Education, Health and Care Plan (EHCP), the first hurdle!

I’ve been patiently waiting but it’s always in the back of my mind. Will the local authority grant my request for an Education, Health and Care Plan (EHCP) for my son?

Many people told me it would be a waste of time applying for an EHCP because he’s bright and meeting all age-related expectations academically. This is very true but he struggles every day to access the curriculum. He struggles to access the curriculum because it’s difficult for him to manage his emotions, he struggles to organise himself and his Attention Deficit Hyperactivity Disorder (ADHD) can hinder his ability to focus.

He manages at primary school, but I worry how he would find the transition would into a secondary school provision. Secondary school is a whole new ball game – several teachers per day, moving to a different classroom every hour and attending a much bigger school.  

We’re extremely lucky that one of our local schools does have a high functioning autism provision. The child attends mainstream school but gets the specialist support they need from the specialist function.  I met with the head teacher of the specialist provision. As she explained how it worked, I realised how perfect it would be for him.

So, I felt I had to try and get him the support…if I tried and didn’t get it then I have done all I possibly could! If I didn’t try I would never know…and if things didn’t work out for him in secondary school, I would wonder if I had let him down because I hadn’t applied!

So, I applied…6 long weeks ago. People have told me to put it to the back of my mind, try not to think about it but it’s always there.

The whole process takes 20 weeks. After 6 weeks you are informed if the local authority is going to assess the child further. If they decide to progress they then carry out a more detailed assessment on your child and will let you know if they are going to grant the EHCP after a total of 20 weeks.

So the 6 week mark is here – the first hurdle. I called the local authority last week to see how his application was progressing. The lady went to check on the application and when she came back to the phone and said ‘I’m pleased to tell you, we are going to be taking the application further…..’ I instantly felt a huge amount of relief, they wanted to assess him further, I am one step closer to getting the help that he needs.

I know the journey is far from over…it’s long, it’s stressful and it’s a lot of work. Please send your positive thoughts for stage 2….I’ll keep you posted!

Advertisements

Supporting the sibling of a special needs child

When you have a child with special needs, they can quite quickly and easily become the focus of your attention.

They need extra support to keep up with daily life, they need extra understanding because sometimes they’re not able to keep up with daily life and they need extra energy because sometimes life can be tough and challenging.

As a parent you dig deep and find that extra support, understanding and energy. You invest everything you can because you want them to be the best that they can be.

While all this is going on, there is your other child, the one without the special needs, without the need for extra support, understanding and energy…but actually that’s not true, they really do need that additional support too!

I’ve realised recently that maybe Mops needs that bit of extra support – after all he’s contending with a lot more than his peers. Maybe he needs a bit more time. Maybe he needs a bit of additional understanding. I’ve always done my best to give him the time that he needs but as he’s got older his needs have changed and I need to change my approach.  

I don’t have the answers, I don’t think I ever will but we’ll work through it, meanwhile, Mops, know that I think you are beyond amazing! You make me smile every day and are the best little brother EVER.

Love you to the moon and back and back again x

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….

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!

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.