Why Scooot Makes a Great Christmas Present…

Although we’d never call any Firefly product a toy, we definitely put the ‘fun’ in to functional when it comes to equipment for kids with special needs.

So here are the reasons why we think Scooot would make the prefect present for all the kids on your list this year with limited movement.

It’s a 4 in 1

Scooot mobility rider has 4 configurations CRAWL, SCOOT, RIDE & POOOSH

Crawl – Lets kids move and explore on their tummy helping to strengthen upper body and tummy muscles as they lift their head and shoulders.

Scoot – In Scoot function, kids can sit upright and move around using their feet, this encourages their trunk and pelvis to stabilise freeing up their hands to handle objects, play and explore

Ride – Ride allows kids to self-propel and manoeuvre around the floor, building upper body strength and experiencing independent movement as they go.

Pooosh – Pooosh lets somebody else do the hard work. If your child isn’t ready to properl themselves yet (or they’re just tired) attach the Pooosh handle.

Scooot is loved by ALL kids

There are not many special needs mobility products that involve brothers and sisters, cousins and friends too…

Scooot provides an early experience of independence for lots of kids with limited movement. It frees them to explore, play with pals, chase big brothers and race little sisters without any help.

We bet everyone will be keen to have a go!

Fun & Therapy

It comes with an activity programme…

Now we know the emphasis will be on fun, it is Christmas after all. But once the trees are down and the decorations packed away, our activity programme, created by our team of clinicians will help kids get the most out of their Scooots. Expertly designed to help develop and maintain independent mobility skills.

It’s Portable

Scooot is perfect for keeping at home, visiting friends or relatives, or taking to school…

The Scooot helps kids with mobility limitations be little explorers in lots of different environments. So just like their brothers and sisters they can take their Santa presents out and about.

It might be nice to know that 7% of our sales are going to support the charity Cerebra which supports kids with disabilities and their families in the UK.

Just one last thing Santa, we’re sorry if all the Scooots on your sleigh this year make it extra heavy!

Merry Christmas

The Team at Firefly


This week two dear friends are facing every parent’s worst nightmare, as their little boy is moved to our children’s hospice for end of life care.

The end can’t be far away, and although we’ve known for many many months that his condition was life-limiting, it doesn’t make it any less of a shock or any less painful when that time approaches.

We first met little Harry as a tiny baby, not long out of the NICU, on a family fun day arranged by the PMG family support charity. He was so, so beautiful, with his tiny elven features, perfect blond hair, and eyes that looked into your very soul!

As time moved on and new diagnoses were added to the mix, it became obvious that Harry was a precious child who would not be blessed with a long life.

I held my own boy a bit closer than usual last night.

I am so thankful for our childrens hospice.

It doesn’t look much from the outside; nothing special, just a modern building with lovely gardens at the front. But it really is a Haven for families at the very worst times of their lives – the staff are angels on Earth, nothing is ever too much trouble and they’re always there ready with a shoulder to cry on or arms to hold you up when your own legs fail.

I know that gorgeous little Harry will be very well cared for there, and that his whole family will be given the love and support they need.

And when the end comes, they won’t be alone unless they want to be. And on that day, a wooden windchime will be hung by the entrance door to the hospice… gently singing in the breeze and letting visitors know that a bereaved family are in residence; as a mark of respect and honour to the little life now run its course.

I can’t believe I’m even writing this down.

I think we all dare to believe that the Dr’s are wrong, that the problems can be cured.

It’s against the natural order, a child passing away before his/her parents.

Our children teach us much, my special little man has made me the person I am and I have to say I like me a lot more now since he’s done some work on my beliefs, skillset and attitudes!

No-one ever leaves our lives the same as they were before they came into them, we are forever changed by our love for these amazing kids.

So thank you, Harry, for everything you’ve given to everyone who knows you.

Life is far too precious and short to be wasted

Is it Friday Yet?

Three years ago we started down the application process for NHS continuing healthcare, as Sam met the criteria we thought it would be a relatively straight forward process to apply, then wait for the answer.

The plan was to apply for funding to cover overnight care for Sam, so that J and I could get some much needed sleep knowing our boy was being cared for and was safe.

OK, so that bit was pretty easy… the decision came back relatively quickly to say that yes, he DID meet the criteria and yes, he was eligible for the funding.

