A Delicate Balance

Back in 2020 we came the closest we ever have to losing our gorgeous boy. Evidently covid was a bit too common, so my son opted for a dose of complicated pneumonia with a different bacterium instead.

Ironically, the most traumatic experience of our lives turned out to be one of the most positive, as it resulted in several long-standing issues being addressed. His palliative care consultant, who has been caring for him since he was a few weeks old, devised a symptom management plan to allow us and everyone involved in his care a clear plan to keep him in the best health possible.

Fast forward to 2023, and things have been in balance for so many months that we actually started to relax a bit. But like building a delicate sculpture or a house of cards, all it needs is one thing to slip slightly, and it threatens the stability of everything.

Since Brexit, there have been regular medication supply issues with one or more of the Dude’s extensive list of medications which he relies upon.

As strep A cases started to rise rapidly, it became increasingly difficult to obtain some antibiotics for children and you’ve guessed it, one of the medications already in short supply became impossible to source.

This medication is crucial to keep our son’s gut moving; a simple action, but one with enormous impact. Gut dysfunction means lower medication absorption, so his seizures become more difficult to manage. Constipation adds to this, plus causing discomfort (another seizure trigger), delayed stomach emptying leads to bloating and vomiting, leading to increased risk of aspiration and a dangerous cycle starts to develop.

His team have worked with us to try and work round this issue with alternative formulations but to no avail – the inevitably hospital admission due to seizures finally hit.

It has taken several months but we think we have finally found a combination of medications that works for him.

His seizures are back under control again, however the recent issues have left a mark. Our boy has had more hospital admissions in the past 3 months than he has had in the past 2 years; all at least partially the result of this one medicine supply issue.

Most of the public don’t realise how vulnerable children like mine actually are; they see the wheelchairs and other equipment and think they understand, but they don’t see the battles behind the scenes raging to keep our kids stable. For now, we are rebuilding our beautiful, delicate house of cards – and praying that the next time something changes we can keep it from collapsing entirely.

Speech Disability – Pushing Through the Pain

My heart broke today, as it has so many times before. The speech barrier is not only difficult and frustrating, but it can also be heartbreaking.

My daughter and I have a unique way of communicating, as I am sure all families with a speech impairment do. There are so many things that I understand almost telepathically. Those are the awesome days that seem to run smoothly.

I look at my daughter when there is a group of us sitting and talking, and she is so patient, and she just sits and listens. Sometimes she will grab my arm with something she wants to share and then I am her voice. I always say what I believe she wants to share, and I then verify with her that I said what she wanted me to say.

I always try to include her in the conversations somehow, I’ll ask her a question, or by saying something about her to share with everyone. I can tell, everyone kind of forgets about her sitting there. They don’t talk to her as if she can’t hear just because she can’t talk.

No one does this intentionally, but it still makes my heart sad.

When she is with her group of friends, they all hang out with her, talk to her, hold her hand, and they too have a unique way of communicating. I can see that they naturally accept her just the way she is.

This isn’t to say that other people she spends time with don’t accept her, it is just a different kind of acceptance. Then there are the challenging moments or days. We have had to play a sort of charade many times over the years when our telepathy was not working. I have to ask a lot of questions and sometimes it can get exhausting trying to figure out what she is trying to say, especially if it goes on for an entire day about different subject matters.

Then there are the moments she gets angry and frustrated and then I am frustrated and then she never gets to share what she wants to share. I put myself in her shoes (the best that I can) and I cannot imagine how it must feel to not be able to say what I need to say.

I remember a time when I was a young girl. I had some exciting news to share with at least one of my six other family members. When I got home no one was there! I was so sad and felt let down.

I just remember how lonely that felt.

Back to what happened today. My daughter and I were going out to lunch. We had decided on a place and when we pulled into the parking lot she pointed at another place. I, of course, assumed she was saying she wanted to go there instead. So, I asked her that very question only to be told “no”. Now I am really confused, she is frustrated and then I am frustrated. We sat in the car for ten minutes trying to communicate. She was just wanting to talk about the other restaurant and our future plans to go there with a friend.

