The Wonderful Benefits of Blending

From day 1 on tube feeding we knew we wanted to feed him a blended diet – real food, liquidised to go down his tube without blocking it.

However we had quite a battle initially persuading Sam’s clinical team to allow it.

Original guidelines stated only formula feed was suitable/acceptable for tube feeding – we argued, hard, that as his issues were not due to digestive malfunction, we should be allowed to give him the same food he’d had orally.

Despite initial resistance, the team soon came on board once they realised that we fully accepted the work involved.

We have never looked back!

In addition to the risk of blocking the tube, food safety is often cited as a reason why medical professionals are frequently reluctant to support a blended diet.

It’s more than just basic food hygiene, which as parents we already adhere to, but ensuring that feeds are cooked through thoroughly before being rapidly cooled and frozen within a very short time frame if they aren’t to be used immediately.

Once we signed various forms confirming that we accepted the risks (pretty much saying if the tube blocked or he became sick then it was our responsibility not the hospitals… fair enough), we were good to go.

Our dietician advised on a suitable blender to liquidise even the most tricky of foods – I give you the raspberry seed… perfectly sized by nature to block a PEG perfectly if not obliterated first – and off we went.

Although it is a lot more work than just making up a formula feed, the benefits of giving our boy real food are huge.

His reflux has improved, as has his digestive function (we reduced his Movicol from 4-6 sachets daily to 1-2).

We discovered certain foods worsened his seizures, so we just cut them out.

Despite the initial dire warnings about food hygiene and risk of infection, Sam has actually been healthier since starting blended feeds than he ever was on 100% formula… he just didn’t tolerate it.

And we haven’t had any feed-related blockages (just meds… gah!).

The food hygiene aspect can be quite intimidating initially but it really isn’t anything more than you would do anyway – making sure to store the food appropriately, hand washing and maintaining a clean kitchen all being the main areas to take care of.

We have a very supportive dietetics/gastro team so Sam’s meals are evaluated by his dietician periodically to ensure he’s getting the right stuff in the right amounts.

But for me the greatest benefit is seeing my child thriving, and being able to prepare his food like any mother.

It’s the little things like this that make such a difference to us special needs Mums.

After so much has been taken out of our hands it’s wonderful to be able to take back some of the tasks other parents take for granted.

It’s OK To Call in the Cavalry!

Physically, having a child with a disability, who needs a lot of extra support to do the everyday tasks we take for granted, is sometimes too much for one person’s body to handle.

Today, my body has decided that it can’t cope.

Today, my back is screaming at me to stop and lie down.

I know why.

We had a little fun on the trampoline yesterday. It was great!

Just because my son cannot stand or sit by himself, I didn’t see why he should have to miss out on bouncing with his sister and friend.

So I carried him on held him up and jumped and bounced around with him, seeing who could go the highest.

The smile on his face and on his sister’s too, was just wonderful. 

But painfully, for five minutes of not wanting him to ‘miss out’, I’ve caused a lot of ‘missing out’ for the rest of this week.

I have had to call in the Cavalry (AKA Nanny and Grandad) to take over.

Because I can’t do any lifting or transferring today. Not without a lot of pain and that’s something that I don’t want my kids to see. Or feel guilty about.

I have chronic back pain.

Not primarily from the inevitable lifting that comes with our lives, but from an old horse riding injury.

That injury has just never been given a chance to heal with the amount of lifting and twisting that I do. 

It’s one of the most frustrating things to either watch your child miss out or doing something that you know is going to make you pay later. 

How I wish I had never gone on that ride the day I hurt my back. If I could only have known how important the health of my spine would be.

Oh, hind-sight. I really hate you. 

It was the first time I had got back in the saddle after having my twins.

I remember being so excited just to be out of the house without an entire armoury of equipment and stuff that goes with twin parenting. 

They were just six months old at the time. I was looking forward to an hour child-free, to re-energise and get some fresh air.

The twins were very premature and this was the middle of a freezing winter, so we had been trapped indoors in the warm for months on end to avoid unnecessary illness (as their lungs were very underdeveloped).

