Epilepsy doesn’t care that that you just need to sleep.

Epilepsy doesn’t care that it makes us all weep!

As we get closer to Purple day I thought I would share my experiences of the nasty neurological condition, Epilepsy.

It’s true when they say keep your friends close but your enemies closer, or as Sun Tzu said ‘Know your enemy and know yourself and you can fight a hundred battles without disaster’, as I frantically try to get to know everything I can about Epilepsy to try and keep myself one step ahead of the vicious condition.

When Zachariah was just a few days old he started with jerky limb movements, to be honest I didn’t really think anything of it, I just thought he was a jumpy baby.

It was the midwife who spotted it and raised a concern suggesting that I brought it up with a doctor. Following this we had MRI’s, EEG’S and he was monitored closely.

However, after numerous negative results, it wasn’t until he was 18 months old that he was officially diagnosed with Epilepsy and started on his medication. I was devastated!

Although I didn’t know much about it, I knew enough to be scared and worried for my baby boy.

After googling his diagnosis of Lissencephaly I had more insight and found that epilepsy is very common in children with Lissencephaly and is one of the main causes of these children having a shortened life…

Great! One more thing to try and attack my boy.

At this point I’ll be honest, I just got swept away with getting him on his meds, getting the epilepsy under control and not letting it interfere with Zachariah’s enjoyment in life.

I didn’t really look into the type of epilepsy he had or research alternative drugs, I just put my faith into the doctors and hoped that we were on the right path.

Fortunately the meds worked, but as some of you may know from a previous blog, it changed him, Zachariah became more grumpy and restless, but the bonus was there were less seizures!

We are now coming to the limit of his current meds and they need reviewing, I am so worried as I have just about got used to the routine of giving him Epilim twice a day, and now we may be facing new drugs, new dose and new side effects!

But reality is he’s outgrown them.  His seizures have become more aggressive, more frequent and causing more of a disturbance!

Just last week, we had friends over, to set the scene, we had trolls movie on, we were all singing along, having lots of fun and in that moment it was so special.

However this was quickly interrupted by an aggressive seizure which caused him to gag and splutter on his own sick!

Being in the kitchen I didn’t spot it straight away but my friend quickly called me in to attend to Zachariah.

It was probably the scariest, most upsetting seizure I have witnessed and it made me so so angry!

Zachariah was in a happy place, enjoying the company of friends, but epilepsy didn’t care at all, it just came racing in to take that moment away.

This is just one moment and just one seizure that I share with you, but in reality Zachariah faces lots more in his daily life, some we catch, some that go unseen, and they range from absences to partial complex seizures.

It is now that I am getting more involved as I am feeling like it is getting out of control and it isn’t as simple as starting him on meds.

Epilepsy is our enemy but we will not let it defeat us!

On 19th March I will be running a 10k, raising funds for the charity, Epilepsy Action and to fund Zachariah an Epilepsy Watch to give us peace of mind!

Epilepsy doesn’t care!

In a household with three busy, scattered children and two unruly dogs, it is nice when I actually receive a response to my questions and requests!

Alexa, the comforting voice inside Amazon Echo, is there when I need to know the missing ingredient to a recipe, to set the timer so I won’t burn the muffins or to read the news while I complete a household task.

Although it may not sound like Alexa takes that much off my plate, she can perform a number of tasks that can save time and maybe even some money.

Shopping by Voice

Do you need to order a specific special needs product?

Ask Alexa.

She can service your request for dairy free yoghurts, nappies/diapers for older children, chemical free baby wipes or even a certain special needs book — quickly and easily.

The key is to have an Amazon Prime account and to be very specific about the item that you are requesting.

If you know the brand, title, specifications and color you need, you will be more successful at shopping via voice.

Gathering Information

Do you need to know the weather forecast so that you can plan your day?

It may be that you need some support or advice for a particular special needs topic.

Ask Alexa to find that information for you, and she will read it aloud.

Managing Home Electronics

Although I have not personally tried this, Alexa may be able to save you money by managing your home’s heat, cooling and lighting.

If your hands are full or busy with other tasks, she can turn on lights or other “smart” electronics that have these capabilities.

Your home would need to be equipped with the appropriate smart devices. However, the upfront investment will likely pay off in the long run in lower utility bills.

Taking a Relaxing Moment

Lastly, Alexa can be a friend who listens to you and helps you relax.

