When The Smallest Change Makes The Biggest Difference

Inevitably, the neuro will look through the notes at the multiple medications already tried (and failed), before consulting the ‘Supreme Pharmacy Book’, (the British National Formulary, or BNF for short).

This thick paperback tome contains within it the details of all the medications, combinations, side effects and contraindications that medical/pharmaceutical science knows about – OK, that’s a gross generalisation and not exactly accurate but it’s how I view it.

After several moments of scanning pages of drugs, the neuro will possibly suggest changing one medication out in favour of another.

Sometimes it’s just a case of, ‘We haven’t tried this exact combination previously, so let’s give it a go!’

Other times it’s a drug we’ve used in the past with varying levels of success.

Other times it’s as simple as altering the dose of the drugs he’s already taking because he’s grown and gained weight.

No matter what is decided upon, each tweak ignites a tiny spark of hope in us as parents that this time will be different.

This time we’ll find something that really works.

Sam is a swine for having honeymoon periods on medication – a new med or a dose change usually heralds a period of significant improvement, just enough to get us really hopeful, before the improvement wanes and the seizures kick back in fully.

It is utterly, totally draining, for all of us.

So when this summer it was suggested to reintroduce a drug he’s taken twice in the past we weren’t overly optimistic of any actual improvement.

However in five years of dealing with epilepsy as a family, we’ve learnt that an improvement doesn’t need to mean a reduction in seizures.

That medication added into the mix a few weeks ago is now at the level his neurologist wants to hold it at for now… his seizures are still coming daily, but seem far less severe.

The biggest difference though, is in his development.

He’s trying to chat far more, and is attempting to form words (and succeeding too).

He’s happier, that gloriously stunning smile is once again in residence. I’ve got my little boy back.

We never know how long any positive changes will last so for now we’re just allowing ourselves some time to wallow in the knowledge that epilepsy will not win x

We NEED An Accessible Home

Right now it is between GJ button or OGD surgery and so on.

A lot of huge decisions, a lot of trial and error, a lot of wait and see, a lot of sleepless nights.

Building a den and hiding in it is no longer an option. Nor is being lay face down on my bed shunning the world around me.

I am an adult now. A responsible, determined, fuddled adult.

Instead I turn to others like me, I take to forums, I take to consulting friends, I take to reading medical journals and so on.

Our biggest issue right now is housing. I am sure you can relate. You see, we bought our house a few years ago when I was pregnant with Amy. We moved back in with our parents and saved frantically stashing away our pennies like squirrels harvesting acorns.

Finally we did it. We had a 10% deposit for a small two bed terraced house, it was to be perfect for our little girl. NOT.

Fast forward almost three years and the stairs are becoming a back breaking and dangerous mission and our wheelchair doesn’t fit into our house anymore.

Navigating through our equipment ridden house is reminiscent of a scene from star wars, dodging enemy wheels and benching, souring past forts of tube feeding supplies.

So the wheelchair stays in the car and we carry Amy to our house.

Her dystonic, sudden and unpredictable movements render every transition a risky manoeuvre.

So we were told we need to go on a social housing list and await a suitable house.

Our house will not fit a lift, nor will it accommodate an extension, not to mention the ever size increasing equipment and overall lack of space to breathe.

I am told the housing could come through tomorrow – or in ten years, or even not at all.

Housing like ours is in high demand but seemingly non-existent. I see constant new build houses and flats being built without a moment’s consideration for families like ours.

We don’t want to sell our house.

But we will have to. I have recently turned to the idea of renting again.

It is a huge step back for us and actually renting a bungalow here will cost almost double what our mortgage does.

My biggest concern is why this is being allowed to happen?

What would have to happen for this very serious issue to be given the attention it deserves?

I understand fully that this isn’t the fault of anyone in particular, but at the end of the day the safety and quality of life of our whole family are being compromised by our current living situation.

In our most recent TAC meeting I voiced these concerns. And whilst it was acknowledged and empathised with – there was no one around the table with the power to help fix this problem. Everyone has agreed it is a very serious issue but has nothing within their remit to assist.

We can’t magically force an adapted house to appear from nowhere, no one can. But surely there is an option out there somewhere.

I am awash in a land of researching – researching criteria for housing benefits, finding contact details for local politicians, seeking out applying to TV shows for adaptations (even though I know full well they only help people who have land space for their house to be extended) and so on.