Then my back popped whilst cantering and the agony struck.

I had no idea what a twin pregnancy and an emergency C-section had done to my core strength.

It couldn’t handle riding.

My body was no longer capable of what I used to put it through. It was no longer strong in that way. 

That day, I was trying to look after myself and it sadly back-fired. But you do have to look after number one.

As the primary care-giver, you need to understand how vital your role is.

And how irreplaceable you are to your tiny troop. 

It’s OK to call your parents and say, ‘It’s your turn today. Today I need to rest.’

And sometimes, as I have had to learn, it’s ok to say no to your child, even if it means they don’t get to do something they so desperately want to do. That’s very hard to do.

But if you don’t look out for yourself, that need for a rest will get bigger.

It won’t just be one day of recuperation. And then you will feel worse. More guilty. More worried about the ‘missing out’.

Then you may be at the point where you literally cannot do anything that your child needs you to do for them. The essentials like getting in and out of mobility equipment and wheelchairs, or bed, or the car. Taking them to the toilet. Changing a nappy or pad. 

So today. In between getting a few essentials done (there is quite a lot I can achieve on a laptop whilst reclining with a hot water bottle behind my back) I will rest my back.

And I will do my best to not feel guilty about it.

The kids are almost certainly having more fun with the Cavalry anyway!

Learning the Ukulele

Now, most of you readers don’t know me so I should probably explain the importance of that sentence.

And those of you that do know me – stop laughing!

I don’t have a musical bone in my body.

The extent of my experience with music was three years of playing the flute in the middle school band.

When I got to high school, I begged to quit, and my parents – realizing that I was musically talentless and that allowing me to quit would free them from the relentless high pitched squawking they had to endure when I practiced – agreed.

And so I went from high school to university to my working adult life, focusing on the things I’m good at – writing, running, researching, travelling.

That isn’t to say that my life was absent of music. I love listening to music, sometimes even singing, dancing or waving my arms like a conductor – usually in the privacy of my own home or a large group of people (think of a crowded dance floor or concert).

But while I appreciated music, I focused mainly on activities in which I was confident of my skills. My comfort zone.

My comfort zone not only includes doing things that I’m confident I can do well, but also avoiding things where I might look foolish, incompetent or weird.

After all, no one wants to be stared at, laughed at or judged by others, right?

When my first daughter was born, it did challenge my comfort zone – but not that much, since she was a happy and easy-going and charmed everyone she met.

And then Miss Z arrived and everything changed. My comfort zone was a thing of the past.

I had always claimed that I was no good with medical things – blood made me queasy, I had to look away from needles or injections (even on TV), and I never knew what to do in an emergency situation.

But suddenly, I had a medically fragile child with uncontrolled seizures and “no good with medical things” was no longer an option.

It isn’t something I would have chosen, but I have learned to be good with “medical things”.

My proudest moment was when an emergency services operator asked me if I was a doctor when I calmly recited all the vital information on Miss Z when calling for an ambulance.

And as time has gone on, I’ve had to learn to deal with being stared at and judged in public, too.

Being stretchered out of a large grocery store with Miss Z in my arms was probably the crowning moment of my “everyone really is staring at you” fear.

But to be honest, I wasn’t thinking about who was staring at me because I was focused on my daughter who was having a prolonged seizure.

Less dramatically, Miss Z has an uncanny ability to cough, gag, retch and vomit at the least convenient times – but I’ve learned to deal with that too, including giving any gawking or concerned passerby a pleasant smile and saying “she’s fine, its all under control”.

The strange part is, by pushing me out of my comfort zone in this way, Miss Z has also made me more willing to try new things that might not fall within my conventional idea of what I’m good at.

It started with knitting. I’m not artistic or crafty. But last year, Miss Z spent a lot of time in hospital and I needed something to do while I sat beside her bed, day after day.

Honestly, there are only so many hours in the day you play on your phone.

Someone suggested knitting. So, I went out and bought some yarn and needles and watched a few YouTube how-to videos.

