Awaiting EHCP decision

I’m waiting for the Education, Health and Care plan (EHCP) decision to enter my inbox – it’s due on Monday but the local authority have warned me that there may be a delay of a few days.

It’s really putting me on edge…we’ve been told that Bam’s application is borderline so I’m aware we might not be successful. If we’re not successful, what does that mean?

Yes, we can appeal but then that takes another 2 months to do and we still may not be any further forward at the end of it! To be honest, I’m exhausted from the whole process too, will have to dig deep to find the energy to fight again if we have to go to appeal.

While this is all going on we have to make the decision about his secondary school place. We have been offered a place at the school where he would receive specialist support should we be successful with the EHCP but none of his friends will be going to this school.

So if we don’t get the EHCP, should we consider the school where his friends will be? Are his friendships more important for his wellbeing than the hope of some additional support.

Big decisions ahead…please can somebody pass the parenting manual?!


Education, Health and Care Plan (EHCP) – the next stage

I chose this photo to accompany this post as I think it accurately sums up how I feel about the Education, Health and Care Plan process – lots of steps to climb, with my gorgeous boy and his needs at the centre of the process.

Here’s more about entering stage 2 of the process….

Following the positive news that we had progressed through stage one of the Education, Health and Care Plan (EHCP) process, we were quickly contacted by an Educational Psychologist.

She called to arrange a meeting to discuss Bam’s needs. She was extremely keen that Bam was part of meeting and therefore suggested that he led the meeting. Bam was able to choose who he wanted to be present at the meeting and much to his delight was offered the opportunity to request a snack of his choice! He chose fruit chewy sweets – of course!

I explained to Bam why the meeting was taking place and he was keen to be part of the process. He asked for his two class teachers, his learning support assistant and his friend to attend the meeting.

On the day of the meeting, I felt very nervous. I think it was because I felt that I only had one hour to make my case for additional support for Bam…This was it, my opportunity to get the support he needs!

We all sat round a table at school (with the fruit chewy sweets in the centre!) and Bam was asked to introduce everybody at the meeting.

We then moved on to talk about what Bam would like to be when he’s older. He was a bit stumped by this. I think at this point he was feeling a bit overwhelmed. I guess sitting in a room with lots of adults discussing his feelings is tough…

We then moved on to talk about Sam’s needs at school. This included how he was supported in primary school and how he feels he’ll need to be supported in secondary school.  All of our thoughts were written up on to a flip chart.

The process was really tricky. On one hand it’s great for Bam to be involved and have his say but on the other hand his perceptions of what he needs and my perceptions  of his needs can be different. It was difficult to highlight these differences because Bam was sitting there the whole time and it wasn’t fair to disagree with his perceptions of himself.

The meeting lasted for about an hour. At the end of the process the Education Psychologist gave me the opportunity to ask further questions about the process (Bam wasn’t present at this point). It was at this point the Education Psychologist suggested that Bam’s application was borderline and it would be advisable to prepare for the scenario that we may not receive the ECHP.

My heart sank……they say nobody knows a child like their parents! I know he needs this support to thrive, I know him.. So the wait continues…4 more weeks for the stage 2 decision!

Bam on tour…school trip excitement

Last week Bam went on a school trip. The school asked him to write a summary of his day for the school newsletter – his account of his day is below. This piece really made me smile, his excitement and love of the outdoors really shines through. So here it is….handing over to Bam…

Thank you to Bam for writing the following review of this recent school trip:

The bus was humming as I sat on the top deck, it had a superb view – we were almost there. I was so excited, I practically jumped out my seat when we arrived. Straight away, we got out and put our boots on, ready for anything.

Vigorously, we went on marching through the lane and into the valleys. The birds were singing, I felt my worries fade away in the soft and sweet melody of the birds. We finally got to the pond – it was amazing! There were Canadian geese and three proud standing British Oak trees.

Soon we headed back. When we were back at the coach parking we went straight up the zig-zag path it was breath taking, literally! I was at the top, I felt so accomplished, but also tired.

After that, I marched my way up to the common, it was lovely I felt I was at home, really close to nature. Then we went back down, which was sad, but I was excited for what might happen next. Quickly, I devoured my lunch and proceeded on to the next thing.

The lady started telling us about Scott and his men. Apparently, they walked from the end of the South Pole. I know it sounds amazing, but actually really depressing, because they all died in the end. Then she told us about a much nicer story about another man who lived while trying to get to the South Pole. Subsequently, she started talking to us about penguins and their lifestyle, which was interesting, and that they have specially designed body parts to help them live.

Unfortunately, then it was all over, I had an amazing time and I absolutely loved it. I really hope I can go again in the holidays. On the coach I felt extremely tired, I almost fell asleep on my friend. I am very fortunate to be this lucky to go on this terrific trip with all of the lovely adults who came. Over all it was a wonderful place to visit, but I was also glad to get home! We need to say a massive thank you to all of our amazing parent helpers that gave up their time to come and join us.

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!

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….

Act of kindness at the top of a lighthouse

Living with a child with ADHD inevitably brings the odd challenge along the way…When those challenges arise the behaviour and reactions of those around you can make a difficult situation better or worse

Yesterday I was lucky to be in the company of a very lovely Nan! Here’s what happened.

We were in Plymouth visiting the beautiful lighthouse. The boys wanted to climb to the top – so did I! Hubby decided to stay at the bottom while we trekked up the 93 steps.

I spoke to Bam about how it was important he was sensible and listened while we climbed the tower. ‘Yes Mum, I promise, I’ll listen’

So we started our journey up the lighthouse. Side note – it’s really beautiful and very interesting. The beds they used to sleep in were really tiny and Mops was very intrigued about how they managed to get the beds up the tower! Sorry no photo as I was too busy chasing Bam up the tower!

We reached the top of the tower – the lantern. It was enclosed with windows. Bam was very excited and he started climbing. So I asked him to stop quite a few times but he just wasn’t able to take my instructions on board. So I felt that it wasn’t safe for him to go onto the outdoor viewing gallery. I was worried about him climbing.

I explained to Bam that I didn’t feel comfortable with him going outside. This of course caused a meltdown with tears and attempted escapes to the outdoor viewing gallery. It was frightening! At this point Mops had wandered out on to the outdoor viewing terrace.

I was then blessed with a random act of kindness from a lovely family – a Nan and Grandad with their grandson.

The Nan went to get Mops from the outdoor viewing terrace which left me able to deal with Bam knowing Mops was safe.

I managed to get Bam back down the stairs…it wasn’t pretty. Most of the stairs were ladders, I had a skirt on and protecting my dignity wasn’t top of mind! My bag then fell open and my mobile phone fell to the floor. The lovely grandad of the fore mentioned family picked up my phone – no cracked screen!

We made it down, all 3 of us safe and sound. I explained to the Nan that Bam has ADHD and thanked her for her help. She said ‘well you handled that really well and remained calm in a scary situation’ then she grabbed my arms in a friendly, well done type of way!

Her kindness brought a tear to my eye. I can’t tell you how much difference it makes to have kind and helpful people around you. I actually came away from the situation feeling positive rather than sad and judged!

Thank you lovely family…I saw this quote this morning ‘A simple act of kindness can make a tremendous impact on somebody’s day’