Bam is 10!

Warning to pregnant Mummas – contains detail of a difficult birth

Wow, how does a decade go so fast….Bam is 10 today and I’m looking back wondering how we arrived at today so quickly!

This morning he said to me ‘ Mum, you can have a glass of wine tonight. I’m impressed you have kept me alive for 10 years!’

Cheers matey, don’t mind if I do!

Bam made a dramatic entrance into the world. I had contractions on and off for 5 days before the birth. He wasn’t in the right position for birth, his back was against my back. This was making the whole process very painful. Not that I had anything to compare it to but let’s just say it was beyond my pain threshold!

I had the drip thingy to try and speed up the labour but nothing really happened, just a lot more pain but no dilation. This went on for hours and hours, I was absolutely shattered!

Bam was getting distressed and his heart rate was dropping every time I had a contraction. Before I knew it the alarms were going off and I had what felt like hundreds of doctors standing around the bed!

Following some tests I was told that there was a lack of oxygen getting to his brain. The doctors advised me that they needed to get him out via C-section within 8 minutes.

It was horrible, really frightening. I lost a lot of blood and was feeling quite unwell. I wondered if we would both be ok.

We were, but I was always worried that Bam would have some form of brain damage due to the lack of oxygen reaching his brain. It was always there nagging at me.

Bam met all of his milestones and happily went off to school. I actually remember thinking, he’s going to be ok, he’s at school and he’s learning so everything must be ok.

In the first Christmas holidays of Bam’s school life, he began having seizures. This was the start of his diagnosis of cortical dysplasia (brain damage -in his case very mild but enough to cause him a few challenges along the way)

10 years later, we are still learning how the cortical dysplasia affects Bam and probably will for a good few years yet…

The last 10 years have been amazing, I wouldn’t change one thing about my boy, because he’s perfect in every way!

Happy 10th birthday Bam Bam! xxx

 

You didn’t glance back?

Dearest Bam,

I know you didn’t glance back today after I kissed you goodbye. Why would you? You were full to the brim with excitement for your residential trip with the school. Chatting to your mates about Pokémon cards and which activities you were going to do. I heard you say ‘I’m going to do everything!’

I also heard you tell everybody that you had only had an hour’s sleep last night. Yes, that’s true, every hour waking me up to tell me the time and how many hours there were left until you head off on your adventure. I tried to calm you down but nothing worked. By 4.30am, I gave up and suggested you watched TV. Self preservation for sleep was beginning to kick in!

This morning you literally bounced around the house, causing great excitement in your brother too. I was silently wishing the time away, I was tired and a little sad that you were heading off on your own.

However, your enthusiasm for life makes me smile. I know you will put everything you have into enjoying your time outside climbing, swimming etc and return home absolutely exhausted at the end of the week.

I’m pleased that you go without a care in the world. I’m pleased I have done all the worrying for you. I’ve met with the teacher about your special needs – we discussed your medication and your specific requirements. I’ve googled how far away the hospital is just in case you have a seizure. I’ve worried about the fact you’ll be kayaking in the sea and I’ve worried that you won’t eat at lunchtime because of your ADHD medication. (The lovely teacher is taking some breakfast biscuits for you to munch on should you get peckish)

Off you go precious boy, have a blast! I’ll never stop worrying about you although I am looking forward to some sleep tonight. Oh and thanks for the letting me give you a kiss goodbye, even though ‘that’s embarrassing!’

I’ll miss you…

Love Mum xxxx

 

 

Family on tour

It’s the Easter holidays, time for a mini break with the darling children.

The sun is shining, we pack up the car and head down to the lovely county of Devon. Kids have electronic devices to entertain them on our journey. All goes pretty smoothly, apart from the frequent occurrence of bottom odour from one of the males in the car – nobody ever admits it though! Cue my constant lowering of the window to prevent suffocation.

Mum had been ultra organised and was feeling a little smug as we pulled into the local Tesco store to collect our shopping requirements for the week….no trawling round the shops with grumpy boys for me. I didn’t stay smug for long when the guy giving us our shopping pulled out the most gigantic pizza you have ever seen – boys began chuckling, I was wondering whether a small lodge oven would cope with oversized pizza.