And then the fun really began.

Now don’t get me wrong, while I adore that little chap totally I am not blind to his issues. I know he has very complex medical needs and that his care needs are at the more significant end of the spectrum shall we say.

But never in my wildest dreams did I think that the social care and health care teams would have such an uphill battle to find someone, anyone, prepared to take on the contract.

After many months of searching, advertising and chasing agencies, we were eventually contacted to say there was a care agency who were interested in taking on the contract.

Hurray, we thought.

They came round to the house to meet us and Sam (que me manically cleaning and tidying the place first, I can almost hear the nods of agreement from all the Mums reading this), and said there and then that they were able to meet his needs, and would be in touch in the next few weeks to sort out the details of dates, times etc.

And that, we thought, was that. Sorted.

Wrong again.

The next contact we had was many weeks later, when after hearing nothing we contacted the poor woman in charge of the healthcare team; apparently the agency had been in touch with them the day after meeting with us to say they wouldn’t be taking the contract for two reasons; firstly, the road to get to our house wasn’t suitable for their vehicles; its unadopted and had too many potholes.

Secondly there was a power cable lying across the floor that was a trip hazard (my laptop was charging).

She was more than a little bit shocked to hear that the agency hadn’t had the decency to contact us directly.

All this was around 6 months ago, and due to life getting in the way the application has now lapsed. Gah.

Once more Sams lovely social worker has come to the rescue – so now we’re filling in the paperwork, again, to restart the process and this time we’ll be looking into having a personal health budget, to allow us to select who WE feel is right to care for our boy.

For now, if anyone wants me, I shall be hiding in a pillow fort with my boy until the world slows down!

How, ‘Elf on the Shelf’, has Helped my Daughter with Autism

There seems to be quite a new tradition among families for something called Elf on the shelf.

From what I understand the story goes that Santa sends one of his Elfs to check children are behaving leading up to Christmas Day, but meantime the Elf, or on some cases even Elves, misbehave to the amusement of the children every morning.

I am all for having fun with my children so thought about joining in on the craze. But like most autism mums I decided I had more than enough on my plate last year to find time for Elf adventures.

But then my daughter came across Elf on the Shelf herself this year. She watched something on you tube about it and heard friends at school talking about it. She already knows she is different and is desperate to be included.

So I reluctantly agreed and searched for an Elf.

I decided if I was going to do this it would have to be used to help my daughter rather than just for the sake of it. So I invented our loving and giving Elf to help my daughter with autism through the added stress of December, a month she usually really struggles with.

Day 1 of Elf was simple with Elf giving her a little money for her school fair but also giving her two snacks for school so she could find a friend and share one.

Having something to give to another child is such a simple way to help her overcome her social anxiety so even though I knew she would struggle to speak she was able to simply hand another child this small gift.

“Elf on the shelf”, helped her to make a friend.

Day 2 involves sharing through the fact I help out a t a toddler group and Elf asked her to share some play food with them.

This helped her think about others and to be part of something social without the added stress of having to be there herself.

Day 3 Elf left her some coins and asked her to do some secret shopping on his behalf to buy for seven people of her choosing at a pound shop. This helped her with theory of mind as she had to think what other people make enjoy getting rather than something she herself would like. It also developed her independence as she paid for the items with her own money.

Day 4 we gave food to a food bank helping her to be part of a bigger community.

Day 5 Elf helped her in a very personal way as her brother with very complex health needs had a trip to hospital which upset her routine and caused her anxiety to soar. Elf knew just the thing to help her refocus so left her a book just for her.

And so each day she wakes up to a note from her Elf with a task or a message of some meaning which in turn helps her to focus for the day, helps encourage her to be socially aware and allows her to feel included in society.

By using a kindness and giving Elf her confidence has increased and she has become far more aware of all that Christmas means. The most exciting thing for me now as we enter the double figures in Elf days is that she herself is now looking and thinking for things her Elf could do. She has suggested taking clothes she has outgrown to a charity shop tomorrow and helping mummy around the house.

The whole concept of the Elf being naughty never sat well with me as her brother has severe none verbal autism and she hears too many people call him naughty daily. I never ever wanted her to think Santa would not visit her brother.

