Invisible Disability, Invisible Child?

My mother did try to warn me that having a child wasn’t all sunshine and joy, that there was a massive amount of effort and patience needed.

Having waited until our early 30’s to start a family, neither of us entered into parenthood with anything other than complete understanding of how hard things would be at times.

Ante-natal classes did nothing to prepare us for having a disabled child; and in the early days he was the only child we knew who was disabled.

I should say that Sam is not a burden, in any way.

He is fabulous, wonderful, cheeky and perfectly capable of being an utter and complete toad when he wants to be. But in all honesty, I do believe that we have it quite easy with the little chap.

For starters, he isn’t independently mobile, other than having a phenomenal ability to roll and wiggle furiously to get where he wants to go; children who have seizures and who are walking as at a very high risk of serious injury through falls due to seizures.

Sam is kept safe and protected in his wheelchair, at the perfect height and position for us to get to him and administer rescue medication or oxygen as/when required.

His understanding and ability to interact and respond to us and others is improving all the time, he can now communicate with others who don’t know him as well once we’ve explained the basics of Makaton sign language to them, and let them see what Sam does with gestures and vocalisations.

He doesn’t have the major behavioural issues that many of my friends have to battle daily, nor does he have to face repeated major surgeries to try and mitigate the effects of organs that haven’t formed correctly, or which don’t work as they should.

And because his disabilities are mostly physical and therefore blindingly obvious, I don’t think we have to fight as hard for basic equipment and support as others do, where issues are less apparent to those who make these decisions.

It’s a disgrace.

Granted, Sam’s disabilities are obvious, but the extent of his abilities are frequently overlooked. People talk over him, ignoring him.

Sam’s usual response to this is to apply one of his orthotic boots to their shins, with considerable force (I’m kinda proud of him for that)!

But spare a thought for the parents and carers fighting a system that doesn’t recognise those disabilities that aren’t so obvious.

Just because a disability isn’t easily seen, shouldn’t mean that a child becomes invisible too.

5 Facts About Epilepsy

Epilepsy is a neurological disorder in the brain involving a disruption of communication between Neurons, causing seizures to occur.

Epilepsy is only diagnosed when at least two unprovoked seizures have occurred more than 24 hours apart from each other.

My son, William, was diagnosed with epilepsy when he was just a few days old as he had seizures shortly after birth.

Although his epilepsy is now considered to be pretty controlled by the medications he takes, he still has 5-10 seizures a day.

1. Epilepsy is not as rare as you might think.

Globally, 65 million people have Epilepsy.

Epilepsy affects 1 in every 100 children

5 in 100 people in the UK will have an epileptic seizure at some point in their lives and four of those will be diagnosed with Epilepsy.

Every day in the UK, 87 people are diagnosed with epilepsy.

2. Seizures don’t always look the way you are used to seeing them on TV.

The type of seizures we are used to seeing in TV dramas are called tonic clonic seizures.  But there are about 40 different types of seizures.

William’s seizures are hardly noticeable to a stranger as they present very differently to a tonic clonic seizure.

His arm goes out to the side, his head locks in place in the opposite direction and he looks like he isn’t quite ‘with us’ for a few seconds.

3. Epilepsy and seizures can develop in any person at any age regardless of whether they have a disability or pre-existing medical condition.

It is the most common serious neurological condition in the world and can affect anyone at any time in their life, however, it is more common in young children and older people.

4. One in twenty people will have a single seizure sometime in their life.

5. There are many treatments for epilepsy including a wide range of medications, each of which carries it’s own side effects, and specialist diets which should only be attempted with input from a specialist dietician.

Some cases may also be treated with surgery.

You should call an ambulance if :

– You know it is a person’s first seizure, or

– The seizure lasts for more than five minutes, or

– One seizure appears to follow another without the person gaining consciousness in between, or

– The person is injured, or

– You believe the person needs urgent medical attention 

Special Needs Families: Surrounded

It was now time for me to meet my two new babies.

