Why special needs families really need TARDIS technology

Ah, the summer holidays.

While having time with my boy is fabulous, we tend to experience something of a space issue.

Come the school holidays we lose access to our front door as the hall is FILLED with equipment. Sam’s standing frame comes home so he can use it over the summer, and it is ENORMOUS.

His positional support chair is also home, and is also huge.

He may only be 8 but the wheel bases on these items alone are significant.

Equipment aside, we also have the regular deliveries… ladies and gentlemen, I give you the regular supplies of enteral feeding and continence products.

Long gone as the days when a months supply of nappies could fit in one drawer… now they fill the whole cupboard. A regular debate in the Voisey household is ‘which room shall we lose this time, dear?!”.

Obstacle courses have nothing on your average SN family home when Abbots or Hartmann have been.

And every single day I am grateful that we have this.

It means that our boy has the equipment he needs to keep his body strong and healthy; he’s unable to stand or walk, so his standing frame allows him to experience being upright and allowing his muscles and bones to weight-bear, keeping them strong and healthy.

His support chair keeps him comfortable and perfectly positioned to play with his beloved LEGO and to interact with us at his own level.

SN equipment funding is yet another example of a postcode lottery with many families having to fight and fundraise for essential pieces of kit, including suitable wheelchairs and standing frames.

While enteral feeding provides a different set of challenges, if you wish to try a blended diet for example (Sam thrives on a mixed diet which includes both blended food and formula), being provided with his feeding supplies is one thing less to worry about.

And while it may not be a huge amount, the NHS contribution towards his continence needs all goes a long way to helping us give him the best life possible.

Granted, we lose a room every month to a mountain of boxes and equipment… but knowing we have what our boys needs makes it absolutely worth it.

A special friendship

In life its rare to have those friendships which last through your life. It’s even harder to make and keep those friendships if you have special needs.

Ethan has no verbal speech. He communicates with us through eye pointing and sounds which indicate whether he’s happy or sad.

Having no speech or movement limits him to creating his own relationships.

Initiating a relationship for Ethan, relies on the other person to make the first move and come to him.

Once that initial point of contact has been made Ethan can gauge whether that person likes him by the level of interaction they have with him. Ethan is very receptive and loves attention.

From a very young age Ethan made his best friend for life! They are 2 months apart and absolutely adore each other.

Freya, who now also is his cousin, is amazing with Ethan. She has always looked after Ethan and most of all includes him in everything she does.

Freya enjoys dressing Ethan up and also his chair to make it all colourful.

She takes him into the room where all the children are playing or outside with lots of toys for him to hold and see.

She enjoys helping Ethan to take part in cooking or helping him walk in his walking frame in the garden.

Freya enjoys feeding Ethan and is now also an expert at giving Ethan his water feeds via his button. Her inquisitiveness ensures she knows everything about Ethan.

She is always interested in why Ethan can’t do things, the way he learns or the things we can do to help Ethan learn and explore.

Freya has been around Ethans seizures since she was a baby. She’s not phased by any of this.

Most 9 year olds would never experience this. Freya has helped swipe Ethans vns and always holds his hand and calms him through them.

She asks questions and understands a little about what is happening when he has them. She is strong and brave but she also worries and can get emotional because she really wants her best friend to be OK.

The comfort and support is my favourite bit of their relationship.

Freya loves to cuddle Ethan and Ethan cuddles and laughs every time he sees Freya.

They have a bond which is unbreakable and I really hope this continues for the rest of their life.

They may be the same age and mostly the same size, (they take it in turns to who’s the tallest!) but developmentally they couldn’t be more different.

This doesn’t affect their friendship and I feel it makes it even more special a bond.

To see Ethan have a special friend who I know will always be there to include him and ensure he’s having a good time and that he doesn’t miss out, is every mums dream.

I am glad that no matter what life throws at Ethan, Freya will always be by his side.

A special girl who sees Ethan as no different.

I for one am very proud to have her as Ethans best friend.

Outside of the social media box

We live in a world that is dominated by social media. If you walk through the town centre, you’re likely to see people glued to their phones.

They’ll be on Facebook or Twitter, WhatsApp or Snapchat. There are many advantages to social media. One of these being that we are able to stay in touch with family and friends like never before, for free.

