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

 

 

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.

Letting go!

DSC00441So my big boy is getting older, he’s 8 and he’s rapidly becoming more and more independent. I know all parents grapple with making decisions about the right time to let their child walk out of school on their own or let them stay overnight with somebody other than family.

So this weekend is cub camp, he’s been before but only for one night and this time it’s two nights…! I’ll be honest, if was up to me I wouldn’t let him go, I want him at home with me where I know he is safe. Bam has epilepsy, it’s controlled with medication but it just makes me worry about him that bit more. Epilepsy is a serious condition and you never really know when the medication isn’t going to work any more therefore making him susceptible to seizures.

Of course I have told the cub leaders that he must be watched if he’s climbing up high or near water. They know he needs to take his medication twice a day but I know no one could love him as much as I do, will they look after him in the same way that I would?

I know this is just the start of Bam entering independence, I need to help him learn about epilepsy so he can take care of himself, so he can make other people aware of his condition and let them know when he’s not feeling too well. It’s tough, I don’t want him to be held back by his condition, I want him to be free to do everything that he wants to do but I also want him to be careful.

People say children get easier as they grow up, I really don’t think that’s the case, I think the challenges just change…..! Have fun this weekend Bam, stay safe, can’t wait for my cuddle with my muddy, smelly, happy boy on Sunday afternoon xxx