After having my two children with special needs, I noticed a profound change in myself.

I was frequently on edge, constantly worried, and exhausted all the time.

I thought my symptoms were simply a case of being overwhelmed and sleep deprived, like any mother of young children is bound to be.

Then I read an article online one day about caregivers who experience Post Traumatic Stress Disorder (PTSD) and recognized myself in many of the symptoms the article described.

According to the National Institute of Mental Health, PTSD is “a disorder that develops in some people who have experienced a shocking, scary, or dangerous event.”

Caregiver PTSD is real, and it is prevalent. It may be mild, or severe, and it can hit you when you least expect it.

From nightmares to paranoia, to full-on panic attacks, it affects more parents and caregivers than you could imagine, but many don’t recognize it for what it is or feel guilty, as I did, for even considering that they have it.

I had always associated PTSD with soldiers who had come back from a war, or people who had been through something extremely traumatic.

In the past twelve years, I’ve seen my children go through some grueling things: high-risk and emergent surgeries, respiratory failure, and being poked and prodded more times than I care to remember.

I’ve had to contain my child during some very intense, very public meltdowns to keep her from hurting herself.

It was traumatic for them, and it was also traumatic for me.

It’s understandable that they are fearful of anything medically related, but I was just doing what any parent would do, right?

In those harrowing moments, I did what I had to do to help my kids get through whatever was going on.

I didn’t realize the damage it had done to me until much later when the nightmares, flashbacks, and anxiety kicked in. It comes in waves.

Sometimes I’ll be fine for months, and then something will trigger a memory: a smell, or a sound, and the next thing I know my heart is racing and I have trouble catching my breath.

Another thing I realized is that I am almost always in a state of hypervigilance. Hypervigilance is when your brain and your body are constantly on high alert, and it is a common symptom of PTSD.

I’m on high alert during cold and flu season, because I know that a simple cold could lead to a hospital stay for my son if we don’t catch it early.

I’m on high alert for things that may trigger my daughter into meltdown mode when we’re out and about. When your brain and your body are on high alert all the time, it can take a toll mentally and physically.

There are days when I do the bare minimum because that is all I have the energy for, and there are some nights that I have to take melatonin to sleep because my brain just won’t “turn off.”

To all the other parents of special needs kids who are struggling with PTSD, whether you have mild symptoms or have those days when it’s hard to function- be kind to yourself.

Author Eleanor Brownn stated that “You cannot serve from an empty vessel,” and that’s the truth.

Reach out to someone, whether it be a friend, a family member, or a professional. Talk about the hard stuff- don’t suffer in silence.

Let people help if and when they offer and be specific about what you need (I know it’s hard- I am the worst at asking for or accepting help).

Keep a journal – sometimes it helps to sort out your thoughts on paper.

Most importantly, know that you are not alone.

Since entering the world of special needs there are many life lessons I have learned; below are just a few.

– Judging others comes too easily to us all; trying not to judge – now that’s hard.

– All may not be what it seems.

– Sometimes the worst-case scenario; brings hidden joy.

– Appreciation for laughter is so, so often undervalued.

– Life isn’t about what you have or what you don’t have.

– Celebrity’s lives are not important to your life.

– Facing the known can be just as scary as facing the unknown.

– Friends come, friends go.

– Plans change; having a fluid plan works best.

– Usually if I smell it; it’s exactly what I think it is.

– Doctors are people too; they can be questioned.

– Raw sausages, playdough, crayons…all come out the other end, no issue.

– It’s okay not to answer the phone; if it’s vital, they’ll ring back.

– Life is truly what you make of it.

– Strength can be born from fear.

– Motherhood and parenthood is different for every single person; be kind.

– There’s time and then there’s quality time; we must make more time for the latter.

– Finding the funny comes back once you learn to be honest with the life you have …this is an ongoing process.

– Motherhood and parenthood can be stressful; spend the time looking for your kin – they can be tricky to find.

– Somethings we can’t change with positive thoughts or by lighting candles; some things are awful …it is fine to say it.

