The Forever Fear #Epilepsy

I doubt there is a parent out there who doesn’t recall the fear associated with the first year of their baby’s life, due to the heightened risk of cot death. The sense of relief at the first birthday party you are secretly rejoicing in the significantly reduced risk of this terrifying prospect. I recall it vividly with my eldest.

Sleeping

A little known, or publicised, fact is that for those with epilepsy the risk is ongoing. According to the Lullaby Trust, 0.27 babies in 1000 are affected by cot death compared with 1 person in every 1000 people with epilepsy, who are affected by SUDEP – Sudden Death in Epilepsy. SUDEP is often unexplained and it is a devastating and complete shock for the families affected. (More info can be found at http://www.sudep.org).

GG is now 7 and this fear haunts us daily. Diagnosed with epilepsy at 2 years old, GG has tonic clonic seizures, which historically have been the most dangerous although thankfully, the least common. GG also has absence seizures which affect her day to day and sleep seizures which happen several times a week as she sleeps, often several times a night.

We take every precaution possible. GG is medicated, she is on a video monitor overnight that is inches from my nose and that I check at regular intervals through the night. We have a bed mat – not dissimilar to those used by parents in the first year of a child’s life, that is designed to detect seizure activity. We do not 100% trust the mat it, however we do like the back up.

During the day, GG is never out of the sight of an adult armed with emergency medication, in case of a seizure. Fortunately, the need to intervene has become less and less common, as we have tested and improved the balance of medication. GG is able to live a full and active lifestyle – she embraces each day with a huge smile and a belly full of laughs.

GGs epilepsy is part of a wider, undiagnosed, genetic condition. GG is known as a Swan (Syndromes without a name). GG also has a severe learning disability, hypermobility, low tone, squints and the list goes on. Of all of these conditions, it is the epilepsy which is by far the most concerning. We are fortunate that medication has significantly reduced the tonic clonic seizures,  and although day to day management of the challenges associated with learning disability have become more impactful, it is the epilepsy that keeps me awake at night.

Before GG I would have wrongly assumed that there would be help for families in this position. I would have assumed that pediatricians and neurologists would have been helping families to understand and manage the risk of epilepsy and SUDEP. I imagined a world where parents would access overnight support so that, just occasionally, they might sleep without needing to have one eye on a monitor. In reality none of this is the case and we, like many parents, are left to handle this alone.

We certainly hope that GGs epilepsy remains stable in the coming years. We are well aware that all can change with the onset of puberty and we will cross that bridge when we get to it. However we live with the ongoing fear of SUDEP as do so many people with epilepsy and their families. It is clear that SUDEP needs to be discussed, awareness must be raised and an open dialogue held between medical professionals and their patients. Much more research needs to be done to understand the causes, reduce the risk and ultimately aim to prevent SUDEP and its’ devastating impact.

My Crossroads as a Parent Carer #IWD2018

Crossroads

I am at a crossroads and my day of decision making ironically falls on International Women’s Day 2018. The gap between pay and opportunity for women is well documented, however there is little profile given to the additional impact of caring responsibilities – which statistically falls more to women than to men.

As a Mum, it is a challenge to balance career ambitions with home life – this becomes much harder when one or more of your children has disabilities. It seems to be expected, as Mum to a disabled child, that you don’t work. We are at the beck and call of professionals who inevitably work 9-5pm and need us to be available to them. The paperwork and diary management required is a full-time job. Most importantly GG needs me at home, more than the other two and this is becoming more evident as they grow older – two are becoming less dependent as one is becoming more so.

My employers have been very supportive of me – I have worked for them for more than a decade so they knew the pre-mum version of me. I continued to work at pace after GGs older sister was born and even went back full time after GG, although it didn’t last very long. After GGs younger brother was born I settled on 4 days a week and am incredibly fortunate to have been offered support and flexibility (in return for a lot of hard work), which has allowed me to be one of a rare breed – a Mum with a disabled child who has continued to progress my career.

However, the next logical step is the big one. The next role is the one that I have dreamt of since the start and it is – professionally – within my grasp. From a home life perspective it is a very different picture. I am at a crossroads.

In the last 12 months, we have moved 200 miles for a different lifestyle. I have continued to work in a demanding high profile role – in fact, I have been covering 2 challenging roles whilst (in theory) working 3 days a week. I have however been at home more. I have been there for more of the school runs, the after-school activities, attended the assemblies and school plays. I have travelled a lot, been away more than I have enjoyed, and GG has struggled with that (despite my fabulous parents covering in my absence).

