Being Positive

I believe our attitude can make or break a situation. I also know that we, as humans, will have difficult days. I believe it is imperative that we do our best to not let difficult days break us. Somewhere within us, we must find something positive to help us through.

There are a lot of things I find positive about being a parent of a child with special needs. I hope this encourages all of you because I am sure you will be able to relate to most, if not all of these.

First and foremost, having this beautiful child has brought me closer to God in so many ways. I have needed and leaned on God more than anyone else in my life. I know that nothing works without God. Without Him, I would never have been able to get through the tough times.  

Another positive, I get to be her mother. She is the most beautiful part of my life and has brought so much beauty, joy, and growth.

I learned early on that I had strength I never knew existed within me.

. ‘Wow!’ is all I can say. I am truly amazed at some of the things I was able to do, make happen, and hold myself together while doing them. I have been able to bring that strength into other areas of my life as well.

My daughter has made me an advocate and a warrior. My mother would often say to me “You can so easily advocate for Emma, but not yourself.” My mother helped open my eyes to how little I was caring about myself, she was right, and I now easily advocate for myself. It does kind of give the feel of being a warrior.

I have some wonderful friendships that could have only come from being Emma’s mom.

These friendships were easily developed, and there is an automatic connection.

I even have friendships with like-minded parents whom I have only spoken to on the phone. I have never met some of these women, but I know if I need something, I can reach out and be understood. It is heartwarming to me that we stick together and support each other. I feel that is just another part of God being with me.

I never take anything my daughter achieves for granted, as I am sure most parents don’t either. My point is, there are many things that others would consider “small or insignificant” that in her world are huge or difficult. For example, she is now able to do her own wash, with some verbal cues. That is amazing to me. I wasn’t sure this would ever be something she could do. She is still learning to fold her clothes, but when she does that, I will celebrate that with her.

The main point of this blog is to help us all remain positive.

There are always going to be days that we have to pull ourselves out of a pit, all that matters is that we do, because we have these special ones that need us.

All the glory goes to God. Turn to, trust in, and rely on Jesus. “I keep my eyes always on the Lord. With Him at my right hand, I will not be shaken.” Psalm 16:8 NIV.

Letter To My Adult Autistic Child

It’s the best part of twenty years now since you were diagnosed with Autism, and just over three since you were diagnosed with ADHD. Looking back over those years with hindsight I can see so many ways in which I could, and should, have done better.

I don’t know if I can ever apologise to you enough for my failings.

I’m sorry I didn’t notice sooner that you are neurodivergent.

You were my firstborn, the baby I’d waited for so long. In my eyes you were perfect. I’d never heard of autism, ADHD, dyspraxia. You always seemed so contented and happy, especially once I got you onto a four-hourly feeding schedule.

When you were slower than most to sit, to stand, to walk, I decided that you would do it in your own time and that I was content to wait until you did. But if only I had asked questions, kicked up a fuss, maybe you would have got a diagnosis for your co-ordination issues as a child, opening the door to some kind of help. But now you’re an adult, none of the professionals are interested in exploring the possibility that you have dyspraxia, and you still injure yourself on a regular basis just moving around a room.

When you showed no interest in playing with your toys, but just sat and looked at them without ever picking them up, I thought you just weren’t interested in those particular toys. I must’ve spent hundreds and hundreds of pounds buying different kinds of toys for you on birthdays and Christmases, but you never played with any of them.

As a small child, of course, you couldn’t tell me that you didn’t see the point of play – it took fifteen years or more for you to be able to articulate that. But how did I, as a mother and as a former child, not understand that your lack of play was a red flag?

And I’m sorry that the only vocabulary I have for all of this is the language of deficit and ‘problem’.

It’s the only language I’ve ever been given.

But your disinterest in imaginative play hasn’t really been a problem in the long run, has it? It might have been one of the things that marked you out as different to most of your peers, but your preference for fiddling with gadgets rather than playing with toys has taught you so many skills and ultimately probably helped lay the foundations for your career.