What struck me most about the theatre that day was not the smell, the table of medical tools or even the strange sensation of having hands inside your womb moving around: no the thing that struck me most was the fact I was surrounded.

From the moment of birth my children were surrounded by medical staff.

I had staff looking out for me checking my pain levels, my hormone levels and monitoring my bleeding.

There were midwifes, a paediatrician, nurses, and even students in the room all making sure both my babies were healthy and delivered safely.

From that moment on my children have always remained surrounded.

Nine years on and the story is still incredibly similar except instead of midwives and doctors my children are now surrounded by therapists, support staff, respite staff, social work, teachers, and autism specialists.

It took a team to bring my children into this world and it is taking a team to continue to help them daily.

Sometimes I struggle with being surrounded by so many others who have their own opinions and ways of doing things.

I often feel judged and pressured to do things I am not comfortable with because someone surrounding me is suggesting it. It can feel claustrophobic at times and depressing, like living in a goldfish bowl.

Thankfully though my children, especially my son, like being surrounded.

Isaac will only sit in a chair if he is covered by cuddly toys and plastic figures and books. His bed is full of books, toys and plushes and he will lie on top of them to sleep in preference to moving them.

From just 2 years old when he started nursery he has always had a lot of adults around him too.

The irony is that although he has never been in class of children more than 6 he is still surrounded with adults as he needs them to see to all of his personal care needs.

He is never happier than when he is in a lift full of people and his favourite lifts of all happen to be the glass ones where everyone can watch you.

He has grown up having his every move watched by adults. He needs adults to communicate as he cannot vocalise for himself.

He is often surrounded by technology too as he loves nothing more than to have two iPads on simultaneously on different apps.

He loves crowds and noise and busy places like church. He is happy being the centre of attention or in a pool surrounded by water.

Surrounded definitely defines his life and that of his sister too.

I still struggle with always being surrounded at times. I am grateful for the support but it can be overwhelming having so many people involved too.

I do always console myself with this thought though: from the moment my children were born they have touched so many lives.

Adults may surround my children with support but my children in turn surround them in beauty and love.

I can never have too much of being surrounded by that.

The Pressure to Be a, “Better Person” – Anxiety and Me

It is probably fitting that I have chosen to write this a little after the actual designated day as for some, mental health day is every day.

When you’re facing the perpetual challenges that a diagnosis such as anxiety or depression can pose on you it is hard not to be aware.

On the other hand, I noticed also that it is an apt time for everyone who doesn’t understand mental health issues to emerge from under their rocks of ignorance and spout out daft phrases such as “these people just need to pull themselves together”, “depression is a made up thing”, “they’re just saying it for attention” and so on. It infuriates me.

I can fully understand why people who haven’t been unlucky enough to experience mental health issues may not understand, but this is why we must talk about it.

Before Amy’s incredibly traumatic entry into the world I thought that PTSD (post-traumatic stress disorder) was something only people who had been to war experienced.

I now know the sheer terror a panic attack, a flash back, nightmares and insomnia can invoke.

For me my role as a carer to Amy and also my PTSD contribute to my anxiety and depression. I wish that wasn’t true but it is.

It is nothing to do with Amy, she is my world and I love her. But being a carer is a lonely world at times. I sometimes feel like I can’t relate to the “real” world anymore.

I will walk around a shop trying not to look at the children’s scooters for sale (not something we see Amy being able to do), I will look past the children’s sweets (Amy is tube fed) and I will leave.

Sometimes feeling lonely makes me feel guilty because I know how incredibly lucky we are to have her here with us.

I do wish I could have more normality sometimes and that our lives weren’t dictated by Amy’s mood and appointments that day, there is a lot I crave but then feel guilty for wanting.

The need for respite upsets me at times too. I don’t want Amy to feel like a burden. Ever. But having anxiety means I know exactly how it feels to feel like you are a burden.