First day we head to the beach, the sun is still shining, yes two days in a row in the UK! When the sun shines in the UK it seems rude not to indulge in an ice cream! When asked which flavour the boys would like Mops very matter of fact says ‘salted caramel please’ Salted caramel….!! How does he even know about such flavours! Unfortunately, salted caramel wasn’t on the menu so he had to settle for bubble-gum and mint choc chip – yes, together!

We were lucky enough to have a hot tub at our lodge….lovely relaxing, bubbly hot tub, over looking the lake – could it get any more relaxing? According to hubby, the answer is most definitely ‘yes’. In fact he commented that it was like sharing a bath with three idiots! Hmmm, not quite so relaxing with the kids in tow.

Next day trip, Dartmoor forest. A lovely spot for a picnic, the sun is STILL shining and we head for an afternoon of exploration. There are two different routes around the falls and the forest, both advertised as taking about 40 minutes. Of course, this doesn’t take into account Bam’s ability to effortlessly climb up hills without even so much as a glance back. I will never tire of watching him – sadly I do tire from trying to keep up with him. Anyway, with Bam on board we complete both trails in about 40mins. Oh and this was whilst they completed an Easter quiz which resulted in Bam receiving a prize of 20 Easter eggs!! Yay, as if we didn’t have enough chocolate form the very generous Easter bunny!

Final day was spent at an adventure park. Loads for the kids (including the hubby!) from a toboggan run, dinosaur trail and the biggest soft play I have ever seen. Even a beautiful bluebell wood – boys weren’t impressed with me pouring over how beautiful the bluebells were.

Time for the family on tour to return home ….exhausted (well, all of us apart from Bam!) and full of lovely happy memories! Back to school for a rest…

TV documentary on ADHD

As soon as I found out that there was going to be a documentary on ADHD with Rory Bremner, I couldn’t wait to see it. I’m always keen to learn more about the condition, hoping to hear a nugget of information that may help my Bam.

I’m pleased to say the documentary most definitely didn’t disappoint! ADHD can be very misunderstood among the general population so Rory feeling able to raise awareness of this condition is fantastic and very welcome.

The documentary talked a lot about how ADHD can be managed.  Interestingly, the documentary mentioned that ADHD can be reduced by quite a significant percentage when the person with the condition is outside. This is certainly true of Bam. His absolute favourite hobby is going to cubs. This is largely due to the amount of time that they spend outside. It’s amazing to see how happy and comfortable he is outside. This has always been the case for Bam, even when he was very small. He would like nothing more than finding a big open space and running free!

The benefits of excercise were also mentioned. For Bam this is very much linked with his passion to be outside. We rarely spend a day at home, it’s important for all of us to get out burn some energy and get some fresh air! We haven’t really found a sport that Bam likes yet, he enjoys riding his bike and running with me but his interest in these activities comes and goes.

Of course medication was also discussed. Rory actually took medication for the first time while he was doing the documentary. It was really interesting to hear how it affected him and how it helped him to be more focused. He referred to the medication changing his head from a busy noisy space to a much calmer one. It’s difficult for Bam to articulate the effect the medication has on him as he’s still very young, although one of the first things he said when he began taking the medication was ‘I can hear now’. I guess that reflects the experience that Rory described.

Finding out that the brain of an ADHD person is actually different to the brain of a non ADHD person is really interesting. On a MRI scan you could actually see the difference between the two brains. I was surprised to hear that an ADHD has something missing rather than something additional that causes the unique behaviours.

It’s reassuring to hear Rory speak of his experience and helpful to know that the things we do to help Bam are actually making his life a little bit easier. Interestingly, Bam is quite the comedian too (see Bam’s got talent) so I’m intrigued to see what path he takes in the future. In the meantime, we’ll enjoy the additional fresh air we get, it’s a great way to keep fit after all.

The documentary was on BBC2 on Tuesday 25th April at 9am – worth a watch!

 

Bam’s got talent!

Bam bounces out of school full of enthusiasm and excitement (yes, even more than usual!). The reason for his enthusiasm? He’s going to enter the school talent contest.

