The first anniversary

Sunday 20th October 2019 will mark one year since my little warrior was brought into this world with no heartbeat.

After his medical team worked on him for an unbelievable 26 minutes he was brought to life, but at a huge cost.

Jaxon was left with global brain damage after his diagnosis with grade three Hypoxic Ischemic Encephalopathy.

After a rollercoaster of a year that has included almost six months spent in hospital, numerous diagnoses and endless therapies, it’s now seemingly obvious that Jaxon will not come through his traumatic birth unscathed and whilst we’re still unsure of what the future holds, it’s clear that there are a million and one challenges that lie ahead.

So how do we cope with the first anniversary?

Of course, the first anniversary is Jaxon’s first birthday. It shouldn’t be seen as a negative, it shouldn’t fill me with dread or sadness. It should be an exciting time for all the family.

I shouldn’t be looking back to a year ago and be filled with such overwhelming emotion that I can barely function.

But I am.

Getting through the days leading up to this first anniversary is more challenging than I’d ever anticipated.

The trauma I suffered at the time that I’ve worked so hard to keep locked away in a box is starting to break free and I’m left feeling extremely vulnerable and exposed in the most normal of circumstances.

Trying to work out how best to celebrate the fact that Jaxon smashes through every single odd that was laid at his door in those first few days of life, the odds like he continues to beat and the poor prognosis that he continues to defy, is proving extremely tough.

His first birthday is his day and his alone.

It’s his special day, a day that we weren’t sure he’d even live to see so it has to be about him, but as his mother, it’s impossible to completely detach myself from those powerful and difficult emotions to enable myself to celebrate the fact that he is here, he is defying odds and he is amazing.

Jaxon is far from developing like a typical one year old.

He doesn’t really react to the world around him and it’s incredibly tough to work out what his likes and dislikes are. He doesn’t have a favourite toy or a favourite TV programme.

His smiles and cries are so few and far between that it can sometimes feel like I’m trying to read and understand a book in a completely different language.

So what do I do?

I could stay in bed, I could let the sadness consume me and I could just watch the day pass by as if it were just another normal day.

Or I could get up, do something fun, make memories. I could make sure that we embrace the fact that a year on, despite every single hurdle and challenge we’ve encountered, Jaxon is here.

It won’t be the day I’d imagined it would be this time last year before he entered the world.

It won’t be a birthday party, a cake smash photo shoot or a great deal of presents that Jaxon will take less interest in than he will the wrapping paper.

It will however be a special day. A day to celebrate. Because every day we have with Jaxon is.

I’ll probably cry. I imagine I’ll take time to reflect and remember how life a year ago was flipped on it’s head faster than I could’ve ever anticipated.

But then I’ll look at the amazing tiny human that is here in my life and I’ll be proud that he fought to stay, I’ll continue to be immensely thankful to every single doctor and nurse that worked tirelessly to save my baby and more importantly, I’ll feel incredibly lucky that I didn’t have to say goodbye before I even had the chance to properly say hello.

ADHD Awareness: A Short History of Modern Excuses

My eldest son was diagnosed with ADHD at the tender age of 22, and he’s still only 22, so I’m right at the beginning of a learning journey as far as ADHD is concerned.

As he is an adult, my role as parent is largely that of outside observer, on stand-by to give sage advice and practical help as and when necessary: though this is made much more difficult when you are dealing with things you know nothing about.

But aren’t we all winging it to some extent in life?

One thing I have learned about ADHD so far is that some people, quite a lot of people, think that it was invented in the 1980s or 90s as a fashionable excuse for bad behaviour and a lack of discipline in children.

Well, anyone who thinks that has another think coming. ADHD wasn’t invented then, or at any time – it has been observed as a fact of life for as long as people have been recording their observations in a way that survives for later generations to find.

Hippocrates (c. 460 – c. 370 BC) made what may have been the first mention of what seems to be ADHD. He made at least one reference to some patients who could not keep their focus on any one thing for long and had exceptionally quick reactions to the things around them.

He described it as an ‘an overbalance of fire over water’. Of course that is a very long time ago, when it was generally believed that it was the balance of ‘humours’ — vital elements and bodily fluids – that gave rise both to the temperament and the symptoms of illness, so it’s hardly scientific and we have no other details about these patients that would enable us to say whether or not they fitted the modern criteria necessary for a diagnosis of ADHD.

Indeed we do have to wait until the 90s before we get the first published description of what appears to be demonstrably ADHD – the 1790s that is!

In 1798 Scottish Physician Sir Alexander Crichton published a work spanning three books entitled: An Inquiry into the Nature and Origin of Mental Derangement (if he wasn’t already under the ground, I’d tell him to get in the sea for that title). In the second book he refers to what he describes as ‘the disease of attention’ and observes that people with this condition seemed to be ‘mentally restless’ and ‘have a hard time sticking with one task or game’.