– Try not to dwell too much; it can cause huge wrinkles …

– Being sad is just as acceptable as being happy …

– Everyone loses their minds temporarily …just be sure to find it again and if you can’t – ask for help.

– Pushing a wheelchair is hard, back breaking work…hold the doors and move out of the way!!

– Most disabled toilets are not actually designed for people with physical disabilities.

– Mindfulness is not a hippy dippy notion; it’s more like an awakening of the soul, mind and body but you must allow it to do that for you.

– Being in the moment is hard work; keep trying, you’ll get there and it will be worth it.

– Your kid is special. I don’t care if you don’t like the term – my kid is special; I’ve never met another almost 16-year-old who has taught an adult so much. That to me is so SO special.

– Dancing to Mickey Mouse Clubhouse can be the highlight of your day; that’s pretty cool; there are many parents out there who would give their life for a moment like that.

– You are allowed to be angry; just remember to aim that anger at the right things and dump it there.

– Holidaying away from your kids is vital, a day or seven …doesn’t matter, just do it at least once a year.

– Respite services do not get enough praise.

– Nurses are often overlooked by doctors but those guys know an awful, awful lot.

– Trust is something you may have to give to a lot of different people; that doesn’t mean that you can’t ask questions.

– If something doesn’t feel right; listen to your gut – that baby is rarely wrong.

– A clean house is actually impossible.

– Whiskey tastes better the older I get, not the other way around.

– Say what you mean and mean what you say especially when fighting for your child’s needs; if you make a threat, follow through – I promise, you’ll only have to do it the once – they will write a little note about you and you won’t be mucked around again when it comes to your child.

– No one becomes an advocate without having a child like mine or yours. We don’t even realise that’s what we are doing; advocating, until someone else points it out.

– Family are there when you need them; even though they have their own stuff going on.

– Everyone has stuff. Those who pause their stuff for your stuff, are the real deal; keep them close, treasure those people.

– Netflix is absolutely the best thing to keep the kids entertained while you catch forty winks on the chair.

– Sleep is a privilege; as is hot coffee.

– A feeding tube isn’t as scary as you think.

– Kindness is a strength, never a weakness.

– We should all fight for what we believe in unless it’s unicorns because they aren’t real.

– Life changes; adapt as best you can.

– Memories are indeed treasures.

– Life is for living; don’t get bogged down by details.

– Remember your friends; they miss you, reach out.

– Happiness is whatever puts a smile on your face; your kids playing, your child singing, your kids finally asleep.

– Parenthood isn’t a competition; we are all doing the best we can and we all feed them junk food rather than cook, we all lose our sh1t at them and we all, all feel that blasted guilt…

– Don’t let parent guilt win.

– Inner peace can come once the kids are in bed; no, I’m kidding, inner peace can come when we allow it to.

– Never wear heels when you know your child is a runner; so what if it’s your wedding day?!

– Bring your child out. Let them be loud. Stand and be proud.

– You. Can. Do. This.

– Remember to smile …it suits you x

When Sam was 5 months old and desperately ill the subject of hospice care came up and I will admit it was the last thing I wanted to think about.

My boy was going to make it, he was going to be absolutely fine.

What use did we have for a hospice?

As the full extent of Sam’s condition started to become clear, we agreed to at least visit and see what support was available.

We desperately needed it; both me and Sam’s Dad were barely functioning, fragile with exhaustion and fear.

Our family liaison lady, Debbie, greeted us at the door and welcomed us in… mugs of tea and biscuits were rapidly produced and we sat down for a chat, all the while I was clinging onto our baby like both our lives depended on it.

I still remember that young mum, broken by grief and fear, terrified that she wasn’t up to the task of caring for such a fragile little boy.

I’m not her anymore, over the years I’ve grown alongside Sam in confidence, our boy has shown what he’s capable of and is loved and happy.

The support we have from Treetops gives us breathing space when things are bad and have given us a place to be a family where we don’t have to worry about when medications are due, or feeds, or any of the other mundane medical side of having a complex child.

