In Disability, We Find Strength and Abilities

Strength is a characteristic that my daughter has displayed since before her birth. 

With many odds against her, she entered the world as a fighter. 

A rare genetic disorder, accompanied by an array of medical issues and disabilities, has taken many things away from her. 

While she is unable to speak, walk or participate in most activities that other five year olds enjoy, she has an abundance of STRENGTH

Instead of fixating on her disabilities, I am amazed by her limitless ABILITIES

She has the ability to light up a room and melt every heart with her sweet, innocent smile.

She overcomes obstacles everyday with grace and determination.

She has the ability to fight, without losing spirit.

With no intention of surrendering, she is able to tenaciously work towards colossal goals.

She has the ability to teach others of courage and bravery.

She has the ability to inspire.

Without verbalization, she is able to communicate a love greater than most people can begin to imagine.

She has the ability to cause others to want to do better, and to be better.

I was terrified last year when she underwent a major surgical procedure.

To hopefully prevent early onset arthritis, she had two major hip surgeries, Dega and VDRO Osteotomies.

With this experience, for the first time in a long time, my strength waivered considerably.

Seeing her hooked up to monitors, incapacitated and completely immobilized weakened me.

Watching her suffer a seizure after remaining seizure-free for twenty-two months felt defeating.

Thankfully, she emerged victoriously from all the stress that her little body endured, and she began the road to recovery. 

With every passing day, she became stronger. 

I was reminded of how well she takes all things in stride, even the hardest challenges that life throws her way. 

She helped me find my own strength again.    

Watching her sail through intensive rehab therapy, eight weeks after surgery, I saw a true warrior.

A little girl with a fight in her soul, up against the adversity of learning to crawl again.

She had the mighty courage to meet that challenge.

She didn’t cry or wince; she worked diligently and pushed her way through.

The great struggle of physical therapy after being immobile for eight weeks brought out the great toughness in her.

The love that I have for this little girl gives me strength to move mountains.

Whatever it takes…Because of her, I have the ability to charge ahead and to find hope in every situation.

Our Journey From Ideal to Real

My plan didn’t start off too well with an ill-fated marriage that lasted less than two years.

After several years in the wilderness I finally met the man that was put on this earth just for me.

We eventually fell pregnant but not before many agonising months of tests and uncertainty.

I started to ponder excitedly over our future child.

I still had faith in my fairy tale whereby my child would be remarkably fantastic, but I allowed myself to become a little more realistic.

I conceded that it didn’t matter if they were not the most gorgeous-looking child, the top of the class, or a trophy-winning athlete.

I acknowledged that child birth was going to be painful, and that motherhood would be draining and life-changing.

However, my optimism remained intact and I felt, like most mothers-to-be probably feel, that I was immune to the heart-breaking and life-changing scenarios that we are only vaguely aware of, in the periphery of our lives.

When I was due to give birth, I remember the age-old phrase of ‘as long as they are healthy’ making a few appearances, but this was just lip service and we didn’t really give any consideration to what the words represented, or the alternative.

The moments that followed Jenson’s birth defined the rest of our lives.

After a flurry of panic, machinery and swift moving doctors, my bundle of blue and grey bones was placed in my arms.

He gazed up at me and my life was complete.

I had my movie-moment: I cried, my husband cried, the baby cried.

It was a cacophony of delightful bliss and mounting anxiety.

He was rapidly surrounded by a gaggle of specialists.  The first, most noticeable thing was his birth mark; a squiggly purple blemish that patched its way from his foot up to his buttock.

It will always stay with me that my first thought was will he get a girlfriend?

Little did I know that my initial anxiety over this unsightly imperfection would soon be eclipsed by much more onerous concerns.

I often reflect back on how shallow this thought process of mine was, but I see that it represented my pre-motherhood naivety to the special needs world in which we now live.

As we counted Jenson’s fingers and toes and drank in our brand new son, we soon noticed the distorted positioning to his left foot, and the unnaturally clenched and overlapping fingers on his right hand.

As he opened his eyes to gaze at his mummy and daddy for the first time, we noticed that his right eye was larger than his left, and he had asymmetrical features.

When he didn’t take naturally to feeding, his high palate and very narrow mouth were brought to our attention.

The list of medical concerns grew as the hours and days went on.

Nevertheless, we left the hospital a few days later in a state of hazy bliss to embark on the start of our new life as a family of three.

For the first few months, we lived in a mist of new baby fever where our new little darling was our entire world.  The numerous hospital appointments, and well-meaning health visitors, were merely a rude disruption to our otherwise perfect family life.