He described: ‘the incapacity of attending, with a necessary degree of constancy, to any one object’: and ‘This faculty [of attention] is incessantly withdrawn from one impression to another’.

These descriptions are consistent with the symptom criteria listed in DSM IV (the current edition of the diagnostic manual of the American Psychiatric Association) thus:

‘Inattention: the difficulty sustaining attention in tasks or play activities’, and ‘is often easily distracted by extraneous stimuli’.

At about the same time philosopher and physician John Locke wrote an essay: Some Thoughts Concerning Education, in which, among other things, he discussed a group of students who, he observed, could not ‘keep their minds from straying’ (However, without further details I can’t help wondering whether he was just a boring lecturer.)

Medical textbooks of the 1800s refer to children who today we might recognise as displaying symptoms consistent with ADHD, but back then they were referred to in terms such as ‘nervous child’, ‘mental instability’, ‘unstable nervous system’, and ‘simple hyperexcitability’.

I don’t know about recognising ADHD from that list of unfortunate terminology, but I certainly recognise some of the descriptions applied to me as a child. I can’t count how many times I was described as ‘highly strung’ and ‘nervous’.

In 1902 Sir George Still, the first professor of paediatrics in England, at Kings College Hospital, often referred to as the ‘father of British Paediatrics, gave three lectures about children who had difficulty paying attention for a long time.

He noted they displayed difficulties with self-regulation, and could be aggressive, emotional or defiant (I have a sudden sense of déjà vu – here I am again: the little girl in a pink coat, with a bad attitude).

This he described as ‘an abnormal defect of moral conduct in children’. It should be noted that, though some of the symptoms he described are consistent with ADHD, many others are not.

He’s another one who can get in the sea as far as I’m concerned. In fact, I’ve a mind to exhume his coffin and float it out on the briny blue myself: ADHD has nothing to do with morality and the traits observed are not character defects, but rather manifestations of the difficulties that people with ADHD face in a world that is not supportive of their way of functioning.

Similarly, Conduct Disorder, ODD, PDA, and whatever other conditions may be consistent with those of his observations that do not fit ADHD, are not defects in a person’s morality or character.

In 1932, some 50-60 years before ADHD was supposedly invented to let lazy parents off the disciplinary hook, two German physicians, Franz Kramer and Hans Pollnow described a condition that they called Hyperkinetic Disorder of Infancy, the main symptoms of which are very similar to current concepts of ADHD.

It was in 1937, again, way before it became fashionable to medicate naughty children instead of disciplining them (I am being sarcastic, of course, in case you hadn’t noticed — you can’t beat that out of people either — my parents tried but it just made me worse) that American doctor Charles Bradley noted an improvement in behaviour and school performance in some children to whom he had administered Benzedrine (he was attempting to treat the severe headache, caused by the pneumoencephalogram procedure he had subjected them to in order to examine their brain, by stimulating the Choroid Plexus – it didn’t work).

He identified the children most likely to respond to Benzedrine in this way as ‘characterised by short attention span, dyscalculia, mood lability (not a typo), hyperactivity, impulsiveness, and poor memory’ – traits we would now associate with ADHD.

It wasn’t until the late 1960s that the APA (American Psychiatric Association) formally recognised what we now know as ADHD as a diagnosis. It was included in their diagnostic manual or DSM when the second edition was published in 1968. Then it was known as Hyperkinetic Impulse Disorder.

When the third edition of the DSM (DSM III) came out in 1980 the name was changed to Attention Deficit Disorder. The listing created two subtypes of ADD:
ADD with hyperactivity, and ADD without hyperactivity.

A revised edition in 1987 removed the hyperactivity distinction, and combined the three symptoms (inattentiveness, impulsivity and hyperactivity) into a single type now called Attention Deficit Hyperactivity Disorder or ADHD.

It was only with the release of the fourth edition of the DSM (DSM IV) in 2000 that the three subtypes of ADHD used by healthcare professionals today were established

1. Combined type ADHD

2. Predominantly inattentive type ADHD

3. Predominantly hyperactive type ADHD

Scientists are still trying to identify the causes of ADHD: research so far points to a very strong genetic link.

No, no, no, that can’t be right, says the woman who left the house yesterday not only without picking up her keys, but also without even shutting the front door.

So, to sum up – if you’re one of those people who blames the parents for their child’s ADHD then rest easy, because you still can.

You won’t have to change your views one iota, except the one about spanking the ADHD out of them.

