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?!

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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.

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’

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

 

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