World Cerebral Palsy Day 2021

A day to raise awareness. A single day each year, for a condition that affects millions. And it isn’t even a condition, it’s an umbrella term. Cerebral Palsy is as different for each person diagnosed with it as their fingerprints.

One person with Cerebral Palsy may be able to walk and talk and their disability will have minimal impact on their lives. Others will be so disabled they are not well enough to leave the hospital. Then you have every variation in between. Like I said ‘Cerebral Palsy’ is an umbrella term.

For Alfie, his Cerebral Palsy is defined as ‘Spastic Quadriplegic’. It affects his whole body, external and internal. For anyone with Cerebral Palsy, that is not who they are though- that is their disability. Alfie has Cerebral Palsy, but Alfie is also a twin. They just turned 5 and are still getting up to mischief together!

Alfie cannot walk, unless in his MyWay walking frame, sit or crawl, but Alfie can roll. And my goodness, he is quick! He waits for us to leave the room or look away then rolls as quickly as he can to cause as much havoc and mischief as possible, then cackles when he is caught. Sometimes, he even has the good grace to pretend to be sad as we move him away from whatever he shouldn’t be doing, but normally he belly-laughs as we start to say his name.

Alfie also loves to read. No, he cannot read himself, he is only 5, but he loves us to read to him and to look at his books as he is playing on the floor. His favourite story is The Gruffalo, he loves the repetition and anticipation.

You see, regardless of his disability, Alfie is just a little boy. And just like any other child, he likes to play and sees the best in others. That is what is important, don’t see the disability, see the person. See what they can do instead of what they cannot do. See their likes and interests instead of what makes them different.

Say hello and include them. A disabled person is still a person and has the same worth as someone who isn’t disabled. It isn’t until we see past a person’s disabilities that we truly see the person and that is when society will truly be inclusive.

Horsing Around

As a child, I was obsessed with horses. I rode every Saturday in the local riding school and thought about horses most of my days.

When I was 13 I was fortunate to get my very own horse, a quite mad little thoroughbred type mare who taught me mostly how to hold on!

I’ve passed this love onto my children, especially my daughter.

My other kids love horses but didn’t go to riding lessons (thankfully, or we’d be bankrupt!).

One of my sons has spina bifida, hydrocephalus and epilepsy. He is a full time wheelchair user.

We have had an incredibly hard time recently as his epilepsy has worsened considerably and we are now having to explore surgical options to control them.

It has led to behavioural challenges such as impulsivity, rigid thinking, a quickness to anger and so on.

With my background, I thought it might be worth trying to see if working around horses would help Jacob. How right I was!

We went to a local girl who owns Peppermint Farm where she trains horses with her own technique that she calls “MINT” (Made Is Never Together).

It’s a non aggressive way to interact with traumatised horses in a calm, holistic and compassionate way.

Jenna has trained a beautiful little pony called Elsa, who now helps children with additional needs at the “Incartus pony foundation” where Jacob first rode (which is how we heard of Jenna).

Back at Peppermint farm lives a lovely horse called Puzzle who has come through his training.

The triplets were allowed to groom him, feed him some treats and learn about how to care for him.

Jacob then built up confidence and was able to try leading Puzzle using a very loose rope and eventually his voice alone!

He was blown away by the whole experience and was able to see how his own behaviour affected Puzzle’s.

For example, when he was uptight and shouted then Puzzle was backing away from him. We had an absolutely fantastic day and Jacob said that he felt “so happy” to have led a big strong animal around using only his voice!

The next weekend we also went to a lady called Mandy who has a small rescue pony called Amber.

She has an adapted saddle that offers all round support for Jacob, who would otherwise be unable to sit unaided.

He was really quite scared at first when he got on Amber, although the more Mandy led him, the more confident he became.

We watched with such pride as Jacob conquered his fears and got to ride a beautiful pony round little quiet lanes.

It was honestly magical to hear Jacob say “the horse is chasing all my fears away!”.

He was calmer with Amber and whenever she didn’t respond to the way he asked her to do something, he was able to ask in a different way.

That sounds like a small thing, but for Jacob, to show flexibility in his approach is really very special.

As a family, we are trying to focus on making special memories as things really are “day by day”; so I am so thankful to both Mandy and Jenna at Peppermint Farm for allowing us to visit and enjoy their beautiful animals.

In the meantime, I will try and persuade my husband that a little pony would be a WONDERFUL addition to the family…(as if we don’t have enough to worry about!)

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]

The unnatural parent

There is an expectation when you become a parent that you will instantly know what you are doing.