When it was just you and me at home, doing our own thing, we never had a problem, did we? You were gentle, charming, and funny. You noticed things that never entered my head. You taught yourself to read like you’d absorbed the knowledge by osmosis. I was as delighted with you at the age of three as I was the day you were born. We were happy and life was good. It was only when nursery and school came into our lives that the talk of ‘problems’ began.

I’m sorry too, that I listened to the psychologists, teachers and other professionals who told me that I needed to make you ‘fit in’ to the world and behave like your typical peers.

I wish I’d been able to see the harm in this. But the world I grew up in was one of conformity, respect for authority and (especially as a woman) making sure you took up as little space as possible. I can’t believe it’s taken me until now to realise what a crock of you -know-what this is.

I’m sorry I never realised that I ought to listen to adult autistic self-advocates instead.

Then I might have better understood the ways in which your experience of the world might be different from mine.

Then I might have better understood how you might struggle with some of the things that most people take for granted.

And I might not have inadvertently forced you into situations which must have been almost unbearably uncomfortable for you.

But it wasn’t so easy to find people back then. I didn’t know about social media in those days. I’m not sure Twitter was even a thing. Tiktok definitely wasn’t.

I’m sorry that I didn’t fight harder to get you the help you needed.

I was told repeatedly that there was no help for us – none of the services available in our area had a remit to work with us because you had no learning disability. So, I accepted this and booked myself onto every free course I could (the only ones we could afford) to try to help you myself. But on my own I wasn’t enough. I wish I had made more fuss, kicked up a stink, shouted from the rooftops, until somebody, somewhere, listened.  

I’m sorry that I didn’t realise that autism wasn’t the only issue.

The fact that none of your teachers nor the Autism Outreach Team ever noticed either is of no comfort to me. I should have known.

I’m sorry that in all these ways, and others, I haven’t been the mother you needed me to be.

But I’m not sorry you’re autistic, because autism is part of the person that you are. And I love you exactly the way that you are. I am as delighted with you now as I was the day you were born.

And even in the hard hours, that never changes.

Dear IEP Team

Dear IEP Team,

We’re here to discuss my daughter today. We are grateful for the wisdom and expertise that you bring to the table. We realize that you know your jobs and you are well versed in them. You possess years of experience and advanced college degrees. Your names have distinguished titles following them. However, please remember…as you sit on the complete opposite side of this table from us, her Daddy and I are the unequivocal experts on HER.

You know our child on paper; you appreciate the numerical data reported from her evaluations. Some of you know her as a person, as you spend hours teaching her, interacting with her, and providing therapy services to her. You have extensive knowledge in the field of Special Education. We, her parents, have twelve years of comprehensive experience with this individual human being. While we respect each of your roles, there’s something we really wish you knew.

If you sat on our side of the table, you’d see this IEP meeting through a completely different set of eyes.

You recognize that she is twelve years old and you’ve reminded us, time and again, that she is many years behind her same-aged peers. But, did you know that her birth was a miracle and that she has overcome tremendous, countless obstacles in her life? Can you fathom the strength that she has shown against adversity?

You understand that because of her cognitive delays and orthopedic impairments, legally, you must make many accommodations for her. You surely feel that we ask you for A LOT, and we know that we can seem pushy and hard to please. Do you personally know what it’s like to have a child who depends on you to fight desperately for her? For ALL her needs to be met?

We are advocating for needs that parents of typically developing children couldn’t begin to comprehend.

Do you realize how wonderful she is, and how she spreads joy to all who meet her? Can you see that she is worth every single service and support that we ask for? We hope that you do. She’s truly worth them all, and so much more.

Do you ever wonder how the words you deliver to us in this IEP meeting can sting?Or consider how crushing it is for us to listen to all the ways our child falls short? We know that it’s your duty to relay the cold statistics to us. You share with the group that she cognitively functions on the level of a toddler.

Can you see the tears we’re fighting back? We hope you view us with some compassion. She is our world, and we love her more than you can imagine. We are well aware of all these facts that are neatly typed up in detail, but it still hurts to have to digest them all over again.

