We Dared to Hope #Epilepsy

Epilepsy pic

GG was just 2 and a half when diagnosed with epilepsy. After a number of terrifying seizures, the EEG which was supposed to last for 24 hours, was over within an hour – they had seen enough. Our fears were proven, and our beautiful girl had a range of epileptic activity going on plus the addition of a rare brainwave pattern.

I can only describe the following months as being in a bubble. We did not take our eyes off our gorgeous GG who plodded on with life as if nothing different had happened. We spent our nights watching the video monitor, we spent a fortune on alarms and we trialled various new medications in our bid to stop this monster taking our over GG’s life. We stayed near to home, researched hospitals before we would travel, babysitters were hard to come by and we were always, forever watchful.

It took time, but we came out of the haze, we stabilised on medication that seemed to work and we focused on the some of the positives in life. GG continued to have the odd seizure, usually related to illness and a one off. Absence seizures and sleep seizures were a continual companion but in light of the threat of the ‘big ones’ (as they became known), they didn’t stop GG, and by default the rest of the family, from living life.

The summer that GG was 5, things changed again. Two clusters of seizures overnight resulted in yet more medication, more night time vigils and the introduction of emergency medication to be administered at home. This change involved everyone who helped look after GG, being trained to administer the meds. We took it in our stride, made the adjustments needed and carried on.

Over the next couple of years, we dared to hope that the epilepsy had subsided – maybe even gone forever, who knew! We continued to manage the absence and night time seizures but even through some nasty illnesses, the ‘big seizures’ did not re-appear. We even removed one of the epilepsy meds due to side effects, we took the emergency meds away – we hadn’t needed them in 2 years. We still watched GG on a video monitor at night and the alarms were always in place, but they never sounded. We dared to hope.

In fact, we even dared to take a flight on holiday earlier this year – our first in 6 years. We dared, as GGs parents, to take a much needed and long-awaited weekend away to celebrate a big birthday – leaving GG and her siblings with grandparents, safe in the knowledge all would be well. It hardly bares thinking about but just a week ago, we dared to climb a big hill, it was tough – we carried GG for parts, carried her buggy for others but we did it – a major and exhilarating milestone as a family. I can hardly breathe when I think about how far away we were from any medical help.

Then it struck again. A familiar activity in our family, watching the eldest swim in a gala. A straightforward family afternoon, which ended in hospital. A seizure, out of the blue, on the side of the pool. A further 7 within the next terrifying and heart-breaking 90 minutes. An ambulance ride, so many tests, an overnight stay without even any PJs. Our poor baby, attacked by this monster again and so brave and yet so confused by what has happened. The siblings left with grandparents so scared by what they have seen.

We are back home and back in the haze. Re-evaluating how we operate as a family. High alert status is resumed – especially as we increase the daily medications. GG is never out of our sight, we sleep next to her at night. Emergency meds are with us, everywhere we go. Always thinking about access to the nearest hospital. Cancelling all work plans to travel. The realisation that the planned holiday for February needs to be re-thought. GG’s long fought independence – the simplicity of playing in her room or out in the garden is curtailed. No more climbing hills in the middle of nowhere. But most of all the constant fear, the never knowing when it will hit again, but knowing for sure that we will never dare to hope again.

#LivingwithLD – Living Our Lives on Replay

fruit-3074848__340

This is the first in a planned series of blogs #LivingwithLD about life with a daughter with a severe learning disability, which is 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.

Living Our Lives on Replay

A typical morning in our household starts with GG before she has even been helped out of her sleeping bag asking….

GG – ‘Me school today’

Me – ‘Yes, GG school today’

GG – (Signing Monday / general hand flapping) – ‘Monday, me go school’

Me – ‘Yes GG, it’s Monday and you are going to school’

GG – ‘Daddy! Me go school today’ (Imagine high pitched, excited, squeaky voice)

GG’s Dad – ‘Yes GG, it’s school today’

GG – ‘Daddy, Monday, me go school’

GG’s Dad – ‘Yes, it is Monday so you will go to school’

GG – ‘Me dressed’

Me – ‘Yes, it is time to get dressed’

GG – ‘Me get dressed, me dinner (breakfast in GG’s world)

Me – ‘Yes, let’s get dressed and go for breakfast’

