties.

Well no, that’s a lie I am still awake multiple times a night it is like spinning a roulette wheel, but they all sleep through the others crying it is like white noise to them now!

Someone told me when I went back to work “enjoy it the days are long but the years are short” I smiled sweetly blissfully unaware how true it is.

My eyes may still have bags that are beyond repair but my heart is full and I look back at the thousands of pictures and realise everyday was an honour to be present no matter how chaotic it was.

Why do we fear the unknown?

The wait and see period of a diagnosis is the most unbelievably heart wrenching part, the unknown of what is to come?

How bumpy the road ahead is? Will my child walk, talk, eat, go to university or drive a car?

I am ashamed to admit how many times I thought someone might know these answers at such a young and tender age, equally so when professionals say “we don’t think they will do xyz” I remind myself they don’t honestly know at 1 years old.

The textbook says this, but every now and then there is the kid that beats the textbook, everyone naively thinking my child will break the mould!

This year we have come to accept living with the unknown, it is a little bit clearer, still hazy in places of what the future holds but no were near as scary.

I can now live with the unknown demon in the back occasionally rearing his big ugly head but all the big fat accomplishments and unconditional love take up all the room on the stage right now.

Really though, why do we as humans fear the unknown when it comes to health and medical diagnosis?

We wouldn’t pick up a family dog and ask will it be a crufts winner? Or will it win the village show? When will it learn to sit? Will it be good at riding in the car? How will it be around other dogs?

That would be absurd to discuss all this or thinking round and round in our heads, but we do ask a professional like they are able to tell us about our child’s future.

Milestones are not a marker for success.

Society might place great weight behind them, but the sheer beauty of a smile, a giggle, a decent eye gaze to communicate is an amazing success.

I have got better at fending off well-meaning questions “are they walking yet?” “I bet they are crawling everywhere?” with an excited reply “yeah they are doing great, they like watching Bing and love Peppa, still not keen on pigeons but we can avoid them accept at the duck pond” and 9 times out of 10 the conversation changes, to our next adventure when covid19 clears off…. Visiting Peppa pig world!

Christmas is a funny old time really.

There is this innate habit we find ourselves looking back on the year or reflecting back to past Christmas times.

A year ago we were petrified of the future, 2 years ago I was 12 weeks pregnant with twins, 5 years ago we had no kids, 10 years ago we were young and carefree at the pub with our mates and couldn’t of ever imagined what a beautiful life we would share together.

For many parents of disabled children it can be a very emotional time at Christmas.

Looking back on another year of hospital visits, services provided to us, equipment, medicine changes, diagnosis, but also be a very uplifting time of reflection, new milestones, new found confidence of parenting, strengths found within ourselves that we never knew were there and friendships that have blossomed out of difficult times!

This year has presented us with its own set of challenges.

The dreaded covid-19 sent us all into hiding, with many of us still looking out of our periscope lying low on the radar whilst the rest of society return to normal whatever that means these days.

The freezing of the lifelines of care and support provided by health and social care really tested our community but I think we have shown ourselves what we are capable of and how much our kids really thrive on our first class input.

Most services have rightfully started to resume and everyone has welcomed them back, lagged in PPE none the less.

I am sure no doubt we will laugh about this in 10 years’ time at Christmas.

I have spent the evening looking back at photos from a year ago pinching myself at how far we have come.

How much more we know about early intervention, how our girls have shown so much resilience and how we naively knew nothing about the pandemic that was going to show up in 2020 and turn our lives upside down.

Tele-therapy has exploded and at the touch of the button I can get world class input from another continent on a different time zone.

Of course there has been some hard times and frank conversations, but we can’t get hung up on the low points it only takes away from the magic achievements.

I do wish however Santa had left me a pile of shares in zoom under the tree last year or a pile of face masks and hand sanitizer.

I can’t imagine what next Christmas will look like; I hope our house is still full of love and laughter, with an even bigger tree and some tyrant toddlers in standers and adapted seats ripping the tree baubles off and eating chocolate until we all feel sick.

Hopefully with coronavirus just another distant memory.

The first hands on therapy we got to learn to use on our girls was massage and it is so important even today we use the same techniques and stretches.

Massage for all neonatal babies is incredibly important for both baby and parents.

It enables them to bond after the traumatic experience of those early days, it also awakens the sensory systems and improves circulation.

For kids with neurological conditions it’s a holistic addition to traditional therapy approaches.

It reduces pain, reduces muscle tightness, combining massage strokes with stretching can increase flexibility and it’s a lovely activities to promote body awareness.

To get started use any child friendly moisturiser or any simple unperfumed vegetable, sunflower or coconut oil.

Just enjoy simple strokes at nappy changes as new-born’s can become cold and uncertain about the big wide world.

It is about building trust just using the hands to run from the toes right up there legs using gentle pressure up and around the hip joints.

Repeating this movement over both legs and moving around the legs to lift them up and encouraging the hands to the feet.

Even better crossing the midline, looking to touch the right hand to the left foot vice versa.

If their flexibility is difficult due to increase tone or spasticity, just stretch them as best as you can and ask for guidance off a physiotherapist how best to stretch them and help increase flexibility.

To help them stretch those tight muscles effectively warm the muscles up in the areas using short strokes up and down the area, to ease the muscle fibre before holding a prolonged stretch or after a busy physio session, wind down with a short massage session to relax them.

Another enjoyable massage technique to improve digestion or relieve constipation for babies or young infants is a sweeping circular movement around the tummy button in a clockwise motion.

For babies the index and middle fingertips using light pressure, young infants you can use all your fingertips whilst finishing the movement around the circle, heading towards the inside of the left hip bone.

There are many other techniques covering the arms, chest, head and neck that can help stretch the upper limbs and desensitise areas, help kids trust touch and enjoy that time spent together.

For us we like to use massage at the end of the day after a bath, when everyone is warm and cosy in there towel, using some night lights and relaxing music, a perfect end to a busy day for any age!

You may well have heard of the term “Early intervention” when going to various hospital appointments.

It’s a term I knew little about until the twins were born in April 2019 and quite frankly we are in the thick of it right now, with input coming from a multi-disciplinary team of professionals to help our children achieve their full potential.

This doesn’t mean it will cure them or “catch up” but be the best they can be and like any child will have stronger and weaker skills that may change in time with excessive input.

What I have learnt is that many of the things that were seen as impossible a year ago are now quite a possibility in time and as a parent adjusting to two children with development delays and complex movements, there are many more things to achieve than typical milestones of talking and walking.

There are all these tiny inchstones that are just as big an achievement.

A decent eye gaze that’s reliable, a few Makaton signs to communicate choices can make a massive difference in everyday life, from there we can add on more as time goes on!

The first few years are imperative to achieving the best outcomes.

Any child changes considerably in the first few years.

Children with brain injuries caused at birth get better outcomes than previous generations before as we as a community have realised leaving no stone unturned and supporting each area of development can wipe millions off a lifetime care bill and rewrite the text book of prognosis.

Many children who start early intervention programmes at home and nursery in the first year of life with appropriate postural support can rewrite the expectations of where they are on the gross motor function system.

Between ages 2 and 4 over half of these kids get reclassified at a more mobile level.

So when shall we start? From the get go!

There is no sit and wait, start helping your child understand there body and refine their movements, help facilitate weight shifting, strengthening, weight bearing, fine motor movements, talking, social interactions, the list is endless!

No one will wish they done less therapy if there kids are running around and babbling, but doing nothing you will always wonder what could have been.