Baby Loss Awareness Week

October the 8th-14th is baby loss awareness week.

What a tragedy that such a week has to exist; and yet how encouraging to see that we are finally starting to acknowledge this contentious yet important subject.

I didn’t want baby loss awareness week to be relevant to me. I wanted to be aware, support awareness, but not have to process the multitude of emotions and all-encompassing grief that comes with it.

1 in 4. A statistic that thanks to these awareness campaigns is becoming universally associated with miscarriages and pregnancy loss. I am 1 in 4. Twice.

Unless you have been in that situation and experienced it first hand, you can never truly even begin to understand what it means. It’s different for everyone of course, but for me it is a perpetual roadblock on my path to becoming a calmer, happier, and more accepting person. I can’t and don’t accept that I am 1 in 4. Even though I am.

At least 3 times a day in my head I repeat the words “It’s not good news.” The words said to me when encountering my second miscarriage. I could see the scan, I could see what was never going to be. I was sent to the little room to cry. I grabbed my things, and we went home.

At least 3 times a day I think; “how old would he/she be now?”, “I wonder what it would be like?”. Back then so many people said to me; “you can have another”, “it wasn’t meant to be”; all kinds of well-intended absolute **** that you just don’t need to hear.

I wanted THAT one. It WAS meant to be.

You hurl yourself onto your bed in a crying heap and weep loudly into a pillow wishing this would all go away and that actually this is all just some horrible dream that you will wake from.

So those of you who follow my story will be aware that the birth of my daughter Amy-Rose was a very unexpectedly traumatic one. Her heart rate slowed in labour and she was delivered via an emergency c-section.

She was resuscitated, ventilated, sent for cooling therapy due to a severe brain injury she had sustained whilst starved of oxygen. In many ways I see this as a baby loss.

Obviously, she survived, and I am eternally grateful for this. But we almost lost her… a few times… and I do sometimes mourn the child that could have been had it not been for her brain injury.

It’s funny how as soon as you have a baby people feel it’s okay to ask “when are you going to have another?”… as if somehow your work is not yet complete. As if birthing a child… creating a human life… is a doddle can be compared to deciding to buy a coffee. It’s not a snap decision, it’s not an easy conversation for everyone.

So, we did decide to have another. Terrified as we were having encountered what we had… we wanted her to have a sibling… I (selfishly?) wanted a child that could say mummy, or eat… stuff I didn’t get to do the first time round. 3 days before my 12 weeks scan I bled… and I mean bled.

I was told I had miscarried, was informed I had endometriosis and indeed a blood disorder I didn’t know I had, and was eventually sent on my way.

When I got home I never wanted to leave my room. I wanted the grief to consume me and eat away at me until I vanished into thin air. It’s hard to put into words how I felt. Why me? What did I do wrong? It wasn’t and isn’t fair.
I bled in total for 16 weeks, becoming very anaemic and unwell.

In the end I had to have a myectomy (removal of fibroids and webbing… I have a lot of internal scarring). It was agonising. I had a local anaesthetic and gas and air… but it didn’t touch the sides. When it was over it almost felt like I had closed the book on that pregnancy.

It was like it had never happened. It’s like I had never seen those two lines. And yet in my heart and mind it will be imprinted forever.

A few years on and I am rendered traumatised and terrified by the whole thing. My heart sinks and my gut twists when I see a pregnant belly, or a baby. I think why couldn’t that be me. I know that if this ever was me… how would I ever be even half as calm as all of these women?

My perspective of the world has shifted irreversibly. I have antidepressants, I have grief counselling. I struggle more than ever with social anxiety, and my tether to reality seems to have been snapped. Sometimes in a cafe I will see a mum group all nursing their babies and laughing cheerily. That’s not me.

I feel a bit like an alien observing a foreign species.

Since opening up about my story a lot of people have contacted me. It’s surprising just how many people have been through this (well, 1 in 4 in fact). Some don’t talk about it… and some do. We all cope in our own ways. I am both heartened and heartbroken to hear some stories of my peers and I am in awe of their resilience and determination to plod on in life and make the most of it.