And I hope you’ve brought your inappropriate speedos, because you know where you can get, don’t you …

That’s right …

And make it the North Sea. In February.

National Physical Therapy Month

It’s National Physical Therapy Month here in the US, if you have ANY questions, call us, we’re here for you!!

If you’re already active on this website, you’re looking for answers to a quandary that you’re having with positioning, mobility or function.

As a physiotherapist, I know that proper positioning and posture can improve function or, discourage movement.

If your child had a complicated birth, has been diagnosed with a condition that may be associated with developmental delays or if your child was born early they may be at risk.

Early intervention can provide parents with information about their child that can help maximize their child’s ability to learn through play, regardless of their starting point and negligent of their upper limits.

Purposeful play is essential during the first three years of life.

From the moment a child enters this world there is so much to learn. As a new born, they learn to use their eyes to look around, and they look, eat, and sleep.

Then, they learn how to grasp with their hands and incorporate their mouths to explore the toys that’s in their hands.

As they hear sounds from those around them, there is cooing, gurgling, squealing and eventually, early imitation of consonant sounds.

Then, as their legs begin to push and pull, the ultimate culmination of head, neck, trunk, shoulder and hip control is crawling or creeping.

All that I have described occur usually within the first several months of life.

If there is an interruption or a delay in this sequence due to illness or injury, then early intervention may be merited.

If you’re at all concerned about movement, hearing, vision or communication, don’t wait.

There are so many things that can be done along the way to support your child’s development. There are some very low tech, DIY (Do It Yourself) solutions and some very high tech devices.

October is National Physical Therapy month. I urge you to reach out to a professional, we’re here for you!!

Anxiety is…

Anxiety is when agreeing to meet some new friends for lunch in London seems like a rash decision.

It’s where the idea of phoning ahead to request assistance on the train is too much because it involves speaking to a stranger, so you turn up on the day hoping for the best and stand on the platform chewing your fingernails and fretting because you’re not sure where the wheelchair spaces will be, or if you’ll be able to get on without a ramp.

It’s being only able to focus on one event at a time, meaning that life is spent sprinting from one event to another with nowhere near enough time to plan effectively which, of course, only increases the levels of anxiety.

It’s startling awake in the middle of the night at the smallest noise, because you’re afraid one of your children might be in trouble, or lying awake all night because one of them banged their head before bed and you’re worried their brain will swell in their sleep

It’s feeling a stab of fear when you see an ambulance heading towards home or school or nursery, convinced for a moment that it is headed to save one of your children.

It’s checking your husband’s phone tracker when he doesn’t answer the phone to make sure he made it work safely while pushing images of his mangled car out of your head.

It’s sitting in a room of people and feeling alone with the weight of all your anxiety sitting on your shoulders. Unable to relate to people who move through life seemingly so effortlessly.

It’s worrying that the message you sent was too needy, or not actually funny.

That they didn’t reply because they don’t want to talk you. Feeling tolerated, rather than liked.

It’s re-reading the messages or re-playing the conversations and trying to decide if that person is cross with you, or annoyed with you, if they have judged you as inadequate.

It’s saying repeatedly that you don’t have time for anything, when what you mean is that that you don’t have the energy.

It’s ignoring the voicemails and emails and text messages. It’s rejecting the phone calls. It’s sitting back silently in the group chats not knowing how to reply to any of it.

It’s blinding headaches, stomach aches, sleepless nights, short tempers, sensory overload. It’s catastrophising everything, all day long.

It’s never feeling good enough. It’s never feeling rested. It’s every muscle in your body clenched all the time.

It’s being prescribed medication and then not taking it because you’re worried about the side effects.

It’s lying in bed scrolling Facebook until the clock passes midnight and your eyes tear up just to keep your mind distracted.

It’s writing this blog and then going to delete it instead of publishing it, because then everyone would know the churning mess beneath the mask.

This is what anxiety looks like.

Pregnancy & Infant Loss Awareness

Out with 2018 and in with 2019, last year had been pretty good.

Family holidays, mini breaks with friends, camping and the arrival NYE of my niece Molly – perfect year end.

I thought that 2019 certainly had the potential to be an even better one; other holidays planned, home renovations, my little sister was expecting twin girls and maybe just maybe this would be the year that I went from a mother of 1 to a mother of 2.

We only made it through January unscathed. It was Sunday 3rd Feb and I had a message early in the morning from my mum to tell me my sister was in hospital as her waters had broken.

I was confused and dazed, she was only a few days off 24 weeks – what was happening?

My sister was transferred to Manchester St Marys Hospital and told that they were better equipped to help in this “Preterm Premature Rupture of Membranes” (PPROM) situation.

