When the List of Labels Just Keeps on Growing

We spend many of our waking hours flying the flag for those who are different, not better or worse, just different; we champion every milestone no matter how small because we know the effort and determination that went into achieving it.

And we know that our children are as beautiful, as wonderous as every other child in this world.

It is still hard however when the Dr’s have to add another label to our child’s medical file.

Seriously, you can tell when Sam’s notes arrive because they arrive on a trolley, all by themselves!

There are a lot of notes for my boy, folks.

Really, a lot.

Most of Team Sam as they are nicknamed have been with us since the very beginning.

We have added a few new names fairly recently to that Squad of medical specialists and I will not lie, it has been difficult to accept that.

Until recently we have carried on happily enough, seizures have been pretty stable and his height and weight continue to behave beautifully.

But as he’s grown his low tone is causing more and more issues that need to be dealt with; scoliosis for one, which we know will be progressive.

Increased saliva production (hypersialorrhoea) has recently caused more issues so a new medication was added in.

As parents, we are grateful that these issues are identified swiftly and dealt with to keep our boy safer for longer; but don’t for one-minute think that we don’t sob into the darkness when everyone else has fallen asleep.

Today while filling in yet another form which asked for a list of Sam’s issues I picked up his most recent hospital discharge letter and at the sight of that ever-lengthening list of co-morbidities I fell apart.

For the first time in a long time the anger and pain overwhelmed me completely.

So much to deal with for such a little boy.

And yet, so many others face the same battles day after day, and I am lucky to still have my boy with me.

So, as I have done so many times before, I put back on my armour and push the emotions down as far as they will go.

Now is not the time to cry.

Now I have to fill in this form, applying for funding to make my boys life better; and that is far too important to allow emotions to get in the way.

Island Living

As someone who grew up conscious of and frequently involved in the special needs community, the loneliness that individuals with special needs as well as their caregivers may experience has always been on my radar.

Yet, when my husband and I chose to become parents to children with special/medical needs through foster care three years ago, we were greatly and painfully caught off guard by the island we found ourselves on.

Perhaps we were naïve.

Perhaps we were shell-shocked after being freshly graduated from a small-town Christian college which excelled at community or maybe we believed that we would be exempt from isolation, as we are both outgoing personalities who naturally attract and pursue meaningful relationships.

Regardless of why or how, the truth of the matter is that we found ourselves lonelier than ever before as we limped along, learning to navigate the waters of parenting children with special needs.

We ached for others to see the immense beauty we were surrounded by and also to understand the depths of our weariness and struggle as we poured ourselves out for these children.

We still have times of feeling quite alone, but the last few years have not been without a plentiful harvest of the fruit of learning.

Here are seven ways I have learned to combat loneliness while caring for children with special needs:

Adjust Expectations

I believe some of my deepest hurt in the beginning of my special needs parenting journey came from not realizing the great degree to which existing relationships would change.

There were many people that I assumed would be more than happy to continue walking alongside us—they would enjoy getting to know our children and still ask me out for an occasional girls’ day or cup of coffee.

I slowly realized that not only does becoming a parent alter relationships but becoming a foster parent can really ruffle some feathers and becoming a foster parent to multiple children with special needs….?


So, I’ve changed my expectations.

I do my best to keep up with old relationships, but I do not expect the majority of people to understand or desire to be involved.

I cling hard to the few who have offered a full embrace and do my best to no longer ache over ignored invitations or offers to socialize that never come.

Be Vulnerable

When my husband and I first became parents, I remember being so fearful of sharing about much of the heartache we experienced, including loneliness.

I didn’t want to cause friends and family to feel like we were blaming them or that they were required to dive fully into the life we lived.

Also, because we were the ones who chose to be parents of foster children and children with special needs, our expressions of struggles were often met with warnings and urges to step back instead of encouragement and support to carry on.

I felt like I needed to prove that we could handle this.

I have now come to a point where I trust our calling and don’t rely as much on the approval of others.

While there will always be people who do not understand or encourage, I realized that choosing to pretend like we do not need help robs those who are able and willing to support us of that opportunity.

I now choose to be honest.

I tell people that what we do is very hard and I am open about my loneliness at times, especially in settings where I know those listening truly care and desire to help.

It was amazing to discover a few friends who were ready and waiting on the sidelines, aching to be a part of our unique story, just waiting for permission to meet needs we had not made known.