I am a wallower. I am guilty of wallowing. I think it’s okay to not be okay.

But I wish that more often than not I could just get knocked down, get back up, dust my knees, and continue. It isn’t always that easy.

Loss is sitting on your daughter’s bed and crying whilst holding her NICU cpap hat. Loss is avoiding the baby clothes section in the shop. Loss is clicking “unfollow” on a pregnancy announcement because you can’t handle it… but then feeling like a guilty and horrible monster for needing to do so.

It’s trying to distract yourself by any means possible and trying to repurpose your life. It’s realising that actually in spite of your loss… you also have so much, and feeling terrified that you could lose again and expending every ounce of energy on worrying about what could happen.

It’s being lay awake numb with insomnia even though your body aches and your eyes are tired. It’s PTSD, night terrors, overthinking. It’s a rapid heartbeat and a tight chest. It’s so many things. It’s feeling you’re not like everyone else and that you don’t work properly… you’re broken.

But it’s also learning to love fiercely and appreciate what you’ve got. It’s also recognising the pain in others and developing a level of empathy that you can only feel with experience. It’s having learned hard life lessons and being dealt bad cards but still making your bed every day.

It’s smiling through the pain and that remembering how lucky you are.

It’s being thankful every moment and internalising the grief so that you can try to put it to one side and enjoy the little things in life. It’s knowing how all of this feels and having a deep hunger to help others in their time of need and not wanting them to feel how you feel. It can shape you and make you a better person.

I appreciate that this is a difficult issue to digest, and can often make people feel uncomfortable. But I write this in full openness, with tears streaming down my face, hoping hard that someone will read this who needs to read this and finds the inner strength to overcome their shortcomings.

I will never forget my two pregnancies that had a bad end. I may not have been long into either pregnancy but this is arbitrary… LOSS IS LOSS.

You can never undermine someone’s loss; your loss is no bigger or no less. It is what it is to you.

There will always be someone out there who “has it worse” than you, or people telling you “it could have been worse”… but don’t listen. Your feelings are valid and you should be listened to without judgement and with love. I remember reading a post online called “even the horses are pregnant” and it perfectly articulated all of my feelings…

Sometimes the best thing about an awareness week is seeing how you feel written in a way you couldn’t articulate yourself and saying to yourself “hey, that’s me! I’m not alone in this”…. and it’s true… you are not alone in this, and I thank that person who wrote that post for getting me through some darker times.

To anyone affected by my post I really do encourage you to seek help via your GP.

Struggling alone is the worst. I am very lucky to have the support network that I have and in spite of the challenges I still face daily… I persevere and I do have hope.

Learning to Let Go

“Now Cameron, you walk straight there, don’t talk to anyone and I’ll see you later – I love you”

I still remember the sick feeling in the pit of my stomach when I watched my son walk off down the street on his own for the first time.  He was walking to my sister’s house which was literally a less than two-minute walk around the corner.

Message sent 7:57am: “he’s on his way – tell me when he’s there”

Message received 7:59am: “he’s here”

There we go – I managed to let go and he felt suddenly so much more responsible and grown up that he walked to aunty Tina’s house thereafter every morning before school.

Then came the question later that school year:

“Mum when I’m in year six – can I walk to school on my own or with my friends!”


This was not even something that was up for discussion, initially I was not even offering up an explanation to my son as to why.

No meant no. I was afraid, afraid of so many things and scenarios in my mind.

Yes, he has autism but he is in mainstream school, full understanding of expectations but he is also extremely naïve.  He does not understand why people would lie as that is not something that sits well with a logical mind.  When I was explaining online safety in gaming he said, “why would someone tell you they were someone else or a wrong age!”.

Or the time we bought a new car that he was excited to tell his friends about and another child said “well my dad just bought a Lamborghini “ and when I assured him that this child’s father had not bought a Lamborghini he was confused “but why would he lie”.

So now we are into year 6, his final year of primary school, I now have the makings of a fine young man in front of me.  A young man that is again asking if he can make his own way to and from school.