‘I need you to print off some jokes from the internet, I’m going to perform a comedy act’

Eek, it’s really hard to make people laugh, a little knot appears in my stomach but I muster up lots of encouragement and put my own fears to one side.

Hubby prints off some truly corny jokes – you know the ones that make you groan ‘What did the duvet say to the bed? Don’t worry, I’ve got you covered! Did that make you groan?

Bam sets to work planning his script for the auditions. He works really, really hard. Night after night he sits in his bed planning and writing.

The day of the auditions arrives. I’m in awe of his confidence, there is no doubt in his mind that he has this nailed.

I’m working all day on the day of the auditions, so I ask him to text me from Mum’s phone as she is collecting him from school. School kicking out time arrives and I eagerly await the text. My phone rings…..he’s done it!!! He’s got through. 12 people out of 200 were chosen….he’s as high as a kite. So he should be, what an amazing achievement.

More nights of writing and rehearsing ahead to prepare himself  for the finals. I’m oozing with pride, having the confidence to get up and perform in front of his peers is amazing.

He didn’t win in the finals but that didn’t matter. People voted for him – my confident, bubbly and funny Bam. You always make me smile young man, seems that you have the talent to make other people smile too. Next stop Britain’s Got Talent!

When your child is diagnosed with epilepsy.

At the point of diagnosis Bam was having about 10 seizures a day. He would suddenly lose consciousness and fall to the floor. We would then have that agonising few second wait (which felt like much longer) for Bam to come back to us. It’s really scary seeing your child unconscious, not knowing how long the seizure will last for. I felt helpless.  When the seizure finished all I wanted to do was hold him tight but that’s the last thing he wanted. He was confused, tired and disorientated, he needed time to recover.

We realised shortly after diagnosis that Bam was also having absence seizures as well as drop down seizures. My poor boy was having several seizures per day leaving him confused and exhausted.

I desperately wanted to know more about epilepsy and how I could help Bam. There’s so much information out there but I found it very overwhelming and confusing. For a start there are over 40 different types of seizure!

When Young Epilepsy asked me to blog about their new guide on childhood epilepsy I was keen to help. I’m pleased to say it’s pretty impressive! I wish this was available when Bam was diagnosed. It has everything you need to know from details about the different types of seizure through to the medications that are available.

Personally I found the section on the impact that epilepsy can have on learning and behaviour of particular interest. Bam has Attention Deficit Hyperactivity Disorder (ADHD) in addition to epilepsy. I had no idea that 20-40% of children with epilepsy also have ADHD! The guide also explains how children with epilepsy can be anxious, find they have a lack of independence, a low self esteem and a lack of confidence. So it’s not just about the seizures….

The Young Epilepsy guide talks through each of the issues that children with epilepsy can experience and how parents can help their children manage these challenges. I highly recommend this guide to other parents of children with epilepsy, it’s informative and easy to read.

Finding out your child has epilepsy is tough. Having information such as the guide that Young Epilepsy has published is really helpful. It’ll help guide you through what sometimes can be a tough journey.

Life in the fast lane…

I’ve been reflecting recently on the family life that Mops, my youngest boy, is part of. Life is very chaotic, loud and active. For him life has always been like that so I wonder if he actually realises his life might be ever so slightly different to his friends in the classroom?

He knows all about Bam’s conditions and how they affect him. He’s very open about them and will chat to his friends about it. He’s adapts brilliantly to life with Bam. He’s so patient, much more patient than anybody else living in our household! Even if he has to ask the same question to Bam five times over, he’ll do it and persevere. I wonder if that’s because he knows he needs to be patient or because that’s his normal.

I often wonder that as Mops gets older, he’ll begin to realise how he adapts to living with a brother with ADHD and epilepsy. Does he enjoy charging around all of the time with his brother, climbing trees, scooting, generally living life in the fast lane or is he wondering about the next time he’ll get to sit and relax? I suspect it’s probably a little bit of both!

This weekend I took Mops out for some lunch, just him and I. So as we sat in Subway munching on our sandwich creations we chatted about school, play, friends etc. It was as we were walking through town I asked Mops if he had enjoyed his lunch. His reply was very simple but very powerful ‘Yes Mum, I have, it’s been very relaxing!’ So he does like a bit of down time, just to sit, just to chill, just to be able to eat a sandwich rather than gulp it down.

