Seeking the Truth About ‘Hidden’ Disabilities

Hidden:  adjective kept out of sight; concealed.  verb past of ‘hide’

We frequently encounter the term ‘hidden disabilities’; it is in widespread use across the media, throughout society, within many of the various disability communities.

In general, most people have a view on what they think it means; they will refer to it as relating to disabilities that are deemed by society to be less ‘obvious’.

Often included in the list that is offered by way of explanation will be Autism, Attention Deficit Hyperactivity Disorder (ADHD), Dyslexia, or maybe some mental health conditions.

It seems to suit society to compartmentalise a whole range of disabilities, disorders, conditions or illnesses into two broad groups; those that are more obvious ‘visible’ disabilities (especially if there is the big clue of a wheelchair, a guide dog, or hearing aids) and the trickier to spot ‘hidden’ ones where there is no perceived visible clue.

I wonder, however, whether this is just lazy thinking developed to excuse people from taking the trouble to look a little harder or ask the right questions…

‘Hidden’ or ‘Overlooked’?

A so called ‘hidden’ disability isn’t hidden to the person who has it.  It will influence their life and perhaps the lives of their family and friends in a wide variety of ways.

In some cases, it will mean that the person concerned can and does, perhaps with some adaptions and strategies, live a relatively ‘normal’ life (not that there is a clear definition of what ‘normal’ is!)

In other cases, the persons disability or condition will mean that they face many daily struggles and perhaps need a high level of care support to get through each day.

Society neatly places people either in the ‘visible’ box, with lots of support available, lots of TV advertising to encourage us to give towards guide dog appeals, or to help children who use a wheelchair (and, by-the-way, there is nothing wrong with any of that), or in the ‘hidden’ box, where there is much less support, children are misunderstood to be ‘badly behaved’ if they are struggling to cope and have a meltdown, and society can ignore and overlook them and move on.

Dark overtones of the past

This societal approach of referring to ‘hidden’ disabilities, overlooking and ignoring the needs of many people with disabilities, conditions or illnesses as a result, has dark overtones of the past.

It’s not that long ago that children with so called ‘hidden’ disabilities were ‘hidden’ away in institutions, facing unimaginable horrors and often not surviving into adulthood.

Parents were told to forget about them and to ‘try again’.

These institutions still exist in many parts of the world and are a disgraceful stain on our global society.

That they are in any way making a comeback in the UK under the guise of ‘secure mental health units’ is grievous, not least because many of the children, young people and adults in them are misdiagnosed.

Older generations in this country grew up at a time when these institutions were commonplace in the UK, and consequently didn’t see many children with disabilities, often didn’t gain the knowledge and understanding about disability that later generations gained by being at school with a diverse range of children.

The term ‘hidden’ disabilities might suit many as a convenient way of explaining their ignorance, but is it a term that is toxic because of the past?

‘Disabilities’? ‘Differences’? or ‘Diversity’?

Many who have what society might term a ‘hidden disability’ would strongly argue that theirs is not a disability at all.

Some autistic communities, for example, will often refer to ‘difference’ or ‘diversity’ rather than ‘disability’.

We’ve seen a change in the terms used by professionals regarding Autism too, from Autism Spectrum Disorder, to Autism Spectrum Condition, to increasingly the use of the descriptive term Neuro-Diversity.

Whatever term people choose to use for their difference, as a society we all have a responsibility to understand, adapt to, and more than anything celebrate the widely diverse human family that we are all a part of.  Why would we refer to anyone as ‘hidden’?

‘Hide’ or ‘Seek’?

It’s true, of course, that because that understanding, adaption and celebration isn’t commonplace in society, to put it mildly, many people with differences and diversities themselves ‘hide’ them.

It’s not that long ago that most people understood that being autistic, for example, was an almost entirely male difference.

We now know better, knowing that females are just as likely to be autistic but are generally more accomplished at ‘hiding’ their differences by copying their peers, for example.

By why should they feel that they have to?

Yes, of course most children and young people want to ‘fit in’, to be like their peers, but is this because we as a society have set such a high stock in being ‘normal’ (whatever that is!)

From birth there are targets to attain, standards to meet, markers to reach… it’s relentless.

Is it time for us to instead of chasing these ‘normal’ checkpoints, to seek and celebrate the differences and diversity in our children; to encourage each other to wonder at the amazing human species that we are a part of in all of its variety?