There are also many disadvantages.

Social media is in fact making us a lot less social.

Yes, we may talk more than ever over the phone or message but so many times I’ve seen groups of young people sat in a restaurant or on the bus, tapping away on their phones instead of talking to one another.

I’m guilty for it too. I rarely have my phone out of my hand.

Another disadvantage I find is that people are able to paint a picture of their perfect lives with their perfect homes, perfect jobs, perfect children, perfect partners, perfect everything.

We are able to keep track of people’s lives with just a few quick clicks. A scroll through Facebook one evening can quickly lead us to fall into a compare and despair trap.

That’s because the majority of us on social media only share the best parts; the smiles, the fun, the carefree moments, the glamour shots.

The world doesn’t see the sadness, the meltdowns, the arguments, the days when it feels like everything is going wrong.

But then we see their good days, we compare them with our bad days and it can leave us feeling sad, depressed even. Social media has the potential to make us depressed.

When somebody has a baby, most of the time they flood Facebook with pictures of their newborn.

Their partner might write a status to officially welcome their newborn to the world, after all are they even officially here if they haven’t had a Facebook introduction?

The partner may say how the mother did amazing, how they were in awe of her strength and determination to bring this precious bundle of perfection safely into the world.

There may be a picture of this innocent little human, dressed in a cute little outfit whose life is just about to begin.

The status will be inundated with comments of congratulations and compliments of how beautiful the baby is. Then a day or two later the family go home together to begin the next chapter of their life.

But what happens when things don’t go according to plan?

What happens when the baby isn’t born healthily? What if there are serious complications? Or what if the baby is born sleeping?

One and two were what happened to us. If I’d gone to hospital just an hour later, it would’ve been number three.

I, like many others had already done the big Facebook announcement with the scan pictures months earlier.

All of the 500+ people on my friends list were aware of my impending arrival.

I was receiving messages on a daily basis. “Is he here yet?” “Any sign?” “Come on baby we’re all so excited to meet you!” I was a week overdue so it was obvious his arrival was imminent.

I was updating almost every single day letting everybody know how tired I was and telling Jaxon it was time to come out, as if he was able to log on from the womb and take that as his cue to leave.

I never envisioned my first Facebook update after the birth of Jaxon would include the words “broken”, “nightmare”, “starved of oxygen”, “brain damage”, “seizures” and “bleak”.

I never imagined that the comments we would receive would include the words “heartbreaking”, “sorry”, “crying”, “gutted” and “awful”.

But that was pretty much how it went.

I wasn’t ticking all the typical social media boxes, instead I was broken hearted wishing I could be like everybody else.

Since becoming unwell with my mental health and subsequently being diagnosed with a personality disorder a number of years ago, I decided to be more open in the hope that my story could inspire others to change their lives for the better like I did.

When I set up a page to post updates about Jaxon on Facebook I decided it would be no different.

I was stepping outside of the social media box. I would show anybody who was interested what life is really like caring for a child with complex needs on a daily basis.

The ups and the downs. I find strength in numbers.

If I’m feeling less alone, my feelings are validated and I know it’s okay.

It makes things more bearable and I find it easier to carry on despite how much this journey might smash through my resilience and spirit. If I can help others to feel comforted by sharing the ups and more importantly, the downs, of our experiences then it’s so worthwhile.

So next time you’re scrolling through Facebook, feeling melancholy because it seems everybody has a fantastic life, a million times better than yours; remember that chances are they don’t.

Just like you they have bad days too. You just don’t always recognise it because you only see what they choose to show.

Take what you read on Facebook or Twitter with a pinch of salt. After all, social media only paints a tiny picture of real life.


Freedom to shop for USA families

We are delighted to announce that the Firefly GoTo Shop is now available across every Wegmans store in the US!

The announcement comes after Wegmans initially trialled the adapted shopping cart in their Pittsford and Alberta Drive stores as a result of tireless campaigning from our wonderful community.

The trial carts received some great feedback from parents; NY mom, Liza Rudroff, played a vital role by following up upon requests to get a GoTo Shop in her local Wegmans store.

She was delighted to finally try it out in the Pittsford Store with daughter, Sydney.