My mum said how there was a lot of toing and froing of Drs but not much seemed to be happening and when my mum asked how they planned to help the twins they seemed hesitant and talked about how as the pregnancy was not quite 24 weeks there was a lot of risk.

My mum told them that she would be 24 weeks in two days, that a life is a life and she expected them to do anything they could to give the girls the best chance.

My sister was given magnesium and steroids whilst being told “we need this to be in your system for at least 48 hours before the birth for the best chance”.

Babies born at 23 weeks are always treated compassionately but are not always resuscitated, as the chances of survival are very low and the equipment invasive.

The decision to resuscitate depends upon each baby’s individual situations. This was the case for our beautiful Layla who was still born on Monday 4th Feb, she was held by her mother whilst we prayed as a family for a better chance for her sister.

Each passing hour was an extra hour that the medicines were working their way through Ruby and into her baby that was still alive and fighting strong in her own little amniotic sac.

The 5th of Feb came and went and although in labour Ruby continued to grieve for the loss of her daughter Layla but persevere and hope for her second daughter Ava.

Again; each passing hour was a better chance, Ava now has the full 48 hours behind her with the steroid medication to strengthen her weak organs, she was now over the 24 week mark and would have the best chance upon her arrival.

Ava was born on Tuesday 6th Feb at 6.51am in her amniotic sac, she was kicking away and breathing – they managed to get a tube into her and incubated her.

She was a good pink colour but was not out of the woods. For the next 24 hours we prayed and hoped as a family that through losing Layla we would at least get a chance with our beautiful Ava.

This was not to be the case and after a scan revealed a bleed to Ava’s brain and no kidney function, the decision was made that Ava would spend the last time she had in the arms of her parents. She passed away Weds 7th Feb early evening.

My sister went into hospital pregnant with twins and left less than a week later empty handed. She was not the only mother though to lose babies that week, the NICU staff talked about the girls being with other children at peace in the nursery.

As a family a go fund me was set up for friends and family to help towards a funeral – over £4000 was raised and we have never seen generosity like it. A small personal funeral was held and there is now a family grave where everyone can go and visit to help the healing process.

When you have a child; I feel that there is then going forward a certain expectation, that you will just have more.

I have five brothers and sisters and we literally are “My Big Fat Greek Family”. It’s natural that people would always ask “when are you having another” or comment “don’t leave it too long”.

My son turned 11 this year and although not common knowledge we have been trying to extend our family for almost four years now.

Cameron has autism and we always put all our time and energy into helping him and making sure he has the best start, as he grew and conformed and was in a good place academic wise we decided that actually now was a good time to add to our family.

Trying to conceive is a dark, painful cycle of temperature charts, peeing on sticks and literally sucking the life out of the romance you have to try and become this reproductive machine. I can’t tell you the amount of pregnancy tests I have taken over these last few years, the tears I have cried when celebrating other pregnancies and this is not malice or jealousy – I LOVE that my friends and family have had what their hearts desire.

I cry because I hurt for me.

After Ruby lost the girls and everyone tried to get back to some kind of normality, we were preparing for our family holiday, but something wasn’t quite right following a period where I did not stop bleeding and I made a doctors appointment.

A close friend suggested I take a pregnancy test to eliminate that before my appointment and I half-hearted agreed, why was this test going to be any different.

The seed was planted though and, on my way home I popped into the supermarket; bread, milk, Clear Blue tests. My hubby was confused as I was in the bathroom waiting for this stick and telling him that “my friends said do a test before I go to the doctors tomorrow”, not paying it any notice until I heard him gasp.

Pregnant 2-3 Weeks.

The doctor told me the following morning that we need to do a series of bloods with two days apart from each to see if the HCG levels were on the rise, but I could not have these done as we were going on holiday two days later.

He advised me to go and have a relaxing holiday, that this was the perfect opportunity for rest and booked me in for the day after my return.

I bought about five boxes of cheap tests and packed them into the suitcase, I thought that by testing every couple of days that would keep me sane/calm.

We set off on our family two-week holiday and I was literally the HAPPIEST I had ever felt.

I had a devoted husband and amazing son, life was good I was so so fortunate.

We told our nearest and dearest and we even narrowed down a baby name. We had an intimate meal as a family of three one evening and shared the news with our son.

We learnt early on with his autism not to pop surprises on him, so we always talked about maybe one day him having a brother or sister, this would be a big change for all of us and we wanted him to share in the experience and have that adjustment time.

We made it clear that it was very early days and how like when aunty Ruby was pregnant with the twins sometimes there are issues, another autistic trait is that he is very matter of fact.

My boy; my gorgeous, clever blue eyed boy was so so excited.

We got caught up in the moment, this was something we had dreamed of for so so very long and this was it now, it was happening.

