Epilepsy Awareness

Parenting A Child With Epilepsy

Parenting A Child With Epilepsy

Parenting is a difficult job – you’re never going to get it perfect. I have become accustom to that feeling. I have two children: a boy who’s 6 and a girl who’s 4. My son was diagnosed with epilepsy at 3 months old. Believe it or not that wasn’t the worst news we had got in the first few months of his life. If anything, we were expecting it! My son had a stroke at birth which caused his epilepsy and was incredibly poorly for the first few months and continues to have periods of time where he is unwell. He has right sided hemiplegia, which means he has a weakness down the right side of his body. He is an incredibly resilient child. I couldn’t be prouder, and although I wouldn’t change him for the world, because of his medical issues we do have to change the way we live our lives. A lot of the time he makes our lives richer and in other ways more of a challenge. I suppose that can be said about any child – we are constantly told that every child is different as parents when trying to raise our children. I wanted to give an honest account of what it is like to parent a child with disabilities. Particularly, on with epilepsy. This blog post is about our live, and I have also created a page for information regarding epilepsy that I have come across over the years.

So, I will start from the beginning. J was born unexpectedly double breach and gave us a particular scare when being born. To cut a long story short, there was a sign of relief when he came, seemingly okay, in to the world. Unbeknownst to us, he had had a stroke, and three days after birth we rushed him into hospital where after a couple of days we were told about the damage the stroke had caused to J brain. We were told by doctors that he would probably not be able to walk or talk as his stroke had affected the occipital parietal region of his brain (the back, left area). We were shown a diagram about where this was and given a rather dreary view of what his future could look like. It didn’t completely sink in straight away. I am glad it didn’t really as this is definitely not the case today. Although J has had trouble walking, he can, albeit he does use a wheelchair and does need constant assistance to be able to walk without falling over. He can also talk when he chooses; he can also sign to make himself known. He is our little miracle. I have never seen a more determined kid when he wants to do something. He will try and try before he asks for help.

 

The reason he is like he is now is down to few different people and organisations. We haven’t done it on our own, we had plenty of help along the road – we were very lucky. Jackson developed torticollis when he was a baby. We were referred very quickly to physical therapy to help him straightened up. We were given the opportunity to have multiple appointment a week and although this was a bit awkward with work we managed to do them. We had these appointment for a few years, covering both his torticollis and the weakness in his arms and legs. They gave us a routine of exercises through play that we did everyday intensely. It sounds rather dramatic and overwhelming when I describe it sometimes, but it gave me the excuse to play with my son for hours everyday whilst knowing that it was doing him a world of good. He loved the sessions most days, although he never really likes new toys and exercises at first. J takes issue with new things and always initially rebels or cowers away. It’s heartbreaking sometimes but totally worth pushing through it. He still continues to have physical and occupational therapy at his school which is great. We don’t have to go to so many appointments outside of school which means he still gets his education.

 

One of the major sources of help was a referral to Bobath. I can’t wax lyrical enough about them. I believe that they were a defining point in my son’s ability to walk. When we went there at 18 months old. He could not support himself, and although a lot of progress was made, he still had a lot of difficulty in using his right sided limbs. Bobath is a referral only charity run therapy centre in Whitchurch, Cardiff, which focuses on child with cerebral palsy. J has not been diagnosed with cerebral palsy but has many of the traits that comes with that diagnosis. To get the opportunity our physical therapy team and doctors had to make an application which went to a panel to decide. We were bowled over when they told us we had been accepted to a course. The course involved an initial meeting to discuss J targets for his therapy and an informal conversation about family support and routine with the family engagement officer.

Bobath Children’s Therapy Centre Wales

Bobath Children’s Therapy Centre Wales provides physiotherapy, occupational therapy and speech and language therapy to children all over Wales who have cerebral palsy. Bobath therapists are state-registered and work together as a team to combine these disciplines to give each child the skills to explore their world, communicate their needs, maximise their potential and so improve their quality of life.

At Bobath Children’s Therapy Centre Wales we focus on the ability and not the disability.

Our mission is ‘to improve the quality of life of children in Wales who have cerebral palsy’.