I wasn’t particularly good at it, but it filled that gap in the hospital and was an excellent conversation starter with other parents, nurses and doctors.

For Christmas, my family all received dodgy homemade knitted scarves – which they were all very gracious about – and I was pretty proud of my achievement. 

It was during another visit to the hospital that I fell in love with the ukulele.

There were two hospital clowns visiting kids and they suddenly appeared at Miss Z’s bedside.

I was skeptical and about to send them away – Miss Z doesn’t interact well with strangers (let alone strangers with multi-coloured hair and red noses) and it always gets a bit awkward when entertainers expect her to respond and she doesn’t…

But then one of the clowns pulled out a ukulele and started singing a lullaby while the other blew bubbles around the bed. Miss Z immediately relaxed and smiled. 

It was one of those beautiful moments that I will remember for the rest of my life.

And when it was over I wanted to hug both clowns for giving us such a magical moment.

Since then, I’ve wanted to learn to play the ukulele. After all, if I can learn to knit from YouTube, why can’t I learn the ukulele?

My wedding anniversary is coming up and I (accidentally) discovered that my husband has bought me a ukulele as a gift.

Not a traditional gift – and I suspect he will regret it when he has to listen to me try to play – but exciting!

If I can learn just one song, it will be a huge accomplishment.

And that is something I never would have tried if it hadn’t been for Miss Z.

T is for Therapy

For the past two days I’ve driven my 6 year old daughter to London two hours each way on a journey that should take half that time.

London traffic it would seem is a law unto itself and time takes twice as long.

They really should have invented road lanes just for transit vans – not that they’d stay in them as they seem to enjoy cutting up the rest of the traffic and find indicators optional.

To say I arrive at our destination stressed is an understatement.

The calmest voice in the car is that of the Satnav and even she sounds pretty bored by now.

Lucy is a good traveller but two hours strapped into a car seat is no entertainment and not great for her posture either.

Despite this, I tell myself that it’s worth the effort. We are about to try a new therapy, a very exclusive one only available in California, London and wait for it … Scarborough!

Now you don’t hear those three locations in the same sentence often do you?!

The therapy is called the Anat Baniel Method, a movement system that evolved from Fieldenkrais therapy and is different to anything else we have tried.

And boy have we tried a lot of different things!

In addition to the standard NHS approved physiotherapy, speech and language therapy and occupational therapy, we have tried in no particular order: Cranio Sacral therapy, Osteopathy, Fieldenkrais, Brushing, Hydrotherapy and Conductive Education.

We have also been going to Brainwave in Essex for the past three and a half years and take Lucy horse riding regularly.

Our house is fit to burst with equipment, from bouncing gym balls of all sizes, scooter/ crawler aids and walkers, benches, conductive education chairs… you name it we probably have it.

No one could say we haven’t tried, but then who am I kidding no one is going to stand there and say that, just as no one is likely to give us a medal for trying either.

That’s because she’s our child, our responsibility and we can stop when we or she wants to, only it’s never that simple is it?

Whilst there is just one more therapy out there suggesting it might work, it’s too tempting to go that extra mile to try it.

And then there’s the cost. These ‘alternative’ therapies don’t come cheap and very few are funded on the NHS.

It’s easy to get sucked into a form of self blackmail, if I just pay for X amount of sessions Lucy might do A, B or C as a consequence.

Our main concern is walking – but I know plenty of other families for whom talking, sitting or eating is their goal or tackling specific behavioural issues.

I know I should be grateful that I have therapy options available to us, the time to be able to take Lucy to them and to some extent the income to make them possible.

For now our two days with the new therapy have worked well, we are still in that early flush of hope stage like in a new romance.

Here’s hoping our dates continue.

Operation Cinema

I’d considered taking Miss Z to the movies for a while, but never really had the courage.

I just wasn’t sure how she’d react.

Initially, I thought of taking her to one of those “mums and bubs” showings, but they’re only on weekday mornings, so clashed with Miss Z’s school.

I researched the special “autism friendly” shows but there weren’t any near us, and I wondered if the potential noise from the audience might actually upset her more.