I don’t want to be one of those people who mope and have an overwhelming sense of entitlement, but this is a real problem.

At the same time I know there are people far worse off than us and this does make me feel bad for being so upset about these issues.

But what will it take?

What if I tripped over her tube carrying her up the stairs?

What if she hits her head on a door way again and gets seriously injured?

What if my back finally gives in and I am physically unable to carry her up?

We only have two downstairs rooms and it isn’t possible to make these into a bedroom or bathroom for her. What would happen then? Would this cost the “system” more to provide care than it would suitable housing?

Yesterday I rang a letting agent about renting a property. I explained our current arrangement and what we are hoping to achieve. The lady said “there will be no point viewing the property until you sell your house”.

I explained the catch 22 of this… what if we sold the house then this property wasn’t available?

How can we sell our house not knowing exactly what is going to happen and where will we go?

In my opinion you should be allowed to rent all the houses you want as long as you are able to pay each month.

I got emotional, cried, ended the call.

I have since received three voicemails from this lady who is obviously embarrassed at how she directed the call. She is trying to get someone to come and value our house… she admitted to “getting the wrong end of the stick” and hadn’t stopped to consider that we have saved up enough that we can rent and sell our house once we have moved out, for example.

I am infuriated that they were so money minded and so self-interested that they didn’t stop to listen to the full story. I understand that they are a business and that it needs to be worth their while… but all I wanted was to view the place! It felt like a huge barrier had been put up. It felt like yet another avenue was closed off for us and that we are destined to struggle on until the worst happens.

It shouldn’t be a case of whoever shouts loudest, or worst case scenario occurring and rendering you unable to be a carer anymore.

It should be that strategies are in place to help families like ours to pre-empt future issues and prevent them from happening.

The world knew three years ago that my child would have significant mobility challenges.

Where is the provision for this?

Her hips are already starting to become asymmetric and if my back is gone how will I do our bench sitting and standing frame transfers?

I will let you all know where I get with the contacting of the MP and so on. I want to at least try and also speak up for, not just my little girl, but for everyone out there who is seriously risking their mental and physically health everyday trying to care for their child safely.

We only get one chance to live and it pains me deeply how challenging things can be.

I want to move past this issue.

I want to be able to go from car to house without injuries and twinges in my back.

This way I can focus on other areas in our life such as physio, communication, gastro issues… maybe even getting a hobby.

Look after yourselves everyone. If you are going through what we are – I’m sorry.

I hope that you too one day have what you need to live as much like everyone else as possible.

If I win the lottery… I will try my best to help others in our situation! Until then… painkillers, doctor visits and whatever else to fix my back and more star wars themed entries into my little home.

May the force be with you.

When Things Are Put Before People, That’s When I Get Upset

I’ve just come home from a family meal. We chose a lovely refurbished pub and hotel, near to where we live.

The food was really quite impressive, the kids were very well behaved, there was a good choice of food and a great atmosphere. It has clearly been lovingly restored by the owners who, in my opinion, have great taste in decor and wine and it offered quality, local produce.

The children’s menu was also very well thought out (and the kids really did love their dinner).

But for me, it was a real struggle to put on a happy face and enjoy it (but I did, of course, for my family’s sake). Why?

Because it was quite obvious that not a thought had gone in to access.

Starting with the huge steps up to the restaurant from the bar. We would have sat in the bar, but food isn’t served there, so we had to carry my son in his wheelchair up the steps.

He’s six, so between my dad and my husband that is just about doable. He thought it was great to ‘fly’ up and down them, but it made my heart sink.

Because it will not be long at all before that is just plain dangerous.

And imagine having to do that with an adult.

How utterly embarrassing for them, not to mention impossible in most circumstances. Despite the staff being cheery and attentive, nobody acknowledged or apologised for that (or offered an alternative route).

Whilst a member of staff handed us menus and took our drinks orders, I asked quietly where the disabled/accessible toilet was – to which I got a very apologetic reply, that there wasn’t one.

The builders had taken it out in the refurb and not put it back in. The member of staff said that one would be put in, but it had not been as yet.

She did tell me that there was a slightly larger cubicle in another part of the building that we could use – but we didn’t, we just held on till we got home as we knew that would not be any help.

