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. 

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 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.

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.

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.

*Trigger Warning: Discusses death*

At 100 years of age, my Granda sadly died recently surrounded by his children in his own bed free of pain or distress. It was what I would consider a “good death” as both his granddaughter and a trained nurse.

It was such an achievement to live to 100 years old and he was an extraordinary man who lived a very interesting life.

I’m Mum to 8-year-old triplets who lost my paternal Nanny in 2019 when they were a little bit too young to understand the “finality” of it all.

When their Great Granda died, it was definitely more deeply understood by Ben and Chloe, although Jacob struggled with the concept due to his brain injury (acquired hydrocephalus secondary to spina bifida).

I reached out to a child bereavement charity who offered excellent support and suggested books and other resources to help explain what it all meant

Sadly, Jacob didn’t really seem keen to engage with any of it and seemed quite disassociated with what was going on. They were given the choice if they wished to go to his funeral or not, and they chose to go.

On the day of the funeral, I explained to Jacob especially that there would be a coffin there. He inevitably asked what that was and meant, which entailed further discussion.

It is really so hard to know how much detail is appropriate for a child of 8 years old, never mind his added learning disability. He seemed to have a degree of understanding but became quiet when we entered the church.

He held my hand through the whole service and was just so quiet.

Anyone who knows him would laugh at that since Jacob is very rarely quiet!

When the coffin was taken out and we all went into the next room for refreshments, Jacob burst into hysterical tears.

It went on for what seemed like a very long time and my heart really ached for him. I think seeing the coffin, and understanding the significance of that, finally hit him.

All I could do was sit with him quietly and be there in case he wanted a hug or to talk.

He eventually calmed down and became his usual bubbly self, but I think sometimes there is a temptation to hide the reality of death from children, especially those with additional needs.

While it is every parent’s choice how much to tell their little ones when big things happen, I try to always be upfront and honest with my three.

I obviously censor things to a degree and have to alter how I tell Jacob at times, or repeat the message until it sinks in for him, but I’ll keep doing that because I truly feel that it is teaching them all about the full range of human emotions

How do we identity ourselves? I think constantly about identity and how we are perceived. I pay probably too much attention to wondering about the perception of complete strangers. What do they think about me when they see me?

I know that ultimately it doesn’t matter what a stranger thinks, but I think what eats at me is the very incorrect perception that families like ours are given everything on a plate and don’t have financial constraints and are in some way freeloading.

It is far from the truth and I always feel on the defensive even when I know the majority don’t feel this way. I have this constant need to feel understood and instead of stares or pity I just want for all of us to be equals, on a level playing field for all, and to be treated with kindness and not judgement.

Our identities are said to include our values, beliefs, and our personalities.

It also encompasses the roles we play within our families and in society. It includes our hobbies and our interests and many other things. I often feel that for families like ours – a lot of this is sort of lost.

Our priorities are a little different. Our perceptions of life are likely somewhat altered by our past experiences and our current challenges. It can entirely change you as a person, for better and for good.

We may have just spent a week in hospital – all plans cancelled, our worlds upturned. We may be exhausted from the 10th consecutive night of broken sleep. We may actually be perfectly fine and just wanting to live as “normal” a life as possible.

We are like shape shifters, adapting to whatever is thrown at us next; often with no warning. I always think that when I am out with Amy they will see a “disabled child” and a “parent carer”.

I have read before that carers very often feel they lose their sense of identity

The role of carer is severely underpaid. There is no annual leave, there are no sick days, there is no special pension scheme. It’s easy to feel undervalued and underappreciated. A depleted self-worth can affect how you feel about yourself and your role in society.

My life is very much Amy centric. I think for most parents their child is their main focus in life, or at least one of them. When your child has high medical needs and relies on you for 24 hour care it is hard not to let that role define you.

I remind myself regularly, I am not just “mum” (as I am so often referred to by many grown adults!), I am Ceri-Ann. 

I am a parent carer, I am mum, but I am Ceri-Ann first.

Amy is Amy. Yes, Amy has a disability and various diagnoses. But before she is a “disabled child”, she is a child. She is her own person.