Finally, we got to our seats in our place to eat and she kept doing sign language for “sorry”. I told her again that she has no need to be sorry. Then she started to cry. She cried because she wants to be able to talk like the rest of us. That is what rips my heart out. To see my sweet girl cry because she cannot talk. It breaks her heart.

The amazing part of this story is that I can count on one hand the number of times she has cried about this. She is an amazing woman with great strength. She remains peaceful and accepting.

There are many people who have a speech disability.

There are many forms of communication such as sign language and assistive speech devices.

My daughter has some finger coordination issues, so full sign language is out for her. She has a speech app that is an amazing product, but she tends to be uncomfortable using it. I’m not sure why, but I think she does not like others to wait for her, or she feels embarrassed to use it. Many of the people in her life have tried to encourage her to use it more. That is a work in progress.

The reason for this blog is to remind others that your child is not alone and neither are you. I know there are days I feel like we are the only ones on the planet trying to communicate with such great difficulty. I know this is not true, but she and I are alone in moments of struggle.

Seek out all the help you can get for communication and try to stay calm while trying to communicate. I know firsthand this can be difficult. We are all human and get frustrated. The thing is, our children pick up on how we are feeling in the moment, and it will escalate how they are feeling. I say to all of you…..be strong and calm!


My child has a rare condition. It is called Lennox Gastaut Syndrome (LGS) but it’s even rarer than that, her LGS is caused by a genetic alteration that’s super rare (my words, not the medical term). 

I managed to track down a global Facebook group for the gene about four years ago. Last time I checked there were 97 members, worldwide. That’s obviously not everyone, but it gives an indication of how unusual this is. The children in the group all present very differently, so within this we feel rarer still.

If you are not in the disability community, it can be hard to imagine that a child could have something so rare and complex that modern medicine is just not cutting it when it comes to treatment.

My daughter’s main symptom is seizures.

All types – big violent ones, long ones, drop ones, eye fluttery ones; none of these are medical terms but they help to describe them more effectively for people that are not part of the epilepsy community.

We are regularly asked by new people, often in disbelief when I explain how many seizures she suffers through, why there is not an effective treatment and if she will grow out of it. The answer to the second question is easy – no. She has a lifelong genetic condition and hers is not an epilepsy that gets better with age, sadly.

The first question however – often accompanied by the phrase ‘surely something can be done’ is a sobering reminder that we, as humans, know so little about the brain. We have a series of drugs (she’s on 4 at the moment but has tried around 10) but all are blunt instruments that are hard to evaluate when it comes to their efficacy.

We have a Vagus Nerve Stimulator (stimulates the vagus nerve which goes to her brain) which sounds whizzy and technical but again, we don’t know how much it helps. She is also on a medically-prescribed ketogenic diet.

Essentially, we’ve thrown the book at it and she still has seizures, lots of them.

Who knows, maybe if she was on no therapies she may be better, or, perhaps they are helping lots and she’d be having hundreds more seizures if she was on nothing. We don’t know, and we can’t easily test it. Rocking the boat is too terrifying and we’ve been in many worse places that we are now. So we have to plod along and keep trying with the fairly basic tools we have in front of us.

The challenge with rare conditions is that often, very little research is available on the very specific condition. There is often a lot more for a broader condition, in our case epilepsy, but epilepsies, and individual brains, have vast and intricate differences which means what works for some, may be disastrous for another.

It’s essentially a guessing game at this stage, with a bit of gut feeling for good measure.

When you sit alongside consultants and the next move in the game is a joint decision between all of you, things feel different. In some ways this feels good, you are heard as a parent; in others it feels terrifying as our unique child has touched the boundaries of medical science. Let’s hope that the future pushes that boundary further for the next generation of children with rare conditions.

What Did You Just Say?

From the rude to the ridiculous, from the insulting to the insane.  Stupendous and shocking, ignorant and inflammatory.  Here is a selection of the ‘best of the worst’ things that have been said to parents of children with disabilities. 