Every interaction leaves me with an internal monologue “am I talking too much? I bet they’re sick of me. I’m wasting everyone’s time. I’m such terrible company, I wish I could just be alone”.

I can wish to be around others whilst simultaneously hungering for some time alone to be introspective and just breathe.

I can be absolutely fatigued but desperate to be full of energy and be the care free person I used to be. You don’t want to harp on about your many life challenges, you want to be upbeat and optimistic, but this sometimes feels like an act.

On a bad day the palpitations can be debilitating, the feeling of a tight chest and a lack of control.

The inner monologue again strikes up at the most unhelpful time “why are you so pathetic? What are you even stressed about? There are people out there in genuinely harder times than you, you need to get a grip”.

It sends you on a downward spiral where the more stressed and upset you become the more you berate yourself.

You can feel unworthy of the love and support that surrounds you and force you to isolate yourself.

It can also make you very easily irritable… any outburst I make at a loved one has me feeling like an irrational fool, unworthy of love.

You can soak up those feelings and fill that void with carbs and sugar and your brain will temporarily release those happy chemicals you so desire.

Until again the guilt sets in. “You’re so overweight. How have you managed to gain 4 stone in 5 years? You’re disgusting”.

On a happy day it’s almost as if those issues never existed and don’t happen. I can even forget to take my medication. A trip out is a breeze, the world seems a happy and smiley place.

Every interaction is a joy and you want to spread that as much as you can. But the next day could be an entirely different story.

The next day… everywhere you go the lighting affects your head and your mood. The busyness and bustling crowds make your heart rate increase and your face start to flush.

Your chest tightens and your breathing starts to feel laboured. You can’t make eye contact, you keep looking down at the floor.

“You can do this,” you keep reminding yourself, whilst at the same time subconsciously hating yourself for struggling to do what everyone else seems to be doing without even a second thought.

Eventually you rush to your car.

You make a dash.

You get in.

Sit down.

Breathe.

A sigh of relief… you’re alone again.

Sweet, sublime, sacred, solitude.

Or is it loneliness?

Why am I afflicted with this constant hypocrisy about how I feel?

There are days where I feel I can’t leave the house, and days where I have to.

There seems to not be a comfortable in between.

Sometimes as a carer you spend so much time worrying for the person you care for that you can overlook your own needs.

Or you know you have these needs but haven’t the time or energy to address them.

Anything you do for yourself can feel selfish and over indulgent.

This of course further fuels the anxiety as you don’t feel worthy and you feel unimportant.

One of the main things we want as humans is to feel important and like we have value. When your job role pays approximately 37p an hour with no thanks, no holidays, and no sick cover and so on it is quite easy to feel a little worthless.

You worry how people see you – do they think I am a “lazy benefits sponger” or do they see a neurotic fumbling overweight wreck going about life the best she can?

I then wonder why I care what they think – sometimes I don’t.

Brain fog is another symptom of my PTSD. Sometimes I can carry out a whole series of tasks with no recollection of how long it took or what specifically was involved.

I can have a whole conversation and feel that I wasn’t part of it. Dissociation is common and a bit disturbing when you realise it has happened.

It’s a bit like you’re operating on auto pilot, ploughing through tasks like a factory robot until you can finally switch off.

Burn out is common – I am often unable to stop being productive until night time when insomnia can kick in.

Sometimes after a conversation I realise the person has noticed I didn’t completely connect with them and I feel terrible. I don’t do this on purpose.

I am trying my best.

I am easily startled by the smallest thing, it would seem that my fight or flight response is in constant operation.

People laugh as I almost fall off my chair when someone knocks on the door, or I press the phantom foot peddle in the passenger seat of the car.

It’s one of the most exhausting aspects of mental illness.

Whilst I am sure you can see that anxiety has ruled my life in many aspects, it has also enabled me to become a more conscientious, considerate and empathetic person.