“She had a great time shopping with me and it was clear she felt comfortable and safe. Placing Syd in and out of the cart was also effortless. The cart handled extremely well and I like the placement of the handles for pushing. This was honestly the first time I was able to shop without worrying for her safety and I can’t tell you how good it made us feel!”

After the positive response to the trial carts, Wegmans quickly recognised there was a true need for the GoTo Shop within the community and were eager to be the first US supermarket to roll the cart out across all stores.

At Firefly, we are delighted to partner with Wegmans whose company values align with the GoTo Shop message and we look forward to working together to promote inclusivity across US supermarkets. Wegmans Community Relations Manager, Linda Lovejoy, told us:

“At Wegmans, we are committed to providing incredible customer service to all our shoppers, and we’re always looking for better ways to make our stores accessible to everyone. When Liza brought this cart to our attention and shared her family’s need, we recognized that there are more families, throughout all our market areas, who would benefit from the availability of this cart at our stores.”

This amazing result just goes to show what our community can achieve together.

But the hard work doesn’t stop here, it is our mission to see a GoTo Shop in every retail store around the world and Wegmans is one step closer to achieving that.

We are confident that this is just the beginning for the GoTo Shop in the and, with some encouragement, other retailers will soon follow suit.

If you want to see a GoTo Shop in your local store, we need you to get involved and let them know.

You can do this by simply downloading a campaign leaflet and handing it in to your local store manager.

If you would like more information on how you can get involved, just email [email protected]

To our teachers and TAs, with love and thanks

Four years ago my tiny boy started at a new school.

At the grand age of 4 years he’d been written off by his previous SEN school as being too profoundly disabled to learn much of anything.

Nervous and devastated, J and I asked to visit a school which was then out of our area…The second we walked in we knew this was somewhere rather special.

I don’t think there is anywhere quite like Horton Lodge. Set in the Staffordshire Moorlands, it’s a haven for children who have been dealt a crappy hand by life.

The people who work here are more than just staff, they give their hearts and soul to the place. They become family.

So, this week as the school year draws to a close (seriously, how did that happen??), our small school was suddenly packed to the rafters with parents, carers and friends as we attended the hottest awards show in town – the Horton Lodge Oscars.

One by one, each child made his or her way down the red carpet to rapturous applause; some needed a bit of support from their teachers and walking frames, others waved excitedly from their wheelchairs, looking round to see where their loved ones were sitting.

Honestly folks, there wasn’t a dry eye in the place.

Sam won an award for joining the Wide Awake Club, a nod to how much more alert he is and how hard he’s worked this year despite a difficult drug wean.

He was so proud of himself, Mummy and Daddy were too.

The way this school and its wonderful people celebrate each and every child doesn’t just lift us as parents.

It gives us wings so we can fly alongside our brilliant children as they soar to new heights.

The reality is that there are some children no longer here to celebrate, and the pain of their absence never leaves.

But in their memory, their friends achieve what others believe to be impossible.

And in applauding each child we are reminded that the best awards are those which are hard won, but which are rarely purely academic.

Sam has achieved more in his 4 years here than many thought he would in a lifetime.

His communication is astonishing and he isn’t done yet. As the summer holidays beckon, a huge thank you to all those wonderful people who believe in our children as we do.

To the wonderful staff of Horton Lodge, we’ll see you in September x


Finding the right product

Recently, we have come to realise that there are massive gaps in the market when it comes to suitable products for disabled children. A few months ago, discussions began as to how to move Alfie into a room with older children at nursery.

The difficulty is getting Alfie up the stairs. With his CP and as he gets bigger and heavier, it is not safe for the staff at nursery to be carrying Alfie up and down the stairs.

The problem is there is not suitable product to safely get him up and down the stairs.

The nursery cannot have a stair lift because the building is old, and it would block too much of the stairs, making it unsafe for the staff and other children during emergency situations.

They also cannot have a lift as there is no room. We then started to look at stair chairs as it seemed like the most sensible option, yet that led to a whole other problem.

So many stair chairs are designed for disabled people, yet none are for disabled children. The harnesses do not offer sufficient support, nor do they adjust to be sufficiently small.

So, what could we do?

A simple solution seemed to be to use an adaptive chair on the stair chair to make it suitable, such as the GoTo Seat. We have had Alfie’s GoTo Seat for over a year now and love using it in a variety of ways to make chairs/equipment suitable, such as swings.