What spurred me to action was that Miss Z went on a school excursion to a children’s theatre performance and loved it.

So, I figured if she enjoyed that, she might just enjoy the cinema.

Still, our trip to the cinema wasn’t exactly spur of the moment.

More, it was planned with military precision.

I chose to take her to “Finding Dory” not because of the brilliant message of inclusion, but because of the bright, contrasting colours, which I thought would help Miss Z, who has a visual impairment, follow the story.

Miss Z’s sister was keen to come with us, which was great because I really wanted this to be a fun social outing for both girls.

After all, going to the movies could potentially be something they can share for years to come.

But at eight years old, I wasn’t confident that her sister was old enough to be left alone in a cinema if I had to beat a hasty retreat with a crying Miss Z.

So, we recruited one of her friends and her friend’s mum – people who have known Miss Z for a long time and who understood what we were trying to achieve – to come with us.

That way, if I was forced to retreat with Miss Z, her sister would be happy to stay and watch the rest of the film with her friend.

I studied the cinema timetables.

We were going over the school holidays. I rejected the idea of going on the first week of the holidays, thinking the cinema might be busier that week, and settled on the second.

I chose a Tuesday morning (which seemed like a day of the week that wouldn’t be busy) and deliberated over the timing, finally settling on a 10.30am showing – not so early that Miss Z would be grumpy getting up, but not so late that she’d be starting to fade.

We also watched “Finding Nemo” at home – both so Miss Z was familiar with the characters and to make sure that she was actually interested in stories about plucky fish.

Finally, the planning was complete and all that was left was actually doing it.

Packing for the cinema was a bit like packing for an arctic expedition.  I had something packed for every contingency: sick bags, sensory toys, warm clothes, muslins, emergency medications, we had it all.

In the end, it was a success.

Not a huge success – an inch stone rather than a milestone – but a success nonetheless.

Miss Z enjoyed the movie. She decided before the trailers had finished that she was going to sit on my lap, not her wheelchair.

The film was a bit of a sensory overload at times, but she coped by hiding her head on my shoulder when it became too much.

She gave the seat in front of us a few kicks, but that was OK because our strategically placed friends were sitting there.

I could tell she was getting a bit impatient towards the end of the film, but she made it through to the credits.

It might seem like a whole lot of preparation and worry for something that is relatively basic – going to a kids’ movie at the cinema.

After all, Miss Z didn’t even rank in the top five misbehaving kids during the movie session when compared to the toddlers sprinting up and down the aisles and the crying baby.

But for me, our trip to the cinema was HUGE.

It has given Miss Z and her sister something fun they can do together.

It means that Miss Z can be included on outings with her sister and her sister’s friends.

It is the biggest step we have made yet on inclusion.

And that makes all the planning and preparation worth it.


Image Copyright: Sarunyu L
Image Editorial Credit: Sarunyu L /

More, “Me Time.”

After facing some health issues and surgery last year, I’ve tried to make a more conscious effort to put myself first once in a while.

I thought it would be fun to share a few of the things I’ve been doing lately to de-stress and relax.


A long soak in a hot bath is a classic way to unwind at the end of a long day. I’ve been trying to take the time to do this more frequently, and it’s amazing how a tub of hot water can soothe some of the day’s stress away. 

Must haves for a relaxing bath include lavender bubble bath, candles, and dark chocolate.

Do yourself a favor and find this chocolate. It’s amazing.

Shop Alter Eco Chocolate Bar

This vanilla bean soy candle is in my house and nearly gone.     

Shop vanilla bean soy candle

And this bubble bath has the greatest relaxing, calming scent.  

Shop Dr Teal’s Lavendar Bubble Bath


I have been taking a class at our local YMCA for a few months called BodyFlow. It includes a combination of yoga, tai chi, and pilates moves.

I am not the type of person who needs to take a five-mile run to feel as though my body got some exercise.

This class makes me feel composed and strengthened. Finding some type of physical exercise that makes you feel strong and de-stressed is key in keeping yourself healthy both physically and mentally.