So, Google maps shows it’s a 10-minute walk.  There are no main roads, and literally one small cul-de-sac side road that must be manoeuvred to school’s destination.  A walk we have done 1000 times before and a route where we know so many faces – so why the dread.

I saw a post from one of the school mums online this week stating that her son would shortly be getting the bus home outside school twice a week.  This family live just around the corner from us and I made contact to see what the plans were.

So, our bus stop is 2 stops from school –  a five minute journey instead of a 10 minute one.  We shared our concerns with the fact the boys will be going to high school next year and are not streetwise and need to be helped in growing up – we took reassurance in that there are people on the bus daily that we know and I will have a family member strategically placed in operation “secret squirrel” for a few weeks to see how the journeys go.

So that’s it.  My boy is going to soon be taking his first “independent” steps in his ambition to be making his own way home from school.  We are starting small with two days and just the return journeys, we may later on in the year introduce a day where they will walk home.

I’m really trying to learn to let go.

The Greatest Teacher

To my son as he enters kindergarten,

You’ve reached a major milestone.


I don’t even know how we got here. I can’t even believe it. These last five years have flown by. It really is true, time flies. I know you’re ready to spread your wings and fly. You are ready for so much more, ready to make new friends and memories. Ready to soak in all the knowledge you can. The ABC’s and 123’s, colors, shapes, and so much more.

There isn’t a doubt in my mind that you are going to be amazing. Not one doubt that you’re ready. But are they ready for you?

Are they ready to be forever changed?

You will teach those around you that you don’t need to speak to have something to say.  You will teach your peers that above anything else, kindness is what counts. You will teach everyone that you can listen with your heart, you just have to try hard enough.

You will show everyone that who you are on the outside matters very little, it’s the inside that’s the real deal. You will prove to them that hard work really does pay off.  You will teach them all to be grateful for every. Little. Thing.

You will show them that life is truly what you make of it.  You will show them over and over that sometimes the little moments in life are actually the big moments. You will teach them that there is so much more to learn than what is taught in a book.

You will teach them that pity is not compassion.

You will prove that regardless of ability, everyone has something to offer.  You will show them that hope, even just a sliver, can carry someone an awfully long way.

You will teach them to get back up after they fall.  You will teach them that the most important things in life are definitely not things.  You will remind them not to take anything for granted. Ever.

I have always known you would change the world. Even if it’s one person at a time. So, as you head into kindergarten, I am beyond proud to be your mom. I know you will be an excellent student.

But you, my son, are the greatest teacher.

A Plea to Those in Power; Leave the DFG Alone!

This last fortnight has been crucifying; the joy that is building work continues to plod ever onward, and as it goes forward the reality of trying to get everyone doing what they should be has taken its toll. It is like herding cats.

On a ‘normal’ build, the people you deal with would probably be the builders, building inspectors, electricians and the other trades. On a SN build however, you need to add in the Council/whoever is managing the DFG in your area, OT’s, social workers (if you have one), physiotherapists, charities (for funding the bits the DFG doesn’t even come close to) and suppliers of SN equipment such as hoists, hi-low baths, specialist flooring…

Honestly, it’s a behemoth of a project.

Not helped I should add by lack of communication between aforementioned individuals.

In our county, the DFG is no longer managed by the local council but at County level; in Staffordshire this is now outsourced to a third-party company who take a chunk of the DFG money as a fee, but who do everything for you from getting quotes to project managing the job. The cost of hoisting also comes out of the DFG grant itself, so by the time you’ve finished paying fees etc, you lose a significant amount of the money that was designed to make life easier for those with disabilities/chronic health conditions.

You may well get a hoist, but you may not have any rooms suitable for it to be fitted. We are in an unenviable position in that we started our build under the old scheme (DFG managed locally, we did all the hard graft with quotes etc, hoisting covered by OT as a statutory need), however are now trying to work our way through the minefield that is the NEW system, and no-one from the local or county councils are actually talking to each other.