It makes me good at planning and very thorough on fine details. My overthinking can sometimes be a positive and sometimes if you think of the worst case scenario you will either have your expectations met or you will be pleasantly surprised.

Sometimes that fight or flight response can force me to get things done as motivation can sometimes be a big issue when you are burned out.

My need to prove my worth and be productive makes me a good house keeper, secretary, nurse, and most importantly mum… even if sometimes I feel like a terrible mum.

If you have ever had any of these feelings, or indeed worse, it is so important you seek help.

See your GP, enquire about medication, find out what support groups are in your area, look into what therapy/counselling may be beneficial to you.

There are provisions out there for anyone going through a hard time and you should never suffer alone.

For me, writing about it helps and I thank you for reading this piece which I suppose is one of my most personal yet.

I hope the insight into my frantic little mind resonated with you and I wish you great mental health.

5 Things I Didn’t Realise Before I had a Disabled Child

1. Disabled toilets are really rubbish!

I’m not going to lie, before my son was born I was rather naive about disability.

I must have walked around with my eyes closed because if you’d asked me to describe a disabled person I’d have imagined an old person with a walking stick.

Maybe that is simply because severely disabled people weren’t seen in the community as much when I was growing up as they are now?

But because I had that image in my mind, I presumed that disabled toilets were suitable for all disabled people.

How wrong was I!

Now I have a severely disabled child in my life, I realise just how impractical most disabled toilets are.

Whoever designed them was probably catering for the same person I saw with a walking stick because if they’d met anyone like my son they’d have realised that a little extra space and some grab rails doesn’t mean it’s usable!

These days I know how important changing places style toilets are for disabled people and am saddened that there aren’t more of them in places that offer toilets to everyone else.

Supermarkets, cinemas, shopping centres, department stores, train stations etc all offer toilets to everyone apart from severely disabled people.

2. Carers allowance sucks

I mean I know I should probably be grateful that we get carers allowance at all but the current rate of £62.10 is pretty insulting really.

For that £62.10 carers of disabled people are expected to look after them for at least 35 hours a week – which works out to a pitiful £1.77 an hour!

Now, I obviously I don’t expect to be paid to look after my own child but what if you are caring for your mother in law or someone else you wouldn’t usually be expected to care for?

Is it really acceptable that carers are only given £1.77 an hour for 35 hours of care? And don’t forget that most carers do far more than 35 hours a week, but get paid no more.

Of course, you can go and get a job as well as caring, if the person you are looking after has someone else who can look after them while you’re off earning.

BUT… you are only allowed to earn £116 a week or you won’t be entitled to carers allowance at all!

I’m not sure that many people would choose to be a full time carer and have a second job but still only take home £178.10 a week would they?  Especially when I point out that is way below minimum wage!

This was one of the biggest shocks to me when I first learnt about carers allowance.  I honestly, naively, thought that carers would be given an allowance which reflected the level of care they provide to people.

Especially considering how much it would cost if they were no longer able to provide care and the person had to go into residential care.

Why aren’t the government doing more to look after unpaid carers?

3. There isn’t enough disabled parking

Before I had William, I will fully admit, I was one of those people that used to get really annoyed at the number of disabled bays there are in car parks and on the street.

It seemed like they were everywhere.  And it also looked like there were far more disabled bays than disabled drivers.  Again, wrong!

These days I have no choice but to park in a disabled bay in a car park because I cannot get William out of the van otherwise and if I am parking on the street I tend to park on double yellow lines because all those spaces I used to see seem to have vanished!

They are still there of course, it’s just that there really weren’t that many at all and there is a huge demand for them, a demand I was blind to.

4. Language Matters

I’ve never really put all that much thought into language if I’m honest, never really been that bothered about the origins of words, especially insults. Until William was born.

Now I understand how damaging language can be when used in the wrong way and terminology which was once used to define medical conditions is hurtful to many when used as an insult.