GG – ‘Me breakfast, me clean teeth’

Me – ‘Yes after breakfast, we will clean your teeth’

GG – ‘Me teeth, me hair’

Me – ‘Yes, after your teeth we will brush your hair’

GG – ‘Me hair, me iPad’

Me – ‘Of course you can have your iPad while I brush your hair’

GG – ‘Me iPad, Daddy me shoes’

Me – ‘Daddy will help you put your shoes on’

GG – ‘Me shoes, me coat’

Me – ‘After shoes we will help you get your coat on’

GG – ‘Me coat, me white bus’

Me – ‘That’s right, the white bus will come for you – shall we get dressed now’

GG – ‘Me dressed, me dinner’ AND REPEAT! REPEAT! REPEAT!

This constant running through of the morning will happen 20+ times every morning – over and over for more than an hour, only pausing when she has her beloved iPad and baby videos to watch. No-one else can get a word in and we have become skilled at conducting this never-ending conversation, whilst also chatting to / giving the usual morning routine instructions to GG’s siblings.

However, we know that not listening or replying will fuel GG’s anxiety and this repetition is part of her coping strategy. She needs to know what is coming next and needs almost continual reassurance of what to expect. We have tried ‘now and next’ boards, distraction and pre-empting the run through by talking it through first, but nothing seems to provide the same level of comfort as GG verbalising it for herself.

In the early days when classed as ‘developmentally delayed’ and the future was so uncertain, we would have been absolutely thrilled to glimpse a future in which GG could communicate. GGs speech is still unclear and to those who do not know her well, you would not understand all that she is trying to say but we know, we hear it over and over again.

We will always celebrate GG’s communication abilities and be forever grateful that she has developed these skills, but living our lives on replay does at times test our patience to the max. #livingwithLD.

WHY MY MOBILE CHILD NEEDS A BLUE BADGE

blue badge pic

There has been a great deal of discussion over the past week around the consultation on blue badge provision for those with hidden disabilities. This is very topical for us as we are currently appealing the decision to not award a renewal of GG’s blue badge. I resisted the temptation to immediately jump into the discussion and instead opted to track how and why the blue badge is important for GG.

GG does have physical disabilities including low tone, hypermobility, a discrepancy in leg length and some dodgy bone alignments, although she is mobile and can walk short distances. GG does need help to get into the car and be safely strapped in. However the need for a blue badge is driven equally as much by her hidden disabilities – as I hope to explain by giving you an overview of the past week.

Thursday after school: GG arrived home from school and was having a tough day. We immediately needed to jump into the car to collect big sister from her after school club. I carried GG to the car and lifted her into the car seat (all 24kg!) and gave GG her blankie and an apple for comfort. We drove to school to find the blue badge space occupied by a non blue badge user. I parked further away – knowing that getting GG and her younger brother out of the car to go and collect her sister would be even more stressful. Instead I dashed over and asked another Mum to send big sister over to me, which she kindly did. Had I been able to access the blue badge space, I would have been directly outside for big sister and would not have had to leave GG unattended whilst distressed (even for the shortest of times).

Saturday morning: We attended a session for children with special needs at a Children’s Centre. The blue badge spaces are c. 200m from the door to the centre. GG was doing okay so, with support, I helped her out of the car and we walked round. GG had a lovely time but unfortunately hates leaving, she refused point blank to walk back to the car. I left her and younger brother with a member of staff whilst I ran to get GG’s specialist buggy which I loaded her into, and then transferred her to the car. In a normal parking space this would result in a number of issues – not being able to wheel GG’s buggy to the car door so I would have to carry her from the rear of the car, and also not being able to open the door wide enough to lift GG in.

Saturday afternoon: We stopped for lunch at a garden centre. Unfortunately they had no mashed potato which is GG’s staple diet when we are out. This resulted in a lot of distress for GG and despite having walked in quite happily, I had to carry her back to the car. Without the blue badge I would have had to carry her much further and also relied on big sister to make sure her younger brother was safe across the car park. GG was not co-operating so getting her into her car seat was a battle and without the extra space at the sides would have been impossible. Even had GG walked she has very limited safety awareness so my attention has to be 100% on keeping her safe in a car park.