Let’s not keep ‘hidden’ any more, let’s be visible, conspicuous, and celebrated!

Working Carer – Can it be Done?

In the summer I was offered some paid work alongside my voluntary work. I initially said no.

Life was too unpredictable to hold down a job.

I was struggling with everyday life as it was, due to exhaustion, sleepless nights and the demands of the complex medical world, It just didn’t make sense.

However I had wanted to go back to work at some point, to regain independence and also contribute to the family finances.

With the idea that this was just a trial, I changed my mind and decided to give it a go.

My confidence and general faith in myself was visibly low, but the people around me gave me a push and sent some positivity my way to get me started.

I remember feeling so lost, as I tried to remember how to put my working head on.

Separating my home life with work life was pretty much impossible. For a start, Zachariah was, and still is, very demanding, and needs to remain priority.

But also, because my work linked directly to Zachariah, as we are an organisation who advocate for families like mine.

The beauty of this, was I had some understanding coming into it, I had our story, and our experiences.

What I did not have, was admin experience. That would have to be a new journey to dive into it.

With a little helping hand from the technology wizard, aka, my Husband, I managed to do the basics of the job, and my skills are developing nicely.

I’d love to tell you that it’s all going well, but reality is, I’m a crap employee!

I cancel!

I’m late!

I’m scatty!

I miss things!

I get called away in emergencies!

It was only Monday last week (28th Jan) that I had to grab my things and run to my car and head to school to an epilepsy emergency.

In that moment all I can think about is what state Zachariah is going to be in once I arrive.

Will he still be with us? Sounds dramatic to those who do not experience seizures, but when you live alongside such a nasty thief, you really do get to know your enemy.

The job is literally the last thing on my mind, which is what makes me an awful employee, but instead a caring mother.

My son comes first and always will.

This emergency led to a day off on the Tuesday as he couldn’t go into school. The guilt of leaving my boss to do our busiest day of the week was huge, I felt awful.

This then created an anxiety attack this morning (Monday 4th Feb).

Whilst driving Zachariah to school, I felt this huge knot build up in my throat, I began to shake, and my breathing got heavy!

Trying to hold it together as I needed to get us there safely I focused on everything but the huge attack I was experiencing.

I didn’t understand why!

Panic attacks usually are a result of worry, stress or anxiety. I felt OK?

As I arrived at school I saw Zachariah’s VI teacher, we chatted, and it all started to unravel.. I was anxious about leaving Zachariah at school.

I was worried about his quality of life.

I wondered whether work was worth it, should I not just keep my boy at home? Mondays are always the bad news day, the day I receive the phone call, so why bother sending him in?

My day didn’t improve… The more people asked if I was OK, the more I felt not OK!

This affected my work. I told my boss how I really felt about working, I feel unworthy of the role.

I’m unreliable.

Reality is, juggling work with my already chaotic life is extremely overwhelming and quite frankly making me dizzy.

I love the idea of working, earning my own pennies, I enjoy what I do, and have absolute desire to do the job and have the passion to go with it.

I put my all into it (well, I’m not sure this is true, as half of me is asleep most of the time).

Needless to say, I have managed to plod on and stay in the job.

How? Because I am surrounded by people who get it, my boss is full of compassion and knows the demands of my life, as she also experiences similar challenges within her own family.

Patience and time is the biggest gifts within our group. We have to be gracious with one another.

This is not something I believe is common. As I know for a fact, if I worked elsewhere I would have lost my job by now.

So why is it, that it is so difficult for Parent/Carers of children with disabilities to find  jobs? The answer is, there is too much pressure and not enough flexibility.

Now, I know this is not the case everywhere, as I know a few parent/carers who do manage to work, and do so very well, and are given grace.

However there are more families who are financially struggling and parent/carers are becoming mentally unwell as there is just not enough on offer in the world of jobs.

I also understand that some families just cannot juggle it.

I’m getting to that point! I always said that the minute Zachariah suffers from me working, I’ll stop. And right now I’m sitting on a very wobbly fence, as I am not 100% available.

I’m rushing to appointments unprepared, I’m leaving medication orders late, and almost running out!

I’m grumpy and tired a lot of the time, therefore Zachariah must feel this.

I feel too stretched. I feel it’s now time to reevaluate my life and structure it better to suit our family.

As money isn’t everything!