This has resulted in more c*** ups than I care to list.  The poor OTs and physios are stuck in the middle as no-one is communicating anything to them, and families like ours are left to try and untangle the mess that ‘streamlining the DFG process’ has caused.

So, in a plea to whoever makes these ridiculous decisions – stop it.

Families like mine are already surviving on the very edge of the abyss. The DFG is the only way we can make our homes suitable for our loved ones; stop making an already dreadful process worse and start supporting those who, through no fault of their own, desperately need support.

I’m Not Her Voice

If you have a child with a disability, you’re certain to run into the cheerful declaration: “you are your child’s voice”. You can find it on t-shirts, coffee mugs, jewellery and many, many memes and blog posts. Every time I see it, I cringe.

Let me make it clear:  you are not your child’s voice.

My daughter Z is seven and she is non-verbal. This has not stopped her from being free with her opinions, communicating her needs and giving us signs (such as ear-scratching, hair pulling, facial expressions and making noise) about whether or not she is happy since she was a baby.

All these signs that Miss Z gives us are great – we couldn’t get by without them – but they are limiting.

Let me give you an example. One afternoon, Z started to get grumpy – grumbling and pulling her hair. We could all knew she was telling us she wasn’t happy. I assumed she wanted to be repositioned, so I rolled her over. She continued to grumble. Her sister thought she was bored, so changed the tv channel.

She continued to grumble.

Her father figured she must be cold, so put a blanket over her. The grumbling continued for a few minutes and then Z fell asleep. Was it the blanket that made her happy? Or was she tired and finally gave in to sleep? Or did she just give up trying to tell us what she wanted?

This is the moral of the story:  even as her mother / sister / father, even as people who love her dearly, even as those who have spent more time with her than anyone else on the planet, we don’t always know what she is thinking or what she wants to say.

So, how can we be her voice?

Let me give you another example. Miss Z was dragged along on a shoe shopping trip for her sister. She was clearly bored, but waited patiently while her sister tried on several pairs of shoes. Afterward, I said that because she was so good, she could choose a reward – a little stuffed animal.

Now, Z has always loved bunnies. Her room is full of bunnies. And recently she has developed a love for cats and pigs, too. However, when her sister and I enabled her to choose her own toy in the shop, she very clearly selected the pink unicorn.

Wait – the pink unicorn?! What?

Yes, Z has suddenly decided she likes unicorns and the colour pink – two things she’s never shown much interest in before. But given the opportunity to choose her clothes, she wants to wear the pink t-shirt. Given the opportunity to choose her bedtime story, she wants “Thelma the Unicorn”.

If we hadn’t taken the time to ask her opinion, we never would have known. I would have bought her the cat or the bunny and she would have gone home unhappy and not feeling rewarded for her good behaviour.

What is the moral to that story? Take the time. Facilitate communication and be her partner – not her voice – in helping her to communicate her own thoughts and feelings. We’ve gone through several different communication systems until we found one that worked for Miss Z, and we’re constantly trying to improve and expand it, in order to give her the greatest opportunity to communicate to the best of her ability.

I will admit that using a communication system can be pretty boring and inconvenient. It takes a long time to ask a question, and even longer to get a response.

But, without the effort, Miss Z wouldn’t be able to tell me which character she wants to dress up as for Book Week. She wouldn’t be able to tell her teacher that she is grumpy because she is tired or needs a change of position. She wouldn’t be able to demand long hair, when I really, really want to cut it short. These are the things that are important to my seven-year-old daughter with a disability, and without helping her to communicate, I wouldn’t know any of it.

We are not the voice of our disabled child. Please, please don’t claim to be able to read your child’s mind.

Instead, be an advocate and a communication partner to help your child make their own voice heard. I promise, you won’t be disappointed.

Except maybe when they choose the pink unicorn.

Travel Advice for the Journey You Had Not Packed For

I had packed my hospital bag for the third time. I needed no advice. I was returning to a familiar place with all the knowledge I thought I needed. I had this, there was nothing that I had not packed and was not prepared for.