Which ones can you relate to? Which ones make you most mad?

Let’s start with the old favourite: “He doesn’t look autistic”.

Where do we even begin with this one!  Similar in intent to “But he looks so normal”, there is just no response that can do justice to the stigma and stereotype that this is perpetuating.   

What exactly should a person with autism or a disability look like? Such a comment can be attributed to basic ignorance, naivety, or living under a rock for the past fifty years.

Then there’s those who show envy:

I wish I got a new car every three years”, “I wish my child got free transport to school”, and so on.

Actually, I would rather he could WALK!  I would rather he could take himself safely and independently to school, like other children his age, skipping along the playground to his class while I chat to other mums at the school gate.  

I’d rather not be driving this cumbersome, oversized van past four schools before arriving at ours, seven miles away in the next town.  Every day struggling for a parking space large and long enough to extend the wheelchair ramp.

To the downright dangerous:

She’ll eat/drink if she’s hungry enough”.  One of the most ill-informed statements ever known to man.  And to make this one worse, it has even been known to be uttered by health professionals! 

Feeding/drinking/oral-motor issues are one of the most misunderstood and misrepresented phenomena in the world of children’s health, and yet one that most people have an opinion on!

The knowledge-by-association comments can be incredibly enraging:

My friend’s sister’s nephew is autistic, so I understand”, along with “my cousin has a chromosome disorder, I think it’s the same one”, and other similarly absurd sentences.  Such people are often trying to find common ground, but are entirely medically illiterate. 

However, when they proceed to deliver chapter-and-verse about the experiences of these tenuously-linked people, and depart golden nuggets of advice, it becomes extremely tempting to accidentally stamp on their foot.

Following on from the above, one thing that becomes apparent to a parent of a child with a disability, is how many amateur medical experts there are out there! I bet every one of us has been offered a plethora of well-meaning, but quite frankly, totally useless advice.

 Ranging from the mildly frustrating: “Have you tried….” [mashed banana/parenting courses/being stricter/alternative therapy] to the highly irritating: “She’ll grow out of it”, “He’s just a slow learner”, “She’ll catch up” and even “They’ll find a cure for that” (my personal favourite).

This one has a particular sting in its tail, and saddens me greatly:

Weren’t you worried about having another one?” or even “Were you offered a termination?

How does any parent begin to know how to respond to this? I can remember one time being asked this in a playground, when heavily pregnant with my second child, I pointed to my 3-year-old and said “Would it be so awful to bring another one of those into the world?” Sadly, I know I am not alone in having had anti-natal professionals offering highly loaded ‘advice’ about terminations, anti-natal testing, and ‘risk factors’.

We can’t conclude without mentioning the question that trumps all others:

What’s wrong with him?

Vocabulary is everything.  The word ‘wrong’ implies damage, harm, impairment, and promotes the construct of segregation and exclusion.  While it is not a vile word in itself, it naturally invokes an inflammatory reaction because we as parents see our children for all of their wonderful qualities and attributes, despite their difficulties. 

Let’s just finish off with a quick-fire of some more shortlisted favourites:

You must be so tired, make sure you have time for yourself

But at least she’s happy

But everyone is somewhere on the spectrum

When will he die?”

Special children are only given to special parents

There are so many more questions and comments that have been omitted from this article and I would love to hear of others that I have missed, and more importantly, how you have responded!

Let’s finish by acknowledging that the majority of people are mindful and thoughtful of what they say, and the above examples are luckily, few and far-between. 

It is also important to recognise that children should be encouraged to ask questions and show curiosity, and that a child’s unfiltered vocabulary may not always be appropriate but should not be chastised in the same way. 

Terminology and special needs parenting

I was recently scrolling through Facebook and saw a post calling for recognition of the fact that we should refer to people with autism as “autistic” as opposed to saying they are “people who have autism”.  There was also discussion about the term autism spectrum disorder (ASD) causing offence to those affected by it.