If mama is stressed nobody is at their best.  (That’s a saying, right?)

Fun with the children

Our daughter and I have been enjoying a mommy-and-me style yoga class the last four weeks.

It is geared toward 3-5 year-olds and has been a great way to share an activity I enjoy doing with our daughter. We go for half an hour on Wednesday mornings and just have fun.

I have learned, and am still learning, that having a child with special needs takes up a lot of time, and it can be difficult to prioritize time with your other children. My daughter needs to feel like her wants and needs are the most important thing sometimes too, so this class has been a great bonding experience and opportunity to have some time together.

Girls’ Night (recipe)

I am hosting a girls’ movie night this weekend, which is one thing I love to do.  Having a few girlfriends over to enjoy drinks, snacks, and a chick flick is an enjoyable way to unwind at the end of the week.

A friend of mine shared this recipe with me, and I assured her it would be on the menu for movie night.

S’MORES NACHOS RECIPE Major yum, am I right?!

Favorite Things


So we haven’t actually used this item yet, but our son is receiving it as a birthday gift this weekend.

This handy gadget is a wearable wireless thermometer.

It is worn under the arm and can monitor your child’s temperature for a 24 hour time period.

You use your smart phone or iPad to monitor the child’s temperature.

It will alert you if the child’s temperature is higher than normal and can be tracked continuously.

Our son doesn’t love having his temp taken under his arm, and is unable to hold a thermometer under his tongue, so this device sounded like an excellent alternative to try.

I love the fact that a temperature can be taken without having to wake the child up overnight.

Ipad holder

We have been using this product for about four months.

Our son spends a lot of time in a hospital bed in his room, so I was searching for a device to hold the iPad at his bed so he could watch movies.

This product is very adjustable via the bendable arm, and will hold phones and tablets.

It could also be attached to a wheelchair tray, tabletop, car seat, Firefly GoTo Seat base, you name it.

It would be quite useful for playing games or using apps when the child is not able to hold the tablet or phone themselves.

G-tube Covers

We purchased some g-tube covers for our son for his birthday.

Thus far, we had just been using split gauze to protect his little belly from any leaking that might occur from his GJ tube.

A friend told me about the covers, so I looked into them online.

There is an overabundance of places to purchase them from, but I selected an etsy shop called Swoonbabyhandmade.

She sells reasonably priced covers in adorable prints.

I ordered a set of assorted boy g-tube covers and specified the color scheme I was hoping to receive.

She sent covers in the exact colors I had asked for and they seem to be very well made.

I believe the covers are better than just using gauze because they have snaps to keep them secure!

We find random pieces of the gauze all over the place because they fall off.

Boredom Is Good

Now that she is five, I’ve noticed that things are subtly starting to change.

She seems to find doing the same thing every day just a little bit… boring.

My child is bored!

I can’t even begin to express how excited I am about this development.

She is bored! Bored! This is the best thing ever!

I give her school a lot of credit for this.

This year she started attending school five days a week, including taking the bus to and from school.

It was a huge change – one I wasn’t sure she would cope with – but she settled into her new routine well and really enjoys her teachers, her classmates, and all the activities and different challenges that school presents.

Of course, she’s still Miss Z, so she has her grumpy moments, strongly objects to getting up early to get ready for school, and there are those days where she refuses to cooperate – so she hasn’t undergone a complete transformation!

With school providing so much additional stimulation, the school holidays are now a greater challenge. Before, she was happy to have her sister (and often several of her sister’s friend) home and rampaging through the house.

But now that doesn’t seem to be enough for her.

During the last school holidays, Miss Z’s sister did a theatre workshop in the city centre. In theory, it would work well as I only needed to drop her in the morning, and her father would collect her and bring her home in the evening.

However, I was worried about getting her to the workshop in the morning because I also had Miss Z with me. Really worried.

How would we get there? What if the building where the workshop was held wasn’t accessible?

What if I had to go up a flight of stairs to sign her sister in?

What if she couldn’t cope with the trip?

I’m a worrier to begin with, and heading off into the unknown always stresses me out.