The amount of care and expertise we were shown was outstanding. It is just a shame that they can only help so many families. Wales is very lucky to have one of these centres. After the initial meeting followed 10 intensive hour long therapy sessions over a period of 20 days. The hour long trip each day was a cheap cost for what we received. Although our local therapy team were good – these are the formula one team of physical therapy. By the end of the 10 sessions J stood up and supported his weight for a few seconds and was getting so much better at using his right side. Like the local regime, we were given a comprehensive list of exercises with photos and instructions of how to focus the exercises using play. It was quite a few months after until Jackson walked a few steps, but we still believe to this day that because of those sessions and the continued regime we followed was the reason that J started to walk and get around.

When I say we were incredibly lucky to the one course, you can imagine how we felt when we received another set of 10 sessions about 16 months later. The focus this time was on using his hand and also his speech. Jackson did not speak words at the time and only made a few vowel sounds. We were given very little help from our local speech therapist who had pretty much told us to wait and that if he didn’t want to try to speak there wasn’t much they could do. The specialist at Bobath did not believe that. She identified one of the reasons why J was finding it hard. We were told that because of his poor muscle tone in his core it was affecting the muscles in his throat and tongue so he didn’t have the strength to get the words or sounds he wanted. She also introduced to sign language to assist his communication. Until then he had just used his eyes and some sounds. It did not happen overnight, but what we learned there laid the foundations of the communication we have with him today. It has made his life, and ours, so much fuller and rich with experience. It used to be so frustrating for us all, mostly J, that we couldn’t communicate the way we wanted to. He still has his moments of mutism but generally he knows how to communicate through a mixture of words, signs and expressions. He still chooses with his eyes quite a bit but he is a million miles away from where the original doctor said we might be. It is not a criticism of the doctor as he was only trying to be realistic. We know now that keeping open minded and hopeful has been a blessing to our family. We live by that mantra as we continue our lives together. Our son’s future is not confined to what we believe he can achieve, but by the endless possibilities he can strive to.

As J got closer to school age we were also given access to portage: a play based therapy to help J get ready for nursery and school. A lovely lady by the name of Maria came to our house once a week. She initially assessed his abilities and we were again given targets to try to reach each week. They would be very simple for most children of J age, but he found them challenging. Whether it be to use a different toy with his weak hand, or to try to draw a circle, they were simple tasks but took some effort by J to master them. We would work together every day in order to try and show off his achievements by the next session. He really loved these sessions and Maria had a lovely way with him which always succeeded in making him smile. It may not seem like much but these types of therapy did wonders for his confidence and self esteem – things really important for children as they grow up. It was sad to end these sessions but one positive aspect of our contact with Maria was that she got us in touch with Y bont. A special needs focused nursery.

 

Y bont is local nursery, which focuses on helping families with children who have special needs. It is only a small charity run nursery but it has been a wonderful place for J to attend. Initially he only went for a day a week, and then everyday as I went back to full time work in a school. He left there this year after 3 years of attending. Needless to say, he absolutely loved every minute of his days there. I know they loved him to. They were very upset when he finally left. I have to say, so was I. A few tears were shed on his last day. He just smiled and waved. He was ready to be the big boy and go to big boy school. They offer such a unique place for children like J. It was a home from home. They are a small charity which means they have to raise a lot of money to ensure they keeping providing the service they offer. I was lucky enough to help by doing an interview for Children In Need a couple of years ago. It was a great experience. I can’t find an official video on the Children In Need website, but we recorded this video on a phone. Apologies for the quality:

They really are a great team, one that I could not leave out when writing this blog. If you want to know more you can visit their site here:

www.ybont.co

Or Facebook page:

https://www.facebook.com/Bridgend.YBont/

You don’t have to, but if you would like to help them out you can donate to them on this link.

DONATE TO HELP Y BONT

J now goes to a special needs school. One that is absolutely perfect for him. He calls it his play school. He gets on the bus everyday with other children like him, all of them with a smile on their face and excited to go to school. It is a wonderful thing to see your child so excited for a day at school. My memories of going to school were far more complex. Even at J’s age.