That you will know what your child wants and needs; that you will be ready for all of the challenges that parenthood throws at you.

But the reality is you can never be prepared because you can’t predict the future.

Never in my wildest dreams did I imagine I would have twins.

I had never considered the possibility of having a child with disabilities.

All of my antenatal classes and the parenting books I read focused on caring for a baby- the feeding and changing; ‘safe’ sleeping; things to be aware of such as temperatures and rashes.

But there is so much that these classes didn’t cover and could never prepare you for, because being a parent is not easy or simple, though it is a fundamental feature of all lifeforms.

The biggest thing that made me question the idea of what a ‘natural parent’ is, is the mental and emotional change you go through.

Honestly, I didn’t instantly fall in love with Rory and Alfie when they were born. I was terrified and went through a whole range of emotions that ultimately led to me suffering from postpartum depression.

I couldn’t understand why I wasn’t happy and ‘glowing’; I didn’t know why I was crying constantly. I loved them unconditionally, but I wasn’t happy for a long time and because of the portrayal of parenthood on social media, I thought there was something wrong with me.

It is this portrayal of the natural parent that is so damaging. Where is the real parent, the parent that goes through struggles, the parent who learns as they go?

One of the biggest things I had to learn is that breastfeeding is not always natural.

That it is painful initially and your baby cannot always latch. After being discharged from the special care baby unit, Rory did well with breastfeeding- he would latch and feed well and the pain soon stopped.

Alfie was a whole different story- along with his health issues, Alfie just could not latch properly.

In turn, that caused greater issues as even trying to breastfeed would use up too much energy.

It very quickly became apparent that Alfie would only be able to bottle feed, which led to more complications. We then had to work out which teat was suitable, as well as what we would feed him.

Ultimately, I decided to express so that Alfie still had breastmilk, but the toll that took on my body and mental health was something else to overcome.

And that is the reality.

Parenting is not natural or easy for everyone. The struggles are normal and real.

It is ok to not know what to do, you have to learn what is best for you, your child and your family and know that as long as you are trying your best, you are winning at parenting.

Holidays in term time are sometimes necessary

If you had asked me before having children if families should take their children out of school for holidays I would probably have said no.

I had a teaching degree and was a staunch believer in the importance of attendance to allow the teachers time to get through the curriculum and to allow the child the best chance of success.

Then I had children.

Then both my children had difficulties and additional needs.

Now I firmly believe that any family who have a child (or children) with additional needs should be allowed to take family holidays when it suits the family as long as it’s for a short periods and schools are informed before hand.

There are so many reasons why I have changed my mind and mostly it’s because of my own experience.

You see a few weeks ago I took my own family for a week at a caravan park during term time and I don’t regret it one bit.

I am fortunate that where I live parents are not fined for such things but even if I had been I know I would still have done it.

For me it wasn’t about cost or convenience but more about my family needing space to recover from major trauma that was making us all ill.

My ten year old son, who has complex autism, is non verbal, epileptic and has a progressive genetic condition had recently had an MRI scan to routinely check on a small tumour on his optic nerve.

He hadn’t been quite himself for some months but I was reassured this was likely due to puberty, epilepsy or his genetic condition.

That wasn’t the case and his scan showed a huge mass on his right frontal lobe: he had a brain tumour.

What happened next was scary and traumatising for everyone. Within days I was called to a cancer ward to speak with a neurosurgeon and an oncologists and see scans of my son’s brain.

Days later my son had another scan and more general anaesthetic and within an hour of getting home from this the hospital called for him to be admitted the next day!

The day after he had six hours of surgery where he had a craniotomy (his head was cut from his ear to three quarters across his head) for a tumour biopsy.

That night we were not sure if he would make it through the night. When he did wake his face was swollen so badly neither of his eyes could open and he could barely eat or drink.

With no ability to verbally communicate, significant learning difficulties and major sensory struggles the whole hospital stay was very difficult on everyone, especially his twin sister who is also autistic and who had a breakdown seeing her brother in so much pain and looking so different.

My son couldn’t go to school for months. He was so weak on one side it was like he had had a stroke. The day we got the biopsy results he was still having to use a wheelchair as he had no strength to walk.

Throughout all that my daughter missed just one day of school, and that was the day of her brother’s surgery as I could not be in theatre with my son and get her to school over twenty miles away at the same time.

She struggled through emotionally and mentally for several weeks as everything at home was different, emotional and sad.

So when my son recovered enough to sit and stand and eat independently I made the decision that all four of my family needed a break. My husband, who struggles with autism and depression was fast deteriorating.