Now, this doesn’t mean I’ll quit, it means I’ll look at my hours, my voluntary work and my other commitments. See what I can do to help me stay in work.

And if it comes to the point where work is causing too much chaos, I can look at leaving.

What I would also like to add to this is; I have found myself getting quite jealous of my husband. He goes to work and pretty much gets left to focus on that.

It’s only been extreme measures that he has had to leave work. Like the time Zachariah needed surgery, and the time he ended up in resus!

Whereas for me, I have to be available 24/7 for Zachariah. It’s me that has to leave work, it’s me that has to cancel hours due to appointments, and leave early to arrange meds.

I know this is the way it needs to be, Tim is the main earner, but sometimes it gets to me that I have nothing else that is just mine, something that I can put 100% into.

Things are harder to digest when you know you can’t change them.

This is the way it needs to be right now.

Much love,

Rochelle,

My Daily Miracle xx

Mum Guilt

Today I’m feeling incredibly guilty for enjoying my time with just the girls while Ethan is at his dad’s.

We have loved every minute of being able to jam pack our days without having to do anything medical.

We’ve been spontaneous and decided to go for a walk to the supermarket and a trip to the park.

It was lovely to not have to rush back for certain times. Being able to really enjoy playing was just lovely.

Just deciding we were going then a quick get ready was great rather than prepping and getting everything ready.

Then again today a lazy morning not having to stick to routines and a trip to town and a lovely walk using the girls bikes.

It has been so easy and nothing has been planned.

It’s something I’ve needed for a long time but has left me with complete mum guilt it’s unreal!

I feel guilty for enjoying this time because I miss Ethan so much.

I often feel guilty when Eths is here that he can’t play on his own like Dakota can and even now that Florrie can too.

I feel like I’m constantly only doing the necessary things for Ethan rather than the fun things.

He has such a strict routine that needs to be adhered to and going out needs to be planned around those things.

I have totally appreciated just how easy having two healthy and happy girls have been this weekend.

I feel jealous of those that don’t have to think about all we do.

I want to be spontaneous and not have to plan every inch of our lives but that’s just not possible.

I’ve struggled for a while with feeling like things are getting harder and I feel guilty for every thought I have and every action I take.

I just can’t seem to find a peace with everything at the moment.

This year I am making a conscious effort to spend more time with my family making memories.

2018 taught me that our time together is precious and although it’s hard and we don’t get much time together, when we do we have to make the most of it all.

A Button – The Best Decision We Made

I wanted to share about our experience of tube feeding with our son who has spinal muscular atrophy.

This condition is a muscle wasting condition and so Zac doesn’t have the energy to be able to get through a full meal three times a day and the amount of food he is able to eat is not enough to sustain growth or health.

Just before we received a diagnosis meal times were becoming tricky with Zac – he was tiring really quickly and was only able to eat small amounts of soft foods.

I was constantly battling with him and trying to force feed him. It wasn’t pleasant for any of us.

At diagnosis 2 years ago Zac’s weight was plummeting and he was becoming weak very quickly.

We knew we couldn’t go on as we were and we needed to find some solutions to feeding.

We tried a nasal gastric feeding tube for short term feeding but Zac did not tolerate this very well and we were back to the clinic for more discussions.

It was decided that although Zac was very weak having surgery to have a tummy button was the best option.

The surgery would be a big risk for Zac as with his muscle condition anaesthetic needs to be considered very carefully.

However, we found a surgeon who we felt really confident in and it was decided that for Zac to have a good quality of life and to help him maintain the best health he could this surgery had to be performed.

I went through a whole range of emotions – I was upset that my son wasn’t going to be eating a normal diet like the rest of the family, I was worried that not eating would isolate him socially, I was anxious about learning how to carry out feeding and care for his gastrostomy.

But I knew that this decision had to be made, I knew that by doing this I was giving Zac the best chance of a happy life.

I felt relieved that I’d no longer have to calorie count and force feed.

The days leading up to the surgery were difficult – in order to keep Zac as strong as possible he needed to have high calorie energy feeds and I had to physically syringe these into his mouth every hour or so.

We couldn’t go out for family days because Zac needed to be fed every few hours and this was too stressful to do while out and about.

I was exhausted with it all and the pressure I felt was immense.

My days were spent calorie counting, battling and force feeding in order to keep my son alive.