But it is possible to turn anything around and I am so proud of how my daughter has developed since introducing our own brand of Elf on the Shelf.

She said to me yesterday,

“Isn’t Elf amazing mum! There’s no way YOU could think up all that!”

And that is the magic of it all right there.

Are you struggling to get your child to do therapy or cope with anxiety around Christmas? Maybe an Elf and a little Christmas magic could come to your rescue too…

Special Needs Families: Why Don’t You Want Us in Your City?

We went ice skating at the Cathedral and it was truly magical.

Finding an activity that is accessible to all of us as a family is always a joy, as there are way fewer than we would like.

Being able to take both of my children ice skating was incredible and not something I had envisaged would be so easy.

One had ice skates on, the other wheels!

You see, Hadley has Cerebral Palsy and is a full time wheelchair user.

He was overjoyed at being able to wheel himself around on ‘snow!’

And his twin sister, Erica, could hold on to his wheelchair and feel a bit more stable. Their faces were a pure delight!

The four of us (hubby came too) left the ice feeling suitably worn out and hungry for a nice family lunch with Hadley and Erica’s grandparents who came to watch.

In fact the kids were complaining of being ‘starving’ and ‘needed something right away!’. They are six years old.

So we popped around the corner to a nice cafe and ordered something delicious for all of us. Food was fab, it was busy, but everyone was fed and watered and having a good time.

But here’s where things started to go downhill.

Inevitably we all needed to use the loo after lunch.

It had now been a couple of hours since our arrival in Winchester and almost three hours since we left home.

This of course was pretty easy for most of us (despite the queues as it was a Saturday and very busy everywhere as you would expect).

But Hadley needs a bench and a hoist to use the toilet. Something that is not provided in standard accessible toilets.

Now Winchester has a Changing Places facility, located in the Discovery Centre I believe (and I’m told it is great!).

But that was the other side of town from where we were enjoying the Christmas markets and skating and from where my son’s need for the toilet became urgent.

It was way too far for us to walk in the freezing cold with a little boy who was desperate for the loo and his exhausted sister. And it would have taken even longer in the crowds.

So he had to, ‘go’, in his nappy.

And we had to find a public convenience closer to the Cathedral and lay him on the toilet floor to change him.

It was not a pleasant end to our day – especially not for Hadley, as you can imagine.

Who would be happy about lying on a disgusting toilet floor? And it really hurt my back, lifting him from his wheelchair and back up again.

He’s getting exceptionally heavy. As he should. He’s a growing boy.

But without Changing Places and Space to Change facilities EVERYWHERE, this is what happens to people.

Every single day.

People that others love with all their hearts.

People who endure more than you and I could ever imagine.

People who should be as valued as everyone else.

People who are sometimes some of the most vulnerable in our so called caring society.

They are faced with this danger and indignity all the time.

Whilst clearly we applaud the Discovery Centre for it’s wonderful facility, it was still of no help to us on that day, being located on the other side of the city.

The other issue is, that this Changing Places toilet is only open during the day. After 5pm on a Saturday it is closed.

So does that mean that no severely disabled people are welcome in Winchester in the evenings?

What if we had wanted to stay and see the Christmas lights and have an evening meal as a family.

We did want to do that by the way, but after having to go through yet another change on a toilet floor, Hadley became restless and cold and understandably wanted to go home.

So we left your city where we could have been spending some more of our hard earned cash, went home and watched a movie, gave both of our children a big cuddle and consoled them, telling them we’d see some Christmas lights another time, somewhere else.

I urgently beseech you to install other public Changing Places and Space to Change facilities in and around the city. And to become accessible to all at all times. I also urge you to actively encourage businesses, leisure venues and restaurants etc to install suitable toilet facilities for all of their customers.

There are 11.9 million people in the UK who are registered disabled. Many hundreds of thousands of them have additional toileting needs and require the use of an adult sized changing bench and hoist to use the toilet.

Why would you not want them in your city? They have a disposable income valued at £212 billion!

More important facts:

The Equality Act 2010 states that ‘Service providers are required to make reasonable changes – including to the built environment – where a disabled customer or potential customer would otherwise be at a substantial disadvantage.’ Surely having to be changed on a dirty toilet floor is a huge disadvantage?