I continued to test every couple of days and those little two lines kept popping up strong until a week into the holiday – the test was there, positive but very very faint.

I panicked; I knew I needed to go and find a chemist and get a digital, I needed to see the actual words. It was a Sunday though and all the chemists were closed on this little Greek island.

It was the worst 24 hours – inside my head that it. I put on a good show of it for the rest of the family and holiday, but I was on autopilot.

I went and paid 16 euros for a digital test and hurried back to the villa.

My heart knew – I knew that I had miscarried, but I wanted to see it confirmed.


I had by this point known about my pregnancy for just 10 days; 10 days literally on cloud 9 mapping out our new future of a family of four, how we would possibly have to move to a new house and thinking about childcare.

I came away on this perfect family holiday literally feeling the happiest I could ever remember, I was returning home broken.

I went to the doctors appointment as previously arranged and told him what had happened in the two weeks I had been away, he apologised and explained to me that this was likely to have been a chemical pregnancy and went on to explain what this was.

Of course; he didn’t need to explain, I know what a chemical pregnancy is and how many women go through this – I read this every month when I’m googling two week wait symptoms.

I was embarrassed now; this was a pregnancy that ended before it could be detected by any ultrasound.

All I had now was pictures of positive pregnancy tests and heartache. I had to suck it up though, play it down.

How could I even compare this to what my sister had gone through only three months earlier.

The thing is, it is incomparable but it’s a loss in its own merit.

With every positive pregnancy test there is an entire world of hope and desire and it doesn’t matter if you are pregnant for 1 week, 1 month or if you lose your child well into the pregnancy – your pain for that loss is real, you should not be embarrassed to mourn.

As my beautiful mum said – a life is a life.

Let me tell you why I’m struggling

I’m struggling. It might be obvious but then again it might not.

Everyone’s busy with their own lives. I get that. We all have problems. I get that too.

But let me tell you why I’m struggling anyway.

It’s actually not because one of my children has complex disabilities.

Oh yes he’s the reason my back aches, my eyes fill with tears and I am always tired. (He’s also the reason I wake up every day, the biggest reason I smile and the motivation to carry on).

It’s not because my other child is autistic though that makes me worried about her vulnerability and her naivety. (She’s also the funniest, smartest and most caring girl ever)

What really makes me struggle is this:

It’s the broken promises from people who are paid to support us. Social workers who talk about respite and funding and grants only to later admit that we either don’t qualify or the funding ran out (again!).

It’s the schools promising at meetings that things will change only for two weeks later to find we are back to how things were before.

It’s the politicians promising reform for children like mine only to not bother doing anything for us after being voted in.

It’s organisations who promise me the earth but leave me with just a handful of dirt. I feel like a beggar with my hand out waiting for the next invisible promise.

That’s what makes me struggle.

It’s the fighting for every little thing.

Fighting to ‘stay on the books’ when everyone wants to discharge just to meet targets.

Fighting to get decent targets on an educational support plan, get it written up in a timely period and keep it up to date.

Fighting for transport that is safe, fit for purpose and adequately staffed. Fighting for a school that meets my child’s needs then fighting just to keep them there.

Fighting to be heard. Fighting to be seen.

Fighting for the tiniest scrap of respite just to get breathing space only to be judged by society with cries of ‘you had them. You look after them!’

Fighting for basic benefits from a government who thinks 48 pages of information still requires several pages of ‘anything else we should know’ and then turns you down anyway.

Fighting to find written evidence because it takes months after appointments just to get the most basic of reports, and even then your child’s name isn’t even right.

That’s what makes me struggle.

It’s the relentless judgment, from family, professionals and even strangers.

‘You are not still dressing a child THAT age are you?’, ‘why can’t you just get a babysitter like everyone else?’, ‘you should get a job instead of sitting home all day watching daytime TV!’, ‘Did you vaccinate?’, ‘no child of mine would get away with doing THAT!’

Everyone has an opinion and it seems that because my children are different that it’s ok to share that, often loudly.

If I park in a disabled space I am wrong because my child can walk, if I use a disabled bathroom then I am taking it away from a wheelchair user, if I use the baby change room (because proper suitable changing facilities are so rare) I am taking away from mothers with babies.

If I let my child flap in the lift in excitement I need to ‘calm him down’, if I drag him away causing a meltdown I need to ‘learn to control my child!’

I’m the easy target, the obvious issue, the biggest problem in society.

That’s what makes me struggle. Yes the care needs of my children are high. Yes the hours are long, sleep is little and the burden at times very heavy. But they make everything worth it.

If only I could just care for them without worrying about broken promises, the next fight for something basic we need (did I mention the NHS only allows my child three nappies in 24 hours? Three? How many times did you pee today?) or the constant stress of being judged.