The unrelenting referrals, appointments and tests started to become tiresome, with professionals poking, prodding, photographing, postulating, prognosing and pondering.

We tolerated this parade of strangers with the underlying confidence that soon it would just be a bad memory and blissful family life would be resumed.

In a world where everything was new to us, we had no idea how far from the, ‘normal’, new-born arena we were.

Alas, Jenson’s seemingly isolated problems didn’t simply disappear, as I had innocently anticipated.

Looking back over that time, it seems incredible that we didn’t recognise or give credence to any consideration for something more onerous.  I look back and see how naïve we must have seemed to those on the outside.

My husband and I had been existing in a bubble of perfection: Jenson had his little problems that we considered to be simply a transient phase that we needed to endure.

I don’t remember us having any conversation in the context of ‘what if’; we genuinely believed every little problem Jenson had was a compartmentalised issue that would resolve itself, and that each was mutually exclusive.

We continued to address his problems with the attitude that they were finite and fixable, and no one, not even health professionals, suggested that we should prepare ourselves for an alternative scenario.

Amazingly, we continued in this manner up until Jenson’s diagnosis, at 13 months.

Suddenly everything fell into place and all of his individual issues could be attributed to an extra little rogue chromosome in each and every cell of his body.

As much as we felt like we had been hit by a truck, we also felt a sense of relief for having a reference point, and an explanation.

I see now that the journey through the first 13 months of a pre-diagnosed Jenson was a gentle gradient into the world that we now live.

It was a kind and temperate exposure to the truths and tears that we have become accustomed to.

Our world as we know it is so far removed from the ordinary world that we could not have survived unharmed without that gentle acclimatising journey.

Our reality now is a world of special needs, hospitals, therapies, funding, education plans, mobility aids, meetings.

But we do normal things too! We go on holidays, we go to the park, Jenson goes to nursery, we go to work, we play with train tracks and diggers, we splash in the sea.

We just have our own bespoke and individualised ways of doing these things.

The bottom line is that this is all we have ever known, and this life was somehow divinely chosen for us.

We are not in a position to reflect on how differently things might have ended up, or how much easier life could have been.

We are not interested in these scenarios; this is our life and this is wonderful.

These are special times with a very special child.

We cherish every minute of Jenson’s life, in spite of, and because of, his special genes.

A Perfect World from an Autism Perspective

Buildings would have fewer and less noisy fire alarms. 

There would be no such thing as bullies. 

Zero-tolerance policies for bullying would actually be enforced – to the utmost degree. 

Kindness and understanding would reside in the hearts of everyone. 

There would be more sensory-friendly activities to participate in.

There would be more video games available for and geared towards individuals with Autism.

There would be a texture-free food that is packed with vitamins and tastes just like vanilla ice cream.

It would be served in every restaurant and sold in grocery stores all over the globe!

All automatic doors would open only by a switch that you control, and they would only close when you again hit the switch.

No doors would open or close too fast – they would all operate slowly.

At sporting events, air horns would not be permitted to signal the start of the event. They would be replaced with a quieter alternative.

Headphones or earplugs would be acceptable accessories, anytime. People wouldn’t judge or stare because someone wears them out in public.

Educational films to enlighten the public about Autism would be shown in movie theatres everywhere for FREE.

There would be meeting facilities in every town where kids and adults on the Autism Spectrum could interact. There would be video games to play there and everyone would accept each other.

Everyone would be treated as a best friend.

People wouldn’t judge or form an opinion of others, based on a diagnosis.

They wouldn’t assume that someone is any less of a person because of their disorder.

Wonderful schools would exist and be easily accessible to individuals with Autism.

These schools would have massive sensory rooms, trampolines and flexible schedules. There would be long periods for recess.

Learning would be facilitated with computers and iPads.

Any person of any age, at any place on the Autism Spectrum would be invited to attend.

We wouldn’t have to fight so hard to gain access to necessary therapies and programs.

Therapies would be more affordable so that no one would have to go without them.

The excruciating waiting periods for them would disappear.

Twenty-one years of age would no longer be the cut-off for individuals with Autism to receive services.

Autism does not magically vanish at 21, so the beneficial schooling and services shouldn’t either.

These ideals would make for a more perfect world….to an eleven year boy on the Autism Spectrum, and his Mom.

Meet the Campaigners: Lorna Fillingham

Lorna Fillingham believes that it should be compulsory for ‘Changing Places’ toilets to be installed in public places and that they should be included in plans before planning permission can be granted.

In this interview with Firefly she tells us a little bit more about herself and the reason why she is campaigning to make a difference.

Tell us a little bit about yourself and your family?

I’m Lorna.