Thank you to the team members who are very familiar with her for making us smile.

You help us swallow the lumps in our throats by sharing all the AMAZING things she CAN do. You make sure to tell the whole team about her abilities. You love telling the group how much she loves Taylor Swift and how well she responds to music. Your eyes light up when you contribute that she is very sociable and happy. We know all these incredible things too, and we truly appreciate you noticing.

IEP Team, after this meeting ends, we’re going to continue pushing, requesting, and fighting for all the things our child needs to be successful; everything she needs to THRIVE. We will be diplomatic. We will never back down. Please don’t think that we’re trying to do your job; we’re merely doing OUR job. Our job is to be the very best parents for her and to give her a voice. Please know that we will strive to work WITH you to make school a safe, happy and wonderful place for her.

We know in our hearts that you would gain a whole new perspective, and that you’d do the very same, if you sat on our side of the table.


IEP Parents

Dear Eating Disorder

I write with good news! We have won the battle and defeated you!

Ten years ago you appeared in our lives, uninvited.  I didn’t know your name then, but I knew I didn’t like you. 

But how times flies! Because today, Eating Disorder, I’m ready to tell you, we are over you.  No longer can you overpower us, or ruin our lives.  Yes, you’ll always be there, in the background, a mild menace, but we no longer fear you.

Every single day for ten years, we have been fighting you.  You’ve made life more difficult than everything else difficult in our lives added together.  We know you are not a conscious decision; you are not an infantile phase. 

You are real and you are deadly. You are misunderstood and stigmatised. You’re a malevolent being and your invasion into people’s lives is damaging and destructive. 

Those early months and years were the worst. 

We tried everything they told us to, and more.  Mashing, blending, playing, messing, adding, eliminating, smelling, touching.  We were told you were a ‘phase’; we were told you were ‘picky eating’, and we were told you’d be gone before long.  They were wrong.  You were going nowhere and getting more powerful.

You introduced us to your friends: dysphagia, oral-motor, gag-reflex, aspiration, neophobia, and sensory processing disorder, and we disliked them equally.  You made us social zombies, and nervous wrecks.

We cried, shouted, pleaded.  We read, researched, challenged.  We contested, campaigned, self-funded.  We travelled hundreds of miles, made new friends and advocates.

And as time went on, we forged a way forward.  Your presence was waning!  We found strategies, we unwound hardwiring, and we developed new neural pathways.   We found trusted foods, and worked with trusted people only.

Slowly, slowly, we progressed, and we didn’t look back. 

We took tiny steps, guided by our instincts and our tiny army of specialists, and empowered by our progress. 

Days no longer revolve around you; we have become braver and more adaptable.  We now no longer fear mealtimes, and sometimes we even celebrate them!

You’ve given us our very worst days, and our very best days.

Today, we eat together, the four of us, and you no longer have a seat at the table. 

Goodbye, Eating Disorder.  It was not very nice knowing you.

From Jenson, age 10.

Some very important people to credit for helping us in this journey:

Rebecca Blinkhorn

Gemma Zarifeh

Clarissa Martin @ Midlands Psychology CIC

Anna Willis @ Active Play Therapies

A Different Kind of Motherhood

12 years ago as I awaited the arrival of my first child I had a vague idea of what motherhood would look like. I’d been to the antenatal classes, I was as prepared as I would ever be for night feeds, nappy changes, teething etc. After a rough pregnancy I was very much looking forward to meeting this tiny person who was almost ready to be born.

Motherhood has not and does not look much like I expected it would. Sure there are the usual bits, laundry that never ends being one but there are other parts I had no idea would become part of our lives. Never did I expect that I’d still be changing nappies at this age, nor that I would have changed so much in the years since my firecracker of a son made his entrance into the world.