I never felt the rocky path of parenthood until I had my third baby, Eoghan. Everything before this was textbook, nothing unusual to report. But Eoghan rewrote my mummy manual. Unknown to us, the moment he entered the world our lives took on a whole new meaning.

Before I departed the security gate of the maternity ward there was a box ticked that something was not right. Eoghan failed the Universal Newborn Hearing Test. My attitude was, so what, we will come back next week it will be fine. Maybe I would not have been so confident if it had been my first baby. However, I was now a cocky mother of three.

There was nothing left for me to fear about motherhood. My baby was perfect.

There had been no indications that anything was not as it should be.  I was blessed with a third healthy and happy pregnancy. Once I got past the midwives screening I was ready to bring our new addition home. I carried my Maxi Cosi to the lift, down to the ground floor into the car home without a worry in the world. I never felt a need to worry.  However, our car was on autopilot heading for an unknown destination. We had nothing packed in preparation for the journey ahead.

Eoghan challenged my strength from the start with a tough labour. For the first time ever in my birthing experience I experienced a fear that something was not right. That something was going to happen him.   I felt immense relief once he was delivered safely.  Eoghan left my body but a residue of strength and a powerful love remained inside me.  I know this because I never felt so strong or determined until I had met Eoghan.

He unearths a person I never knew existed and whom I never thought I could ever be.

I have talked many times with other Mums, exchanging our stories and emotions of having a Deaf baby. We always go back to the start. It is often the most emotional part of the story. The days, weeks, months and maybe years of getting your head and heart around a diagnosis. The sadness is often rooted in the unknown because in many cases our babies are probably the first Deaf person we knew.  But as you look back on those early days you now wish someone had told you everything REALLY WILL BE OK. It is in our power to make it as OK as it can be.

I remember when we got Eoghan’s diagnosis I wanted to look back and know that I was always OK with the fact he is Deaf.  This was not something that just happened. However with the strength Eoghan left inside me I mindful   rewrote my mummy manual.  It was the only solution I could find to overcome our vulnerability.

I have always wanted to share my early perspective following diagnosis with other Mummies and Daddies who are currently experiencing the same vulnerability following diagnosis. So here is my travel advice for any parents starting their journey to a foreign parenthood land:

For the first year the world would not question him but would see him as just a baby. So enjoy babyhood and do not worry about their adulthood.

This is not always easy as time is taken up with hours of hospital and therapy appointments.  In the first 11 months we had 141 appointments. Appointments are just a way of life now. Therefore, when we were not travelling to appointments, waiting in waiting rooms or talking to the tenth different medical I grabbed what was left of my free babyhood time.  I treasured, kissed and hugged Eoghan with as much positivity and happiness as I could.

Why was I so adamant? Because the first year of life most babies do not walk or talk. For us infancy was the only time when Eoghan was just like any other child of his age. There was no expectation for him to have reached milestones as there would be in the years which followed.

I knew that as he got older people would see the difference between Eoghan and other children of his age. But for the first-year society saw Eoghan as I did “perfectly normal.”  Therefore, I knew I had to enjoy every minute of babyhood before society would view my normal baby as something different.

Find as many positives and rationalisations for your journey. Instead of asking why ask why not?

There was nothing I could do to change the path of our new journey. I quickly realised that as time went on I would never want to change it. To change direction would mean not having Eoghan. Therefore, to feel comfortable in this new place we found ourselves I never questioned why. That was too negative.

I asked why not? Why not us? I rationalised every aspect of our lives to justify why we were the right family for this journey. By the end of my exhaustive list I could not find the answers in why us but found comfort and purpose on the why not side of my page.

Embrace the diagnosis do not fight it but go out and find it

Fear comes from ignorance. Say the words out loud. When people feel uncomfortable talking about your child’s diagnosis say the words for them. “Yes, he has a profound deafness he hears absolutely nothing.” Each time you say whatever words truthfully describes your child is therapy for you. It’s part of your acceptance of your child’s diagnosis.