Sunday afternoon: Younger brother had a party at soft play. GG was really tired and so I used the buggy to transport her in and out of the session. She sat playing with the babies, only going up to the big slide with her Dad’s help. There is no blue badge parking at this play centre (I have asked why) but I was fortunate to get an end space, with enough space to pull the buggy up alongside.

Monday evening: Swimming lesson night! GG loves the water but comes out shattered. GG completely refused to put her boots back on (after a battle to shower, get dried and dressed). Once again I carried her, shoeless this time, back to the car and lifted her into her car seat. Being right next to the entrance was much needed as I hauled swim bags x 3 plus 2 tired kids outside, whilst carrying a non-co-operative GG.

Tuesday evening: Big sister’s hockey training night. Again GG did not want to leave the house after school, so she was placated with a bag of crisps and her blankie, and carried to the car. Getting her out again to drop her sister off would have added to her distress, so being able to pull into the blue badge space nearest the pitch meant I could wave big sister off without needing to – a massive bonus.

So as you can see, almost daily – even on a school week, the blue badge really helps to make life a little easier. In the school holidays we would be much less able to get out without it.

There are a a couple of questions I have been asked that I also think are worth addressing.

Are GG’s needs more than those of a toddler? GG is like a young toddler in a (tall) 7 year old’s body. Having had 3 children, I have faced the challenge of not being able to open a car door sufficiently to help a young child into a car seat. However there are always other options – I (like many) have lifted a baby in through the car window. I have helped a toddler clamber through from the front seat and leaned through to the back to secure the seatbelt. With GG, I cannot use these methods and my only option is to put her in the buggy, on a safe pavement and move my car to somewhere we have space. GG doesn’t understand what is happening and thinks I am driving away without her – it is so stressful for her and an absolute last resort.

What if there are not enough blue badge spaces? I have a lot of sympathy with this argument but if for example, there were not enough hospital beds for those needing one would we argue that some people didn’t get one, or would we fight for more spaces? If more spaces are needed then let’s make sure they are provided.

I hope that this has given you an insight into our life and how a blue badge has made a significant positive impact. As you have read, a blue badge is really important when you have a child who has behaviour challenges due to a learning disability, which often results in carrying and lifting to the car. It is important to a child who cannot manage long distances and tires easily, so still needs use of a specialist buggy. It is important to me when I need space to lift an older child into a car seat, because they physically can’t or won’t co-operate with you. Both the physical and hidden disabilities justify the need.

I would welcome your support on the consultation which can be found here: https://www.smartsurvey.co.uk/s/R2OF6/

 

Flash Forward To GG’s Future

party-146582_1280.pngRecently, I was lucky  to enjoy a rare girl’s weekend away for a family birthday celebration, a couple of days of freedom! The venue was an over-18s which was a new experience for me – it felt strange not to have children around, but an experience I was happy to embrace.

After a huge amount of organisation to ensure things ran smoothly in my absence, and having stayed at home to help with the (always challenging) bedtime routine, I missed dinner and arrived part way through the evening entertainment. After grabbing a glass of wine, I immediately noted that the majority of guests were of pensionable age and proceeded to have a good giggle about being the ‘youngsters’ in the room. However, there was one notable exception to the sea of grey hair, which I picked up on over the course of the evening – there was a much higher than usual representation of adults with disabilities.

The Fabulous Dancing Lady

By 11PM the disco had started and our group was up on our feet, making the most of the opportunity to dance. We were beaten to the dance floor by only one individual – a beautiful lady, younger than us, who had no inhibitions and was literally having a ball, strutting her stuff. I suddenly had a ‘flash forward’ into a possible future life for GG – there were so many similarities despite the difference in age. Over the two days, this lovely lady became our dancing companion. There is no doubt that we all let our hair down more than usual, thanks to her fabulous ‘give it your all’ approach to dancing. I haven’t laughed so much in years!