So, I have given you a little history about J’s short life so far. A lot more has happened than this but I would need to write a book to go through it all. The one thing I haven’t mentioned yet in much detail is epilepsy. It took a few visits and conversations for J to get diagnosed with epilepsy. We noticed J had a continuous twitch in his right arm which would last for periods of 10-20 mins to sometimes over an hour. This would happen throughout the day. Although we were told to watch out for epileptic fits, we didn’t really think this was the sign. We expected the full on seizures where the whole body violently jerks – we did not know that these twitches were fits in themselves. To be honest, the doctors we saw in hospital didn’t seem to think he was having fits either. However, after a few visits and conversations we got to have a specialist come to see J, who at first sight, said yes he is having seizures! It was a very casual expression for him, but for us it was a pivotal moment in the rest of our sons and our lives.

We still have a long way to go, and we have a lot happening over the next twelve months. J has been referred to Great Ormond Street hospital for surgical assessment. He may have brain surgery or he may . It is not something we are looking forward to, but we have some amazing support around us, plus he is a little superstar and takes everything in his stride. I suppose the best thing to say is wait and see. Parenting a child with epilepsy has its worries and we all go through our trials and tribulations about what’s best for our children, however we feel completely blessed to be able to live the life that we do. It is rich and fulfilling, with so many amazing memories made already. It has taught us not to take for granted the milestones that others might. The first step our son took wasn’t just a milestone – it was a miracle that we were told wouldn’t happen. The first time he used a cup to drink bowled us away. These events are seared deep into our hearts and minds. We are constantly reminded of how resilient children are and how determined they can be to overcome adversity. Whenever I am going through hardship or challenges of any sort I remind myself of this and it helps me to push through and try to overcome them.

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Daddies Space

The Digital Daddy Club

The Digital Daddy Clubimage

The Digital Daddy Club has opened and is available for all daddies who are looking to up skill and either change to the direction of their career, change jobs to fix that work life balance, get back into work, or you’re just looking for that change. Go to our facebook page and join the group.

I have worked for Daddyjobs.co.uk since the start of September. I am a stay at home dad of two children, and that is a demanding job in itself, but that isn’t the whole of my life. It is just one aspect that enriches the life that I live. I truly believe that the role of ‘Dad’ has changed since my father and grandfather and so on.In fact according to an article in the Guardian there are indications that there are as many as 10 times more stay-at-home dads in the UK than there were a decade ago. This figure is not completely fact – it is an estimation from research completed by the Office for National Statistics. Accurate or not, it still shows that we are a growing breed.

The long established view of the stay-at-home mum is shifting to a more shared approach which has seen more dads reduce the hours of their work in order to share or take some of the responsibility of looking after our children. Hand on heart, I am proud to be part of this growing community of fathers. It is not all sweetness and roses, sometimes as we all know, being a parent can be a difficult job, and whether you’re a stay-at-home dad or mum, isolation, frustration and loneliness can be difficult to manage. That’s even forgetting the other mum/dad jobs we have looking after the house. It’s like running a mini multinational sometimes…I do have a penchant for the melodramatic occasionally.

 

Some of the facts..

 

It is not all gloom and doom though – us dads are supposedly a happy bunch. 75% of us feel lucky to able to look after the children. The study behind the Guardian article also revealed a number of emotive responses from role-reversing parents:

Of women who are the main breadwinner:

  • Four in 10 (37%) feel guilty going out to work and leaving their children
  • One in seven (15%) say they occasionally resent their partner because they have to go out to work
  • Although fewer than one in 10 (9%) say they’d actually want to swap places with their partner to be the stay-at-home parent.

Whereas men who are the stay-at-home parents say:

  • Three quarters (75%) feel lucky to be spending time with their children
  • Around a third (29%) find looking after children more rewarding than going out to work
  • Although one in 10 (10%) say looking after children makes them feel “less of a man”
  • And one in five (17%) wish they earned more so they could go out to work while their partner cared for the children.

Interestingly, I agree! I am lucky to be a stay at home dad. However, figures can also be misleading and not give the real picture. That’s another reason why we have started this. Whether you’re male or female; mum or dad, you own your own story and life – it is unique to you and as individual as your fingerprint. One of the things I have learnt since becoming a dad, a blogger, a work from homer….a grown up! Is that it is important to share knowledge and experience with people in similar situations; to find different ways of tackling situations and ideas. A lot of mums (not all) are good at this, it is one of the crucial skills that I think women are better at than men – communication. It enables them to communicate their emotions, troubles and share knowledge easily. I see it at the school gate: groups of mums gossiping away everything that is going on in their lives. It is not all gossiping though. They are sharing their stories and ideas about their kids, reaffirming their own thoughts and fears about what they’re doing. It may seem trivial, but it really is ‘good to talk’. It’s not all men though.