A standard accessible loo is hard enough to use for changing and toileting my son.

A cubicle is impossible.

The lady was very embarrassed and I did feel for her. So I was understanding and polite and didn’t question it or make a scene. It was clearly not her fault or decision.

But it made me feel so disheartened, sad and cross.

I sat through the meal next to my little boy, in his bright orange wheelchair, as he hungrily devoured his battered fish and chips and played with his toy cars. I watched him really enjoy his meal and being out in a nice place to eat.

Despite finding many public places a huge challenge with his anxiety, he loves pubs and restaurants, particularly if they have nice fish and chips!

So we do eat out often as a family. It’s one of our favourite things to do together. And in my mind, it’s one of the things we should be able to do together as equals.

Shouldn’t we? It broke my heart that he is so blissfully unaware that this place had not considered him at all. Not to mention the rest of the disabled population!

I have not named the restaurant because I would like to build a relationship with them and see if I can help them become more accessible (and of course I will be strongly recommending that they include a changing bench and hoist in this disabled toilet that is yet to be put in. (If Wetherspoons can include a Changing Places, then this high-end beauty of an establishment can!) I’d really like to help them.

I just don’t think that the needs of those with disabilities has crossed their minds. Or at least I hope it’s just ignorance and not that they have chosen to be this inaccessible.

It does make me wonder just how many other places that are refurbishing will end up in this same inaccessible situation? Why is nobody making sure that places are actually catering for all customers? Or are we just expecting too much? Should we just accept that we are not really that important?

Of course not!

I consider all children (but, of course, especially my own) to be some of the most important people on the planet. We should be teaching them that the world should be accessible to all, not accepting that this is the way things are! They are the next generation.

The future depends on them.

I feel it’s my duty now to make this place aware of how awful they look to a family with additional needs. We visit a lot of pubs and restaurants, many of which are so old it’s a wonder they are even still standing.

Then, of course, I’m not as expectant.

But when something is new and lots of money has obviously been invested in making it impressive (it’s hard as a designer to not notice the extravagant things like designer light fittings and gold foil printed menus) to discover how far down the list of importance the disabled customer comes, is a real slap in the face.

I’m going to try to change that. Here and wherever we go. If I can.

Diagnosis Day

When I dreamt about this day there were fireworks and celebration, there were tears of relief and a feeling that there was some kind of end to all the madness.

However reality didn’t quite match up to this.

It was all just a bit, ‘Oh okay, that’s it then’.

Tim had taken the day off – whenever we feel it is going to be big news, he takes a day off so he can be there to hear first-hand.

With only having limited holidays, he has to prioritise.

We treated ourselves to a nice breakfast and set off for the 40 minute journey to the hospital an hour and a half before the appointment was to be held (as I’m an early bird) and got ourselves there nice and early.

The clinic was really busy, I think they’ve had a huge revelation in the genetic world and so we were amongst many other families who were too getting their much desired answers.

We weren’t waiting long when we heard Zachariah’s name called out, we walked down to the room with anticipation in our eyes and both sat down to then take a deep breath.

The Dr was lovely, before she started she checked we were ok, asked how our journey was and gave Zachariah the attention he so loves to receive.

She then began to ask about Zachariah and what he enjoys to do.

She asked about his hobbies and whether or not he was in nursery. She was just so wonderful!

We are so used to going into these clinic rooms and being treated as a statistic or a number, but this lady was showing interest in our boy for who he really is.

I thank her for this!

And then she said it, she went into a different language and told us that Zachariah has a change in the TUBB2B GENE.

And there it was the condition.

But there was no celebration as such, there was just silence then a smile of relief.

For some reason it didn’t really matter so much anymore, with all the worries we were encountering with Zachariah’s health and feeding difficulties, the only thing that mattered was that he was well.

I had told many friends that I would consider adding to our family when we had the answers, however nothing seemed any clearer.

After searching for this answer since before he was born, it’s a little bit like a bursting balloon as it doesn’t seem to have affected our family too much.

I mean it’s great that we have the diagnosis, and I feel very blessed to have such an incredible hospital with an incredible team of Doctors who have worked so hard to find out why Zachariah’s brain didn’t develop.

And I am over the moon that it’s not genetic.