Mum-Watching

I also spent some time observing her mum. A tired but happy looking elegant lady who was never far away, but obviously comfortable enough to sit and relax while her daughter was having fun. I also noted the regular prompts to have a drink, I saw at dinner the support needed to choose and order a meal, the accompanied trips to the loo and I watched as Mum spotted the signs of tiredness, and gently encouraged her daughter to call it a night. I saw the constant ‘watching eye’ to ensure her daughter was safe and not disrupting other guests but most of all, I saw a mother and daughter enjoying a weekend away together.

roadsign-2570954_1920 (1)A positive picture of the future

I observed all of this and I didn’t feel sad or worried – I felt hope for a future that maybe ours. A future in which there will be leisure opportunities, weekend breaks, dancing, laughter and acceptance into a community. A safe place to go with a grown-up GG which is otherwise difficult to imagine (outside of specialist provision). I have always feared thinking about the future but now, I am more positive. I hope that we will be equally as happy as my lovely dancing partner and her mum.

The Guilt of Respite

faced-with-guilt-2126526__340

For the first time today, I used the 5 hours that GG was in holiday club to go out with my other two children (and not for me to work). We were all excited  – although tried to not show that in front of GG. It was a 5 precious hours that we chose to spend outdoors, exploring the beautiful local countryside and walking the puppies. It was a glorious day and we had a great time.

In all honesty, I did not miss the screeching, the stressing over whether GG will drink and her refusal to use an unfamiliar toilet. Hauling the buggy in and out of the car and not being able to get in and out of the tea shop were welcome upsides.

I absolutely loved being able to dawdle and explore, GG hates being still in her buggy so stopping is never an option. We visited the Birds of Prey Centre where GG would have struggled with the noise. We enjoyed the simple pleasure of being able to run through the woods with the dogs, and for me being able to watch the others on the climbing frame, without having to join in to help GG around.

GG on the other hand had a lovely day out. Along with some of her school friends, she came home full of smiles, an empty lunchbox and keen to go back again tomorrow.

Perfect you would think so why do I feel so guilty. It is because I missed GG’s smile as much as I missed her screeches. I missed her giggles as much as I missed the inevitable tears. I missed the simple pleasure GG takes in a cheese sandwich whilst my others devoured lunch without a thought.

It felt like we were incomplete as much as it felt a relief to have a fun day without the additional challenges. Every photo I took was missing something. Perhaps in time I will come to accept this new phase in our lives. I know how much we all need some time out, GG’s siblings in particular, but I wish with all my heart that it didn’t have to be like this.

2017 GG’s Best Year Yet!

new-years-eve-2435628__340

The past year has been a whirlwind  with significant changes in our lives and for GG it has, without doubt, been her best year yet.

The Big Move…

The big news of course was the house move, 200 miles from all that GG had ever known, to our new life in the country. The move has proven to be the best thing we could have done. We have the space for all that GG benefits from – a ball pool in her Peppa Pig bedroom, enough room to (clumsily) push her baby’s pushchair around the house and space to play away from her noisy younger brother. The outdoor space is even better and the investment in a sunken trampoline that GG can access without support has given her a new level of freedom.

The New School….

With the move has come a new school where GG has settled incredibly well. Described as the ‘mother hen’ in her classroom, GG has developed friendships and has made progress beyond our expectations. Her annual review started with ‘What do we like and admire about GG’ – it was an uplifting and positive experience, no longer fighting for her every need but surrounded by a team who could not be more helpful.

GG’s Busy Social Life….

The social opportunities have expanded as well – we have managed to replicate horse riding, swimming and Brownies and GG has adapted well. The addition of a local boccia group which her siblings join in too represents truly inclusive sports. Holiday club options have also worked well with GG happy to get on the bus with her packed lunch. Our precious girl has such a busy social calendar!

GG’s Love of Animals….

We have extended our repertoire of animals – GG still loves her daily Guinea Pig cuddles and is as excited as the day we first had them. The addition of an outdoor cat has had limited impact, however the 2 puppies we bought home in November have enhanced GG’s life beyond all of our expectations. There is no longer a fight over getting dressed in the morning as she is so keen to make it downstairs to see the ‘woofs’. The smile on her face as they welcome her makes all of the extra work worthwhile.

On the Health Front…

Medically 2017 was a relatively stable year, discharged from cardiology, better results from the eye tests, only a couple of UTIs and a subsequent scan showing no significant issues. Appointments with many other teams but none too worrying. Most of all GG’s epilepsy has improved – it is still there and we continue to sleep with one eye on her video monitor – however we have even removed one of her medications with no impact. We could not be more delighted and we hope we will see an improvement in concentration and behaviours as a result.