Become informed where your true fears lie do not be afraid to become more informed. Sometimes the truth is easier to handle than ignorance of the facts. Knowledge is power.

Meet and engage with your new community they are your torch bearers

Find a community of people who live in your new world. You will soon discover that life is   cut outs of all shapes and sizes but everyone everywhere has a fit. Remove your stereotypes and be enlightened by real life and real people. The most amazing people are waiting to meet you. You will meet human kindness like you have never experienced before.

You will quickly feel that you are the privileged ones who has been touched by the best of what humankind has to offer.  There are so many people waiting to help and it is important to be accepting of that help. Do not be afraid to cross the bridge to the other side. It is not the dark side but a place where you will find the light again.

Stay in the moment do not let your fears ruin the happiness and joy that is in front of you

Be present do not wander off. Control your mind to keep focused. See what is right in front of you. Do not envisage a fearful future. You have no control on the past or future but you can make a difference in the now. Every person is different.

You can read 100s of cases similar to yours but they will never be the same. Do not worry about the what ifs but focus on the what is. Enjoy the moment and remain in the here and now, looking at all that is right and not the wrong.

Be the pied piper and write your child’s history

I never wanted people to look at Eoghan negatively or too sympathetically because he was Deaf. There was already so much more to him than that. I wanted his life to be a positive one. Where people smiled about him rather than cry because they thought being Deaf was a sad or bad thing. I needed to be his voice. I needed to stand up for the life and the identity he was born to. I was the pipe piper.

I set the tune that everyone else would sing to when it came to Eoghan. He was a beautiful healthy baby. My public relations career had been good training in delivering the messages you wanted people to hear. I created a brand identity for Eoghan.

I wanted everyone to recognise and to spread the message that yes Eoghan is Deaf, yes it will be a long road but it will be OK. As much as I want Eoghan’s future to be a positive one; I also wanted the same for his history. I wanted his story to be a positive one from the very first page.

Let it out. Speak about it all the time until speaking about it is an easy conversation.

Let yourself be broken do not try to keep yourself in one piece. You need to break so you learn how to repair yourself. Unearth the saddest part of the story, speak of the pain which troubles your soul. Cry and dive into deep conversations. Do not wait for a time that is right to talk. Make sense of it all with a real conversation as soon as it comes into your head.  Cry until everybody is seasoned with your tears.

Speak truthfully and honestly. I always imagined a big black hole. I always allowed myself to go so far with my emotions. I imagined a spring on my back in case I went too far beyond my capability of self-repair. The spring could pull me back on my thoughts if I was going to fall and I could keep them for another day. Instead of packing these feelings away I kept them close so that I would soon return to them with an open heart.

Look after each other and know it’s OK to react differently

As much as Shane and I had to learn about Eoghan diagnosis we had to learn about each other all over again. We were now different people because this was life changing. We had to look after each other as we travelled to our new destination. We had to help each other settle into this new place. We spoke until the words were gulps of tears and our hearts beated to the same emotional rhythm.

We now get a clear view of the story each other’s eyes are mentally writing because we listened so closely to each other. We were each other’s superglue, ready to gently piece each other back again when one of us suddenly shattered to the floor. We ironically talked about our fears of Eoghan never talking. BUT WE TALKED truthfully together and exposed our vulnerability never hiding it from each other.

That IS why we always knew which path each other was on because we planned routes we could both take.  We understood and respected that one of us could drive better on some routes and they would be the designated driver for particular situations.

We knew each other’s strengths and weaknesses and allowed each other to make sense of it all in our own way. But we always knew what way each other were handling things and together we found a way that worked for all of us.

There was never a wrong thing to say to each other. We were still exploring this new place and for now there were many questions. Eventually we would find the right answers together.

Your miracle is even more miraculous

I stared for hours at Eoghan. Examining him with my eyes and my hands. But my head and heart is where the intensive examination took place. I would look at him meticulously, looking for anything that I felt I should report to the doctors. But I could never find anything. Lying in that moses basket was perfection.