I’ve lived with my partner Colin for the last 20 years and we have 2 children – Emily-May and Thomas.

My daughter is differently abled in that she cannot stand or walk unaided and is still non-verbal (she’s 6).

My son is a typical 2 year old. I’m currently not working although for nearly 20 years I worked at my local hospital, firstly as a health care assistant and then as a registered nurse.

We try to be as typical a family as we can be, we enjoy heading out to the seaside, exploring museums, going out for walks and living life to the full.

How did you get in to campaigning?

I got fed up of having family days out and having the niggling feeling all day as to where I could change Emily-May when she next needed her toileting needs met.

She’s now 6 and is a bit big for baby changing facilities (although I still do risk it), and most places we go don’t have changing facilities for adults and older children to use if they’re not able to sit on a loo.

We like to be out and about.

I didn’t want our adventures curtailed because of the lack of decent toilet facilities.

I also didn’t want a future for my daughter which involved her being laid on public toilet floors or at some point have to potentially stop going where we wanted because she’d got too big for me to manoeuvre so there was only one option left which was to fight for her rights.

Which I’m still doing to this day.

I’m currently campaigning for Changing Places facilities to be made compulsory for new public buildings as listed in BS8300/2009 which includes schools, hospitals, stadiums etc.

I’m also campaigning for Changing Places facilities to be compulsory in new and existing hospitals and healthcare settings for the use of outpatients and visitors. You can support my campaign by signing my petition here.

What has been your highlight of campaigning?

So far, it’s been the announcement that my local council (North Lincolnshire) are going to invest £90,000 in providing 10 new Changing Places facilities in the region.

Not only that but they have put a local planning policy into force which states that developers should include Changing Places facilities in their plans, so hopefully there will be many more to follow.

Myself and fellow campaigner Sarah Brisdion have emailed every council in Great Britain urging them to encourage developers to include Changing Places facilities and we had over 50 positive responses so hopefully we’ll get more around the country too.

And we’re going to go back to all those councils that didn’t respond at some point too…

Was has been your low point of campaigning?

As part of my hospital campaign I’ve been emailing hospital trusts and clinical commissioning groups asking them to look into what facilities they provide for severely disabled outpatients and visitors to access toilets.

I’ve had 2 hospital trusts respond by saying that they didn’t have space for a Changing Places facility, which fair enough Changing Places standards dictate a large space.

I emailed back asking if they would change their planning specifications for future toilet developments so that a Changing Places facility would become a reality in the future and I was told no but that it would be a serious consideration for future developments.

I don’t think a consideration is good enough from healthcare settings.

They NEED to be in place.

Feedback I have received tells me that in our hospitals some disabled outpatients and visitors are having to be changed on the toilet floor or people are self medicating in order to avoid toilet use.

This is against every policy for inpatients so it should not be acceptable for outpatients or visitors to be treated this way. I’m a big believer in the NHS, but here it needs to do better.

What would your words of wisdom be for anyone thinking about campaigning?

Know that you’re probably going to be in it for the long haul and that sometimes it’s going to feel like it’s taken over your life…

I find myself talking about toilets a lot (sometimes I can actually see people’s eyes glaze over…!), as well as Equality and what it means for us as a family.

My campaign started with a letter to my MP and a petition.

I’ve been on local radio and TV as well as local newspapers. Between us, myself and Sarah Brisdion have emailed 385 local councils and 350 healthcare settings to date as well as Government Ministers For England, Scotland and Wales.

Sometimes you get positive responses, sometimes you get negative and sometimes you don’t get a response at all.

If this campaign fails it will not be due to lack of effort…

What are your hopes and dreams for the future – in life in general and with regards to accessible toilet facilities?

That people see my child and not her wheelchair, and that parents encourage interaction rather than telling their children not to stare.

It would be good if everywhere was designed with access for all in mind too, and that definitely includes truly accessible toilets!

Who is your inspiration?

My daughter, she’s incredible, she takes what life has thrown at her with very little complaint, and usually with a smile on her face.

Without her none of this would have happened and when I begin to suffer from campaign fatigue it is her and her future that motivates me to carry on.


As Lorna mentions in her interview, existing venues are often unable to provide a Changing Places toilet due to space restraints. Firefly’s Space to Change campaign offers existing venues options to install a height adjustable bench and overhead hoist into existing disabled toilets. 

Clos-o-Mat, Britain’s biggest provider of toilet solutions for disabled and older people in and out of the home and supporter of Space to Change is on hand to advise businesses on what is possible in an existing venue.

If you are interested in campaigning for better accessible toilet facilities in your local area and/or to find out more, get in touch with us!