It seemed like a no-brainer to use the GoTo on a stair chair.

But this is where the legal problems came.

The GoTo Seat has never been tested with a stair chair to check its safety, and though the chair fitted perfectly, it would make the insurance void as it would be classed as an ‘adaption’.

We have searched long and hard for a suitable product, and short of paying in excess of £6,000 for a custom-made seat, we are at a loss.

We cannot afford to pay out £6,000 for a chair, and if we did, it would only be Alfie that could use it as it would be moulded for him.

No other child/person at the nursery could use it, and Alfie would soon grow out of it, so in reality, the custom-made seat is not an option.

At the moment we are still searching.

We love the nursery Alfie and Rory are in, and not only that, but it is a product vital for our home life too.

Our stairs are too narrow for a stair chair and Alfie is fast approaching a weight where he is too heavy for us to carry up and down the stairs.

We hope we can find something suitable soon, but this entire situation really has highlighted to us the huge gap in the market when it comes to products for disabled children.

I hope that as time progresses, companies start to consider this gap and cater for everyone, regardless of their age, size and ability.

Cleft and Craniofacial Awareness: Celebrating our differences

July is National Cleft and Craniofacial Awareness month here in the United States.

The term “craniofacial” refers to the parts of the head and face; a “craniofacial condition” refers to any disease, defect, or trauma resulting in the malformation of the head and face.

Cleft refers to an opening or split in the upper lip which happens when developing facial structures in an unborn baby don’t close completely.

A baby with a cleft lip may also experience a cleft in the roof of the mouth, also known as a cleft palate. Some children are born with one or the other, and some are born with both.

Cleft lips and cleft palates can usually be corrected surgically at a young age.

Craniofacial differences came into the spotlight in 2017, when the book “Wonder” by R.J Palacio was made into a hit movie.

It resulted in the “#choosekind” movement and a surge in awareness of craniofacial conditions, facial differences, and the people they affect.

Auggie Pullman, the fictional character in “Wonder,” is a representation of one of the approximately 600,000 people in the United States that are affected by a craniofacial condition or facial difference.

Two of my children and I are three of those 600,000.

We were born with a rare genetic condition called Oto Palatal Digital Syndrome with Pierre Robin Sequence.

This involves, among other issues, an extremely small lower jaw which compromises the person’s ability to breathe correctly. Pierre Robin Sequence is one of the 19 conditions classified as craniofacial by the Children’s Craniofacial Association of America.

Although these conditions vary widely in severity, the people that they affect all have some sort of noticeable facial difference.

When I learned that Wonder was being made into a film, I was a little bit leery. I was afraid that it wouldn’t do justice to the challenges that people with facial differences live with every day, and the struggles that many of us go through. I was also afraid that it would put people with facial differences up on some kind of inspiration pedestal rather than validate and celebrate our differences.

Usually, people affected by craniofacial conditions do not want to be the source of someone’s inspiration just because they happen to have a facial difference.

My hope with the release of the movie and “#choosekind” movement was that people would not only choose to be kind; they would choose to be educated.

So far, I have not been disappointed. There will always be the awkward stares and questions, but I would rather have blunt questions than for someone to make assumptions about myself or my kids.

Another awesome thing about the rise in awareness of craniofacial conditions is that it has allowed me to find a wonderful online community of people with the same diagnoses of OPD.

A couple of years ago, I had almost given up on finding anyone else with the same condition, but now I have found a group that understands myself and my kids in a way that no one else can.

Everyone with a cleft or craniofacial condition deserves to be celebrated.

Each one has a unique story, and many of us would be glad to share- all you have to do is ask!

Preparing for puberty

Although Isla’s sisters have completely different personalities there has been many similarities in their journey from babies to young adults.

It started with a fairly predictable love of everything pink which progressed to purple and then light blue.

They tried every activity under the sun and we watched many self choreographed shows.

They went through the pretty dress phase, moved on to shorts and t-shirts followed by short skirts, small tops and Converse.

Moving into the pre-teens and teenage years the awareness to fit in shaped fashions, hair styles and behaviour. Friends, Snapchat and Instagram started being all important and we quickly became the bank, taxi driver and maid.

