Receiving a high functioning autism diagnosis

I walked into the doctor’s surgery feeling a bit nervous. I didn’t know what to expect, I just knew we would be there for two hours and that they were going to do two types of assessment. I didn’t know what the assessments would involve, I hadn’t prepared myself for the emotional impact either – It’s hard to discuss your son’s behaviours in so much detail with a stranger.

Bam was taken to a different room to be assessed by a speech therapist and a psychologist. I hadn’t prepared myself for him to be on his own…I wanted to be there to support him. It was a very long hour sat in the waiting room, wondering if he was ok, wondering what he was thinking. The second hour, the three of us sat and spoke to the doctor. We discussed Bam’s behaviour in detail.

Then towards the end of the hour, literally five minutes from the end of our appointment, Bam was diagnosed with high functioning autism.  It wasn’t a total surprise so why did I feel so shocked when the doctor announced he was in no doubt that Bam was autistic. Maybe it was hearing it out loud, maybe it was because it was now confirmed, maybe it was because he was so confident in his diagnosis.

We left the doctor’s surgery and I felt numb…my brain was busy processing this new piece of information. What did it mean, how would it help? Would it help at all? How would we explain it to Bam and Mops. Had we done the right thing seeking the diagnosis?

At that point in time, when the doctor tells you your child has autism, you just feel totally overwhelmed. There’s so many questions, so many things you want to know but the doctor hasn’t got the time to answer the questions. Also, I didn’t want to ask lots of questions in front of Bam because I wanted to tell him in a way that he would understand, in an environment that he felt comfortable in.

So you walk out the doctors surgery feeling numb….feeling overwhelmed….feeling emotional….

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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

 

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!

Mother’s bond with her children

I don’t think there’s anything stonger than the bond between a mother and her children.

I know my boys inside out. I know what they like to do, what they like to eat and what makes them happy and sad (well most of the time anyway!)

I know it won’t always be this way and as they grow I won’t know where they are all of the time or what they are thinking. That transition will be tough but I hope they will know that I’ll always be there for them.

Mops wrote down the reasons why he loves his Mum at school this week. Here goes:

  • She’s kind to me
  • She let’s me play on my DS XL (Laughed how this one made it so high up on the list!)
  • She reads me bedtime stories
  • Nice food

Let’s hope he always thinks I make ‘nice food’ and pops in for a roast dinner on a Sunday once he has flown the nest!

Thanks boys for making me smile everyday, I love you to the moon and back!

Happy Mother’s Day to all the lovely Mums out there!

‘Don’t worry you’re not last!’

A few years ago I ran my first ever half marathon.  I ran with a friend for a charity and I have to say it really was one of the toughest 2.5 hours of my life. Ok, ok, so maybe not as tough as childbirth, particularly boy number one, but even so it was a tough couple of hours.  I remember sitting down on the tube platform after the race waiting for my train thinking I don’t think I’m going to be able to get up to get on the train. My stomach was hurting and I felt faint. It was then that I swore I would never run a half marathon again. I convinced myself that actually it wasn’t for me, I just wasn’t built for it.

So why yesterday did I find myself attempting to run a half marathon again! This time a few years older but clearly not wiser and on my own. Well not totally on my own as 1,999 other people were running too but I wasn’t running with a buddy.

Running a half marathon is tough, both mentally and physically. Training for it is also tough. Hauling my bottom off the sofa over the Christmas period was tricky…but I wanted to do this!

When I arrived at the start line yesterday morning it was bloody freezing – minus 4! The sun was shining and the atmosphere was building. I felt self conscious, standing at the start line on my own…no running belt, no gels, no buddies and I was clutching my phone. Fortunately, a lovely fellow runner, also clutching her phone, started chatting to me about the run and then I felt a bit more comfortable.

Within a few minutes we were off, my new running buddy and I spent the first 5 miles together chatting. The running community is an amazing bunch, everybody is so supportive and caring.

Once I left my running buddy, I was on my own..running around my home town as I have done many times before but this time was different, I was racing, I was proving to myself that I could do this! (again!)

I actually spent the rest of the run on my own, with the odd ‘keep going’ from fellow runners. I was also very lucky to have some supporters that braved the cold to cheer me on. Just knowing that I had friends dotted around the course kept me motivated to continue.

When I got to mile 11, I could have easily given up. I had only run up to mile 11 in training so mentally I thought that I wouldn’t be able to run any further. There was a small hill ahead, I was tired. I had pushed myself to go this far but wasn’t sure if I could continue for that extra mile or two! When you reach that point it’s tough, especially when you are running on your own.

But ,I did keep going, the thought of my boys at the finish line and a hot bubble bath were enough, I was determined to run the last two miles and make them proud!

They were there at the finish line, shouting ‘Mum’ and saying ‘don’t worry, you’re not last’.

I had done it, I had reached the finish line…I was faster than when I ran a half marathon three years ago and I felt better physically too. So last night I felt proud, I hope that my boys did too.

Oh and the bubble bath was the best bubble bath I have EVER had!

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.