SN parents develop the kind of advocacy skills that diplomats really should envy as we ensure that our children are provided with the support, facilities, equipment etc that they require and deserve. We learn to navigate systems and paperwork that seem put in place to make it more difficult to support our loved ones rather than easier, all the while making sure that homework gets done and that our homes don’t completely come apart at the seams (although don’t look too closely at mine!).

Medical mums and dads however, we’re a different breed even amongst SN families.

It’s a bond forged from shared experiences on High Dependency and Intensive Care wards, from sharing the hardest news that any parent can hear, and from hanging on with every fibre of our being as our children fight to live. We are scarred, battle weary, quite frankly we often look a mess and we don’t always get the happy ever after that our beautiful children deserve. And yet, I feel incredibly grateful to be part of this bruised and battered crew of amazing parents.

Motherhood is nothing like I expected. It’s brutal, it’s messy and it can be heart breaking. But seeing my boy achieve things, watching him do things his way and seeing that awesome smile of his is the greatest feeling on Earth. He really is the centre of my world and being his Mum is the greatest achievement of my life.

I am painfully aware that not all my friends still have their children here with them, others still long to be a Mum. Some are mothers to children who they did not give birth to; many more are just starting out on an uncertain journey with their children after hearing their diagnosis for the first time. Women are incredible creatures – how you come to motherhood doesn’t matter one jot, its what you do with it that counts.

HIE Awareness Day 2023

Okay, admittedly I am a few days late in writing this one as HIE awareness day was indeed April 4th. It seems quite apt given that my daughter Amy-Rose, born with HIE was also late. By at least 4 weeks. So there we go. This time of year seems rife with relevant awareness days for us – we’ve had epilepsy, cerebral palsy and now HIE! Truly a time to be aware.

I find that most people don’t know what HIE is. In spite of it not being relatively common (approx 2 or 3 babies in every 1000 live births, and less commonly later in life for some), people often look aghast if I mention “HIE”. It stands for hypoxic ischemic encephalopathy. In short it means lack of blood oxygen and restricting of blood flow affecting the brain.

There are a variety of reasons HIE can happen, be it placental abruption, meconium aspiration, cord entanglement, and many more. Amy was full term, and I had a very unproblematic, even at times, pleasant pregnancy.

I certainly did not foresee any of what unfolded in February 2014.

Amy is now 9. It’s amazing how your language in relation to HIE evolves and changes over that time. When Amy was first born I recall frantically seeking answers. I was comparing every other “grade 3” baby to Amy and trying to work out how her outcome would be. I remember reading over and over again about Apgar scores (conditions recorded about a babies’ health immediately after birth).

I remember when Amy was two months old. I was sitting on her bedroom floor in the middle of the night with her in my arms. I was trying to bolus feed her milk through her NG tube and was really struggling. The milk kept going down then quickly overflowing over the syringe because her reflux was so bad. When the feed was done, I kept her on my shoulder feeling her start to settle. As she settled I reached out for the bag of leaflets I had received from the hospital. Almost all of them were about prem babies. Amy was not prem. In fact Amy looked quite the giant in NICU next to the other tiny babies. 

I stumbled across one leaflet about HIE.

The leaflet depicted children running through the woods looking happy. The information within it was very limited and didn’t offer any real comfort or insight. I started to sob uncontrollably. What had happened to her? How will she be? Will she run through the woods? 

Fast forward 9 years and thanks to an amazing charity called PEEPs HIE and increased awareness via social media, far fewer parents are being left in the dark on those NICU wards wondering what on earth HIE is.

Truth is, you often only know what HIE is because it has affected a loved one in your close circle.

These days I don’t find myself saying HIE ever really. Once Amy received her cerebral palsy diagnosis this tends to be the main umbrella term for the conditions she has now, and even then, Amy is Amy. No medical labels needed.

I no longer think about outcomes.

Or running through the forest. I know that now Amy is non mobile, non verbal, tube fed, has epilepsy, has respiratory challenges. I wonder if I knew back then how things would be now, what I would think? I think I would have been truly overwhelmed – I can’t keep someone alive with that amount of medical need!? But we can, and we do. It’s amazing what everyone can overcome. We, and our children are so resilient.