The surgery day came and almost instantly I felt the pressure leave me. I saw my little boy with his button and actually it’s really small and discreet.

The care for his button was really easy to learn and actually doesn’t add that much extra work to his daily routine.

We learned how to use a feeding pump and after a few days we were allowed home.

That was the best decision we made for Zac – it’s been 2 years and Zac has kept in the best health, he’s putting on weight and thriving.

The pressure is off – I don’t need to count calories because I know Zac is receiving all the nutrition he needs through his button.

He can be fed anytime, anywhere and very discreetly. We can go for family days out and Zac can be fed through his button without any stress.

Zac can still sit at the table with us and join in if he wants but there’s no more battling or force feeding.

The energy he has can be used for fun things and he can enjoy life without his body having to work hard to get the energy he needs.

For anyone struggling with this decision or for anyone who may face these discussions in the future I can honestly say it’s the best decision we made for Zac and it’s something that has allowed Zac to be able to enjoy his life to the full.

A Bucket List of Memories to Make

A couple of years ago I created a bucket list for Ethan. He was 6 at the time.

Ethan was born with a rare genetic disorder called ARX.

We have never been given a life span for Ethan, for which I’m very glad about, but we know that his life will be limited.

Having to prepare yourself that your child may never make adulthood is pretty hard and harrowing to say the least.

Ethan is at high risk of SUDEP due to his complex and hard to control seizures.

We have been told that keeping Ethan well is of high importance.

He has a good diet and we try to limit the number of bugs he is around.

We are lucky he eats an oral diet but also has a PEG to help if needed to build up his calories.

We have had to write advanced care plans in case the unimaginable happens.

As part of this we included Ethan’s bucket list.

Most people write a bucket list when they are turning a big milestone. A list of things they want to complete before a certain time.

So, this is what Ethan now has. A list of things I want him to experience.

Things that are exciting, things that are relaxing and things that show him the world around him.

We haven’t got hugely far with it all but we have started it.

First up was to sit in a police car with the sirens on. Ethan loved this!

He also got to sit on the bonnet of the police car and have his picture taken with the policeman!

Second up covered a couple on Ethan’s make a wish trip to London.

We visited winter wonderland to find Santa, a show in the west end and a ride on the London Eye.

An incredible weekend full of lovely memories.

Ethan also walked a dog! Our friends’ dog “Stevie” was a willing participant and Ethan walked him along the Seafront.

Ethan is often poorly and so fitting things in and around this is challenging.

This year I will endeavour to make so many memories with him and ensure whatever time I have with him is fun and happy just like it should be.

 

My Confessions as a Special Needs Parent

Some days will be harder than anything you have ever experienced or imagined.

You are pushed to your absolute limit and then further still.

There is no let up, no time away, no opportunity to reflect.

You are in the midst of it all 24/7.

As a mother I feel huge guilt. Violet doesn’t experience life as Henry does.

Violet watches her brother sit, walk, run, talk and go about his life as most children do.

I watch Violet watching her brother with a broken heart and a desperate desire to somehow make it right.

They say that comparison is the thief of joy.

Yes it is. I feel I have a constant comparison slapping me round the face.

Stomping on my heart and then tearing it into pieces.

Days can feel as though they stretch out for all eternity, whether you are at home or in the Hospital.

Dystonia means that Violet is never still for more than a few seconds.

She has involuntary movements throughout her body constantly.

This is exhausting and so frustrating for her.

It has a direct effect on everything she does or wants to do.

When experiencing extremes in emotions or when Violet is unwell, her Dystonia becomes all consuming.

Her full body extensions are incredibly powerful.

It makes holding Violet a dangerous job, you will be hit repeatedly with thrashing arms and legs and head butted.

Violet needs comfort when experiencing these awful episodes and I worry how I will cope as she grows and these inevitably get worse.

Some days will be easier, you will embrace every positive experience and store the memory away to retrieve when you will so desperately need it.

Life can seem almost normal for brief moments and I savour those times of calm.

I feel pure joy watching their twin bond develop as they grow.

Their glances and beaming smiles that light up the room. Knowing that they miss each others presence and crave to be near each other.

The moments of beautiful interaction and play.

The absolute love they have for one another drowns our that sorrow I feel and replaces it with a warmth that feels like it envelopes my entire soul.

When is the Common Cold, Not Just a Common Cold?

Sometimes it’s hard to explain just how dangerous an illness can be for children like Sam.