Sometimes people don’t mean to pull back but are driven by fear of making a mistake while interacting with your family and its unique needs.

Consider hosting an “open house” in your home.

Invite friends and family over and allow them to spend time with your children in their element.

Create handouts with tips and instructions for caring for your children, in the event that any of these people would ever be interested in assisting with your children’s.

Take time to show off the equipment your children use and maybe demonstrate a medicine/feed/treatment routine if needed.

Make it fun and highlight the ways your family and children are just like any others.

Keep it light by offering snacks and a low-key environment, but also make sure to answer questions and educate.

An event like this may help reduce or eliminate the anxiety others feel and the fear of the unknown about your children’s needs.

Resist Comparison

“Comparison is the thief of joy.” ~Theodore Roosevelt

When I am in my own home surrounded by my own people, I am SO HAPPY.

With six children under six and three with severe special needs, our daily life is more crazy and chaotic than I can even begin to explain to those on the outside.

But it is so very beautiful and so full of joy.

It is also hard—VERY hard.

But it is OUR hard.

At the times when I do feel myself struggling with loneliness, it is often due to my comparison of my life with the lives of others.

Social media, while an amazing tool meant to connect and bring together, is also a highlight reel that brings into the open all that we didn’t even know we wish we had, driving wedges and wounds in deep.

Setting a few specific, short times in the day to spend a few minutes on Facebook or Instagram, versus access all day long, has revolutionized how I use my time and fosters a mindset of contentment.

Without a constant scroll through social media and its endless flow of the selfies of friend groups taking a weekend trip, visiting national parks, or grabbing a meal together, I don’t even know what I am missing and I am much more likely to lean into and fully experience the beauty of the life I live with my own outside-the-box crew.

Take Advantage of Non-Typical Socialization

While I try to limit technology at times, I also find that technology allows me to feel not so alone in many ways.

While coffee dates and hiking trips may not be frequent occurrences, things like phone calls, messaging, and video calls allow me to connect with friends and family without having to find caregivers or even change out of my sweats.

I also have found great encouragement through online support groups.

When a child with special needs comes to us, I search online for support groups associated with the child’s conditions and find a wealth of information and listening ears—treasures hidden in the hearts and minds of a group of people I may never meet in person.

I have also cast aside my expectation of every time of socialization involving no kids and being able to leave the house.

I have been known to invite friends over for a cup of coffee while kids nap or to the park to stand and talk while we watch the kids play.

Lean on your faith

For me personally, my faith is what carries me day in and day out.

On days when I have hit rock bottom, I find the strength to take one more step in the knowledge that all that I do is for a greater purpose far beyond myself.

On days when I know that no human eye sees all that I do in a day and no heart understands how lonely I feel, I repeat the phrase, “His (God’s) eyes are on me.”

I believe that His eyes are on me, even if no one else’s are, as I love my children in the hardest hard–giving bath after bath, cleaning up vomit for the fifth time in a day, administering medications and treatments and tube feeds, barely surviving after yet another sleepless night, cuddling little ones after seizures, and wondering what the future holds.

I am never truly alone.

Reach out First

I believe one of the greatest means of combatting loneliness is to never stop thinking of others before yourself.

It can be easy to sit and wait for someone to be the first to initiate contact or support and I have done this far too often.

If you feel lonely, allow it to spur you on to reach out to someone else.

Choose to be the friend first.

I like to think of what I wish others would do for me and then I choose to be the first to do that for other people—send the first text, offer the first invite, send the first encouraging card.

There is something powerful in not being the victim of loneliness but instead allowing it to be the tool that places you in the shoes of others as the agent of change.

Being the caregiver for someone with special needs is a hard, amazing, excruciating, beautiful role.

It is unfortunate that it often times is a lonely role as well.

But perhaps, as we bravely take on day after day, loving unconditionally, rejoicing in the victories, rising from the setbacks, and revealing the incomprehensible beauty of those who stand out, someday, the world won’t be able to resist leaning in with open arms and hearts.

Formula v’s food?

A lot of medical staff and others still don’t accept this as a suitable way to feed a tube fed child, so I thought I’d explain a little about how we got to where we are.

Sam has had a feeding tube since he was 4.

We had planned to go down the blended (BD) diet route, but his medical team weren’t keen, the tube was very slim, so we agreed to trial formula initially. First feed went in… and returned, projected across the room with impressive force.