Identity is so often defined by what you do for a living. I disagree with this wholeheartedly. So many people work a job to pay the bills and don’t necessarily do something that they are passionate about.

It’s a difficult one for me because I am privileged to be Amy’s mum and carer; and yet I do yearn for that “normal” life (if there is such a thing.) I miss being able to clock out at 5pm and be rid of my work responsibilities for the day until tomorrow.

I am on the clock 24/7. She could be at respite, school, the hospice, anywhere, but I need to be ready on a moment’s notice. I am like the 4th emergency service… but to just one person.

I miss the camaraderie of office life. The brew runs. The pointless “this could have been an email” meetings. The social aspect. Even back then, I didn’t identify myself strongly with my work.

Whilst I was passionate about doing my job well, it didn’t define me.

And yet as a “medical parent” or whatever I am; this seems to be my whole life. I think non stop about the next Amy related thing I need to deal with.

I think constantly about advocating and what I can do to raise awareness of accessibility and make a small, positive difference in what can sometimes be an incredibly frustrating world.

I must remember that above all of the admissions, admin, phone calls, appointments, meds, therapies, interventions etc I am also loving girlfriend, nature lover, animal lover, rock music lover, gamer, coffee enthusiast, pizza lover, tree and plants lover, reader, writer, podcast addict.

I am so many things. I am caring, anxious, a bit exhausted, a bit silly, an overthinker, a rambler, a bit of a complainer (sorry!).

Don’t lose yourself

Behind the role of nurse, doctor, physio, dietician, speech therapist, etc you are your own valid, amazing, hard working person.

Amy is determined, hard working, feisty, cheeky, clever, funny, caring, sweet. She is so many things. She is a nursery rhyme lover, lover of the outdoors, lover of songs, lover of toys, lover of interaction.

She is all of the superlatives – I am biased of course. She is complex and not just in her health. She is not to be ignored, not to be written off, and just as important as everyone else.

So yes. You may look at us. You may pity us, empathise with us, stare at us, or maybe just outright not understand us. But we matter, we are important, we contribute, we are valued, we are a multitude of things.

We are not what we appear to be on the surface. We have many layers. We are all complex. We are all human. We are all fighting for our place in this world. We all want to belong and be equal and accepted.

I recently supported an old friend through some worrying hospital tests for her child. They were similar to ones we’d gone through for my daughter who has a rare and severe form of epilepsy and a learning disability. I found myself offering reassurance; not that everything would be ok with the tests (we did not know that); but that she would cope, whatever the outcome.

In the early days of my daughter’s diagnosis, I remember thinking I would not be able to cope with parenting a disabled child. That was when I was imagining what life may be like and what we may be dealing with. In fact, the day to day reality has probably been even more extreme and challenging than I could have imagined. Perhaps the most surprising thing then, is that we are ok.

Life is good, we are happy.

It can be hard for anyone not in the SEN world to imagine that a life with daily seizures, hospital stays, emergency ambulance trips, cognitive regression, and some seriously challenging behaviours to manage could be a happy one. But our life is happy. Sometimes I find myself looking at other families, families who do not have a disabled child, who on the face of it have the ‘perfect’ set up and still find myself surprised that they seem no less stressed than us, and no happier.

I now know why; it’s hidden in something that those in the non-SEN world will never get to experience

In our world, we get joy, happiness, elation even, from things that others wouldn’t even notice.

. I find myself walking to work with a spring in my step as my daughter has not had a seizure that morning; I call my husband in excitement as she just signed ‘home’ for the first time since losing her speech; one of our fantastic carers arrives and we have a giggle about something. Many things I used to worry about don’t get a second thought now.

I remember reading on a parenting website in the early days, a comment from someone that said having a child with a disability made them no less happy. I thought that was nonsense, although tried to take some comfort from it. I get it now. I feel lucky to be in the same position.

Here’s the bit where I say I wouldn’t change a thing. But I would. I’d kick epilepsy to the kerb and make sure my daughter never had a seizure again. But the rest of it, the rest of the alternative life, my daughter’s incredible energy, happiness and carefree spirit? That I wouldn’t give up so easily. Nor the person it has enabled me to become.