We were very lucky that when Amy was born she met the criteria for cooling therapy. This is where the baby is kept in a hypothermic state (33 degrees) to prevent further injury to the brain. This technology hasn’t been around for long and I am so thankful that Amy was born when she was! Honestly, I don’t think she would have been here had it not been for the incredible medical technology and workers we have today.

I no longer spend the day seeking out alternative therapies, or wishing I did more of XYZ

I have had enough harsh life lessons now to learn that sometimes, doing your best and just getting through the day is more than enough. Be patient, be loving, be kind, have a wobble, be grateful, do what you can. But don’t agonize over the future, no matter how unclear it may be. I strongly wish I had tried to enjoy those early days more. Her cute little size, the baby phase. I spent so many nights obsessively researching feeding issues and so much. It needed doing, but I also think I put myself through a lot of undue torture in desperation for things to be easier for us all.

On HIE awareness day I like to think of those who are at the very start of their journey. I send them so many well wishes and so much love and hope. I don’t think Phil or I have ever been so scared as we were back then. It’s an unimaginably painful time for everyone involved. I hate that HIE still happens. I think it will always happen, unfortunately. Hopefully over time treatments such as stem cell therapy will be better understood and implemented to ensure the best possible outcomes for these children. 

I also think about the parents like us – in and out of hospital constantly.

Though we do face many daily challenges, I think our life is a happy one. Sure, there are things I would change. I would like Amy to be more comfortable, to need less medication and intervention. I would like her to be a little less angry and bossy! But in terms of acceptance, the “wait and see” seems to be over, and now it’s about “adapt and enjoy”. I send my love out to all of those HIE parents in hospital, wondering if it will ever get easier, or more fair? We send love to our fellow HIE best friend Jaxon who has been very poorly now in PICU for way too long now.

I think also about those who have experienced loss through HIE. It’s a sobering and devastating truth that not all of these children will live a long life. It’s obviously something I try not to think about. We came very close to losing Amy in December 2022, and every chest infection, every seizure you’re hoping with all your might that she overcomes this and continues to live. I never forget any of the children we met through HIE. Though they may no longer be alive, their memory is always very much alive to all of us and we send all of our hopes and best wishes to the families they have left behind. There are very little words of encouragement other than to be there and keep the memory and names alive of these amazing little fighters.

Autism Walks into a Bar

A person with autism, a person with ADHD, and a person with OCD walk into a bar …

and no one notices.

That’s it. There’s no punchline. This isn’t a joke.

Most people think they are aware of autism, they think they know what it looks like.

But they don’t.

Not really.

Because it is so easy for some families to slip under the radar.

On the surface, the mum, dad, two teenage kids and granny that have just walked into the restaurant look almost exactly like all the other diners.

Some of the other diners might characterise the dad as a miserable old git if they happen to notice that, directly after he speaks to the waitress, the volume of the music reduces noticeably.

If they see that, despite having asked for the music to be turned down, he and his wife have allowed the kids to keep their earbuds in, they will probably just tut and feel superior because they’d never allow their kids use devices at the table – that’s just plain bad manners!

What the other diners are not aware of is just how unbearably loud that room is, even without the pounding music – the hum of a dozen or more conversations, the clatter of dishes and the clink of cutlery, the banging of the kitchen door, the hiss of beer pumps or coffee machines, the scraping of chairs.

What they probably wouldn’t understand is how letting the kids have sounds of their choice fed directly from their devices into their ears dulls the overwhelming cacophony of background noise just enough to prevent a fight-or-flight response or public panic attack.

What they would also not be aware of is how having her favourite music piped directly into her skull drives out the repeated, obsessive thoughts of death and disaster that are frequent, unwelcome intruders inside the younger child’s head; the only other way to get rid of them is at the point of a blade, cutting so deeply into her skin that the sharp sting of the pain drowns out all else.

But the other diners can’t see the scars, they are covered by her clothes, nor can they see either set of earbuds as they are covered by the kids’ longish hair.