As I said, we are a growing breed. Like any new adventurers striding into the unknown, we take a few stumbles and go in a couple of wildly fun ‘scenic routes’. We are quick learners and problem solvers. We can be pragmatic and goal driven. These are all skills that we can use in the stay-at-home dad role. I’ve seen so many great dad blogs out there that give great advice and give honest and open stories about being the main caregiver, and what the highs and lows of that life can be. Being a stay-at-home dad does not have to mean you’re less of a man. It means we need to change the perception of what being a man means.

When the job don’t fit…

One of the reasons I am a stay at home dad is because the job I was in no longer fitted around the term time hours. It is hard finding a job as a dad that has to look after the kids. When mums have said that looking after the kids was a full time job. They weren’t kidding. I think we knew that already to be honest. Most dads aren’t knuckle dragging troglodytes, in fact most of us knew the lengths to which our mothers went to look after us. It is why we are perfectly capable of doing this job, and why more and more of us are doing it. Like many mums before us, being the stay-at-home dad doesn’t confine us to a life of nappies, cleaning and food. It is important that we look after our own health and mental well being. I went through a period of adjustment the first time I did the stay-at-home dad job with my son and daughter. It took me nine months…and then I went back to work. Doing the stay-at-home job again is much better this time. I know more about what to expect and what to avoid. I now keep myself busy by blogging and working from home; keeping healthy and exercising, and making sure I keep the social life going. It is a juggling act which can be a bit heavy at times, but it is not unmanageable – it just takes a little effort …but for a big pay off.

Community

The Digital Daddy Club is a community connected via the Daddyjobs.co.uk website that we want dads to join because we know it important to connect and share experiences.

We want to make that work/life balance right for parents. Dads and mums deserve to be able to work together and have opportunities that fit around their life, and not have to fit their life around their work.

We want to give you the space to share experiences and advice, not just around jobs, but around every aspect of your lives. As much as you want to. Our ambition is to make it easier for parents to live a full life without having to sacrifice the important parts.

We will give opportunities for flexible/part time/ work from home jobs; training options and CV consultation, but most importantly the feeling of being able to control your life. Yes, queue inspirational music to that last sentence, but we really mean it.

The whole reason we started our sites and digital parent clubs is to try to change the landscape for parents who find it difficult to keep up with demands of modern day life. It shouldn’t be a case of if you can beat them join them. It should be if you can’t beat them, change their viewpoint, change the arena, change their minds.

Join the club…

Please visit the facebook page, twitter or our daddyjobs community. We’d love to hear from you, read your blogs and hear your stories.

If you’re a mum and you’re reading this, we haven’t forgotten about the mums. You can connect with our mums on our facebook page, twitter and www.mummyjobs.co.uk

Homework Welsh Cakes

Homework Welsh Cakes

My son goes to a fantastic school which specialises in special needs education. They make sure he has the best education and he loves it. He especially loves his cooking class every week. We encourage this in the house – my kids love helping out Daddy in the kitchen. This week my son came home with his first homework of the year: Make Welsh cakes! Awesome! They even gave us a recipe to work from.

I have to admit, having in lived in Wales for 27 years, I have never cooked Welsh cakes. I have always meant to get round to ‘having a go’ but never did. So, we made these yesterday, and I have got to say that they were lovely – it was a really simple recipe and delicious. Even though I am not suppose to eat stuff like this anymore I couldn’t resist a little nibble.

As I said, I can’t lay claim to this recipe but I thought I might share, especially as I seem to be getting quite a few visitors to this site from different parts of the world, I thought it would be a nice introduction to some welsh cooking heritage.

Ingredients

225/8ox Self raising flour, sieved

110g/4oz (preferably Welsh) salted butter

1 Free range egg

Handful of Sultanas

85g/3oz caster sugar

Method

  1. Rub the butter into the sieved flour to make breadcrumbs.
  2. Add the sugar, sultanas and then the egg. Mix to combine, then form a ball of dough.
  3. Roll out the pastry until it is a 5mm/1/4in thick and cut into rounds.
  4. Place in a dry frying pan on a low heat. Cook until brown, turning once.IMAG0133.jpg

It doesn’t take long and it’s a really simple recipe to do. If you have kids, they will love it! The other bonus is they are great with a cuppa of tea or coffee. All courtesy of my son’s school teachers.