The caring for my children isn’t what makes me struggle.

It’s the fact that no-one else cares that does.

Parents out of fuel

Some days stay in the memory a long time… this one I will never forget.

As so many stories do, this one started quite simply… I set off from my work office in Luton to travel to a venue in Sussex to run an evening training session.

I remember wending my way around the M25 glancing at two displays… the one on my SatNav telling me how many miles I had to go, and the one on my dashboard telling me how many miles of petrol I had left…

At this point, the dashboard was winning handsomely… At this point…

Around the bottom of the M25 I went, “Oh there’s a service station, shall I stop to fill up? What, at those prices? Surely I’ll find cheaper petrol later, after all I’ve got enough to get to my destination…”

Down the M23 I went and then my SatNav took me off onto an ‘A’ road… “Now I’ll find a cheaper petrol station…”

Then several things happened very quickly… It got dark, and immediately afterwards my SatNav took me off down a tiny country lane, then an even smaller one… Miles went past as I followed the firm instructions of my electronic navigator, now hopelessly lost without it.

I was also alarmed to see that the battle between the mileage readouts on the SatNav and the dashboard had reversed fortunes; I now didn’t have enough petrol to get to my destination and what I had left was going down very fast!

Into single figures the fuel remaining readout went, then in the time it took Ted Rogers (for the more mature reader) it was 3-2-1 and then a plaintive looking 0 blinked accusingly at me from the dashboard… no fuel left.

Now in the comfort of home as I write this, I can reassure myself that they build a few miles into these things so that when it hits zero, the car doesn’t just stop, but in the middle of a dark wood on a country lane with no idea where I was, reassurance was at a premium!

So, being the praying sort, I prayed.

“Father, you know the pickle I’m in, it would be great if you could see your way to finding me a petrol station very quickly please!!”

And, to be fair, as answers to prayer go this one was pretty quick! Within 60 seconds I emerged from the gloom and onto an ‘A’ road, a brightly lit ‘A’ road, with a petrol station directly opposite! “Wonderful, thank you Father!” I lovingly cried as I pulled onto the forecourt, the 0 on my dashboard now looking quite desperate.

As I pulled in, I noticed that the first petrol pumps had those “Sorry Out Of Use” hangers on… So did the next set, and the next.

As I looked around increasingly frantically, they ALL had those mocking, vindictive little signs… “Nooooooo!!!” The shop was open so I rushed in and enquired whether they had any petrol at all… “No, sorry mate, we’re completely out!” So was I, and apparently the next petrol station was some five miles up the road!

I stormed back to my car… Even the 0 on my dashboard seemed to be mocking me… I had a word with God (possibly several) about his so-called answer to prayer, very funny, very humourous indeed… to which he replied that he had given me exactly what I had asked for (which, to be fair, he had) and that I should be more specific…

Right then, you want specific? Try this… “Can you please allow me to drive to the next petrol station without running out of fuel, for it to be open, to have plenty of fuel in pumps that work, to take credit cards, including the card I have, for the credit card machine to work….”

I may have still been listing the requirements when I arrived at the next petrol station, which of course delivered on all of these expectations as well as a chocolate bar… comfort food was also desperately needed!

So, what has any of this got to do with additional needs parenting? Well, there are times when we are simply out of fuel, the zero is flashing on our dashboard.

We’ve been drained of all of our reserves, and we’re empty.

Those are one of the times when we need to be specific about what we need, what we ask others for.

Not what we might want at that point, but what do we really need? What is going to help us the most?

By thinking carefully about this as we ask, and about how we ask, and even being willing (or desperate enough!) to actually ask, is important.

As an additional needs parent, sure there are times when an extra pair of hands, or a moments peace, or even a comfort chocolate bar would be nice, and it might be what we want, but something more than an answer to the immediate crisis might be even better.

Maybe someone that is willing to let us share with them what additional needs parenting is really like, maybe finally opening up and admitting that we aren’t actually SuperDad/SuperMum and that some ongoing support is needed, maybe even getting some proper self-care and respite arranged (and yes, I know that is hard).

These longer-term solutions are wonderful gifts to receive… but we have to be willing to ask for them.

Let’s not wait until we are out of fuel.

Now, where’s that emergency petrol tank…

Mental Health Awareness

Typically, and now a more well-known fact is that 1 in 4 people suffer from a mental health condition in a given year.

Between 25 & 40% of people with learning disabilities experience mental health problems.

Of young people and children, the rate of a diagnosable psychiatric disorder is 38% where there is a learning difficulty compared to 8% of those who don’t.

These children and young people are also 33 times more likely to be on the autistic spectrum.