I cringe when I hear someone use the R word and have fallen out with friends who have refused to stop using certain words, that led me to writing this article recently.

Nowadays I am far more aware of how much language matters and how important it is that people consider how they use it.

5. Having a disabled child isn’t the worst thing in the world

Honestly if you’d have told me I would have a disabled child I would have been terrified and probably wouldn’t have had a child at all. That would have been such a mistake.

Having William has changed my world.  He is the happiest child you’ll ever meet, his smile is amazing. His determination and positivity is inspirational and he changes the lives of everyone he meets.

Being his mum has changed my life so much and I have amazing people in my life now who I never would have crossed paths with had he not been disabled.

I think other people still think that having a disabled child must be the worst thing in the world as they still insist on telling me I am an inspiration, they couldn’t do it, and they don’t know how I do it.

But I’m sure they only say those things because they don’t know.

They don’t know that having a disabled child is just like having a non-disabled child, you love then the same as you would have if they weren’t disabled. You’re just their mum!

Special Needs Parents: Does he ever laugh?

When he’s feeling well/had a good day for seizures/isn’t exhausted/isn’t overwhelmed.

And as I said it, my mind shot back in time to days when my boy would laugh and laugh and laugh at Mummy and Daddy being silly, or the fabulous moment (at around 3 am one morning when he was around 18 months old) when he discovered that farting was really, really funny.

Of all the things my boy has lost to the relentless seizures, his laugh and smile are the two that break me the most.

He DOES laugh and smile, recently as his VNS settings have been tweaked and the seizures are less frequent/severe he’s been smiling so much more and it makes my very soul sing to see it.

But my God, how much do I miss that mischievous giggle. I would happily cut off my own limbs if it would help my little boy to regain the skills that were so brutally ripped away from him.

I don’t think people actually realise how cruel epilepsy really is. He’s just a little boy, and he has already gone through so much.

Most days I am simply thankful that my little boy is alive, healthy (it’s all relative on this one) and still here with us, making our lives as full as they are.

But on occasion when something makes me stop and think for a moment it can get quite overwhelming.

Apologies to Ikea but I’m borrowing their phrase – not enough people take time to revel in the wonderful everyday; the smiles and giggles, hearing the children talking about their day at school, their friends… mostly taken as background noise, inevitable when you have children. And so much taken for granted.

My boys smile, when it does happen, lights up a room more brightly than the sun itself… and at that point the everyday truly is wonderful.

The improvements we’ve seen with the VNS has given us greater hope that those rare or lost skills can start to return and that we’ll hear our little boys gorgeous little laugh again some time soon.

If At First You Don’t Succeed – Our Own Personal Battles with the Authorities

We have just been victorious in our third giant battle against the powers-that-be, and I wanted to share our experience so that it might help empower others that might need some help or encouragement when battling with their own challenges.

Stepping back in time, our first battle was when Jenson, aged two, required psychological interventions to treat his severe oral aversion.

We challenged our local health authority to provide funding for a service that was outside of the usual NHS remit.

We encountered months of contesting and campaigning, and endured a thoroughly miserable time, during which Jenson’s intake had reduced to a dangerously low volume of his prescribed high-calorie milk, and he was refusing all solids.

Dancing dangerously with dehydration, and a week before the surgery date for insertion of a feeding tube, we were victorious in securing the service we required, which made a life-changing difference to our whole family, and to Jenson’s future.

Our second triumph was securing a place at Jenson’s specialist school at the age of three.

After looking closely at all three special needs schools in our area, we were absolutely resolute that one of these was the best school for him, and the only school that could fully meet his needs.

The school is run by a charity and provides everything under one roof, including orthotics, physiotherapy, speech and language, paediatric consultancy, horse-riding and hydrotherapy.

The local authority, however, wanted to send him to their choice of school, which being a local authority school, was ‘lessening the burden on the public purse’.