My son had been through a horrendous few months and my daughter was barely getting through each day. We needed away from appointments, phone calls, early rises, social pressures and financial worries.

A week away in term time was critical to our mental and physical wellbeing. It allowed us to recover, regroup and rest. We didn’t have the luxury of waiting for the next school holiday and even if we could have, given my son’s recent surgery he needed somewhere quiet, restful and with no crowds or queues everywhere.

Ours was an extreme case and I would have stood before a judge and justified my actions had I needed to. But why should I?

Why should families already struggling financially, socially, physically and emotionally be told they can’t have a much needed break during term time?

Why should they be fined for doing what is right and beneficial for their own family?

Families of children with additional needs are among the most vulnerable in society.

They often rely on government benefits as many parents have to care full time and are unable to work.

Families are coping with incredible stress from medical appointments, meetings, administering medication, lack of sleep, lack of finances, chasing professionals and the physical care of a child or children with extra needs.

For many going anywhere in busy school holidays is out of the question due to poor access, queues, crowds, noise and cost. By preventing family  holidays in term time these families become more isolated and stressed than ever.

The end up at breaking point costing society money in respite and antidepressants that could have been prevented by the freedom to have a family break when needed.

A week of school work can be caught up.

A week of laughter and rest can make the difference between a child and family coping or falling apart.

That week away restored my family to health, physically and mentally.

It was vital for us all and we turned months of tears and trauma into precious smiles and memories.

Sometimes we need to look at the bigger picture.

School attendance is important but physical and mental health matters more.


Disabled changing facilities

When you’ve never encountered the world without a wheelchair you take so much for granted.

Since having Amy I take nothing for granted.

Before I had her I didn’t even know what a hoist was. I didn’t notice that some places only have steps. I hadn’t even stopped to think that most disabled toilets aren’t actually suitable for everyone with a disability.

Until you are immersed in something you don’t realise the necessities and actually how much needs to change so that everyone can lead an accessible life.

Can you imagine being on a day out only to find out there is no toilet at all except for at your own home? There would be outrage!! So why does it have to be different for people who need a bit of extra help?

Just because no one in your life needs those toilets does not diminish the need for these very important facilities.

Someone once said to me, “before knowing you and Amy I didn’t think twice about parking in a disabled bay just for a few minutes”. I was gobsmacked!! Just because they didn’t directly know someone who needs these spaces doesn’t mean that they aren’t needed.

It shouldn’t take someone close to you becoming disabled for you to recognise the needs of others.

People always  think “that will never be me”. I was that person once.

There is no one person on earth who is immune to the fact that one day they may require help with their mobility.

People are living longer, more poorly babies are being saved, and it’s great to see that some places are starting to recognise that we all have different needs and different ways of doing things.

I had a moment of ignorance recently and when I realised my error I felt quite ashamed of myself. There was a post on social media about how people are buying radar keys online so that they can go to any disabled toilet.

Fair enough if you have a disability but this is actually people with no disability. There were even parents of babies saying how they want access to changing places for convenience… even though they have their own facilities.

I was so angry. The discussion went on and someone explained that their local Changing Places could be opened from the outside even when the room is occupied and that this is a dignity/privacy issue for the person in the room

So I chirped in saying how good it is that some of the ones we have used have required us to go and get a member of staff to let us in so that the system cannot be abused.

To me this was a perfectly acceptable and efficient way to make sure the facilities don’t get abused.

Someone replied to say that actually… by the time they have been to reception to get the key, and got in… it could be too late for some people and actually you shouldn’t need to know so far in advance that you want to use the toilet.

In my situation as a mum with a child who has no mobility and needs hoisting and has nappies, I hadn’t stopped to consider the needs of people who use the toilet and may have continence issues that require that they get to the toilet quickly but also need a hoist.

It made me think about how diverse disability really is. I often think of our situation as the most “severe” due to the level of need and lack of continence etc, but I am overlooking a big cross section of the disabled community.

I apologised to the person and agreed that there is no easy way to man these facilities to prevent abuse. It’s like how there are so many invisible disabilities too… because Amy’s disabilities are obvious (wheelchair, splints, tubes etc) I show no shame when joining the queue in Primark to be served quicker… and yet people really stare if someone without mobility equipment joins the same queue.

You just don’t know someone’s situation.

I am still learning everyday, and viewing the world through mine and my daughter’s eyes isn’t always effective. We need to all be more aware.

Every time we visit somewhere that has toilet facilities with a hoist and level access changing table I make a point of contacting that venue (be it a supermarket, a zoo, anywhere) and let them know how grateful we are for their commitment to including all.

