BAM’S LOVELY LIFE !!! ;)

I’m very proud and honoured to have a very special guest blogger write for me – My son, Bam. You inspire me every single day.  Bam, over to you….

I have ADHD and epilepsy so I don’t always do that well in school, but fortunately for me I have two lovely teachers and one lovely LSA. Even if I have Epilepsy and ADHD I still carry on in school and persevere thanks to everyone in my school and also my lovely Mum.

I got bullied once in school but I don’t know why it might be because of my Epilepsy or maybe because of my ADHD. I have a friend who also has ADHD and he knows he gets bullied for it I wish I could stop it but I can’t because they might be nasty to me as well and I don’t want to be bullied again of course. I banged my head once and I was dizzy for the whole entire day.

My life has been made much better by my Mum, who has now set up a charity called Braain which is made for children with ADHD AND Autism which is very kind of her ;). I have lots of friends and I play with them every day so I think I am pretty lucky.

 Special thanks to my mum who inspired me to do this wonderful blog

And my Mum’s friends Helen and Emma

 

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.