The Equality Act 2010 also requires: ‘That service providers think ahead and take steps to address barriers that impede disabled people.’ It also says that they ‘should not wait until a disabled person experiences difficulties using a service’. 

Well that’s a bit late now isn’t it? 

I did write to a representative at your council almost a year ago to raise my concerns about the lack of facilities in Winchester and never received a reply. I do hope that is not reflective of your future accessibility plans for the city.

I will very much look forward to your response.

Yours sincerely

Sarah Brisdion

Agreeing to Disagree: Parenting Kids with Special Needs

Nearly all of them have been with us through one crisis or another and I trust their judgment.

And they are all willing to take my opinions on board when discussing treatments and care plans.

All but one, anyway.

I have just never got along well with Orthopaedics.

Which is a real pity, since between Miss Z’s progressing scoliosis (curvature of the spine) and osteoporosis (fragile bones), we spend a fair amount of time with orthopaedic surgeons.

And I spend a fair amount of time during and after seeing them, wanting to bang my head against a wall.


Well, I generally find that they have very little interest in Miss Z as such.

She’s rarely acknowledged and we have had appointments where the doctor hasn’t even examined her, just looked at the X-rays of her spine or fracture. And they also seem completely taken aback if I suggest anything.

They have an approach to treating scoliosis, and it is the approach they will use, and nothing else will be considered.

Now, to be fair, I don’t think all orthopaedic surgeons are terrible people.

After all, that one on Grey’s Anatomy seems nice enough…

But seriously, I have met parents who like their child’s orthopaedic surgeon.

And I know that at the end of the day, scoliosis management is all about trying to prevent the curve from progressing for as long as possible before spinal fusion surgery becomes the only option.

I also know there are kids out there who have had surgery and are much happier for it.

But I guess I just need this information wrapped up with a bit more attention to public relations (PR) – or in my case, parental relations.

So, I’ve been wondering for several months now how Miss Z’s orthopaedic surgeon would react when I told him that I had decided to try something new.

For several years now, at the recommendation of the orthopaedic surgeon, Miss Z has worn a hard, plastic spinal brace (or a thoracolumbosacral orthosis (TLSO) if you want to get technical about it).

Initially, when she was small, the brace worked relatively well.

But as she has gotten older and bigger, we’ve faced a number of problems.

The most concerning for me are that the brace puts a lot of pressure on her PEG (which subsequently has caused problems with her feeding tube) and because it is cut so low on her hips, it makes it uncomfortable for her to sit upright or lean forward.

After discussing the problems with the spinal brace with various therapists, I decided to try a different approach – a Second Skin splint.

It is kind of a mix between a onesie and a corset. In other words, it is made from a soft, flexible material, but has boning along the back and sides to properly support Miss Z.

After a technical measuring session, Miss Z received her custom-designed splint a few weeks ago.

She sits lovely and tall in it and seems completely comfortable, too.

Plus, it has the benefit of not putting as much pressure on her PEG (since it isn’t hard plastic pushing into her tummy) and she’s able to move better thanks to the flexible material.

I counted it as a success.

But I wondered what her orthopaedic surgeon would think.

He was, after all, the driving force behind the spinal brace and I didn’t think he’d like me deciding on a different approach.

In the end, it was a comical appointment.

I explained why the spinal brace wasn’t working for us. He acknowledged the problems with the brace.

I explained how Miss Z now had a Second Skin splint and offered to show it to him to compare how it controlled her scoliosis.

He ignored the offer and suggested how to improve the spinal brace.

I offered to compromise, saying that I was happy for Miss Z to wear (a better-fitting) spinal brace at night but that during the day she was going to wear her Second Skin splint.

He didn’t comment. Instead, he organized an appointment for Miss Z to be casted for a new spinal brace.

When we left the appointment, I was initially frustrated with the conversation – or lack thereof.

But then I remembered advice from Miss Z’s first paediatrician, at the start of our special needs journey.

I was telling him about my frustration at repeated attempts to test Miss Z’s hearing.

I didn’t think anything was wrong with her hearing, but in order to get the audiologist to declare that, Miss Z had to pass a hearing test. She had taken the test several times and always failed – not because of her hearing, but because the test was beyond her developmental capabilities at the time.

After listening to my rant, the paediatrician commented, ‘You know, you don’t have to do the test if you don’t want to. She’s your child, you are the one who gets to decide.’