A second formula was tried. Then a third.

By the time we found a formula he would tolerate and keep down, we were all exhausted and Sam was miserable. A month on formula and my boy was a shadow of his old self.

Thin, pale, severe reflux, vomiting, diarrhoea.  A problem with formula supply lead to us accidentally starting BD; I bought some pureed banana baby food and carefully, slowly, syringed it down his tube.

Immediately, his eyes lit up. Encouraged by this, I kept going.

By day two of his new regimen he had stopped vomiting and his bowels were improving.

His eyes were brighter and he started smiling again.

Sam’s dietician and consultant were amazed at the change in him, at which point I ‘fessed up; Sam was doing far better on BD than on 100% formula, however there were issues with school not being allowed to give BD in case of tube blockages etc.

So, we came to an agreement – Sam would have three BD meals daily, and two formula top up feeds during the day while at school.

We have never looked back.

Today Sam is healthy and happy. He is developing well, and we have been able to tweak his diet to remove problematic foods and to improve his seizure control; best of all, unlike children who are entirely formula fed his weight gain is normal, following the curve you would expect for an orally fed child.

Most importantly, since moving to BD his hospital admissions have significantly reduced and recovery from colds etc., is far quicker.

BD isn’t for everyone, Sam has no absorption issues and is tube fed purely because of an unsafe swallow, however it is time that the benefits of this alternative diet are looked at and accepted at a higher level in the medical and dietetic community.

After all, when having to justify feeding real food to our children over synthetic formulas makes no sense at all.

The Humanity Quotient

The thing I’ve been reading this time, which started me thinking, was a short article about how recent studies into Rett Syndrome and intellectual impairment have shown that clinicians have been mistaken all along about the degree of intellectual impairment that Rett Syndrome brings.

This is because they base their assessment of intellectual impairment on the person’s IQ score.

But an IQ test requires those being tested to be able to indicate a response, so a person who can’t talk, or move their arms to tick a box, or to point, is at a distinct disadvantage.

Rett Syndrome affects (among other things) the ability speak and the ability to control arm movements. But when researchers modified some standard tests so that eye pointing, or eye gaze communication, could be used by the test subjects to indicate their response, what they found was that the degree of intellectual impairment was often much less than clinicians had traditionally assumed.

These findings have implications for other conditions that leave those affected unable to speak or move, such as Motor Neurone Disease.

I know very little about either Rett Syndrome or Motor Neurone Disease; what piqued my interest in the article was the idea that clinicians — doctors and the like — could be wrong about the level of intellectual impairment present in a particular condition.

You see, I have a son with Down’s Syndrome, a condition firmly characterised in the minds of many by a lack of intelligence – a low IQ.

And a low IQ is (wrongly) synonymous in the eyes of the world with a lack of ability to think or learn, and a lack of ability to understand, or even feel, emotions: the stereotypical ‘happy’ personality of people with Down’s Syndrome is dismissed as being due to stupidity, by the trite phrase ‘ignorance is bliss’ (by people who don’t realise how much more ignorant they are themselves).

Some even associate it with a lack of awareness of physical sensation: more than one parent I know of has been asked (by doctors) if their child can feel pain.

At worst, a low IQ is thought of as rendering the person ‘animalistic’, lower in humanity than those with a higher IQ. This leads not only to wrong assumptions, but to ill-treatment and discrimination.

I was surprised to find that on my son’s EHCP his level of learning disability is described as moderate; from what I have observed in him I would have thought it was mild.

I assume, therefore, that the description is based on his IQ, which suggests a score of somewhere in the range of 35-50 (a score of between 90 and 110 is considered to be the average).

Yet he is inquisitive and alert little boy, who learns quickly by observation and imitation. At age nine his sight-reading ability is comparable to that of a typical ten-year-old, though his grasp of meaning and context is not so advanced and needs some more work.

He knows how to write, but low muscle tone means that his fine motor skills are relatively poor: it’s more difficult for him to grip a pencil and his fingers quickly become tired, leading to deteriorating letter formation (I really must teach him to type).

He has a good memory, especially for people’s names. I suspect, based on what I have observed, that he has a good memory for other things, too.

Those things are harder for him to put across, though, as they require the use of expressive language rather than just one word, and he struggles to organise the words into the right order and push them out of his mouth, even though he knows what he wants to say.