Places need to know how valued they are by doing this – yes it’s a lot of money to front for a minority… but it can transform the lives of others.

Recently we went on a day out as a family to a farm. We were having a fantastic time. Amy was in good spirits and when she’s happy the feeling is infectious. We were happily out in the world making memories just like everyone else.

And then it happened. The need for a full outfit change.

I had previously done a full outfit change at this farm and remember the lack of space, and the wobbly changing table that probably wasn’t safe for her weight. I remember leaving the wheelchair outside the door and hoping that no one stole any of her equipment or iPad. I remember having no space to manoeuvre her and how much my back hurt leaning over her. This isn’t an option for us now.

I know she isn’t huge, I still lift her a lot.

But she is very long, and her movements very unpredictable… we need space to keep her safe… baby changing tables are for babies, and my child is definitely not a baby.

So we cut the trip short… we checked to see if there were any places locally (there’s an app I didn’t know about that Phil had downloaded!) and there weren’t any nearby. We were disappointed as we were hoping to stay out for the whole day but sadly that’s how it has to be sometimes.

So, thank you Sandcastle waterpark Blackpool, Chester Zoo, Manchester Arndale centre, The Trafford Centre, Tesco in Hattersley for making our lives so that we can have a day out like everyone else.

Thank you also to the places we will visit – specifically because you provide what we need.

It may be a dent in your bank balance, but to others it is priceless.

I hope many other places follow suit, or even better – I hope that it becomes a law that there has to be a certain amount of full spec facilities per so many miles so that no matter where you are you never have to travel far to do what everyone else does without even a thought.

I Choose You

I would venture to guess that almost all parents of children who have special needs have acquired a list of the ridiculous things people say to them.

A couple of the most popular phrases familiar faces and strangers alike pass out to special needs parents sound something like:

“I just don’t know how you do it” and “I could never do what you do.”

Whether they say it aloud or not, the parents who these comments are directed at generally think something along the lines of “I don’t really have a choice.”

When you are given the gift of a child who has additional needs or diagnoses, quitting is not really an option.

Do typical parents abandon their children when the going gets rough? Hopefully not. Neither do we.

I am a mother to multiple children who have special needs.

But the difference between myself and the majority of other special needs parents is that I did, in fact, have a choice.

My children who have special needs were not born of my womb. I chose to care for them through foster care and adoption.

While I wouldn’t say I had a full idea of what I was getting into with each child (not even close), my husband and I do know that every call we receive about a child in need will be a child who as a disability or medical condition.

From the beginning of our foster and adoptive journey, we specified that we wish to be a home for children with special needs.

So while the journey is always filled with the most unexpected unknowns, these are twists and turns that we have asked to be a part of.

In many ways, the fact that I chose to be a special needs mama does not make me that much different from those who parent special needs children who were born to them.

But there are some differences that stand out.

I remember when a child with complex medical needs came to live with us and someone said, “Well I know you’ve probably thought about adopting her but you have to think of future holidays and vacations.”

I remember thinking: “Would you say that to someone who is holding their freshly born baby who has special needs?” Of course not.

The truth is, our journey of parenting is viewed and treated differently because we have chosen these children.

In the past when we have felt overwhelmed or asked for help, there have been times that we’ve been met with an attitude of “You chose this” and “Maybe you shouldn’t take on more than you can handle.”

To be absolutely transparent, sometimes I do struggle with feeling unsure about whether my husband and I have made the right choice.

It does feel intimidating to commit to care for children who have a long list of unique needs, whether I will be their mama for a short time or forever.

I see the ways it changes relationships. I see how tired and isolated I can be. I do battle fear over what I have signed up for or what I have given up in return for caring for these children.

But when it comes down to the heart of the matter, I would choose this life again and again. I would choose to love, adore, and care for these children who cannot care for themselves.

I would choose the sleepless nights and endless appointments. I would choose to hold their struggling bodies in their deepest, rawest hurts and join them in their greatest victories.

I would choose the medical mysteries we wade through and I would choose to keep advocating like a grizzly bear time and time again.

I would choose these children because these children are more than worth every ounce of what I give to them.

I would choose these children because they are not given the same choice that I am.

And you know what? I believe that the parents who didn’t get to choose to have a child with special needs would choose their child again and again too. They already do.

We as parents all wish our children didn’t have to be in pain or be left out or work so hard for everyday tasks. We do become exhausted.

Almost every day does hold grief, heartache, and ridiculous amounts of hard layered in among the beauty.

But when given the choice, the answer is easy. We choose these precious souls that have been entrusted to us no matter their needs or how the arrived in our hearts and homes.