It was, as they described it, “a one-off, a fluke, random”. (I’m not entirely sure how I feel about these ways of describing my son, I could think of better ways, such as unique and exclusive, this somehow makes him sound more like a superstar).

It’s funny how we get so caught up on the language people use when speaking about our children.

We are so blessed to have these answers, and I will never take it for granted as I know it is not as simple for other families.

My message to those families, is don’t get caught up in finding answers, enjoy your children and put your energy into making every moment count.

Much love! xx

The Sign Said, ‘Accessible’ – It Was Anything But!

I knew as long as he got to see the lift doors open and close a few times there was a slight chance I would manage a quick grab of a card and a very brief look at wrapping paper.

I was barely in the door when a familiar odour made me double back to the car for the changing bad.

I have yet to graduate from the baby changing bag to a handbag despite the fact my youngest is eight years old!

My son was most unimpressed at this sudden change of plans but with a lot of, ‘first car, then lift’, talk he sort of when along with me.

I held him tight while I reached into the boot for the nappy bag.

As we returned to the shop I looked him in the eye and whispered ‘first change, then lift.’

I was treated to his wonderful ear piercing scream, the sort that rattles off your ear drum for minutes later and draws stares for miles around. For a child with zero words he can sure scream load!

Despite his obvious protest his needs needed attended too so I marched him quickly in the direction of the toilets.

It was a large supermarket.

We had just passed the electronic scooter trolleys, the wheelchair accessible trolleys and the various parent and child ones.

This was the very supermarket who had recently held a ‘quiet hour’ to help families like mine.

As I stood in the hallway of various bathrooms I looked around at my options.the usual ladies and gents, followed by a baby change room and a disabled bathroom with this sign.

Brilliant!

Except it wasn’t!

The sign read ‘accessible’ yet as I took my disabled son in to change his nappy there was nowhere to lie him down safety.

The safety railings by the toilet were of no use to me, neither was the pull cord or the higher seat.

The lower wash basin was not what we needed either. I needed a bench where my son could lie down comfortably to have his needs met.

There was nothing.

I knelt down on a toilet floor because I refused to lie my son down. I had to see to his dignity in the most undignified way possible.

He doesn’t understand that this is not right, but I do. I have done it too many times now.

But this time somehow upset me more, not because he was dirty or because he was upset, but because this bathroom had a sign on that should have meant I had access to the facilities I needed.

The sign read ‘accessible toilet, not every disability is visible’

Perhaps it should have read ‘accessible toilet, unless you need a bench!’

I met my child’s needs and after a quick watch of the lift doors I left without buying that birthday card or paper.

I would rather spend my money in a retail outlet that values my son’s dignity and doesn’t pretend things are accessible when they clearly aren’t.

To Have Another Child… Or Not?

For me and mine it was sadly a very straightforward decision – pregnancy and I do not get along well.

I wasn’t just physically very poorly throughout the pregnancy but my mental health spiralled out of control too. It was a deeply traumatic experience for everyone and the only thought that got us all through was the knowledge that it would, eventually, come to an end.

When Sam arrived it felt like the nightmare was finally over, then came the seizures.

We never planned on just having one child, certainly in the early days with Sam after his diagnosis the yearning for another baby was intense.

I felt like I was rejecting the baby I had, but have since found from chatting with other special needs mums that this was a very normal, natural thing to feel – I had been denied the experience of motherhood that I’d been prepared for and desperately wanted, for so many years.

Yet the prospect of another pregnancy actually gives me nightmares. Seriously.

As Sam has grown, that desperate desire has faded somewhat… we have an amazing little boy and I am more grateful that he is here than I can put into words.

But there is no denying that he has far more needs than many and my own health isn’t fabulous.

After much discussion we both agreed that having another child wouldn’t be right for us as a family.

I’d fear that they would be born to be a carer for their older brother (or worse, me) or that they would be born with the same problems Sam has.

And I just couldn’t put another child through what he’s suffered.

Sam is a SWAN, we don’t know why he has such profound difficulties, and have no way of knowing the probability of another child having the same issues… it doesn’t mean we wouldn’t love to have more children, just that for us the risks are too great.

It is an intensely personal choice whether or not to have another child, for some the choice is made for them one way or the other.

I have so many friends who have had more children after their special needs child – some also have problems, others are perfectly healthy.

For us, it isn’t just Sam’s issues that have cemented out decision.