He notices, long before anyone else in the house, if I am unwell, or just not my usual self.

All of which makes me wonder: what exactly is IQ, and how does it relate, in real terms, to intelligence?

By definition a person’s IQ is a number representing their reasoning ability, measured using problem-solving tests, compared to a statistical norm, or average, for their age. So, basically, it’s just a test score.

Standard IQ tests measure:

Spatial ability

Mathematical ability

Memory ability

Language ability

However, the tests do not differentiate for, or take account of, environmental factors. As discussed above, conditions which limit the ability to speak or move make taking a standard IQ test next to impossible.

Impairments in hearing and vision can also affect a person’s ability to perform in the test, and can interfere with the ability to acquire the information needed to take the test successfully.

I would also suggest that factors such as the ability to concentrate, or to sit still, might well have a bearing on a person’s performance.

Coming from a background that limits your opportunities for learning is also an environmental factor that will affect test performance.

It is no coincidence that the estimated average intelligence for people with Down’s Syndrome have been trending steadily upwards in recent decades – since we stopped shutting them up in institutions, and allowed them to have a family life and an education instead.

There are some things that standard IQ tests do not measure, although they are qualities which could be considered to form part of a person’s overall intelligence.

These are:

Creative ability

Social skills

‘Wisdom’ (what constitutes wisdom, anyway?)

Acquired abilities

Emotional Intelligence*.

*Some psychologists believe that standard measures of intelligence (IQ scores) are too narrow, and do not encompass the full range of human intelligence.

They suggest that the ability to understand and express emotions can play an equal, if not more important role in how people fare in life.

People with Down’s Syndrome often seem to demonstrate an innate ability to pick up on, empathise with, and respond appropriately to, the emotions of others, and can sometimes be acutely sensitive to unexpressed emotions, such as the ‘atmosphere’ in a room.

Very likely they would score highly on any test that allowed them to express their emotional intelligence. Many supposedly very intelligent and intellectual people would not do so well.

I’m sure we can all think of one or two eminent philosophers who might fall into this category.

Standard IQ tests do not measure adaptive behaviour, either. Adaptive behaviour is a measure of how well people function in their environment, e.g. quality of day-to-day living and work skills.

Researchers have found that children and young adults with Down’s Syndrome have significantly higher adaptive skills than their low IQ scores would suggest.

When we take all of this into account we can see that IQ scores alone are not an absolute measure of a person’s cognitive abilities.

In any case, neither IQ scores, nor perceived intelligence, should ever be regarded as a measure of a person’s worth or humanity.

For clinicians to make mistaken negative assumptions about cognitive ability based on a person’s ability to successfully take a standard IQ test is far more grave an issue than it might at first seem.

For too long, they, we, have conflated IQ scores, intelligence and cognitive function to produce a grotesque, dystopian, tariff of level-of-human-ness.

Those whose IQ scores put them at the bottom of the tariff are dismissed as being unable to think, to learn, unable to feel and understand emotions or physical sensations, and unable to appreciate and enjoy life as we do; they are dismissed as less than human and treated accordingly. Or not treated.

This is why people with learning disabilities die, on average, 27 years younger than the rest of the population; not as an inevitable consequence of their disability, but often due to delayed treatment, lack of care, abuse and neglect.

It’s why approximately 90% of babies found to have Down’s Syndrome prenatally will be aborted.

Perhaps it’s also why Jeremy Hunt couldn’t spare the time to answer an Urgent Question about the LeDeR Learning Disabilities Mortality Review.

All because IQ scores are falsely considered to be the measure of a person’s level of human-ness and worth.

Time to Push Changing Places to the Next Level

But the time has come to ask for more help – that’s where you come in!

You see, for the past 3 or so years, there have been a group of very dedicated campaigners working hard behind the scenes, and sometimes in front of them.

But when it is always the same people asking for change and the same people contacting the press and the media to tell their stories, nothing is going to change.

There are over ¼ million people in the UK who need to use a changing places toilet, but only about 20-30 faces sharing their stories and constantly contacting businesses and services asking for changes.

So we need help!

We need more families to come forward and share their stories, to contact the places they want to go and ask them to install the facilities they need.

To go to the press and get media coverage and of course to tell everyone they know that this is a problem that needs fixing.

Without more voices, this campaign is going to plod on as it has been doing for the last 13 years.