The night before, I slept badly I was so worried about everything that could go wrong.

In the end (thanks to the extortionate cost of parking) we took the bus into the city. And it was the best decision ever.

Miss Z loved riding the bus. She’s always loved movement and the bus rocked and bounced her in her special needs stroller.

The workshop started late enough that we were able to miss morning rush hour, so people on the bus were kind and helpful and the bus drivers all adored and admired Miss Z, which made her happy as she enjoys adding to her minions.

After dropping her sister at the theatre, Miss Z and I would take a brief walk around the city (usually a route that took us past a coffee shop) and then hopped back on the bus to go home.

Taking the bus every morning to drop off your sister and caffeinate your mother may not seem like the best entertainment for a five-year-old, but it made Miss Z happy.

She was all smiles and enthusiasm when we got home.

After all, she’d had a bit of fresh air, some adoration from the bus driver and fellow passengers and a change of scenery, and was now safely home for her predictable daily routine.

And I was all smiles because she had just enjoyed an outing – a new development!

The success on the bus has also encouraged me to try more outings over the school holidays and to plan more for upcoming holidays.

Having a bored child has opened up our world.

R is for Relatives

Relatives can be great for special needs families, the safety nets that stop us from falling through into a dark space.

They can provide the respite and practical help that social services may be stretched to offer.

They can become a team of advocates around your child and a barrier against the effects of the, ‘system’.

In short they can be amazing and I have many friends with special needs children who are very lucky to have what I consider a big, happy, supportive family full of relatives that step up to the plate.

Then there are those of us who don’t have that. I’m not jealous, but things are a little tougher that’s all.

We’ve all heard the saying, “You can choose your friends but not your relatives,” which is true but, so too, is the opposite, “You can lose your friends but not your relatives.”

I’ve had occasion to walk away from a toxic friend or two who has perhaps said one too many comments that are upsetting or belittling.

Whilst I’m not saying it’s acceptable for a relative to behave like this, it is usually more complicated to deal with.

Un-following them on social media, ignoring texts and omitting them from the Christmas card list is much less easy and far too subtle for family.

Plus the fallout, the collateral damage can be huge.

If you write off a former friend, you may have shared friends in your network to ‘manage’ but ditching a relative is much more complex and can have a domino effect on the whole family.

Family social gatherings, anniversaries, birthdays etc all throw up difficult choices.

To go and face them or decline and in effect write off the rest of the family too.

A couple of years ago I had a humungous argument with my Dad after a stressful week of him and my Stepmother visiting.

They live in another country and make an annual trip to visit us.

It doesn’t reveal the complex realities of living day to day with a severely disabled child.

I understand now that this makes it harder for them to empathise as they are simply clueless to the strain of everyday life.

Throw in my acting as hostess for a week and fireworks were bound to ignite.

In the end, I had bitten my lip so many times to their unthinking comments and questions that my mouth looked like Mick Jagger’s.

Just how crass do you have to be to:

a) Talk about a child as if they are not in the room, and

b) Ask stupid offensive questions about them?

I won’t go into specifics but it brought out the mamma bear in me defending her cub.

I felt vulnerable, angry, disappointed, betrayed and ashamed.

All very hard feelings to deal with whilst also caring for a special needs child.

It was my Mum in the end, the one person who I thought would welcome my estrangement from my Dad, who initiated a ‘truce’.

Like a referee in the boxing ring, she bravely stood between the two people she knows best in the world and putting her own feelings aside healed old wounds and new.

She realised that to maintain a relationship with your family when possible is important.

Two years on and he is learning to be more sympathetic and empathetic to my life and I have been there to listen and support him through some serious health scares.

It’s not perfect our family. None of us are particularly close, there are no family members who offer to care for Lucy and give us a break.

No one other than my husband and I have ever gone to one of her medical appointments.

We are scattered geographically, so we are probably more emotionally distant than other families are with each other.

However they are our relatives, we are bound to each other in ways that are more complex than friendships.

If you can keep yours, even if you have to put up with them, I say it’s worth it in the long run.