My health during pregnancy was a major issue, I just couldn’t go through that all again.

We have the option of fostering or adopting in the future, if the time comes when we find that would be the right choice for our family.

Several friends have already gone down that route to expand their families, who knows what the future will bring? x

Grumpy… And Thankful for It!

I drove the 120 odd miles back home marvelling at the beauty of the sunset while feeling a deep sense of just how fragile and fleeting life can be.

As I walked through the door I was greeted with a squeal of excitement from the dog, you’d have thought he hadn’t seen me in months, and a scathing look from my little dude.

When asked if he was happy Mummy was home, I was rewarded with a lovely grin and a little nod of the head…

And I vowed that I wouldn’t waste a single moment with this little chap.

The munchkin, satisfied that Mummy was now indeed home and not going anywhere for the foreseeable future, snuggled down and was asleep only minutes later.

Que 3am and the little tot had managed to pull out the probe from his SATs monitor, which was now screeching like a banshee.

That problem was swiftly sorted to be followed less than an hour later by the tell-tale alarm going on to warn us that his oxygen was too low… he had somehow wiggled his toes to get the actual probe itself off. Daddy dealt with that one.

Then it was back into bed to warm feet up before it was time to bounce out of bed and greet the new day (smallest person now fast asleep of course, and grizzly on being woken for school).

I may come to regret this statement but seizure-wise, the past month has been pretty good.

Since we changed his meds round a bit the seizures seem to be a lot less frequent and a lot less severe, although they ARE still coming multiple times a day.

I don’t wonder what life would be like without them anymore, the reality is they will almost certainly always be a daily event so as long as my boy is happy, so am I.

But oh boy, I hadn’t realised how run down I actually was until yesterday when I noticed a teensy tiny ulcer starting on the left side of my mouth.

I’m prone to them so I stick on the bonjela and forget about it… Usually.

However this morning I have a mouth that feels like I’ve been chewing on a blow torch, swollen glands in my neck and am feeling pretty naff.

The likely reason for this sudden collapse into crapness?

Things are actually on the up for a change.. Honestly, I have no words (and not just because my throat is too sore to actually talk).

A Special Bond Between Special Children

Being just 17 months apart in age, my sister Lucy and I were like best friends growing up.

That has continued into our adulthood, and now, as grown-ups and mothers, this friendship is stronger than ever.

Personality-wise, we are like chalk and cheese, but perhaps that’s why it works.

As young girls we would hatch plans to have babies at the same time in life, and speculate on how our kids would be the best of friends: siblings rather than cousins.

As fate would have it (or perhaps we inadvertently created our own fate), we found ourselves ready to procreate at the same time in life.

We both commenced an industrious effort to conceive, along with the gallant assistance of our husbands.

We fell pregnant within six months of each other, Lucy leading the way.

When my gorgeous nephew Elian was born, the adoration I felt for that little boy was like nothing I had ever experienced.

Six months later, I had my own beautiful little baby boy, Jenson.

Our boys had a, ‘brother’, each and our childhood-hatched plans had come to fruition.

Therein began the genesis of our boys’ brotherly love. From that very early age and between those tiny tots, a unique relationship started to emerge.

Only a year on, my sister gave birth to a second boy, Xander.

We were all very excited by the prospect of three little boy-rascals running rings round us all, and moreover by their threefold brotherly bond.

It is fair to say that the first couple of years were a baby-blur for both of us. For Lucy, because she had two under-twos to contend with, but for me a very different reason.

Since birth, Jenson had been showing an increasing number of worrying physical and developmental issues.

Along with the perpetual hospital visits, I was emotionally drained.

Months and months of uncertainty were followed by a diagnosis of a rare genetic disorder, which presented as many questions as it did answers.

Fast forward two years: Jenson is now approaching four years old and we are in a stable place with his health, development and schooling, albeit that he requires full time care and individualised therapy.

Now that I have provided the necessary pre-amble and set the scene, I come to the purpose of this blog, which is to pay tribute to my nephews.

The fog has somewhat lifted and the optimism of life has returned, and I can reflect on the past and anticipate the future with philosophical excitement.

My two gorgeous nephews, who squabble and row, fight and squeal, tantrum and terrorise just as ordinary three and four year olds do, show an extraordinary level of compassion and gentleness towards Jenson.