And yes, those 13 years have seen 1104 changing places installed, but do we really want to continue campaigning for one toilet at a time?

If people are seeing different families in the press or hearing different stories on the radio then they might start to realise this isn’t something that only affects 20-30 families, it is a problem on a huge scale and it needs fixing.

So if you are part of a family that needs changing places toilets, or you know someone who does here are 5 things you can do this week to help push this campaign forwards.

1) Share your story on Facebook / Instagram

– Share a photo of the family that need the facility, you don’t have to show your loved one on a toilet floor to give it the human element.

– Explain the problem, share it as though you’re telling the story to someone who has no idea what a changing places toilet is.

– Tag some big campaigners pages such as The Mum On A Mission, Brody, Me & GDD and of course the Changing Places pages

– Use #PantsDown4Equality so we can find your story

– You could even tell your story in a video format to get more interest

2) Contact the press

– Your local paper are pretty much guaranteed to print your story, they are looking for great stories to fill their pages and what better story is there than a story of a family with a disabled person who is being discriminated against!

– Make sure once they have run the story, you then share it online and even forward it to national newspapers to get even more coverage

– You could even consider contacting magazines to share your story.  Real life stories go down so well, and you might even end up being paid or getting a make-over out of it!

3)  Speak to your MP

– Regardless of which political party you support, this is the time to speak to your elected MP and the candidates from other parties too.

– Ask your elected MP to raise the issue in parliament as a matter or urgency

– The candidates from the other parties want your vote, so get their commitment to the changing places campaign in return for that.

You could even ask them to record a video showing their support for the campaign just like this Labour party candidate did recently.

There are lots of other things you can do of course, but hopefully these 3 things will be a great way to start!

And of course, contact other campaigners for ideas and guidance if you need it, I’ll always respond to questions about this.

SEN – Online Safety and Gaming!

This is probably a sound all too familiar from children’s bedrooms up and down the country.

Bedrooms with young children or living rooms or back seats of cars!! Technology is now more accessible and mobile than ever before and this is not a fad or trend that will go away.

As a nation, we are all too dependent now on technology and it’s embedded in literally all that we do.

I had an issue with my WI-FI at home and for 2 hours literally nothing worked, the sky box couldn’t function without it and my 9 year old didn’t know what was happening like it was “end of days”.

“CAMERON – you are so lucky, there was no internet when I was your age”………. Cue the blank expression, the lack of understanding in his eyes and me feeling older than ever.

You see as a child with autism, my son’s world in his mind is very black and white – there are no murky areas of grey.

Realistically though there are more grey areas than black or white.

My son plays Roblox as do all his friends.

I was very worried about allowing this application on his computer and there were measures I had to take initially to safeguard my son.

Firstly, I purchased and installed on his laptop “Kaspersky Safe Kids” it helps you mentor your kids on device usage time and guide them on safety – so they only access the types of website, content & apps you decide are appropriate.

You’ll also get expert advice – from psychologists – to help you explain security issues to your kids.

I told Cameron that under NO CIRCUMSTANCES was he to chat to anyone online, as soon as any chat boxes pop up I want to check out if it is his school friends.

Everything was fine and he was shouting at me periodically to check the chat boxes which were all above board and innocent.

Then I got a message in my son’s journal from school which stated,

“Cameron has advised us today in RE that he has 200 friends on the Robox platform and does not understand the safety issues with this.”


I penned a defensive reply to his teacher explaining that his internet usage is monitored and he knows not to chat to anyone online or tell anyone his name and personal details, furthermore that my job role entails parts of cybercrime investigations so as a family we were quite savvy.

I once told him that he could not talk to strangers – he replied “well If I ask them their name and tell them mine, they won’t be a stranger”!!

Yes this is true but not how it works.

I asked Cameron why did he have so many friends online……. Cue his logical reply: “mum, you told me not to chat to people you did not say I could not add people as friends!” – and this was true!

I sat him down to explain that he does not need all these friends in order to play his game and that I wanted him to go through and remove all the people that he does not personally know.

There was confusion and he felt like he had done something wrong and was upset that he now only has 9 friends.

As a child with SEN who is high functioning, so can understand to a degree what his friends are into and when he feels he is missing out.

This is now my grey area you see, to be able to give him some trust and confidence to grow but to protect him from a world that too be honest even I don’t fully understand.

I Took My Pants Down for Disability Equality!