Obvious, I know, but it was an epiphany moment for me.

I’d never before considered NOT following the recommendations made by Miss Z’s long list of specialists. I had always assumed that as specialists, they knew best.

Five years into special needs parenthood, I have learned that sometimes I do know better than the specialists. Not because I have greater knowledge of their specialty, but because I have a much, much better knowledge of my daughter.

So, I’m OK with the orthopaedic surgeon’s approach.

He is doing what he believes is best for a child with scoliosis.

But I am going to do what I think is best for Miss Z.

Seeing the Blessing in Being a Parent of a Disabled Child

I am NOT glad my son is disabled.

That would be ludicrous!

If I could take away all the pain and fear, anxieties and outside ignorance then I would in a heartbeat!

But that is not possible so instead I look to the positive.

I’m not the mother I envisaged I would be,  I thought I would be spontaneous, cool  (hopefully I’m still a little of that, possibly) whizzing my children off here and there for new adventures.

I still take my children on adventures but with routine in tow.

But this old vision was from the young, pre children version of me, before I knew my path was going to be a whirlwind of bumps and cuddles.

I like the mother I’ve become more than the one I thought I was going to be.

I’ve discovered patience I never knew I had.

I’ve learnt to see beauty in things I may previously overlooked.

I have empathy flowing from every pore because I now ‘get it!’

I really really get what people are feeling because the chances are, I’ve felt that too at some point.

I now don’t care for the perfect ideal, instead the real!

But even more than that, even bigger than the changes in myself.

My typical children are growing up seeing a disabled person not as a disabled person but as a person.

They will have watched their parents deal with more than possible at times yet stand together.

Witnessed as a person falls to their knees exhausted with carrying a heavy load, instead of walking past with eyes to the ground, we hold out our hand, let them lean on us until they can stand then walk together.

This little lad that came into our lives 9 1/2 years ago and turned our everything not just inside out but up, down, spinning in circles and zig zagging off to crazy land.

He’s been a beautiful blessing.

He has no verbal voice but teaches things of such value.

He has a vision impairment but sees the beauty in the mad world we live in.

When caring for a disabled child it’s all consuming so it can feel impossible at times to look beyond what we have to do everyday.

It’s easy to get lost in the mass of hospital appointments, meltdowns, medical care and ridged routine.

Yet in between every rocky mountain is a breathtaking ravine.

Five Special Christmas Gifts for a Special Needs Parent

It seems as a parent I still get asked this.

I tend to answer like most parents do with a simple ‘Oh I have everything I need already thanks’ or the soppy mum variation of ‘My kids are all I could ever want and more.’

Both are true to an extent.

My life is very full of smiles, blessings, love and joy but as a full time carer for two children with extra needs life is also very full of other things like hospital appointments, meetings, therapy and endless paperwork!

So what would be good Christmas presents for a special needs parent like me?

How about the following:

1. A Listening Ear

We all have our own burdens to carry and none of us are without problems in life, yet so often we become so engrossed in our own busyness we forget to take time to listen to others.

Giving me your time to just talk while you listen without judgement or trying to ‘fix’ things is one of the greatest gifts I could get all year round.

Come visit me at home while we have coffee, or sit with me in the hospital waiting room.

I may seem like I am coping but silently I pray for someone who cares enough to listen to my worries and my struggles.

If you can’t physically be with me being at the end of a phone or even letting me let off steam via email or message is such a precious gift.

ou may not be able to wrap up your ears under the tree but if you could loan me them sometimes that would be amazing.

2. A Shoulder to Cry On

Some days are just overwhelming.

Some mornings by the time I have managed to get the children safely to school I am exhausted and emotional.

Lack of sleep, worry for the future and constant battles on behalf of my children become weary.

I, like so many other special needs parents, long for a safe and tender place to cry where we feel free and accepted to pour out our hearts.

We need that release in order to gain strength to face another day.

We need to let the stress come out in our tears knowing there is no shame in showing weakness.

Could you be those shoulders?

Will you let me cry without question and hand me the tissues without needing to tell me I am over reacting?

That would be a gift that can not be measured this Christmas.

3. An Encouraging Word

Few people truly realise how negative the world of special needs parenting can be.