For Sam, it is a place full of love, fun and laughter; he loves his visits, from the fully accessible playground, to the sensory room and the craft area there’s something for all the children to enjoy.

For me and his Dad, it allows us time to be together as a couple, doing the usual things other parents take for granted; it also allows us to just be a normal family for once.

Many of the staff who were there all those years ago are still there now, and they still remember how tiny Sam was!

For us, Treetops has been there throughout our journey with complex medical needs and will remain a hugely important part of our lives.

It really is our home from home.

It is, of course, a RADAR key.

The RADAR National Key Scheme is a nationally recognised scheme that provides access via a user-held key to (so-called) accessible toilets, which often must be kept locked to counter vandalism and misuse. Of course, there are many accessible toilets that are left unlocked, but Sod’s Law states that when you’re desperate the only nearby suitable toilet will be part of the key scheme.

You see, if either Freddie, or myself, needs the toilet while we are out, we have to use the accessible, or ‘disabled’ toilet.

My youngest son, Freddie, has learning difficulties, developmental delay, hypotonia, and poor fine motor skills: all of which mean he needs some help and supervision when using the toilet.

I certainly couldn’t leave him waiting outside the ladies’ while I go to the loo; he is vulnerable, has no sense of danger, no fear or mistrust of strangers, and is apt to get distracted and wander off.

But this little key (which is actually quite big compared to my other keys) is not only the key to a day out, but also the key to the realisation of just how much misunderstanding there is about so-called ‘disabled’ toilets.

I’ll spare you a lecture on the absurdity of that phrase, because I’m not talking about misunderstandings in English grammar, but about the general misconceptions regarding which people might need to use an accessible toilet.

Because, despite the recent appearance of notices stating that ‘not all disabilities are visible’, many non-disabled people still seem to believe that ‘disabled’ toilets are only intended for wheelchair users.

Cue dirty looks, tutting, and even snide whispers when an ‘able-bodied’* woman (like me) takes an ‘able-bodied’* child (like Freddie) into one.

Not only do we need to use the accessible toilet, we’re pretty much obliged to.

Although there is no set legal limit, commonly accepted safeguarding guidelines state that children over the age of eight should not use toilets/changing rooms designated for the opposite sex, and many public places incorporate these guidelines into their policy.

Freddie is nearly ten, well over the age at which it is generally considered appropriate for a boy to go into the ladies’ toilet, and I am definitely far too old to go into the gents’ with him.

But it isn’t the fact that some busybody might complain that stops me from taking him into the ladies’ (probably the same person who rolls their eyes when I take him into the ‘disabled’ toilet): because for every one of those there will be half-a-dozen who’ll say ‘Oh go on in, duck, I don’t mind’.

The reason I don’t take him in is because this isn’t about what other people think, it’s about Freddie, and his dignity and comfort.

Not only is there not much room for two people in a standard toilet stall, there isn’t all that much privacy either.

We can be overheard whilst inside the stall, and when we come out to wash our hands he can be seen, a growing boy in the ladies’ toilets.

It’s not good for his confidence, or his self-esteem, it’s not good for him full-stop.

It makes him a figure of pity; it’s embarrassing for him.

You see, having a learning disability doesn’t mean that you are not aware.

It doesn’t mean that things like this don’t matter to the individual – they DO.

Perhaps you think it is unfair of me to complain about the general lack of understanding regarding accessible toilets, and perhaps it is.

After all most people don’t need to use them, and so, naturally, they don’t think about them – it’s none of their concern.

But it should concern all of us.

And not just in the interests of a fairer society for all, but out of self-interest (often the greatest motivator of all).

Disabled people form the largest minority group on earth.

And, uniquely, it is the only minority group that any one of us could join at any time. If you, or someone you love, joined this group tomorrow, hopefully you would be among the lucky ones, like Freddie and me, for whom a standard accessible cubicle is suitable, because we can almost always find one when we need to, even if we have to carry a special key to get into them.

But if you were to find yourself among the quarter of a million or so members of the population who require a height-adjustable adult-sized bench and/or a hoist to fulfil their toileting needs (often referred to as a Changing Places toilet), you would find that, far from being only for wheelchair users, many standard ‘accessible’ toilets are completely unsuitable for  some wheelchair users.