And last week I joined many other parents & carers in London to raise more awareness and take this campaign to the next level.

We’ve had enough of being ignored or having our requests ‘managed’ by promises of trials (Tesco I’m looking at you) and the time has come for major change.

No longer are we happy to allow our disabled loved ones to face such inequality when it comes to using the toilet.

My son, William, is now 9 and he’s getting heavier by the day.  If he needs the toilet when  we are out and about it is a major ordeal.

I need somewhere to lay him so I can remove his clothing & nappy and some help in lifting him there & then onto the toilet.

But that help doesn’t exist.

In the 10 miles around my home there are 2 changing places toilets so in some ways you could call me ‘lucky’ but they are both in the main town, which doesn’t help when we want to visit our supermarkets or go to the cinema.

A great friend of mine, Sarah Brisdion, organised a sit in with a twist as she called on campaigners from across the country to join her on Baker Street to sit on the loo all day.

So on Friday I joined her and other campaigners from as far afield as Scotland and sit on the loo with my pants round my ankles!

The day started with me forgetting to put on two pairs of pants, not ideal when I was meant to be taking one pair down to sit on the loo!

And then my train got cancelled which left me over an hour late!

Luckily everyone else was far more organised than me and had come fully prepared!

Extra pants were on hand, there were amazing costumes and even cake representing the Bristol Stools chart (if you know, you’ll know!)

The event was great, passers by seemed rather confused at first but were soon educated about the issue and agreed to sign petitions, share photos and use the hashtag #PantsDown4Equality to help raise more awareness.

We were joined by press & news crews who interviewed campaigners and the event was even tweeted about by Adam Hills of The Last Leg fame.

By the end of the day we were all shattered but on a complete buzz, knowing we had done a great job of spreading the word and making people think, not to mention meeting some other amazing people we’d only had the pleasure of speaking to online for the last few years.

So will it make any difference?

Who knows, but the more people who know about how the lack of changing places toilets, with adult sized changing tables and hoists, the better.

If even one business owner saw our campaign and decided to upgrade their facilities then that makes it a success in my eyes.

But on a national scale, what we really need now is government intervention.  We need building regulations to be amended so that these facilities are compulsory in large buildings.  We need big brands such as Tesco & Sainsburys to stop making excuses, we need cinemas to stop shirking responsibility and we need Joe Public to get behind us and demand equal rights for disabled people.

Here’s how you can help:

Sign this petition.
Get onto twitter and use #PantsDown4Equality to tell your story and call for action.

If you want to see more about the event, I hosted a facebook live from the event which you can watch here.

Return of the Seizure

I love the responses I get from people who have seen something in my posts that have resonated with them.

I also love reading the blogs of others who post for Firefly. One topic I see discussed a lot is epilepsy and seizures.

Up until now I have been lucky enough to never warrant writing about this topic.

Until this month.

When Amy was born she was having constant seizures.

Eventually day by day in NICU we would be given more and more good news.

“She’s no longer ventilated.” “She’s needing less oxygen.” “She can breathe for herself” and so on.

The seizure medication was eventually weaned down and by about day 10 we thought we had said goodbye to seizures forever.

We were told there was about a 50% of seizures returning… cerebral palsy and seizures are almost synonymous with approximately 1 in 4 people with cerebral palsy having some form of epilepsy.

Amy is 4 now and naïvely I felt we had escaped the whole epilepsy journey until 21 days ago.

It was just the average school holidays morning. I was in and out of Amy’s room preparing feeds and meds.

The best place to keep her in the morning is relaxing in her bed with toys and videos – this is the only place I know she is fully safe unless sat in her wheelchair with me.

I walked into her room to find her blinking unusually.

“What’s up Amy?” I asked. At this point I thought she had something in her eye and was blinking to try and fix it.

Then as I analysed her further I realised she was foaming at the mouth, eyes and mouth twitching on both sides, and her whole body trembling as if she was vibrating.

I was absolutely gobsmacked. I had no idea what to do.

I was home alone with her and felt completely hopeless. My heart was pounding and I felt shaky.

Why was this happening? Did I do something wrong? Why would I leave her out of my sight at all?

She was showing no signs of stopping so I immediately began to film her with the iPad whilst simultaneously calling for an ambulance.

I stayed as calm as could even though inside I my heart was breaking and chaos spun round and round in the pit of my stomach.