Have Alexa read you the news or play some soothing music when you need some down time.

Better yet, if you need a smile at the end of what was likely a challenging day, ask Alexa to tell you a joke!

Although Google Home, Amazon Echo or Microsoft’s the Verge cannot replace human contact, having an interactive tool in your home can make things just a little easier as you move through your busy life.

And if you just need some peace and quiet, you can just say, “Alexa, stop!”

There are so many special needs blogs these days.

These niche sites were scarce 5 years ago, out of sight and out of mind, but thankfully they are multiplying and providing support not only for others, but a cathartic release for their authors.

Blogging has brought me so much joy, excitement and a safety net of support, as well as true friends.

But there have been negative moments.

Here are some of the hurdles that can throw you off course.

Comparison with others – It’s easy to end up comparing your writing, your lifestyle, yourself or your child’s condition or progress to others.

You, your family and your blog are unique, so accept and celebrate that.

Pity and/or inspiration – This can be a very fine line to tread for many and you have to balance being honest and truthful and campaigning for better support whilst creating a welcoming space on your blog for others to visit time and again.

I think it’s important that readers don’t feel sorry for my child, or think her inspirational for doing ordinary everyday things, that would be when it all becomes patronising.

Privacy vs advocacy – There is increasing criticism of parents over-sharing information about their children with disabilities without their informed consent.

Our blogs, after all, will be a digital tattoo for the rest of their lives and this is worth bearing in mind.

My blog has certainly become less personal as the children have got older, other bloggers choose to remain anonymous.

But Downs Side Up has always been a place to showcase the voice of others with Down’s syndrome too.

I think having a child with a learning disability means that we often become their advocates and without our blogs they would still be hidden and forgotten.

Their voices must be heard.

Trolling – The internet, social media seem to encourage a kind of sport where it is acceptable to write horrendous things to vulnerable people that you would never say to them in real life.

Like most bloggers we’ve had our fair share of trolls, some which needed police attention, and also criticism from within our community.

There’s no denying that this hurts, however many times you experience it.

Losing your way – Comparison to others, following the latest meme, competing for votes for awards, over-monetising your blog and filling it with reviews or simply accepting to help every single charity that ask you to get on board with a campaign, can all contribute to writers losing sight of why they started blogging in the first place.

As you should always pause before hitting publish, always pause before you write.

Your blog is your own space and it can quickly become hijacked.

Sometimes a blog break helps bring back the focus and reminds you of the original motivations and why your readers started following you in the first place.

It helps you find peace with your blog and maintain its authenticity.

So while I can no longer keep up with the sea of SEND blogs, each one as unique as its author, it is really heartening and important to know that they are there, and that they are making a difference and forming a safety net around us all.

So, keep writing, blog for yourself, your families, your sanity and make your voices heard.

I’ve never been a night owl, even in the distant pre-child days, but I’ve always been quietly proud of my ability to function on only a few hours sleep.

Now the munchkin is that bit older and is quite the sleepyhead, you’d think that the days of dragging myself through work kept awake merely by copious amounts of caffeine in one form or another would be long gone… but sadly no.

You see, epilepsy is incredibly rude and doesn’t respect anybody’s routine whatsoever.

Sam may be so tired that he can barely keep his eyes open, but that doesn’t mean he can sleep.

The activity in that little head of his is continuous and can, at times, become far more than just an irritation.

Even when he DOES manage to drop off to sleep the seizures don’t leave him alone for long…the average night sees him experience 3-4 seizures.

Mostly he stays asleep through them, although his SATs monitor will alarm if and when his movements become erratic or his breathing is an issue which ensures that we are most definitely not asleep.

Nightly activities in our house include getting up multiple times to check – he’s breathing/turn the alarm off/curse it for going off erroneously yet again.

The monitor is threatened with going for a flying lesson out of the window approximately 4 nights out of every 7.

The joys of attempting to remove a probe that is malfunctioning and attach a new one *without* waking the sleeping little poppet at 3am, only for said poppet to wake up on his own at 3.30 and decide to practice his singing voice.

I wouldn’t be without that monitor for anything though.

Even though it drives us up the wall on a near-nightly basis, it has saved my boy’s life many times.

Without it we wouldn’t be alerted to the serious seizures that stop him breathing.

The banshee-like screech of the alarm wakes us out of even deep sleep so that in a matter of seconds that we can be there, with the oxygen, supporting him and comforting him until the seizure passes and calm is restored.