GG’s Major Achievements…

In addition to taking major changes in her stride throughout the year, in the last 2 months of 2017, GG had her art work displayed at a local show, coped with going on stage to receive donations on behalf of her holiday club, and most importantly leapt an astonishing 1 year and 4 months forward on the assessment of the level of her understanding. GG has also started to sing which delights her and all those around her. There is no doubt that 2017 was GG’s best year yet.

As we move into 2018….

We are so excited about what GG can achieve. Our focus on improving some of the challenging behaviours will continue. The EHCP transfer will no doubt prove a challenge, and just maybe 2018 will the year of the diagnosis for our gorgeous SWAN as we await results from the 100,000 Genomes study. Let’s hope 2018 will prove to be even better.

Five Things I Would Change

Five Things I Would Change…..

1. This maybe controversial as I know many parents who would not change their child for the world. I would not be without GG for the world, she and her siblings are my everything. However I would fix GG if I could. The core of GG, would 100% still be her, she has a very strong personality! However I would take away the pain and challenges she faces every day.

2. The attitude of others, towards those of us trying to lead a typical family life with a disabled child. It’s not easy, so you staring and tut-ting is really not helping. We should be able to go out for the day or enjoy a meal – offer help instead of judgement.

3. The assumption that parents of children with disabilities do not, or should not work. We are a growing army of working parent carers, it is good for us, good for society and definitely good for our children when we can make it work. However it does mean that I am not at your beck and call, for appointments and I cannot conjure up a fancy dress costume in 48 hours!

4. The crazy inconsistencies between provision in different local authorities / NHS Trusts. It is a postcode lottery as to whether you have access to, or qualify for, much needed support and to not have a standard offering to children with disabilities is beyond ridiculous.

5. Professionals treating us like amateurs when we are experts in our children. We are their voice so please listen and treat us with respect.

 

 

‘Prove’ to me that your daughter is disabled

question-2309042_1920

Sadly, it seems that this is what the world has come to. A simple day trip spoilt by me needing to justify our need for a little bit of extra help.

I was brave and for the first time attempted a day out with my 3 children  – on my own. This may not sound like a big deal to many, however with a learning disabled child in the mix, as well as a toddler, getting out without help is not easy to do. I did it though and we went to a well known attraction on the coast, which advertised itself as ‘fully disabled accessible’.

The day started well, we left home without too may traumas, we arrived in good time with everyone in good spirits and the morning passed with little to comment on, (excepting the usual activities – GG crawling around the floor during one talk and the high pitched shrieking at the appearance of sun lotion).

The venue turned out to be a maze and with no automatic doors (aahh) I found myself battling against the crowds with GG in her buggy screeching for lunch. Trying to navigate to the restaurant was a nightmare, having discovered that the usual access was up a flight of stairs. A kindly member of staff spotted my dilemma and assisted us to the restaurant – guiding us right back to the start to find the lift. Not a great experience, but we made it.

I had prepared for this bit as I knew lunch would not be do-able on my own. GG is incredibly demanding around food (she takes after her mother!)  and without a doubt, the minute food arrives, someone needs the loo and chaos reigns. My sister was awaiting my text to come and join us to help me manage the most difficult part of the day. However completely unexpectedly (and unreasonably) they wouldn’t let her in….

You can picture the scene, GG has screeched until food arrived being in an unfamiliar place and being unclear on where food would come from. Food arrives and toddler announces he needs a wee – quickly mummy! The toilets are back downstairs and through the shop. At this point, my sister is explaining politely the situation and still being refused entry – despite wanting to buy lunch from the restaurant.

In an impossible position, I dash downstairs, quick trip to the loo and explain frantically to a member of staff that I really need my sister to come in. The manager appears and I cannot convey how furious / upset she left me. In the middle of a mini-crisis with my girls being upstairs without an adult, she asks me to prove that my daughter is disabled….the people in the lengthy shop queue are all staring now. My son is looking at me questioningly.

I have already explained that my daughter uses a specialist buggy  and has a learning disability. I have offered for the manager to come and see, given she is sat just upstairs in the restaurant. However, I am told in no uncertain terms that they cannot allow ‘just anybody’ into the restaurant unless they can prove they are pregnant, disabled or a carer – which my sister clearly was in this situation. I was told I needed to go and get my blue badge from the car as ‘proof’. I was speechless. Her staff were visibly embarrassed.