My poor girl. She has been through enough already. She has enough challenges to face.

Eventually the trembling stopped. She didn’t fall asleep but she looked exhausted and disoriented. By the time the paramedics came she was what I now know is “postictal”. (The altered state of consciousness after an epileptic seizure.)

When we got to hospital I was so glad I had filmed the whole ordeal. Two paediatricians watched the video and agreed yes, definitely a seizure. I am told it may be a one off, but it is likely to happen again.

Since the event it had me thinking about Amy’s behaviour in the week running up to the seizure.

She had developed some new movements and new habits and I had been finding myself saying to people “she’s like a different child at the moment. Something isn’t right, but I just don’t know what.”

Fast forward a few weeks and we have now been trained on administering rescue medication which she will now take with her everywhere she goes. We have had an EEG and are awaiting results. And we have met one of our local epilepsy nurses.

She explained to me that there are about 40 different types of seizure and listened to my every whim and concern.

I explained the new behaviours I had seen and explained how I thought I was being paranoid and over anxious. She validated every concern I had and assured me that I am just being a good mum and should always trust my instincts.

It was then that Amy demonstrated the same behaviours and movements that I had just explained.

Recently, she has been having periods of going quite red, thrashing a bit, and then pulling her hair. By pulling her hair I mean REALLY pulling her hair, such that we recently had to get her hair cut very short and regularly have to put socks on her hands.

She has also started to do a lot more movements with her mouth and also sudden extreme changes of mood.

I had sort of rationalised all of these behaviours as things like sensory seeking, exploring her movement, or frustration.

But it could perhaps be that she is having focal or partial seizures where she is seemingly fully alert, but something doesn’t quite feel right and scares her, and this then sets off her hair pulling.

The hair pulling seems to be her reaction to feeling scared as usually a sudden loud noise will set off her startle reflex and make her pull her hair.

It has been difficult trying to find that balance between over analysing everything she does, and actually assessing her knowing that something could be happening. So now we are waiting for a 24-hour EEG and a possible introduction of regular medication.

So, it has been a huge learning curve for me. It shocks me to think how I felt that day when I came in and found her unresponsive to think that I have met people whose child can do this 100s, sometimes maybe 1000s of times a day. It amazes me what parents of children with epilepsy must encounter, and how hard it must be for that child experiencing something so terrifying and draining.

I take my hat off to everyone who is dealing with that when, I bet to some people, our experience looks like a good day seizure wise!

I hope that this encounter with seizures is just a one off, and that those rescue meds never need to be used.

But part of me also fears that this is just the start of what is to come.

I am humbled and amazed once again though by the attentiveness, care, and help we have received from paramedics, hospital staff, nurses, just everyone.

I am grateful also to our amazing family, especially my parents who rushed to help us get home when we were stuck in hospital without Amy’s wheelchair and wheelchair van!

Undiagnosed Doesn’t Mean, “Not Disabled”.

My daughter is undiagnosed and if I had a £1 for everyone that has made some sort of comment about the fact she can’t be that unwell if they don’t know what is wrong with her I would be extremely rich!

I think people assume that doctors know everything, that all the conditions that cause serious illnesses are known and can be identified by a simple blood test.

My daughter seems to have a list of symptoms and yet not one diagnosis.

This past week alone we have found out that when her muscles give out her heart gets tachycardic, that her kidneys are onto the next stage of kidney failure, and that she has started to have absent seizures.

All without a reason. All new symptoms to add to her complex list.

Last week we were celebrating that she has put on weight and so doesn’t need a feeding tube, the week before that we were overjoyed at the fact that we were told she won’t walk and yet she can now take 5 very wobbly steps.

So to be hit with the news that actually inside she isn’t doing well shattered us.

Life really is a roller-coaster having a child with a disability.

You have the days where you are screaming at the world at how life shouldn’t be like this, that no child deserves this, that your child doesn’t deserve this!!

Then, the next day you are singing out and so happy as they have done something so small and yet so remarkable that you are grinning from ear to ear with such pride that you don’t know why you ever doubted the universe.

Life with an undiagnosed child is exactly the same, we may not have a label on what is wrong with my girl but we are on the same roller-coaster.

A roller-coaster no one thought they would be on but here we are on it.

It is something that brings us together and when you have a child with a disability having people around in similar situations is just what we need to cope to know we are not alone, whether the disability has a label or not.