For them, and their families/carers, my little key would not unlock the door to dignity, and a nice day out with the family, nor even a trip out to buy essentials, or a visit to the doctor, or any other of the countless errands, outings and necessary excursions that the rest of us take for granted every day.

For them the key is held by other people, people who grumble: ‘it’s far too expensive to install and maintain such facilities,’ or ‘why should we have to provide facilities like that?’ or even ‘they should just stay at home.’

There are more ordinary public toilets in Wembley Stadium alone than there are Changing Places toilets in the whole of the country.

This situation is one of the most eloquent demonstrations of the Social Model of disability – where people are unable to participate in certain things not because their ‘condition’ or ‘impairment’ prevents them from being able to, but because society makes it impossible by failing to cater for their needs.

But it could so easily do so.

Where the key to this really lies is in a shift away from the ‘why should we?’ attitude to one of ‘why shouldn’t we?’

After all, there but for the grace of God …

To find out why not all ‘disabled’ toilets are suitable for all disabled people, or to learn more about the Changing Places campaign visit here.

*Actually ‘able-bodied’ is not a term I use myself, I prefer ‘non-disabled’, because there are disabilities that are not physical, and disabilities that do not appear to be physical, or are not ‘visible’ at all.

They give us the opportunity to think about good things that have happened, and to remember them with the people that are closest to us.

Big family occasions are an important part of that, whether it’s wedding, a baby’s christening, a great big picnic in the park, or the annual Christmas get together, they can all be great times.

As we celebrate the ‘International Day of Families’, we might think of our family, or of the families of people we know… Families that come in all shapes and sizes, big families, small families.

We might remember some good times we’ve had with our families, and we might remember some difficult times too.

But our families can be more than just the people we are related to by birth, long-term relationships, adoption, etc.

Sometimes there are people who feel like family, who we treat like family, who have no traditional relationship to us at all.

This can especially be the case for those of us that have children with additional needs or disabilities, where there are some key people in our lives that can be very much our ‘family’.

Who is in yours?

In ours we have the friends that just ‘get it’…  People who we don’t need to explain things to, people that we can totally rely on, people who will listen to us when it’s tough, and will roll their sleeves up to help us out even when it’s at the worst possible time for them.  Do you have friends like that?  They can be invaluable!

Then we have the folk who support us and are carers for our son, James (aged 15, Autistic, with Learning Disability and Epilepsy).

People who love him enough to care for him in every way, including the ‘yucky stuff’ and keep on smiling.

People who will sit with him, help him know what is going on and what is happening next so that he can prepare for it.

People that will help him bathe, help him to bed, and will treat him as their own.

When we take James to church, there are friends there that care for him too, people who gladly give of their time to support James, help him to really belong, ensuring that he has the very best time there possible.

And there are the professionals, the people who engage with James to help him learn, who help him with his anxiety, to support him in many, many ways.

When we think about all of these people, people who we really couldn’t do without, people who we are in contact with all the time… these people are an extended family to us.

The relationships we have with them are just as precious, just as meaningful, just as loving as they would be with a cousin or an aunt or even a grandparent.

We all, as parents of children with additional needs or disabilities, have extended families like this.

Extended families that help us to survive, to function, sometimes even to thrive!

So, as we think about the International Day of Families, let’s celebrate not just our immediate family, whatever size and shape that might be, and celebrate our wonderful extended families too!

I don’t know about you, but sometimes I can be guilty of taking our extended family for granted, so on this special day let’s make sure we thank them, celebrate them, and show them how much they mean to us… they are our ‘family’ after all!

I am finding as Amy grows up that there is more to celebrate and more to be excited about.

Sure, new challenges appear such as finding appropriate changing facilities, and things like strangers not being necessarily understanding.

But we are seeing a calmer more tolerant Amy, and day by day we are figuring out what is troubling her and finding new ways to try and help.