He’s still very young (5) but I wonder how he’ll handle family life in the future. I have a feeling he’ll adapt, just as he always has. Love you Mops for everything you do and I know Bam does too.

Christmas comes early!

Christmas causes excitement in every house. In our house, it means Bam’s ADHD is heightened. He has even more energy and is extra, extra bouncy!

So I know I need to be prepared. Do I really need to prepare for it in October though? Sadly, it would appear that I do!

Following a family stroll at the weekend we took the boys for a drink and cake at our local garden centre. We took a stroll around the centre afterwards. Hubby and Mops ventured off to the toilet leaving Bam and I looking at the fish.

It was then that he started bouncing around like an excited puppy. ‘Mum, Mum, there’s Christmas stuff in there! I can see a light twinkling’ I was totally unprepared for this, we have only just entered Autumn – Christmas had only been a fleeting thought in my mind, nothing more.  Noooo, it can’t be, it’s the 1st October! Noooooo!

Sure enough, I glanced into the shop to see the smallest twinkling light shining through the corner of a window. The boy’s Christmas radar was on fire!!

‘Come on Mum, let’s go and have a look?’ Before I had a chance to reply, he was gone in a flash, full of energy and squeals!

As I ran through the sliding doors in an attempt to catch up with him I could see he was right….indeed the shop was full of Santa, Rudolph, snowmen etc, all staring at me with a smug cheery smile.

Bam was running through the shop, cuddling big polar bears, picking up Santas and diving into an igloo full of yet more Santas and more snowmen. All the time with a beaming smile from ear to ear!

Uh oh, Christmas 2016 here we come…in October!

Any tips on  managing the excitement over the Christmas period? All tips gratefully received!

Change of heart

Recently Bam made a big decision…he decided to tell his class about his epilepsy. Previously he was adamant that he didn’t want his friends to know, he didn’t want people to think he was different. (see earlier blog post)

So why the change of heart? I think it was down to our attendance at the Young Epilepsy Awards in London earlier in the year. It was here that he realised that he wasn’t the only one with epilepsy,  everyone at the awards had epilepsy just like him and they were celebrating their achievements.

He was so inspired he decided to organise an assembly at school to tell everybody about epilepsy and how it affects people.

So off he went to school, armed with statistics and information on the different seizures. He spoke to his Teaching Assistant who in turn spoke to the Head Teacher. They welcomed the idea and booked him in for his assembly!

He was so excited! He spent lots of time thinking and planning the powerpoint presentation that he was going to build ready for his talk.

When the day came for him to run his assembly, he went into school cool and calm. I could see that he was very self assured, I knew this was the right thing for him to do.

He proudly spoke to the class and then answered any questions at the end. When one child asked ‘Does epilepsy stop you from doing things?’ His reply was ‘No, I’m no different to anybody else!’

Wow, Bam, I’m oozing with pride – you never cease to amaze me young man! Well done for sharing your experiences and raising awareness of epilepsy among young people.

And life since the assembly?  His classmates treat him exactly the same as they did before, nothing’s changed but if he (or another child)  does have a seizure at school then they will understand how to help.  (Which makes me feel much happier!)

 

Super powers…

Last week I was fortunate enough to spend a week on holiday with my boys and enjoyed some proper family time. Away from the laptop, household chores and the general routine of life.

Whilst on holiday I was really struck by the boundless amount of energy Bam has. I know he has always had lots of energy but after spending a week with him it’s clear that boy is actually a Duracell bunny!

I watched him effortlessly climb large sand dunes in hot temperatures whilst the rest of us plod up the dunes, resting along the way!

I have watched him climb a small mountain in minutes. We’re still at the bottom while he’s nearing the top.

I have watched him run over and over into the waves, jumping each one enthusiastically.

And, whilst the rest of us have taken advantage of a lay in, he’s up pottering around eager to start his day.

I’m in awe of the energy that he has and I hope in the future he uses it wisely. It’s a super power that if used well could be a platform to a successful future.