After all the drama, inevitably my gorgeous boy is off to sleep again very quickly, Pixie (our female tabby) retakes her spot next to Sam on his bed, to keep a watchful eye over him.

And his Dad and I lie awake, listening to his breathing, and thanking God for that monitor.

It’s not a secret that you can’t walk

Although we truly believed you would

Last summer

And this summer

But we are still waiting

 

It’s not a secret that you can’t talk

But the few words that you can say are like the sweetest music

And when I say ‘I love you’, you say ‘bike’ or ‘cat’ and may never say ‘I love you too mummy’

 

It’s not a secret that you have difficulty learning

Learning to read, write, paint a picture for mummy’s fridge

Learning to push the train along the track

Rather than destroy the track

Learning that it’s not ok to hug strangers

Or throw your iPad across Starbucks

 

It’s not a secret that you wear a spinal brace

Although I used to buy extra-large jumpers to conceal it

And I want to punch people when they ask how long you will have to wear it for

Because it may be forever

 

It’s not a secret that you wear specialised boots

And will never wear Converse or Nike

 

It’s not a secret that you own a walking aid, a wheelchair, a school activity chair, an orthopaedic chair, a bath board, a toilet seat and a standing frame

And we have a cupboard full of free nappies

 

It’s not a secret that your best friends are Iggle Piggle, Noddy and Thomas the Tank

And your favourite playground is the consultant’s waiting room

 

It’s not a secret that I have cried seven times this week

And it’s seven days since I had a bath

 

It’s not a secret that I feel constant anguish over your future

Or the lack of it

Or the uncertainty of it

 

It’s not a secret that my fridge is full of wine

My cupboard is full of chocolate

And my calendar is full of appointments

 

It’s not a secret that I want to spend precious weekends with you

Not drinking wine with my mates

Like the old days

But reserve the right to want to drink wine with my mates at a moment’s notice

When I really need to talk about my woes

And expect them to understand

 

It’s not a secret that I used your disabled badge in Sainsbury’s car park the other day when you weren’t with me

 

It’s not a secret that the last four years have felt like forty

But forty of the best years of my life

 

It’s not a secret that I swear under my breath about 27 times a day

Some of them at you

Some of them at your baby brother

And some of them at your daddy

Not under my breath

 

It’s not a secret that I wake in the middle of the night to listen to you breathing

And sometimes creep in and stroke your face

Because you don’t really like me doing that when you’re awake

 

It’s not a secret that we wound the bobbin up

And back again

About twelve times yesterday

And I pointed to the ceiling, the door, the window and the floor

And you looked at me

And clapped

And signed ‘again’

 

It’s not a secret that I sometimes lie when friends ask if I’m OK

Because to explain why I’m not ok

Would be too painful

 

It’s not a secret that I sometimes have to hurt you

To keep you safe

To keep you out of harm’s way

To keep your quivering body still

Under the X-ray machine

Or to administer your medicine

 

It’s not a secret that the tears I shed for you

Are mostly tears of happiness

When you say a new word

Use a new sign

Get another award from school

Or give your baby brother a cuddle

 

It’s not a secret that I wipe your nose

Your bottom

Your tears

And will continue to do so for much longer than most mums will do for their children

 

It’s not a secret that everyone who meets you is intoxicated by your enchanting spirit

And that it’s because of you we have become better people

 

It’s not a secret that I only share a small proportion of my life with the world…

…because the rest is a secret.

It is now a bit grim and grey out there… but from my window I can see the signs that nature is indeed waking up after the long winter months.

Snowdrops are all over the place, crocuses are popping up giving a dash of brilliant colour to the otherwise fairly bare landscape of our garden (currently a muddy marshland).

The animals can feel it too, the chickens are laying again, the dog is desperate to sniff *everything* (in fairness that’s nothing new) and the cats are starting to gear up for rodent hunting season – we have a small stream running through the garden, so voles are a common ‘present’ from our beloved felines from now till autumn.

But the big news in the household is that the VNS is now switched ooooon.

The little Dude was immensely brave having his stitches removed (even the last one that was a swine to get out), and he finally got to have a bath after 2 weeks of not being allowed.

Waking up this morning things felt exciting, the VNS is only on its initial settings currently so we have a way to go before it’s at a therapeutic level but there’s an optimism that we haven’t had for many years.