My niece and nephew may be snotty/grotty with a cold for a couple of days, then will be back to normal.

But for a child like Sam, a cold can mean a week in HDU on oxygen and inhalers, with seizures completely out of control.

And that’s before the risk of secondary infection.

As a wheelchair user, Sam is at high risk of chest infection; he isn’t able to shift mucus from his chest.

Aspiration leads to irritation/inflammation in his airways.

Low muscle tone means he’s often sick if he coughs too much so he will fight NOT to cough.

It’s a vicious cycle, the rubbish builds up, he can’t shift it and before you can say ‘hello nurse’, we have a chest infection.

This week, things have been brutal. Teeth moving in his jaw means increased saliva; low tone means he aspirates easily; and he’s midway through a drug wean.

I currently exist in a world of drool, chest physio and begging him to Please. Just. Cough.

24 hours ago, Sam became very unsettled.

He was whimpering, his temperature shot up to 41C and the seizures went crazy – serious enough to call an ambulance, he suffered two prolonged (status epilepticus) seizures.

Despite medical intervention, the first lasted 2.5hrs, the second only an hour (only??).

Blood and virology tests showed no serious pathogens.

So what had made my son so dangerously ill so quickly?

A standard respiratory virus. In other words – a cold.

Now safely home, I’m hoping that physio, suction, paracetamol and a touch of luck will keep this boy out of hospital.

Status seizures never fail to shake us, nothing makes you feel more helpless and afraid than watching your child seizure out of control, the medication you rely on to break that cycle having no effect.

He’s exhausted, snotty and miserable, but safe.

Sleep is a great healer; I will be staying precisely where I am for now as my boy snores softly in my lap while I type.

Please, someone, send coffee.

The Future is Something Many Parents Worry About

The future is something many parents worry about; regardless of your child’s abilities, we all worry about the future.

The future is something most parents almost dream about; we are always thinking or wondering or planning what life will be like when our children are X years old or when they are finally out of diapers or in college…

The future worries for families like mine can be very different from the usual future worries.

For us,the future must be planned over and over; we must investigate what happens when our children grow up – And that I can assure you is heartbreakingly hard.

We must ensure to the best of our ability that nothing is left to chance.

Left To Chance –

It’s something that has to be planned;it cannot be left to chance.

There’s a rush to teach them the value of money;it cannot be left to chance.

There’s a need to ensure no one takes advantage; it cannot be left to chance.

There’s an aching worry that never goes away;will he be treated well,if I were to be suddenly taken away;it cannot be left to chance.

There are plans that must be made, centers investigated for “just in case”; it cannot be left to chance.

There’s a whole other side to growing up which can fill a parent with dread yet; it cannot be left to chance.

One must imagine what could or will happen the day they become too unwell; it cannot be left to chance.

There are no college forms or worries over college fees,instead there’s a nest egg that must be saved; it cannot be left to chance.

There are decision which must be made long before they are of age; it cannot be left to chance.

There’s trust placed into agencies throughout the years,while always watching to see if they truly care; it cannot be left to chance.

There are lists of who to call and who not to bother; it cannot be left to chance.

There are unanswered questions of who will care, no matter how prepared you are; it cannot be left to chance.

Will he be ok without me?; it cannot be left to chance.

I imagine those are only some of the fears parents of children with special needs or different abilities may feel

I too, am familiar with these fears.

They are the kind of fears that sneak up on you in the dead of the night. They are the fears that force you to draw up a ‘Will’ or make a ‘plan’ for all those ‘just-in-cases’ that fly through your mind,almost on a daily basis.

My fears of the future are a little different as my son has Hunter Syndrome but nonetheless my fears of the future keep me awake too and the cycle of ‘what if’s’ can be just as relentless.

We need to start helping parents like us, help us plan a future where we know our grown up children will be understood, cared for and loved even after we pass on.

No parent should ever have to fear their child growing up.

Governments need to understand that kiddies with additional needs do grow up and with the right supports in place while they are growing up, they can lead a very full and happy life without their parents (when that time cones).

Parents spend years worrying over who will care for my child when I pass on?

This cannot be left to chance.

And, this cannot be left to the parents to carry, alone.

It’s time to start putting some funds,attention and research into adulthood services and support into aging parents fears of the future.

Again, no parent should have to fear their child growing up, but a lot of parents do.