Apple Crumble Cheese Cake

Apple Crumble Cheesecake

I got the basis of this recipe from @Somersetmum on her blog Somersetmum.com. It sounded like something we’d eat in our house. I had to change it a little bit to fit my dietary requirements, but I thought why not give it a try. It is an awesome little dessert – the apple crumble on top is caramelized apple and gives the taste of toffee apples as well as the usual apple crumble loveliness . For those of you who like cheesecake, those of you who like apple crumble, this is a match made in food heaven. My version is still a little bit naughty but it doesn’t really affect my LPR, so I am calling it a win. Plus you don’t need to eat the whole thing to yourself. The best bit about food is sharing it with others. The best thing is that it cost me a fiver!!! For a 12″ cheesecake. Absolute bargain.

Ingredients

Cheesecake Base:
A half pack of digestives (approx. 10 biscuits)

75g of toasted and blended oats

2 tablespoons of honey

Cheesecake Filling
2 packets lightest (5% or less) cream cheese
1 packet light mascarpone
25g sugar

Tsb of Cornflour

2 tsp honey
2 medium eggs

Baked Apples
4 chopped up cooking apples
25g brown sugar

2 tsp of honey
1 tbsp cinnamon
75g sultanas or mixed dried fruit

Crumble
50g brown sugar
100g plain flour
4 tsp of honey
50g oats

Method

  1. Heat the oven to 180°C/350°F
  2. In a baking tray mix apples, sugar, cinnamon and sultanas/dried fruit and bake for 25 minutes. Then Turn the oven down to 160°C/320°F. Adjust according to your oven. I have a bake option on mine so I use that instead of the fan setting. The result is always better when I do this.
  3. Toast the oats in a dry frying pan until they start to brown. Be careful not to burn the oats as this doesn’t take long. They should smell a little like popcorn when toasted. Yum! Put the the toasted oats and digestive biscuits in food processor and blend until they are just crumbs. Add the honey and mix. Press into the bottom of a lined, spring loaded, cake tin and refrigerate whilst you get the rest sorted.
  4. Add all the ingredients for the cheesecake filling and pulse until smooth. Use can you a food processor or a hand mixer like I did for this. So this is where I got confused and literally blended everything up together! Now blend half if the apples in the food processor and add to the cheesecake mix. Leave the other half of the apples to layer on top of the chesse cake.
  5. To make your crumble, put all your ingredients in a bowl and work the mixture with your hands. I was always taught to roll the mixture with your thumb over your fingers. Do this until the mixture is fully combinedIMAG0075.jpg
  6. Now pour all your cheesecake topping on top of the biscuit base you have in the fridge and then top with the rest of the apples and your crumble topping, put as much or as little as you want on.

IMAG0080.jpg

 

IMAG0081.jpg

7. Bake for 1 hour then set for at least three hours in the fridge. I left mine over night and come lunchtime the next day when we tried it, it was perfect! Try Hot or Cold, So many people said it was better hot but ya’ll might like it cold!

 

Thanks to @Somersetmum for the original recipe. I truly enjoyed this dessert today. Sundays are the best for a treat after a roast beef dinner.

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My Summer As A Stay At Home Dad

My Summer As A ‘Stay At Home Dad’ – Blog 003

It’s been awhile since I wrote my first two blogs. A couple of months. It’s not that I have been lazy – just too busy. The summer was a crazy mess of holidays and keeping the kids entertained. I have got to say it was the best summer yet. We had two holidays. Yes, I feel very blessed to say that we had two holidays. One was an ill-fated, rained out caravan holiday and the other was a 30 degree stunner in Crete. It was brilliant!!!