After trying medication after medication without success, its refreshing to be trying something different.

Of course, we all want it to work brilliantly but only time will tell… but knowing that we have something that could potentially allow us to stop a seizure starting or to shorten its duration/severity is a huge thing.

I promise in March I’ll talk about something other than the VNS and its associated stuff (ok, maybe there will be a little VNS stuff…) but February has been all about this one little device.

On a different note, Merlin has been incredible with Sam while he was healing after surgery – the poor pup missed his best friend terribly while Sam was in hospital and I suspect the feeling was mutual.

Knowing that he shouldn’t lick Sams neck/face he’s resorted to licking his hands as a way of letting Sam know that he’s with him, although I’m not so sure Sam appreciates having Merlins favourite toy dropped onto him while he’s napping on the floor.

I remember it like it was yesterday; pulling the car up onto the driveway and hearing Jenson say “hhhmmm”.

As a non-verbal then two-year-old, he was beginning to try to enunciate some simple words, and this was his version of ‘home’.

His poor oral-motor skills meant that progress with speaking was painfully slow.

He had attempted to speak the word ‘home’ hundreds of times before so this was nothing new.

However, when I turned to look at Jenson in the back of the car, I was met with his beaming smile, and his hands making a gallant effort to create the Makaton sign for ‘home’.

This was a defining moment that signified a clear breakthrough in Jenson’s communication.

The first time he had attempted signing.

For the past few months we had been repeatedly signing various basic words to him, and facilitating signing through games and play.

We hoped that some of it was blueprinting on him, but the truth is that we had no idea if anything was registering, because he was making no visible efforts to copy us.

It all felt somewhat abstract and we worried that it was to prove futile.

And then, our first Makaton epiphany: We discovered Singing Hands.

Up until then, Jenson had shown little longevity in front of the television; he would rarely sit and watch for more than five minutes.

Immediately on the introduction of Singing Hands into our lives, he was sitting mesmerised for the entire 45 minute DVDs!

It was as if these songs and scenes had accessed a new area of his brain.

Before long, Jenson was watching the DVDs on repeat.

The magical and captivating songs, hosted by the vocally-blessed founders of Singing Hands, Suzanne and Tracy, have provided a fun, simple and creative means of learning a good basic vocabulary.

Children are drawn in to the catchy and familiar lyrics and bright and cheery scenes.

Naturally, we watched the DVDs along with Jenson, and I even caught Jenson’s daddy conscientiously teaching himself the signs for colours while ‘I can sing a rainbow’ was playing on repeat!

I have no doubt, that Jenson’s inaugural attempt at signing in the car that day, came as a direct result of his new found love affair with Singing Hands.

I would highly recommend Singing Hands to all parents of children with communication needs, and in fact I know of many families with typical children that love them too.

We even went to watch Singing Hands at the theatre last Christmas, and that was truly magical.

Seeing the children’s faces light up when their favourite screen stars appeared on the stage was a moment to remember.

Singing Hands resources can be purchased via this link. Videos can also be accessed via YouTube.

Our second Makaton epiphany was the masterpiece that is Mr Tumble.

Jenson won’t go a day without watching an episode and not only has his signing come on leaps and bounds through this great TV show but also his attempts at speaking.

The catchy songs and hilarious characters ingeniously captivate children’s imaginations.

The dialogue that Jenson’s new found skills have afforded us is priceless.

He now has the ability to communicate to us his basic wants and needs, and we can respond, answer and satisfy him.

His fine motor skills are poor and so his signs require a certain level of interpretation, for example, ‘daddy’, ‘more’ and ‘bed’, all appear similar!

But to those that know him well, we can contextualise his movements and decode his gestures.

Both Singing Hands and Mr Tumble have been lifelines for our family.

They have curtailed the inevitable frustrations of not being able to communicate, and have allowed us the ability to engage in a basic dialogue with our son.

By learning signing, Jenson is developing his cognitive abilities, fine motor skills and even his concentration levels.

His baby brother is even starting to learn some signs too!

It is wonderful to feel that two-way connection with your child, even if it is as simple as ‘what do you want?’ – ‘yoghurt please’!

The reality is that we have no idea if Jenson’s speech will develop to the extent that one day he can hold a conversation.  But who says those conversations need to be in spoken English?!

His new enthusiasm for signing has opened up new hope for us.