Furthermore; lets not overlook carers who look after family members with a mental health condition, are likely to have an impact on their own mental health, some 71% of carers have poor physical or mental health.

Early intervention is paramount, not only this but normalising mental health early on and removing any stigma.

I have an autistic son and have experienced depression and anxiety myself in the past.

I never want my son to experience these emotions.

The statistics above tell me that he has a higher chance though than most people. The emotional wellbeing and mental health of young autistic people is often overlooked as many of their symptoms could appear “typical” of the condition itself.

For years I had anxiety but didn’t know what it was, didn’t know how to explain it to others. I remember telling my Dr “my chest is tight, and I feel like I can’t get my big breath, like I do a lot of yawning to try and draw breath” – this was about 12 years ago when I was pregnant, and he sent me to hospital to check my oxygen levels.

No one identified it as a mild anxiety attack – not one of the professionals.

Your bodies are very clever things, when you’re feeling anxious or stressed, stress hormones such as adrenaline and cortisol are released.

These hormones cause the physical symptoms.

Other symptoms, that could easily be dismissed are:

• Feelings of worry or unease
• Insomnia
• Lack of concentration
• Feeling irritable
• Feeling on-edge
• The need of reassurance
• Tearfulness

I had the chance in my workplace to join a training programme to become a Mental Health First Aider (MHFA) and I leaped at the chance.

It was my own experiences of suffering with mental health and brining up a child with a disability that helped me get a place on the course.

The training covered the history of mental health and how the stigma originated from people who were placed in “mental institutions”.

I will never forget the first group task which was to write down on a piece of paper a list of negatives words linked to mental health and a list of positive, try it yourself.

We quickly reeled off all the negative associations but could not think of a single positive, it was very sad.

We completed this task at the end of the two-day course and we found that we actually filled up the positive list first with words like optimism, healing, recovery, support, truth, peace, courage, hope.

Its changing your mindset, imagine a world where people didn’t have the negative associations.

We have the power in schools and as parents to teach the next generations that its ok not to be ok and trying to find the positives first.

Please find below some government websites for advice and support:

Mind – for better mental health:

Carers Trust:


Baby Loss Awareness Week: Not Nature’s Way

An early miscarriage is a lonely experience.

From the moment you conceive, hormones begin to make profound changes to your body in preparation for the birth and nurturing of a tiny human.

Even before you yourself realise that you are pregnant you may already notice a funny taste in your mouth; in place of the heavy, dragging ache that signals impending menstruation you may feel a strange tingling sensation, somewhere between excitement and cystitis, in your lower belly; your sense of smell may become weirdly acute.

Only you will be aware of this: there is no outward sign yet that announces your pregnancy to the world.

If you miscarry, there is no outward sign to show that anything has happened.

To the people around you, it is a non-event.

Early miscarriages happen away from the gaze of others: tucked away in bathrooms and bedrooms, or under clothes carefully chosen to hide thick padding, while you go about your daily obligations in the midst of personal disaster, your heart breaking quietly so as not to disturb anyone else.

If the miscarriages are recurrent, the grief is compound.

Each time you grieve not only the child you have just lost, but all the ones that you have lost before, all over again.

You grieve because your chances of motherhood diminish further with each new loss. You grieve because your sense of womanhood is bleeding to death.

And you grieve alone: even if other people knew you were pregnant. Unthinking, they utter placatory comments not to comfort you, but to comfort themselves, because they are made uncomfortable by your experience and your grief.

People don’t give you their condolences, they give you reasons why you shouldn’t be grieving.

There are no rituals associated with early miscarriage except for the ritual of denial:

‘You weren’t really pregnant – there was just a space for a baby.’ (Yes, I was. I had a positive pregnancy test. I had a scan.)

‘You’re young, there’ll be other babies.’ (But I wanted this one).

‘Chin up – at least you know you can get pregnant.’ (But that’s no use if I can’t stay pregnant long enough to give birth.

‘It wasn’t meant to be.’ (Then why did I conceive in the first place?)

The one I heard most often, though, was:

‘There must have been something wrong with it. It’s nature’s way.’

This was never a comfort, because I never believed it was true.

Each time I miscarried the ‘products of conception’ as they are so charmingly referred to medically, were sent off for histological examination, and each time they came back N.A.D – nothing abnormal detected.

My husband and I were examined also, down to an almost molecular level, and likewise, we were genetically N.A.D.

Eventually a likely cause was discovered – a peculiarity with blood clotting that the junior doctor struggled to explain to me in layman’s terms.

I was prescribed a combination of aspirin and heparin, and subsequently went on to have three children.