All my other boys were born with dark hair, but Eoghan was different, he was fair. My fair-haired angel was perfect in every way.

I remember I would look at him and thank him for surviving and making his way to us. He was miraculous because he had to fight that little harder to get here. This tiny baby had already made me so proud and I knew it was only the start. He had taught me so much in such a short space of time. I will be forever grateful to my beautiful little miracle for enlightening me to a new meaning of life.

Write it down.

The biggest thing that brought me through the first year was writing it all down. I wanted Eoghan to understand how I truly felt   post diagnosis.   I imagined him asking me how did I feel when he was born Deaf. I have imagined the conversation many times. I have imagined me signing it to him. I will never lose hope that I will speak it to him someday. But more than anything I wanted him to read it for himself.

I recently met a Deaf man who asked me how I felt when I found out Eoghan was Deaf. In that moment I was so relieved that I had written it all down. That raw, real-time account would never have reached Eoghan through reminiscing on those early manic days. I needed him to truly believe that deep down in my core I was always ok with how he was born. But above all writing kept me going.

It kept me emotionally charged that I could put my thoughts somewhere. I let my inner thoughts out without having to explain or justify the way I felt. I knew that when I wrote, my truthful mind was at work. Looking back the words are like stars in a night sky sparkling with love, fear, vulnerability but above all hope.

The hope that the future was a happy place for Eoghan. I look back now on those pages and less than two years on, I can already see how far we have come. No matter what your journey is, no matter how hard the road, you will find the way to progress and persevere on.

Every journey is different. No two journeys are the same. They may be similar but never the same. None of us come home with the same holiday snaps even if we have been to the same place. Therefore, there is no right or wrong way to accept what life drops in front of you.

But I hope that you may find some inspiration at the start of your journey from the truthful words of mine.

Being A Parent of A Child With SEN

My son came downstairs recently; stood right in front of the TV, totally oblivious to the movie we were watching and started……….

“Dad, do you know that the Tiger Tank was over engineered, the materials used were much too expensive.  The tracks on the tank often failed mechanically and the fuel consumption was totally rubbish – can you believe that?”

Cameron has always been interested in mechanics; whether it be planes trains, vehicles really of any size.  He has knowledge – really intricate knowledge beyond his years on the workings of pistons or points on a railway – his brain fascinates us.  Yet he can’t remember to change his underwear or does he know how to tie his laces.

I looked at my husband when he walked back off upstairs and we both laughed.  I said to my husband “Would you change the autism now?” and he shook his head, “no me neither!!” – and I actually meant it this time.

You see it wasn’t always so.

I used to think people were liars when they would say “I wouldn’t change them for the world”.  My heart would race, I would get annoyed and I would think why were these people just not being honest, I thought “WHAT?! yes, yes you would – If you had the chance you would want your child to be typical and not face the uncertain future that they have with their disability!!”

This was before I accepted the uniqueness of my son, before I actually started to watch and observe the way he saw the world and fully appreciate him:

  • The way he clicks his tongue in time with the indicator on the car.
  • How he knows every car manufacturer logo
  • The way his vocabulary and context could easily be that of a college student (event if he couldn’t spell any of the words)
  • His love for watching “top kitchen gadgets” and thereafter his recommendations for what would make my cooking life more easy
  • How we will run his hand over my knee and stop to take in the scar I obtained as a child and be full of concern when he heard of how it happened
  • The way he has literally no filter – will say what he thinks 100% of the time
  • How he will tell me literally 50 times a day “I really love you mum”

It took a good while, with many tears and so much heartache to get to this point.

I realise now though that without his autism he would not be the person he is today, a person that gives me so much joy, love and laughter.

A Chair with Wheels

A holiday, in Cornwall. Pearl decides to do some beach walking.

Unable to use her trusty Kaye Walker on the sand she relies on Dad’s hand, stubbornness and occasional crawling.

The family becomes silhouettes on the shoreline, and I am marooned with the new, cumbersome, wheelchair buggy, unwittingly about to take part in a social experiment.

The buggy is new, green, and slightly reclining, it also holds weights up to 14 stone.