I ‘accidentally’ bid on a caravan holiday in a charity auction back last year. It was our first caravan holiday, and probably our last. The location was spectacular and the caravan wasn’t too bad. It’s just that caravanning is just not for us. It rained for 90% of the time and the kids couldn’t cope with being stuck in a tin can. Needless to say, we won’t be doing that again anytime soon. Unless nostalgia bites and we think it will be okay next time. I think my main issue is that I am a little bit larger and a little bit taller than most people than caravan. My feet hung about two feet off the end of the bed, meaning that I didn’t get hardly any sleep. For some strange reason the lack of year round heating in the tin can meant that there was a slight dampness in the air, resulting in my asthma playing up and me feeling like I was breathing through a damp cloth for three days. Fun! Looking on the bright side, we now know not to do that again. To be totally honest, we were grateful that we had this holiday and that the money we paid went to a really worthy charity who helped us for many years with our son, and we know that if we more caravan goers we would have enjoyed it far more as the setting was brilliant and it was a good caravan that had been donated by a very kind and generous family. My hat goes off to them. 

Thankfully, we had booked a week away in Crete, Greece. This is our last holiday away for a while. Due to giving up the day job, money is going to be a little more sparse than in previous years, so our usual week away in the ‘Med’ is going to be more of pipe dream for a little while. This holiday was our last big getaway before our son goes through his assessment for a pot

ential brain surgery. A lot was riding on this one. It didn’t disappoint. It was honestly amazing. The weather was perfect, the food was unbelievable, and more importantly, the memories we created as a family were unforgettable. My two children finally got over their fear of the swimming pool and I enjoyed

dunking them in the water more than what’s acceptable. Payback at last! Without giving you every last detail, it was absolutely incredible.

Not one to have a moan, I must talk about one aspect of the holiday that was gobsmackingly awful. Gatwick was awful on the way back. Their special assistance service resulted in me having to carry my heavy, sleeping, nearly 6 year old son from the plane to passport control and on to baggage in order to collect his wheelchair, which coincidentally came through last. To use a ‘Welshism’ – I was tamping. We have flown to several airports and never had a problem. When flying back to Cardiff from Spain last year the service we had was excellent. We were even allowed to meet the pilots and my son got to sit in the Pilot’s chair while we waited for our escort through to baggage collection. The wheelchair was delivered to the plane so I didn’t have to carry my son and our every need was taken care of. It could not be faulted. We thought thought that the Uk’s No 1 airport would give us something similar. It clearly fell well beneath expectations. Needless to say we shall avoid Gatwick when travelling abroad again.

I have to say that being a stay at home dad this summer has been amazing. It’s gone far too quick and I was ready for the children to go back to school – basically so I can get some energy back. I am pretty sure that this year’s summer will be one I will remember clearly and will be one of the best. If not, I have some great summers to come.

Yellow Plum Mini Cheesecakes

Low Sugar Mini Snack Cheesecake

 

If you love cheesecake, especially baked cheese cakes, why not try these? You can choose whatever topping you want. I have tried lots of different fruit compotes but this one is one of my favourites: Yellow Plum Mini Cheesecakes. There are lots of recipes out there for mini cheese cakes, but mine is lower in sugar than most and lower in fat. Apologies for the awful photo, it doesn’t do these justice.

Ingredients

8 paper muffin holders

5 digestive biscuits

1 tsp honey

250g low fat (5% or less) cream cheese

1 egg

50g sugar

1 tsp vanilla essence

2 tsp cornflour

Topping example: Yellow plum compote

2 ripe yellow plums

50g sugar

100ml water

Method

To make the Cheesecake

Put the egg, sugar, cornflour and vanilla into a bowl and whisk until light and fluffy. Add in cream cheese and whisk until a thick white consistency. Leave to rest at room temperature whilst you make the cheesecake base.

To make the base, crush the biscuits until a fine crumb and then add the honey and mix together. Line the paper muffin cups with digestive biscuit and press in firmly.

Pour the cheesecake mixture on top of the biscuit base and then bake in the centre of the oven for 25 mins. Once finished, place them on a cooling rack before adding your topping.

To make the Topping

Slice the yellow plums into segments of equal size. Add100ml water and sugar into a saucepan and bring to the boil. Wait for it to thicken to the consistency of a soup-like liquid. Add the plums to soften. Let it cool for 10 mins before adding to the dessert. You can add a 2 tsp of light brown sugar is you have a sweet tooth.

This is a really simply and delicious recipe. Enjoy! Remember to let me know if you try this out and what your thoughts are.