Here is the crux of the issue. I haven’t quite given up on the ‘ambitious me’ that wants the top job. I am genuinely not money motivated, but I love what I do and know that I make a positive difference. I have worked really hard to get this far and it is so hard to walk away from it. However, the ‘home me’ knows that it is not the right decision for me or the family. I need a career that I can still enjoy but balance with the extra high needs of my family.

I cannot help but ponder how this could be different though. The constant battle to get what GG needs is all consuming. In a theoretical world, where there was a co-ordinated approach to provision for a child with additional needs, the burden on the parent carer would be so much less. In the first two months of this year alone we have battled through a social care assessment, we continue to fight for the right provision in GGs EHCP (Education, Health and Care Plan) and applied for and then (successfully) appealed for a blue badge.

In a co-ordinated world, I wouldn’t have had to spend hours justifying GGs needs over and over to different professionals. The provision could be based on one core assessment leaving us to focus on meeting GGs needs elsewhere. We have also attended 5 hospital appointments – one of which was a day admission – and completed a significant medication change. All of this comes on top of managing a child who has much greater needs at home which we just absorb into our lives.

I will not give up on my career – it is too important to me. I have plans and aspirations and slowly I am starting to let go of my previous dreams – to replace them with new ones. GG brings immense joy to me, my family and a lot of other people, so I will be focusing my skills on making the world a better place for all those who are disadvantaged – and helping the rest of the world to see how beautiful it can be. The holy grail of an inclusive society.

I do still want to scream from the rooftops about it not being fair but I know it won’t actually help. Instead I will focus my efforts on trying to get the voice of parent carers heard among the millions shouting for equality on International Women’s Day.

#LIVING WITH LD – Snow Days

fruit-3074848__340There are a plethora of memes across Facebook at the moment depicting the idyllic view of a snowday, families building a snowman, having a snowball fight and sledging making for a day full of fun. For most people, the reality is very different and it certainly has been for us.

Our children have very different reactions to news of a snowday. Once our eldest had been reassured that she would not be missing out on swimming at school, the prospect of a day or two at home was celebrated. As for our youngest, he was outside building a snowman before he had swallowed the last mouthful of porridge!

For GG it was a much more stressful experience. We had talked about snow and not being able to go to school but GG works in certainties. Routines are very important to GG and being told suddenly, midweek, that the normal school routine was disrupted was a tough message and it took a good hour of constant questions for GG to understand that she was not going to school.

Despite the bitter winds, the other two braved the outdoors for a good part of the morning. GG all wrapped up, lasted less than 5 minutes – it is hard enough walking through snow, so being unsteady on your feet makes it almost impossible. However, GG has thoroughly enjoyed watching our 6 month old puppies bounding around like lambs, and loves helping to dry them off when they finally decide to come back in.

winter-1861704_960_720 snow.jpg

For most kids, one of the positives is being allowed to watch TV or a film – particularly if like us, there are two parents trying to work from home! GG has never engaged with TV except for the odd episode of Mr Tumble. For GG, the iPad is her time out as she watches snatches of YouTube videos of babies and toddlers. Her current obsession is watching birthday parties for 1-3 year olds and she happily joins in a chorus of ‘Happy birthday’! The iPad has been GG’s saviour for the past two days.

The toughest part for GG is not knowing what will happen tomorrow. The continual ‘where me go tomorrow’ is part of our everyday. Even when the answer is certain and welcomed – for example, a clear answer of ‘GG go school tomorrow’ – GG asks over and over the same thing. Options are not helpful for GG so an answer of ‘maybe school or maybe stay home if more snow’ is anxiety inducing. We have tried hard to reassure her as we cannot give a definite answer – even putting out two lots of clothes ready for morning, to demonstrate the point.

We have had a few lovely moments today with a game of boccia (a type of sitting down indoor bowls), all 3 kids trying to peel mushrooms for dinner was a rather wonderful / stressful 10 minutes and there have been snippets of sibling harmony when all of the sofa cushions were used to build a DIY soft play! However overall, GG has had a much tougher couple of days than her siblings and this is something we need to try and improve on in the future.

I have taken lots of photos of our house and garden in the snow. Some pictures of the kids over the past two days so that in the future I can build a social story based on a real life example that will hopefully help us to prepare GG for future snow days.

In the meantime we will keep our fingers crossed that the snow stops, the wind dies down and GG can return to her normal routine ASAP.

Note: #LivingwithLD is a blog series about living with a daughter with a severe learning disability as part of an undiagnosed genetic condition. The series focuses on raising awareness of the challenges and joys of living in a household which embraces learning disability.