As a trained learning disability nurse, this confused me. I was taught to put the person first and the need second, for example I am a woman who has Multiple Sclerosis (MS), not an MS person. Our son is also a boy with spina bifida (I’ll not list the rest!), not a spina bifida patient. I don’t work anymore but I remember writing a lot of notes about people who “had autism” instead of saying an “autistic person”. 

The original post really gave me food for thought.

To me, this is a return of language that would have been previously known as offensive to call someone autistic instead of rephrasing this to a person with autism. A mum commented and explained to me that her son has brown hair, blue eyes and autism. It wasn’t a condition to be cured, or something to be ashamed of. I read a lot of similar comments from parents and individuals themselves who all wished to be referred to as an autistic person. Surely this is their absolute right to ask people to refer to them in terminology they find acceptable?

It made me think about all the ways people discuss my son. Conversations usually start with “what’s wrong with his legs?” or “why is he in a wheelchair?”. The worst one for me is “can he walk?” because I often find people are so caught up with the idea that being unable to walk automatically means you are unable to be happy

That’s simply not true.

So many people who are able bodied are depressed while a lot of wheelchair users are not. This situation is obviously reversible, but the point is, I doubt walking is the main deciding factor in good mental health.

Historically, people would have used incredibly disrespectful language to describe people with downs syndrome for example, which I’m not even going to repeat because it’s just so appalling to me. There was also terminology to describe those with complex needs that reduced them to being almost subhuman.

Thankfully we have moved on and learnt from past mistakes to create a more inclusive society.

Having been surrounded by disability for many years now, I am really conscious to try and learn from other people what they want when being talked to or about. The only way we can move towards better inclusion as a society is by listening to the people living that life and learning from their experiences.

The Joys: Life With My Special Daughter

The reason I write is to help others. When I started out on this journey with my baby, I was young at age 23. I would have loved to have blogs from other parents and caregivers. The more advice the better.

That doesn’t mean I would have had to use it all, and neither do you, but even if one thing helps you, then I have met my purpose. I hope all of you will use this piece of advice.

Focus on the joys! Hold onto the joy and let it bring more joy. You will be able to look back and know you enjoyed the time with your child no matter how much care is involved. Write the joys down from small things to big things because even small things are big. Take photos to look back on these moments.

I think we all sometimes get so caught up with our busy schedules and caring for our children that we can lose sight of the joys our children bring to our lives. I want to lighten things up a little bit with some fun stories, and some heartwarming things that show how much purpose our special children have.

Where do I begin, there are so many joys.

One summer, When Emma was 9 years old, we had a yard filled with dandelions. Most of us would find a field of yellow dandelions beautiful, but then we all know they are considered “weeds”, so we mow them down. Dandelions serve many purposes, including health benefits, so are they really weeds?

That summer Emma was thrilled with them. I have pictures of her pulling them and carefully holding them in one hand while pulling them with the other. She brought them to me, just as most children do. They were displayed in a vase on the table and left there much longer than their short hour-long life span.

The most memorable part of the dandelion summer was when it was time to mow. When she saw the mower start out on the path of destruction, she ran out the door waving her arms all around, and proceeded to yell “no, yellow, yellow, yellow!!!”

She was devastated, so at the time, it broke my heart. I comforted her while explaining why we mow them. This is a reminder to me, and to all of us, to look at and care about the beauty all around us, and to care for God’s earthly gifts.

We all have a purpose on this Earth.

I have witnessed my daughter’s purpose many times. One day we were at the deli counter at the grocery store. Ahead of us was a man by himself in a wheelchair. Emma was 4 years old when she walked up to this man and put her hand on his shoulder. The two of them looked into each other’s eyes and neither said anything.

My daughter is speech impaired, so she really couldn’t say anything. They spoke with their eyes. She in some way comforted him bringing tears to his eyes. It brought tears to my eyes as well and is a moment I will never forget. It is moments like these that I hold onto and that brings the heart joy.