May these children know and believe the words “I choose you” every day of their lives.

Life Changing

As a parent of twins, life was always going to be hectic. Raising children of the same age is not easy as there is always something that needs to be done.

But to also have a child with a disability is a whole new level of difficult, yet also gives a completely new insight into the world.

Raising twins, you expect everything to be the same.

Yet when one is disabled the contrasts quickly appear and only increase as they get older.

When Rory and Alfie were babies, it was hard to tell that Alfie is disabled, because at that age, Rory was of the same physical ability.

But as time goes on, and Rory has learnt to walk, and talk and is developing at a terrifying rate, it is easy to see how disabled children can be left behind.

How society expects them to achieve less and therefore offers them less support and opportunities to progress.

So, you become an advocate, whether you want to or not. You force society to accept and embrace your child, the way they embrace other children.

Because Alfie is likely to be wheelchair bound,

the majority of his professionals expected us to put him in a special needs school and try to move our focus from helping Alfie to progress and develop, to simply making Alfie ‘comfortable’.

But there is no reason why he cannot be comfortable and healthy whilst also progressing and developing.

There is no reason why Alfie’s education should be less important than another child’s.

There is no reason why Alfie cannot have the same opportunities as Rory.

You also see the inequalities that society tries to hide.

Be promoting inclusion, it is as though society feels it is doing its part, yet when you look below the surface…

There is still so much missing for disabled people that you are fighting an uphill battle before you even realise it.

Rory is expected to have some level of independence at the tender age of 2, yet Alfie is expected to be reliant on others for the rest of his life and will have to fight for equality.

But the journey Alfie, and every other person with a disability, will go on is no less important than anyone else’s journey.

It is simply different. It may take them longer to complete a task, but they can still get the same result, they may have a different method, but the same outcome.

Their journey is no less interesting and exciting so why does society make it so much harder?

Why is the world not as open for Alfie as it is for Rory and when will it change?

Accessible Shopping Survey – The Results

In a recent survey we asked our online community to share some of their thoughts and experiences when shopping with their child.

The results are in and we plan to use the findings to support the GoTo Shop campaign and show retailers how they can make their stores more accessible to special needs families.

So, what did we learn?

Our survey was undertaken by parents of children aged from 13 months to 25 years with a variety of conditions such as Cerebral Palsy, Down’s syndrome, Autism and Metabolic Disorders.

86% of participant’s children were wheelchair users.

We asked parents what their preferred method of food shopping was; only 7% chose online while the rest preferred to physically go to the store or a combination of both.

However, 66% then went on to say that they have, at one point, felt forced to shop online due to accessibility issues at their local supermarket.

This highlights the need for retailers to be more inclusive because, although parents want to shop in their stores, they feel that it is not always an option.

The majority of those asked said they choose to take their child shopping with them but 85% find supermarket shopping to be a challenge.

We asked parents to expand on exactly why this is the case and found that the majority of participants found supermarket shopping to be a challenge because of issues surrounding inaccessible shopping carts.

In fact, 63% described a problem with pushing a cart and wheelchair simultaneously or that there was no suitable cart available to them.

“We need 2 people if we want to shop with our son, one to push the cart and one to push the wheelchair. Otherwise, I can only grab a few things”

A further 6% stated they needed to arrange childcare in order to carry out their supermarket shopping.

“I cannot take my son shopping so I have to fit it in around school hours”

When asked what additional features parents would like to see in their preferred store, 60% said they need an accessible changing area and 49% an accessible shopping cart.

One of our most overwhelming statistics shows that 91% of parents said they would be willing to travel to an alternative store if they offered a more accessible shopping experience.

This highlights the importance for retailers to be more inclusive or face losing customers.

Similarly, if supermarkets were more accessible, 58% of parents said they would be more likely to spend a longer amount of time instore; a considerable benefit to the retailer.

The survey has given some valuable insights into the issues faced by parents of special needs children and provided findings we can present to retailers in the hope they will strive to provide a more accessible shopping experience to ALL their customers.

It’s clear from the results that one major issue faced by special needs parents is that supermarkets do not offer a shopping cart which is safe and suitable for their child.

This means many are forced to shop online, arrange childcare or a second person, or struggle with a wheelchair alongside a shopping cart.

At Firefly, we want this to be a thing of the past by making sure #EverySupermarket provides at least one GoTo Shop cart.

You can help us to achieve our goal by taking our campaign leaflet and requesting a GoTo Shop at your local supermarket.

For more information on how you can get behind the GoTo Shop campaign, e-mail us at [email protected]