The wearing of crop tops progressing to their first bra, shaving legs and wearing mascara for the first time were all a right of passage into those teenage years for my older girls.

However, with our 10 year old daughter Isla we are sailing uncharted waters. She has a rare syndrome causing autism, epilepsy and intellectual disability.

Instead of following in her sisters’ footsteps who adapted their social behaviour to match their changing bodies, she remains stuck in those early years.

She still enjoys playing with Thomas the Tank Engine, Paw Patrol, Shopkins and babies. Her best day out would be out shopping for toys or a trip to the library.

She has friends her own age but enjoys the company of those older than her where she doesn’t have to worry about social complexities.

Whether I like it or not Isla is going to experience puberty at the same age as her peers. This is an awkward time for most parents but we are facing additional challenges with Isla such as:

  • Not having the cognitive ability to understand what puberty is
  • Sensory issues. Even wearing a crop top is highly uncomfortable for her
  • Unable to carry out self care tasks on her own
  • Keeping her safe from sexual predators
  • Learning what behaviour is acceptable – what should be done in private versus public. We are still working on the burping and farting!
  • Managing moodiness, anxiety and possible seizure increase

There are plenty of resources and information that can help us. Putting them in practice though takes a lot of work and energy.

Some of the suggestions I have found are:-

  • Using the correct words for body parts and bodily functions. Start talking about this early (tick)
  • Build up to a bra. Start with a singlet or crop top (we are still at the singlet stage)
  • Keep up physical activity (we try our best)
  • Teaching hygiene (a work in progress)
  • Explain menstruation long before it begins, prepare a kit and practice with pads (deep breaths!!)
  • Wash hair more often (always do regularly against her protests but she can’t do this on her own – must encourage this)
  • Prevent body odour by wearing deodorant (think she’ll like doing this)
  • If wants to wear makeup start off subtle (not going to happen – won’t even allow her nails painted)
  • Having social stories (a visual picture book) that she can read over and over to help her learn new skills and rules (on my to do list)

I am sure with a bit of planning and practice we’ll get through this stage like we have got through all the others so far.

Isla’s assistance dog Bo is going to be a great help to her while she navigates these teenage years.  Not only as a companion but also alerting others to be patient while she’s learning to become more independent.

Seeking help from other parents who have been there will also be invaluable.

I am lucky to have a great support network both online and in our community so we won’t be going through it alone.

How much seizure activity is too much?

This is not a question I ever imagined would be asked. By anyone. Least of all by parents like us who’s loved ones fight that monster on a daily basis.

Three years ago my little Dude had his VNS implanted.

It saved his life.

It has stopped countless seizures and reduced his seizure frequency by around 70-80%; he still has daily seizures but mostly they’re brief, over in a few minutes at worst.

But this evening we’re in the middle of a medication wean, its hot, he has a loose tooth and lo, the Epilepsy Monster has stuck HARD.

Sams seizure protocol is clear – he has emergency midazolam to be used if a tonic clonic seizure doesn’t stop within 5 minutes, or if a complex focal cluster doesn’t stop by 20 minutes.

This was a brutal complex focal even by Sam’s standards.

At 5 minutes it was evidently not stopping, by 15 we had the midazolam ready.

However by 20 minutes, the seizure seemed to be coming to an end… But how much seizure activity is too much?

How much shows a seizure is ending and is just residual twitches/jerks, and how much indicates that the seizure is regaining its hold?

It is an incredibly difficult call to make. Midazolam is known to cause immediate respiratory arrest, even if a patient has used it many times before.

However, not intervening can have equally serious consequences.

And this is my CHILD.

At 20 minutes for a complex focal, the risk of giving midazolam outweighs the risk of the seizure continuing.

I would do anything to swap places with him. Instead, I hold and reassure him while Daddy gives him the potent drug that we hope will stop the seizure… if it doesn’t, we’ll be spending another night in hospital with our boy.

The seizure is brought to a halt within a minute, every muscle starts to relax as the wildly misfiring brain cells are brought under control.

My boy leans heavily into me, his little body aching and exhausted.

Now the seizure activity is over, he can sleep and recover.

And one of us will be by his side throughout the night, just in case we need to fight the monster again.