After a lengthy battle, we were successful at securing a place for Jenson at our number one choice, where he has just entered his second year, and is thriving.

This brings me onto our latest battle, which we have just conquered.  We have finally secured transport for Jenson to and from school.

We were denied transport initially, on the basis that we were offered a place at this school on the agreement that we provide the transport ourselves.

I originally bit the local authority’s hand off with delight at having won a place at the school for Jenson, but one year later, and being back at work after a second baby, I was really feeling the pressure!

Two hours per day of driving backwards and forwards was really encroaching on my professional work and my ability to care for my children.

I decided to investigate the legalities of the situation and thereby I established that we are legally entitled to transport.

As I delved deeper into the laws and codes of practice and the specifics of the situation were unravelling, it was evident that we were weaved into an ever-increasing web of loop-holes and ambiguities.

Still, I battled through and 12 months on was successful.

It is fair to say that I have spent a ridiculous amount of time on my computer while battling through these ordeals: Google, Facebook support groups, contacting people that I knew, hassling people that I did not know!

I pestered the authorities – NHS and Council, gently at first; I ascertained who my allies were and scoped out my adversaries.

I wrote letters of complaint, I submitted appeals; I even put in Freedom of Information requests, just to raise my profile as the ‘bothersome mother’.

I trawled through government statutory framework documents, local authority policies, and codes of practice.

I quoted The Education Act 1996, and even referenced a High Court precedent regarding qualification of the term ‘public expenditure’ in regard to the overlap of education with healthcare costs.

I sent emails with ‘high importance’ flags, and I sent carbon-copies to line managers and as high as the Director of Children’s Services and NHS Chief Executives.

I spent hours on the telephone to SEN agencies, children’s disability charities and legal advisors, appealing for advice and expertise knowledge.

I calculated and submitted NHS reference costs to demonstrate the benefit to the public purse of our choice of approach.

(For example, in 2015/16 it cost a national average of £2,313 for endoscopic insertion of gastrostomy tube in a child and £212 for every gastroenterologist consultant-led appointment.  It also costs £20 per day for the prescribed specialist feed.  The alternative one–off cost to provide psychological treatment was unsurprisingly a significantly cheaper option, but to impress this point upon the powers-that-be was an unwieldy task!).

I wholeheartedly believe in our NHS and our social care system, and am proud that our country has these services at the heart of our society.

If this was a politically-motivated blog then I would have an awful lot more to say about the way that our current government chooses to use national resources and prioritise it’s spending and austerity plans, but I will save that rant for another day!

It is certainly true, however, that the systems embedded in our society are not always easy to navigate and without tenacity, resourcefulness and a huge dose of bloody-mindedness, it is easy to sit back and accept less than you are entitled to.

I could go on and on about the battles that we came through to get the very best and most appropriate treatment, care and education for our son.

I’m sure there will be more battles to come, in the future.  But for now I am content that we have done the very best for him so far in his short life.

Tesco orders additional 350 GoTo Shop Trolleys

Tesco have just ordered another 350 GoTo Shop trolleys!

Things like this do not happen on their own, they need to be campaigned for.

This campaign is promoted and shared every day by you, every single one of you that want to take your little ones to the shops and be able to take more than a basket’s worth home.

There are now 1,350 GoTo Shop trolleys in Tesco stores across the United Kingdom.

While we haven’t received a list of the new stores just yet – we hope to share this with you in the coming weeks.

To find out if your local Tesco has a GoTo Shop trolley, visit the Firefly Finder and search your post code.

This now takes us to a grand total of 3,080 GoTo Shop trolleys throughout the UK and Ireland. But the campaigning doesn’t stop there – our mission is see a GoTo Shop trolley in every retail store around the world.

If you want to support the GoTo Shop campaign, download this leaflet and hand it in to your local store.

Don’t forget to share your GoTo Shop photos with us on our Facebook Page!

Happy shopping!