It’s sunny. The small girl shape on the shoreline is digging. I have a book. So, I sit down on the deckchair substitute I’m minding.

Soon I start to feel uncomfortable. I’ve positioned myself just off the main path to the beach, so I can see the sandy explorers, and be as close as possible when Pearl’s energy runs out.

People are passing, as they have been since I arrived. Something however has changed and I’m not sure what.

As crowds stream past, adults look over my head, some glance at me and look away as soon as I catch their eyes and smile. Those who do say hello often accompany it with a head tilt, and a mild look of sorrow.

I am in direct eye line with sandy dogs and small children, who feel free to stare, but generally return my smiles, even the dogs! (Famously known for being a bad influence on children and dogs, I tend to over excite both!)

A couple my age are struggling up a steep embankment and having difficulty managing the climb, and a lively canine.

“Can I help you by holding the dog?” I ask.

“No, no, don’t worry we’ll be fine” comes a swift reply.

I look at their kind, concerned faces. Then it hits me.

I believe I’m sitting in a chair, but all the passersby think it’s a wheelchair. The feeling of dislocation has come from the reactions to a chair and a young(ish) disabled woman.


I think of Pearl, and my best friend who has CP and is a wheelchair user. Do they get this? Every day?

I get up to help the dog walkers, who are astonished at my miraculous recovery.

This also gives me pause. What if I was an occasional wheelchair user (like Pearl) would people have an opinion on that too? Perhaps they’d think I was inventing a disability?

I chat about this to the dog walkers.

“I’m sorry,” he (who incidentally was one of the only people to look me in the eye and grin and greet me when I was in the chair) said. “I just assumed.”

I talk about my feelings at swapping places with Pearl and say: “I think everyone should be made to sit in a wheelchair in a public place for half an hour it’s been an eye opener”.

Ms Dog walker agrees. Her best friend at school had been a wheelchair user, and she’d had a go in  her chair: “Didn’t like it, everyone treated me differently and nothing was in my reach or eyeline”

Do people look at Pearl like that? Does she notice? I hope not but being nonverbal and having challenges with her understanding of verbal language, I’m sure she does. She is a very astute reader of body language and facial expression.

I would urge anyone to try this. I found the power in an exchange shifted very subtly. I was literally being looked down on. Not only that, but the burden of beginning an interaction, lay with me as people over empathized and felt uncomfortable about how to acknowledge me.

So to all of us who get around on two feet.

No cause for alarm.

It’s just a chair. With wheels.

A Letter to All Special Needs Mums

Dear special needs mum,

Did you ever think you would be known as that? “The mum with the child who has special needs”

I certainly didn’t…

That’s what other people see but I’ll tell you what I see when I see you.

I see the occupational therapist having to sort out all the equipment and researching to ensure that your child has everything they need.

I see the physiotherapist doing daily stretches and exercises even though your child cries through it and your back is sore.

I see the play therapist using toys, sensory items and books to try and teach your child new skills and understanding and letting them learn through play.

I see the nurse administrating different medication daily at certain times of the day ensuring each dose is correct.

I see the specialist, researching and finding out everything there is to know about your child’s condition.

I see the speech and language therapist working out different ways to start or improve eating, drinking and talking.

I see the carer, who has no other choice but to be organised at everything, not one mistake can be made when it comes to your child’s health.

Your social life is constantly on hold because let’s be honest, you can never truly take a break and relax.

You have to juggle appointments. You often get very little sleep but there’s no chance of a nap or any time to catch up on that.

But you never complain.

It’s your child so you don’t do all of this because you have to but not necessarily because you want to either, you do it because you would do absolutely anything for your child, the love between a mother and her child is like no other.

When that mother has a child with additional needs, that love grows to enable her to become more than a mother, to also become all the professionals involved with that child.

You put on a brave face because your child does, and if they can go through everything they have and still come out smiling then you think “so can I!”

There are many hard days but there are also good days, you didn’t choose this life but it’s yours and you’ll do it all again tomorrow.