You’ll have the days where you win amazing prizes in the school fair’s tombola, the days where you have a family meal and she stays happy the whole time, the days where you make precious family memories.

But equally you will have the days where you inadvertently pull out your daughter’s GJ tube, or your daughter has her differences loudly questioned many times at a trip to the park.

Today actually was all of those things!

Each day is so varied and full of different occurrences… you could never call our life boring.

You’ll have the days where all of your calls are returned, you have a successful shopping trip with minimal meltdowns and apt parking.

But you’ll have the days that as soon as you get a moment to yourself you fling yourself dramatically face down on a pillow and let out the loudest, ugliest cry you can do.

It’s all about getting a balance, and a bit of perspective.

When you have a child with a disability you can often spend your life second guessing their every movement.

You can find yourself checking their temperature constantly, panicking over a viral rash and thinking it could be something worse and so on.

But I think when you’ve seen your child fight for their life on more than one occasion you’ll be predisposed to paranoia and anxiety.

You’ve come close to goodbyes before and you’ll do anything you can to not have it happen again.

Any day where you aren’t calling an ambulance, or waiting for your child to return from theatre, or not stuck in hospital is a good day.

Even the days where you feel like it isn’t.

I recently started to try and cultivate some new hobbies.

I started geocaching (which is basically treasure hunting… if you’ve not heard of it I highly recommend it!), rock painting, mystery shopping (a handy little earner for those not so busy days) and have also signed up to volunteer at a local special needs school.

I feel like some days we are just passing the day any way we can to get to bed time because it can all be so draining.

Or I will spend a respite day frantically trying to complete every single chore, knowing that when I pick her up it won’t be as easy.

Sometimes, pointlessly painting a rock should be more important than putting washing away.

Sometimes, you can collect prescriptions AND go on a treasure hunt.

Our weeks can be such a blur of appointments, therapies, phone calls and paperwork… that really, we need to just step back and admire the beautiful blossom trees.

Or sing that one extra nursery rhyme before rushing to the school gate in the morning.

We need to collect these little nuggets of pleasant memories and build up a huge collection so big, that those bad days don’t seem so bad.

I recently became a bit poorly myself and had left it so last minute that there were no GP appointments left.

Furious with myself we attended the out of ours doctors and I got the antibiotics my body had so desperately been crying out for for days.

Why is it that with our children we would immediately fix the problem, but when it is ourselves we have no sense of urgency at all?

Without us, there is no them.

It was an important lesson in self-care… one that impacted my one night with Amy’s dad where she was at respite.

So, in short; stop sometimes.

Just stop.

And breathe in all that is good in your life.

Exhale all that is bad.

Look at those photos that make you smile.

For me right now it’s the one of Amy very purposefully interacting with our dog Monty.

Every time I see it I think wow, how far has she come; and how amazing are dogs.

It makes me think of my family and everyone in our lives and take stock of actually, just how lucky we really are.

Those moments are why I am here.

Our trach journey began in January of 2011, when our fourth child, Chance, was born.

We knew there would be some complications.

My 20-week ultrasound revealed that his lower jaw was extremely small, and it was determined that he most likely had Oto Palatal Digital Syndrome; a rare genetic condition that runs in our family.

My daughter and I are both affected as well.

Within hours of his birth, it was determined that he would need a trach.

His lower jaw was positioned so far back that his tongue kept flopping back, blocking his airway.

Surgery was not an option yet as his jaw needed time to grow.

We weren’t novices at having a special needs child.

My daughter has a feeding tube and was diagnosed with autism before the age of three.

The trach, however, was a whole new ballgame and a very scary prospect.

Within a few days, however, the trach became the least of our problems.

After a four-month stay in the Neo-Natal Intensive Care Unit (NICU) involving acute respiratory failure, a staph infection in his lungs that required several weeks of IV antibiotics, and too many feeding issues to count, he came home with a feeding tube and what seemed like a ton of medical equipment.

Our living room resembled a small hospital room.

Along with the feeding pump and feeding tube supplies, we had a humidifier, a pulse oximeter, a suction machine, a nebulizer that was adapted for his trach, an IPV machine that kept mucus plugs from building in the lower lobes of his lungs, and endless boxes of trach supplies.

