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!

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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

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’

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!