So, no one is aware.

 If any of the other diners notice that the granny is sitting at the table with a face like thunder, loudly nit-picking the menu, they will probably just dismiss her as a cantankerous old bat.  

What they can’t possibly be aware of is the quivering needle on her anxiety gauge climbing towards the red zone because she doesn’t know if any of her ‘safe’ foods will be on the menu. She doesn’t have this vocabulary, though – she was a ‘picky eater’ a ‘fussy’ child, an ‘awkward’ child, a child so unwittingly frustrating to others that her mother used to lock her in the understairs cupboard, and her teacher made her work out in the corridor as she couldn’t bear to have her in the classroom.

The few foods granny will eat are simply the things she ‘likes’, the ones that don’t make her ‘feel ill’. So many of the things other people eat are so utterly revolting that even to think about having to eat them makes her feel panicky and sick. To be honest, she’d rather take a pill, like a spaceman, if she could, than feel and taste food in her mouth three times a day.

She’s just here for the company of her family.

But none of the other diners are aware of this, because old people don’t have autism: it wasn’t a thing back in their day, was it? I mean, it’s a modern epidemic, isn’t it, caused by, I dunno, maybe vaccines or pollution, or bad parenting, right?

And if any of the other diners do happen to hear the dad sniffing, they will probably assume he has a cold or hay fever, because it’s unlikely they will be aware of the intrusive smell of plastic wafting up off the tablecloth that will stop him from enjoying his food and has him wondering how his wife can possibly be telling the truth when she says she can’t smell it.

They will most likely assume that the mum is a poor spouse and mother, or unhappy with her marriage and family if they notice that she has stopped responding to the conversation at her table.

They will not be aware that her mind is completely feral and she’s never been able to stop it wandering at will, as it has done since she was a little child, sitting on her swing in all weathers, needing the repetitive back-and-forth motion to calm the storm of feelings and energies inside; back when her parents called her ‘Dolly Daydream’ and ‘highly strung’ but at school was renowned as a volatile nightmare who ‘could do better’ and must learn to control herself if she wanted to get anywhere in life.

No, none of the other diners are aware that autism* walks among them in that restaurant,

or at their workplace,

or in the house next door,

because sometimes autism hides in plain sight.

*and other neurodivergence.


We have a bit of a habit in this society of conflating the word ‘accessibility’ with wheelchair access. It is quite easy to see how this has happened. Many years ago, neurodiversity and non-physical disability were less understood (although we still have a very long way to go). We thought about an accessible building as having a ramp for a wheelchair user, perhaps a lift, that was about it.

Vitally important things, but we didn’t consider about accessible activities; things like autism-friendly cinema screenings, sensory rooms in hospitals, or queue jump passes for rides at theme parks. These are the small changes, the reasonable adjustments that can make or break a day for many families of disabled children.

The knowledge however simply isn’t there.

We still endure double takes when we jump a queue at a theme park, we still have stares when a meltdown occurs in a supermarket and our eight year old (who I can no longer lift) is lying across the floor. I will never forget the moment that someone once stepped right over her when she did that, a gesture so lacking in compassion.  

As most of us will have discovered in the childhood disability community, having a ‘hidden’ disability can bring its own set of challenges. Our little girl wears an epilepsy helmet nearly all of the time. It protects her from physical injury, but a by-product is that it protects us from judgement or sidelong glances if we use a disabled parking space. It’s an obvious physical signifier that she is disabled.    

Accessibility to the world, to life, is not just about reasonable adjustments from companies or organisations, where we are protected by the law. These adjustments need to come from the public, too. Often they do and we are offered help, or a supportive smile. The times we are overlooked or stared at however; they sting and sting. 

Often we need people to make a little adjustment to their day to help us get through ours. Sometimes that adjustment is as small as letting us skip ahead in the queue if you can see my child is not coping. We need to empower everyone with the awareness and education to help. I hope we can together raise a generation of children for whom this becomes second nature.