Forms ask for things your child is unable to do, assessments focus on your child’s shortfalls, teachers comment on how your child is not hitting targets like the others.

Hospital appointments bring news that breaks your heart and even the simplest appointments like the dentist are utterly draining.

Then add the guilt that your child can’t talk, or walk yet or play like other children.

While other children achieve at sports, or drama or art your child excels more at loud outbursts, screaming endlessly or staying awake all night.

Encouraging words are few and far between in my world so a little text, or message or a simple smile goes a long long way to helping brighten my day.

An unexpected card saying ‘I care’ is like an oasis in a drought.

It is beautiful, precious and priceless.

You simply can’t give this gift often enough to a special needs parent.

4. Practical Help

I would never expect anyone else to have to see to my children’s personal needs nor do I expect anyone to be up all night long with them.

However, there are some small very practical things though that anyone can do for a special needs parent that can make a huge difference.

How about holding the door open when you see them pushing a wheelchair?

Or holding the lift to save them waiting longer with a distressed child?

If you see them carrying a child into a car seat in the supermarket car park why not offer to take their trolley back for them?

These small gestures of kindness mean the world to someone who often feels ignored or invisible.

Kindness and practical support never ever go unnoticed to a special needs parent and they restore our faith in humanity.

Christmas is an ideal time to make a special effort to help the special needs parent as places are busier, louder and more chaotic than usual but remember a little help all year round would never go amiss.

5. Finally; Be Respectful

It is so easy at this time of year when the weather is awful and time is tight to just park in that disabled space for two minutes while you just nip in for bread.

You may never ever think of doing that at any other time but for me as a parent of two disabled children this is a time when I need those spaces even more so.

The same with the disabled toilet.

I understand this time of year means most public toilets have queues and you don’t mean to upset anyone.

However, these facilities are so precious to families like mine and our loved ones need that space and privacy to have their personal needs met by someone else.

We don’t have the privilege of being able to wait.

Please don’t push that disabled trolley away in your haste to get to the smaller one at the back.

Having a soaking wet trolley may be annoying to you but to those of us who rely on specialist seating for our disabled children having an icy, snowy seat prohibits us from going shopping at all.

Your thoughts and respect at Christmas mean a lot.

I realise now, I do actually want a few things for Christmas this year.

I want friendship, time, love and respect and those are not things money can buy, yet they are the most special and perfect gifts any special needs parent could want not just at Christmas but throughout the year.

Could you give me any of these?

Do you know a special needs parent who could do with some Christmas magic?

Let them know you care today.

It could make this Christmas the best one they have ever had.

Kids with Disabilities: ‘I Just Know He Will!’

The other day as I carried our three year old to the car my older son looked at me and said, ‘Why do you always carry him?’

The questions continued as I strapped his brother into his carseat and situated his feeding pump.

‘When will he walk and talk like me?’

‘Is he going to run?’

‘When will we hear his voice?’

I buckled up, took a deep breath, and got ready to give him the truth.

‘He might not honey.’

The look I saw on his face when I uttered those words was one I won’t forget.

He looked simply heartbroken. Shocked and heartbroken.

He glanced at me and asked ‘Even when he’s a kid?’

I looked at him and said ‘Yes, even when he’s a kid.’

I went on to tell him that he may never walk and talk like us, but we’ll keep trying.

I told him that his brother wasn’t born like him.

I reminded him that his little brother’s muscles weren’t as strong as his and he has to work extra hard to do the things we all simply know how to do.

He sat there quietly in his booster seat and let it all sink in. What he said next made my eyes well up with tears.

‘Well I just know he will Mom.’

His confidence and positivity warmed my heart. Tears streamed down my face as I continued to drive.

Not out of sadness but out of pride.

Our son’s optimism and declaration gave me great joy and reminded me that we are doing something right.

You see, this is how we treat our youngest. We treat him as if he will.

We are determined to help him achieve his utmost potential.

To be honest, it was extremely hard for me to utter the words ‘He might not.’

That’s not how we live each day but I knew I had to be completely honest with him.

We know that there is a possibility that some achievements may be out of reach.

We are fully aware of the reality of our son’s genetic condition, PMM2 CDG. But living in the ‘Can’t’ or ‘Won’t’ isn’t an option for us.

We just know he will. Whatever that may be, he will.