I did not lose my babies because there was ‘something wrong’ with them. Every day ‘normal’ or ‘healthy’ babies are lost and, every day, babies with congenital conditions and disabilities are born and survive.

Miscarriage is not nature’s way of weeding out individuals who ‘are not fit to live’. Nature does not have ‘a way’ or ‘a plan’ for dealing with disability. Nature does not make moral judgements on who deserves a shot at life and who doesn’t. Mankind does that.

When ‘Mother Nature’ fails to live up to mankind’s expectations of what she should do, he takes it upon himself to rectify her deficits: he invents ways to detect congenital conditions in the womb so that he can make sure affected pregnancies are ended by artificial means, in case nature fails to do the job he thinks she should.

The flagship condition for this kind of antenatal screening is Down’s Syndrome – it’s the one that most people have heard of.

It is one of the most feared and demonised congenital conditions. It may surprise you to learn that Down’s Syndrome, of itself, is not a fatal condition and it most commonly causes only mild to moderate learning disability.

It does carry a greater likelihood of certain additional or ‘co-morbid’ medical conditions; but most of these are treatable or manageable and can also occur in people without Down’s Syndrome.

People with Down’s can and do live happy and fulfilling lives, and so do their families. I know this because the youngest of my three children has it.

He was diagnosed antenatally. By then I knew the pain of pregnancy loss well enough to know that I could never bear to put myself through it voluntarily.

Too many times I had been carried into hospital bleeding heavily to be told by the doctor that miscarriage was now inevitable and there was nothing anyone could do.

This time, as the doctor explained to me, in not so many words, that I really must ‘lose’ this baby for the good everyone, I knew that the loss was not inevitable, there was something that could be done.

This time I had the power to say no to loss and the awful, lonely grief that comes after.

Every year in October I see posts on social media expressing sympathy for all those who have lost babies due to Termination for Medical Abnormality: often the women themselves will euphemistically express it as having ‘lost [the baby] to Down’s Syndrome’ (or other condition).

But they haven’t really. They lost their baby to society’s ignorance and prejudice.

Many of them will have been led to believe that their loss is inevitable by the medical professionals involved in their care.

They are given the worst-case scenario of Down’s Syndrome: told that the baby will probably not survive the pregnancy, or will inevitably have many serious complications, that their marriage and their other children will be adversely affected.

The ‘what-if-everything-that-can-go-wrong-does-go-wrong’ picture is presented to them as though it were a snapshot of everyday reality.

This reinforces the view that people with Down’s Syndrome lead lives of suffering, and that their families suffer too.

It reinforces the view that Disabled people are better off dead; that it is a kindness, a mercy, an act of love, to spare such babies from having to live.

The prevention of suffering is one of the most commonly expressed rationales behind the test-and-terminate mentality of the antenatal screening process. But just who exactly are they trying to spare? Studies have shown that the majority of people with Down’s Syndrome are happy with their lives, and so are their families.

The truth is that more individual suffering may be caused than alleviated.

The negatively-biased information often given to expectant mothers, either contained in literature, or by word of mouth from the professionals themselves, is inaccurate and misleading.

It paints a picture of Down’s syndrome that would not be recognised by anyone with lived experience of the condition.

When we give women only negatively-biased information about Down’s Syndrome at any point in the testing or diagnostic process we subtly (and not so subtly) steer their choices in a particular direction – towards termination as the first and best option.

This is enforced choice. This is no choice at all.

Enforced choice pushes women into choosing unnecessary and avoidable baby loss. It pushes women into unnecessary and avoidable grief, which can have a very detrimental effect on their overall mental health; especially if that decision was made because they were being pushed to decide quickly, and abortion was repeatedly presented to them as the first, best, and kindest option.

But there is another way. What if we gave women unbiased accurate information provided not just by medical professionals but by people with lived experience of Down’s Syndrome?

What if we supported women who express a wish or inclination to continue with their pregnancy regardless, and gave them an opportunity to prepare properly, and in hope, for their special new arrival, instead of undermining their judgement by repeatedly asking them to consider termination instead?

What if we just accepted their choice and didn’t make them fight for it as I had to fight for mine?

Of course, I can’t tell any other woman exactly what her life would be like as the parent of a child with Down’s Syndrome.

I can’t predict exactly the what challenges they would face. I’m not going to lie to you, I’ve had some difficult and exhausting times.

But, equally, I’ve had many utterly joyful times.

Most days fall somewhere in between – simply ordinary and contented days where I navigate life much the same as anyone else.

There is never any lack of love, or pride in my son. But what I can tell you, hand on heart, is this: living with my child with Down’s Syndrome, dealing with him every day, is a heck of a lot easier and better than grieving for him would have been.

Take it from one who knows.