It is with great fondness and pride that I see the empathy that my nephews have fostered for Jenson.

My youngest nephew, who is barely into his fourth year of life, is fanatical about trains.

Last week, his meticulously constructed train track, equipped with bridges, turntables, and signal boxes, met an untimely demise when Jenson decided that the pieces of track made good projectiles across the playroom.

The poor little fellow suppressed his tears and set about restoring his masterpiece. Not a complaint in sight.

The three boys share a passion for vehicles; cars, bikes, scooters, trikes. Between them they possess a plethora of ride-ons.

The general rule is outdoors only, however Jenson is permitted to ride his trike indoors as this provides him with an element of independent mobility.

My selfless nephews seem to have an innate understanding of this exception to the rules and never show dissidence to it.

Seldom do they ask for ‘their turn’ because they see how much Jenson enjoys and needs that trike.

The behaviour that we witness from these little lads is captivating and awe-inspiring.

During play, snatching is eclipsed by sharing.

At the dinner table, rowdy outbursts become quiet conversations.

In the garden, running and wrestling is overtaken by hand-holding and helping.

They advocate for Jenson in the playground, and try to facilitate his involvement in activities that his poorly legs find arduous.

They industriously try to help him learn to walk, and demonstrate clear pride in knowing that they are playing a part in Jenson’s development.

They talk to him on FaceTime even though his words are somewhat undiscernible and conversations are one-sided.

They react endearingly and patiently to his insatiable demand for kisses and cuddles, which are often a little over-zealous.

Even before Elian and Xander were too young to have the situation explained to them, they subliminally and intuitively learned to alter their behaviours when in Jenson’s company.

And now that they are older, they accept Jenson for exactly who he is…

they have developed a level of comprehension way beyond their years.

I truly believe that they do see him as a third brother, and indeed Jenson shows such adoration towards them as if they were his own brothers.

It has been an extraordinary journey, and one I feel privileged to be part of.

I am very proud of my nephews and gratified that Jenson has played a part in helping them along the path to becoming honourable and humble young men.

It’s been a joy to watch the evolution and of this pure and simple brotherly love.

Sometimes It All Gets A Bit Too Much

It had all just got a bit much for her.

The noise of so many voices. The smell of so many different foods combined with the smell of people and everything the shops were selling.

The brightness of the lights. The sense of dizziness as we walked in and out of different shops that were different temperatures, had different flooring and so many colours all around her.

The constant thud of feet walking on the tiled floors. The bombardment of music and announcements. The lack of personal space in busy lifts and shops.

She could not wait to find a seat. She could not go on any further. So right where she was she sat down silently.

I left her sit alone at first. But after a while I sat right beside her. At first she was silent unable to even voice how hard it all was for her.

Eventually she said that it was all a bit too much.

I may not have autism but I can so relate to that feeling too.

When she was ready we both got up and headed home.

I didn’t have to take a photo of her that day but I did it for two reasons:

Firstly I want to remember what happened so that I can perhaps help her before it gets to this stage again.

As the shops get busier leading up to Christmas and the music, smells, and lights all get even greater I want to be able to keep a close eye on my daughter before it all gets a bit too much for her.

It is my responsibility to pick up on her cues and notice the signs that things are stressing her.

Perhaps I can learn from this powerful image and prevent her being so overwhelmed before we reach that point of freezing again.

Secondly I took the picture that day because seeing her on that floor while the whole world carried on made me realise something so important: sometimes we forgot that in the busyness of our lives others are struggling right in front of us.

While I kept a close eye on my daughter that day my eyes were suddenly opened to the elderly man who was sitting alone having a coffee and the young mum struggling out of the nearby lift with two small children.

From the look on their faces and their body language they both looked like it was all a bit much for them that day too.

I vowed then and there never to be too busy to not notice when others are struggling right in front of me.

Once home I showed my daughter the photograph I had taken and asked if I could use it on this blog. ‘Yes’, she said ‘but tell people I am ok now. It was all a bit much but it gets better.’

My daughter realised she had sensory overload. Things had built up so much that morning that she needed time out. It happens to everyone sometimes.

Take time to sit alone in life. It is nothing to be ashamed of.

A little time out is something we all need now and again.

Perhaps someone will even sit beside you and support you though it too. I really hope so.

No-one should be alone when it all gets a bit too much in life.