I ran back upstairs, toddler in tow to my amazing 9 year old who was, as always, doing way more than any 9 year old should. To the gorgeous GG who fortunately was oblivious, tucking into her lunch with gusto. My sister determined to help me out, took a photo of the blue badge through the car windscreen and without hesitation, an apologetic member of staff allowed her in to join us – the manager had disappeared from sight.

It seems to be an increasing trend that disabled people and their carers are thought to be taking advantage of the ‘benefits’ available. Whether it be the dreadful PiP process that demeans disabled people and accuses them of scrounging off the state, or stories of disabled people in the workplace being told that ‘reasonable’ adjustments to enable them to work to the best of their ability are in fact ‘unreasonable’. This was just another example of being treated unfairly and quite frankly, inhumanely.

We went on to enjoy the rest of the day, we even managed half an hour on the beach in the sun, but needless to say, it certainly diminished the pleasure of having ventured out on my own.

Note: I have not named the tourist attraction we visited however I will be sharing this blog with them privately, and offering support with staff training.

Spectrum Sunday

EMPLOY A CARER – WE ARE WORTH IT!

carers week

To employers of all shapes and sizes, all sectors and markets, employing a carer can be a fantastic step for your organisation. Your success is based on good people and that is why you should open your eyes to the potential of employing people in the caring community. It can work for you, I am living proof of that, it just requires a different way of looking at how we work.

Let me tell you a little about me. I am mum to three kids, highly ambitious and was never going to step down in my career when I had a family. Baby no. one arrived and after six months I returned to work, no hassle at all. Then baby no. two arrived and my world turned upside down. GG, my Swan (Syndromes without a Name) remains a conundrum to this day, undiagnosed and nearly 7 years old. Suddenly the tried and tested return to work plan became a mountain to climb.

However, I did it and my employer worked through it with me. 7 years in and I remain in a demanding role, I am valued by the organisation and I manage my caring responsibilities. (I will also point out here that I have a husband, he too does his share, so don’t assume that only mum takes the responsibility).

So how did we, my employer and I, make it work? The answer is flexibility on both sides. I will be totally honest about it, childcare with a disabled child is a nightmare but it is not impossible, hospital appointments are a norm, we have daily therapies to fit in at home, we have to spend more time in school settings than with mainstream children and sometimes our children are hospitalised, and we are unavailable for a period of time. This is the time when we need you most.

I accept this means that you cannot give us sole responsibility for a job that needs a high level of presence. It needs you to think differently. In my role, it works well to have a strong deputy, ready to step in as needed – investing in another employee’s development whilst ensuring business continuity, a win-win situation. I have settled into a working pattern of 3 days a week which allows me to flex my days according to appointments and meetings, but ensuring I have chance in my week to deliver my job to a high standard and with cover in place when I am not there. In reality I am almost always there remotely, frequently taking a quick call or managing emails on a non-working day.

I recognise that I am asking for a lot from an employer and whilst I know I am fortunate to be supported, it is my employer who says they are the lucky ones. I have worked my socks off to demonstrate that I am 100% committed and can make this work. My manager describes me as highly productive, I have no time at home or at work to dither, I get the job done efficiently. Being a carer has taught me a whole host of new skills. A situation that would previously have me in a panic, I deal with in a calm and pragmatic way. When you have watched your child have a seizure, nothing work wise will phase me.

My planning, organisation and negotiation skills have been enhanced beyond recognition – negotiating the early years of the special needs system and the NHS is tough and makes us carers resilient and persistent. I have learnt skills I did not ever consider I would need. I can use sign language, I am a physiotherapist, speech therapist, campaigner, advocate for my child – all of these skills I learnt on my own and fast. Nothing my employer throws at me will phase me, I will find a way to make it happen.

The CV of a carer applying for a job may not be typical of the experience you are looking for but please think beyond the ‘job title’ and look at the skills they have to offer.

I am not alone in being a working carer. My organisation is not the only one to successfully employ carers. However we do remain a minority. Every day I hear carers who are desperate to get back to work – will you give them a chance? I hope so.