The next joy that comes to mind is one that I hope will encourage some of you starting out.

The joy of Special Olympics.

Emma did skills in basketball, track, and bowling. She was a part of Special Olympics from elementary through high school. The complete joy of watching not only her, but her friends, was extremely heartwarming. When they win their medals or ribbons, the excitement makes it impossible not to smile.

The friendships and bonds that our children make with being a part of Special Olympics is beautiful and so healthy for them. It truly builds confidence and a passion for achievement. They work so hard but have so much fun at the same time. To be surrounded by so much excitement and happiness feels so good for everyone.

Horseback riding is very therapeutic and brings about a purpose of taking care of another of God’s creatures. Emma didn’t just ride the horses, she was taught the importance of brushing them, petting them, and visiting them. The therapeutic horses are like a big puppy dogs. They love the human that spends time with them. This brings such a wonderful feeling of togetherness and is heartwarming and peaceful.

In today’s world, there are even more activities and groups that put on wonderful events for the disabled.

Anything from movies, painting, dancing, prayer groups, and game nights.

So many things that bring our children joy. If you don’t know of any organizations such as this check with the schools. Most groups like this leave literature about themselves with the school office. Other parents and teachers are always an excellent resource.

Most of these things give parents and caregivers joy as well because they might get much-needed rest or their own outing with friends. Or maybe their joy comes from being present while their children are involved in their activities.

The last one I want to mention, which is the current joy in my daughter’s life, is the Tim Tebow Foundation (TTF) Night to Shine Prom.

This amazing prom is held once a year the Friday before Valentine’s Day.

It is such a wonderful evening with a walk along the red carpet while everyone cheers in a greeting of excitement. Then on to the free photo shoot, then free dinner, and a free DJ to play dance music. Just about everyone in the room is on that dance floor.

All of this is totally free. I know the saying is “nothing in life is free”, but this really is. The Tim Tebow Foundation gives so many disabled adults a night to be kings and queens. I cannot come up with any words to express my gratitude for what TTF does. Thank you just does not feel like enough. Night to Shine | Tim Tebow Foundation

I believe it is important to focus as much as we can on the joys in life. When we are caring for another human, we can lose sight of the joy. It seems our concerns are best met on other matters. This could not be further from the truth. The best advice I can give is to tell all of you to focus on and hold on to the joys life with your special child brings.

When food is medicine

From the age of 3, my boy has been tube fed. From the start we knew we wanted to give him real food blended to go down his tube – we’d learnt quickly that formula feeds didn’t suit him, a major dairy intolerance meant that he had gastrointestinal upset almost constantly even on the most hypoallergenic of feeds.

While his gastro/dietetics team weren’t entirely opposed but weren’t fully behind it either; it took a lot of persuading, cajoling, form filling and agreements that we were doing this against the hospital’s position before they accepted it.

You must remember that this was almost a decade ago and it was definitely seen as divergent from the accepted norm, there weren’t many families doing blended and even fewer openly admitted it!

Sam is thriving on blended. Not only does he gain weight well, but he doesn’t have a lot of the issues of other tubies (reflux, bowel issues, tissue problems, etc). Over the years, the scientist in me couldn’t resist researching links between seizures and food; dairy, soy, gluten and corn can cause an increase in seizures in sensitive individuals so we removed these to see what happened.

His seizures improved. Enormously.

His diet is phenomenal as there are very few things we don’t blend and we’ve been able to remove foods that he can’t tolerate easily.

We do add in a powdered multivitamin, a common issue for children on certain medications is that they absorb lower levels of some vitamins from their food… giving them additional support here just keeps everything as it should be.

I’ll be blunt, it isn’t suitable for every child. You can’t give blended food down a jejostomy for example. Our son’s issues were never around food tolerance or absorption.

It isn’t an easy option but no harder than making meals for any child, and the positive impact on the parents/carers of giving them back the ability to prepare meals and feed their child is enormous.

In 8+ years we haven’t had a single tube blockage nor illness due to blending; medications however have caused numerous tube issues.