3.2 Things You Need To Know About Playpak

Transition: Sitting to 4-point kneeling

Possible Difficulties:

As mentioned in my previous blog children need to repeat movements many times before they are properly learnt.

Children with movement difficulties struggle to do this and may develop abnormal movement patterns in order for them to achieve different postures.

We can help prevent this by teaching and repeating normal movement patterns.

This can often relieve a lot of the frustration for children stuck in static positions who want a particular toy and can’t reach it, or who simply want to change position!

Transitions involve complex movements, varying positions throughout the body.

A child needs to be able to move their arms freely, their shoulders over their hips differently, and legs independently of each other.

No wonder it is hard for some movements to be completed!

But if we are learning the static positions and improving with the transitional postures such as side sitting and side lying, as discussed in the previous blogs, half the battle is won.


Starting with your child sitting between your legs, focus their attention to one side.

Encourage them to reach to that side turning their body and shoulders.

Help them to move their legs into a side sitting position, which will help the body to turn and reach both arms toward the desired toy.

When both arms reach over, the trunk and pelvis will generally follow. If they don’t, give a little more help to move the legs. You can then fold up your leg (to act like the horseshoe in the Playpak) and support the child in the 4-point position.

Using the Playpak we have managed to go through many early positions to help the child learn skills needed to move and become more active.

It is important to remember though, that I often work with children who will not develop in this way.

We may progress no further than the lying postures or skip individual positions due to other factors.

For example, high tone causing over-extension means we would avoid tummy time.

Because I know how important the early development skills are, I will still work on as many as possible with the child even if I know they will not reach certain milestones.

We can still work on the early supportive postures to create the best possible building blocks to give the child the best possible opportunities to succeed.

3.1 Things You Need To Know About Playpak

Kneeling and 4-point kneeling

In this blog we will be looking at how Playpak can assist with the more challenging positions of 4-point (crawling positions) and kneeling, which require greater anti-gravity control. 

The support Playpak offers can allow a child to practice these positions despite being quite a way off being independent in them.

To practice these positions your child should have independent head control in sitting, and only need minimal support to maintain sitting positions.

It will allow the child to experience new positions, which is often both challenging and rewarding for them.

Again we will discuss the various problems children face with these positions.

At the end, I will demonstrate a nice technique to help you practice side sitting and also teach your child how to get themselves from sitting to a crawling position.

As with the sitting blog, you may wish to refer back to my previous guides about earlier positions.

Many positions can be tried using the Playpak – if successful they can be repeated and if not, they can be tried at a later date.

It really is hard to go wrong as long as you remember to support the child in a symmetrical way that allows for mid-line play, whether they are looking in front or to the side.

And remember your therapist will be able to guide you on positions, especially the more challenging positions found in this Blog.

Hands and Knees (4-point kneeling)


Hands and knees (4-point kneeling) is a difficult position to master.

It requires weight balance over four separate points, and to be able to play in the position, weight must be moved sideways over one arm to then release the other.

This is how babies develop skills to transfer their weight in preparation for crawling.

If your child has never enjoyed tummy time, this can sometimes add to the challenge.

However, the head control and arm stability that being on hands and knees teaches can have far reaching benefits such as improved fine motor skills for later learning, for example to use cutlery or to write.

Children who have low tone may need extra help initially to gain head control and hold up their trunk.

Children with high tone may either straighten (extend) away from the support or bend (flex) into it, so it is important to strike a balance between challenge and ability.

If unsure about these more challenging positions you may wish to seek advice from your therapist or get in touch with us, we may be able to help.


With the trunk supported by the rolls and horseshoe preventing legs from extending or falling out of position, baby has more chance to push up with their hands and get head control.

Try to encourage baby to lift their head to look at you or toys in front.


We are looking for equal weight to be placed through arms and knees.

Once in position have a feel of your baby’s arms and legs, slightly lift a hand or a knee to feel if they have any weight going through it.

They should still be in a symmetrical position with their back straight or slightly curved, and definitely not arched backward.

The body will be working on control to hold itself level and the hips and shoulders will be gaining stability to make play, and eventually crawling, possible.

Head control will be improving, lifting and turning both ways.

As baby improves in this position, support sections can be gradually taken away, increasing the challenge.

Tall (High) Kneeling:

High kneeling is useful as baby can begin to take more weight through their pelvis.

They will start to push up from being sat on their feet, to bottom being lifted up and away.

This is using muscles we started to develop when lifting our legs away from the floor in back lying (supine).

A child needs to be able to kneel to successfully crawl and they will go through high kneeling when they learn to transition from crawling up to standing.