It was a little overwhelming.

The humidifier was extremely loud, and the pulse oximeter came loose when he wiggled and set off the alarm, which caused more mini heart attacks than I’d like to remember.

Going anywhere with him was a challenge.

Going anywhere with small children can prove difficult but going anywhere with a baby who has a trach is a major ordeal.

Aside from all the medical equipment and emergency bag that must go everywhere he goes, there had to be two adults in the car with him when we went anywhere; one to drive and one to suction as needed.

For the first year or so of his life, the only time we took him anywhere was to doctors’ appointments.

Illness has always been a nerve-racking issue. We have three older kids, all in school, who seem to bring home every virus that comes around.

In his first four years, he was hospitalized no less than five times for respiratory ailments.

We have been very lucky these last few years, but it is still very scary and stressful when he does become sick, as he can go from bad to worse in no time.

Having a child who is medically fragile can be isolating. Not only do we have to be careful when we go out, but in our case, there are very few people that we can relate to.

There aren’t that many kids with trachs locally, but I have found several kindred spirits through the internet.

These are people who deal with the same issues that we face every day, who know what I’m talking about when I ask about granulomas in the stoma or who feel my pain when I freak out because Chance has started yanking on his trach when he gets upset.

They may not know it, but they have been a port in the storm on many occasions.

The last seven years have had a profound effect on everyone in the family.

As chaotic and stressful as life can get, we are constantly reminded that we have so much to be thankful for and we have learned not to sweat the small stuff.

Chance has come a long way.

He is able to wear a cap on his trach during the day and just has a humidifier on his trach at night.

He has had two surgeries on his jaw which have improved his speech and most of all his eating- we were able to remove the feeding tube in 2013 and now he eats more than his two older brothers combined.

Having a child with a trach has been one of the hardest, most humbling journeys we have ever been on, but I would not trade one minute of it.

For more information on Global Tracheostomy Awareness Week and the Global Tracheostomy Collaborative, please visit here.

These medicines mean I cope with most things that come my way.

They do not however stop me from having my bad days like everyone else and having 2 children with disabilities these bad days can be quite frequent and so I have learnt a few ways to cope with these days.

Personal Space

This may sound like a dream, we have all seen the memes regarding parents and their personal space or alone time but it is something I insist on.

I let my husband know I am having a bath and I am locking the door and for that 45 minutes it is just me in the bathroom. It is just my thoughts.

I am not a carer for 45minutes. I don’t need to worry about doctors, about the next round of fighting my child to have her medicine.

It is just me, maybe a magazine and some candles.

45 minutes is 3% of your day. If you can’t have just 3% of your day to be you then you are never relaxing, you are never switching off and switching off is something I have found is key to my mental well-being.

Small Treats

When was the last time we treated ourselves?

I know before I actively gave myself small treats I would have said the last treat was probably before having children.

The small treats don’t need to cost anything, it could be a quick 5 minutes of popping into the garden to just smell the flowers, it could be once all the children are in bed doing your nails.

It could even mean having a nap when your child has a nap or is at school instead of doing the chores.

It may be putting a bar of chocolate into your trolley for later that night and not sharing any of it as it is your treat.

Seeking Help

Sometimes saying to your partner, family or friends that actually today isn’t going right.

That today you haven’t got the mental strength to do anything helps.

Having people you can call and feel safe about saying,

“I’m really struggling today, everything is getting on top of me” and being able to speak honestly, be able to rant and moan about life, be able to cry and to be able to just lift the emotional burden by sharing it always helps me.

My friends are brilliant, I put the kids to bed and then when the husband is home I go out for a walk with my friends and I put the world to rights.

They just hug me and that is one of the most mentally uplifting things a hug.

I always come back and feel like I can face the world again and we need this as we are fighting the world everyday for our children.

What I call down days every one goes through and it is normal.

It would be wrong to say your always fine and I feel that the more we are honest and say that actually I am not coping today is the start of being able to help yourself and your mental health.