Where once it was seen as a militant act to give a child real food through a feeding tube, it is now becoming much more accepted; if families want to try a blended diet and there is no medical reason not to then surely, they deserve the option to try?


Ah, self-care. That brilliant two word ideal that’s flung about by everyone from influencers to our children’s healthcare professionals. I am pretty sure nearly all parent-carers (parents who care for a child with a disability) have heard the phrase ‘you can’t pour from an empty cup’ at some point. While well-meaning, I have an issue with that phrase. It assumes the main reason for looking after yourself is so you can look after somebody else. But we all have a right to be happy, and feel well, full stop. If that makes us better carers then excellent, but let’s start with us.

With this in mind I wanted to share some things that have helped me:

1. Walking

Getting out. Walking for a purpose, to get a pint of milk; or walking just to walk. Normally my walks are accompanied by a podcast or lovely long voice note from a friend (see 2.). Extra points if there is sunshine.

2. Voice notes.

This is not everyone’s cup of tea but I wanted to share this in case it helps someone. Since 2020, I have been in two ‘voice notes’ groups with a few friends in WhatsApp. Each group has two close and very trustworthy friends in. Our voice notes have progressed from a few minutes to, in one group, 40 mins on average.

It’s initially a strange feeling, just downloading thoughts and talking into your phone, but over the years we have come to realise what a hugely valuable, and unique way of communicating it is. No interruptions, a chance to fully unpack. You then get a response from a friend who has time to think about what you said and is replying when it suits them. No more ‘we must catch up soon.’  It doesn’t have to be deep and meaningful stuff, much of our conversation is on what we are having for tea.

3. Saying yes.

Covid got us all used to staying in as much as possible. I have found myself saying no to more things than I have realised since. Lately I have said yes to coffees, dinners at friends, and meeting up. It makes a huge difference and there is nothing like face-to-face connections.   

4. Moving.

Whatever that looks like. I run (not far), do yoga and have just joined my local gym for classes. I did my first spin class this week, my legs nearly flew off but it was fun, and I could think of nothing else while I was doing it. 

5. Counselling.

We are lucky enough to be able to pay for counselling, but some services, such as CBT can be accessed through the NHS. It helps me enormously.

6. Medication.

We know that self-care is needed, but finding time as a parent carer can be hard. Trying something, however small, is a good place to start.

Celebrate the Uncelebrated

May we celebrate the children who see the things that we don’t see.  Who hear the sounds that are silent to us.  Who touch the things that we will not.  Who speak the words that we dare not. 

Follow the child that explores the world without legs.  Watch the world through the eyes of the child who cannot see.  Talk to the child who has no voice.  Learn from the child who cannot be taught.

Let us follow the children who seek out the rain and the gales, the storms and showers.  Who find joy in the crunch of icy grass and in the clamour of hailstones on rooftops. 

Let us not feel self-conscious of our children who prefer the park gate to the swing or slide.  Who favour wildlife over humans. Who choose to run but won’t walk, who will bounce but won’t sit. 

Encourage the ones that care not for toys, but who make their own play

Who delight in tipping cereals onto the floor but won’t eat them from a bowl. 

Let those children show us how to discover the world through their own eyes and not through the filters we wear. Let them teach us that beauty is found in the fire in our eyes, not in the make-up that surrounds them.

Embrace the child that wears wellies in the summer and flip-flops in the snow.  Who listens to Christmas songs in July and still believes in the magic of Santa at the age of 14.

Let us acknowledge that teacher who measures a child’s success by their smiles, and measures their strength by their spirit.  Let that teacher teach us all.

Let us not recoil from the child whose grasp is too firm, whose kiss is too wet, whose voice is too loud.

Congratulate the children who sing but may never talk; who swim but may never walk.

May we take the weird out of weird. Make the alien into acceptable. Change the odd into enigmatic.  Take those children and hail them. Share them with the children of today who will become the adults of tomorrow.

Celebrate the uncelebrated.