Again, this is a more challenging position that you may need to get direction from your therapist on before completing.

There are reasons your therapist may be avoiding this position, for example mastering the earlier skills first. 


Holding the knees together with the whole body weight going through them can be very hard.

With postures more up against gravity, children with over-active muscles (high tone) may increase further.

Appropriate support needs to be given to prevent W-sitting, which is a position where the child is sat with knees bent in front and their feet by the side of their bottom, toes pointing away from the child.

This position is bad for hip development, and can often become habitual.

If you see your child adopting this position simply swing their legs around so they are pointing forward, or push their knees and feet together so they are kneeling on top of the legs as opposed to the side.

Use Playpak to give support to the side of the legs and to maintain weight through the knees, allowing the child to push up with weight going down through the knees.

It will be difficult for them to initially push themselves up to high kneeling and they will need to rest their trunk on the support.


Using both horseshoes the body can be given enough support for baby to lean over.

The strap can hold the bottom slightly though we don’t want to restrict too much the opportunity for them to push up onto knees.

Toys can be placed in front which may encourage more of a 4-point position.

The trunk is nicely rested on the support and there is no over-the-top effort to hold himself up, or arching of the back.

A small roll can be used to help baby keep their bottom off the feet slightly and encourage a more upright kneeling position.

We want to encourage the baby to actively push themselves up onto their knees lifting their trunk away from the support.


Initially your child will only be able to rest their bottom on their feet.

We want to encourage them to actively push up onto their knees and hold their trunk upright.

We can play with toys such as balls and blocks to encourage weight through the arms with pushing games or weight through one hand whilst stacking with the other.

This will simulate more of the activities completed in 4-point and tummy time positions.

Some children may not tolerate tummy time or crawling positions, and work in kneeling can help with developing skills missed from those positions.

This however can be complicated and if you are unsure, you should seek advice from your therapist. 

Recipe for Weight Gain: Tuna Salad with Walnuts and Raisins

For those kids who do have trouble gaining weight, eating foods that provide plenty of calories and protein can be important.

This recipe for tuna salad provides a dense source of calories by including tuna packed in oil (rather than water or brine), nuts, dried fruit and mayonnaise.

Served with crackers and fruit juice, this would be a great meal packed full of calories and protein!

Tuna Salad with Walnuts and Raisins

Serves 4


– 6-ounce can tuna packed in oil
– 2 hard-boiled eggs
– ¼ cup onion, chopped
– 2 tablespoons sweet pickle relish
– 2 tablespoons yellow (or black) raisins
– 1/4 cup walnuts, lightly toasted
– 1/3 cup mayonnaise  (or more, if desired)


1. Open tuna and drain off oil.
2. Mix drained tuna with eggs, onion, relish, raisins, walnuts and mayonnaise.
3. Refrigerate until serving.

Longdown Activity Farm Opens Accessible Changing Room

The Changing Room facility contains equipment that includes an adult-sized, height adjustable changing bed, lifting hoist, and adapted toilet, and gives visitors who have additionall needs the dignity and privacy that most people take for granted.

Sarah’s 5-year old son Hadley, who has cerebral palsy, is often faced with the undignified and unsanitary situation of being changed on urine-soaked toilet floors because standard toilets simply don’t meet his needs.

As a result, Sarah is campaigning for better disabled toilet and changing facilities in public places on behalf of Hadley and 10 million others in the UK who have additional needs.

Sarah has been working closely with Bryan and Dawn Pass, owners of Longdown Activity Farm, she organised a fun ‘Dung Heap Challenge’ which raised an impressive £4,000 through the efforts of local sponsors and friends, and advised on equipment and housing.

Sarah also approached The Barker-Mill Foundation who kindly donated a further £2,500.

Sarah said:

“Standard disabled toilets do not meet the needs of hundreds of thousands of people with disabilities. It is a fact that very few people are aware of, unless they directly face incontinence and mobility issues.”

“I am very grateful to Bryan and Dawn Pass; this additional facility will add to the sterling visitor experience that they already offer to individuals with disabilities.

Longdown Activity Farm have shown just what a positive difference this facility will make to so many people’s lives and I so hope that other tourist attractions, shopping centres and many other places open to the public will follow their wonderful example.”

Longdown Activity Farm owner, Bryan Pass, added: “We care deeply about being as inclusive as possible and so we are excited to be able to offer such an important facility to our customers with additional needs.

We are one of the first attractions in the New Forest area to install an official Changing Places facility for its visitors and that’s something that we are very proud of.”

The Changing Room facility is available to all individuals visiting Longdown Activity Farm who have additional needs or who have a need for the equipment.