Finally Some Support

Ever since DS1 was born there have been indicators of there being something neuro-diverse with him but only indicators. Nothing to quite put my finger on. By the time he got to 3 or 4 years old I was very much convinced that he had (has) Aspergers which is now within the Autistic Spectrum.

The problem is that he, like me, is an excellent masker so his primary school – which was none too great with any form of SEND just weren’t interested. Hell – they weren’t interested in supporting the child that had a diagnosis of ADHD so why would they be interested in DS1’s masking – they called him their “Happy lad”, their “Always does what he is asked lad” even if “he was a bit loud”! Bit being used in the sarcastic form!

So he went off to Secondary school and I expected it to be overlooked again….except they didn’t. They have a SENCO who could see something was a little amiss behind the happy, polite, do anything for you boy within three meetings with him – and I was so glad she did because this lockdown has brought so many issues to the fore with him. He is really struggling with many aspects of being stuck at home including the “home education” side of things.

Now firstly – let me state – I am not home educating my children. Two of them are far brighter and knowledgable than I ever was so no – I am not their teacher. What I am doing though is facilitating their school sending them work for them to do. Within a couple of days we had started our routine – none of this “oh don’t worry about it – a couple of weeks won’t matter”. We had to have the routine because my children needed it – I needed it! And we all still do!

So week one was a case of getting to grips with what was required and expected from us and the technology involved in reaching that expectation. Week two we were on top of the tech but still needing to tweak the timings and structure.

Then the Easter Holidays and routine went for two weeks which was so hard! We would normally be doing things during holidays – like going on holiday! day trips, adventures, walks – all things we could and can no longer do (for now) so we had to find ways to keep them away from the obsessive power of Video games without leaving the house for long at all (or at all in my case!).

We joined in with the school set “Easter Challenge” – 20 activities that could be chosen out of 30 and presented in some way such as a blog, documents, photos etc. The older two chose their 20 activities and started off with great aplomb…..until DS1 decided he didn’t want to be involved. Which left me with a dilemma……do I make him join in or carry on without him and submit just for DD? I emailed his SENCO who has been such a godsend since we started looking on ways to support DS1. I explained to her that we had tried to get him involved but he wasn’t interested – that when it was submitted it would be mainly just DD and that I was telling her because I didn’t want her to think I was favouring one child over another and was a cause of his problems – blame my paranoia! She replied within an hour….in the middle of the Easter Holidays…to set my mind at rest and to offer some support and advice which we followed – and it worked – because the Easter Challenge blog that was produced with their hard work was just perfect (and yes I know that sounds big headed but…well – it was in my eyes!)

You’ll notice I said “their hard work”……..that was because once we started to carry on with DD and her challenges DS1 decided that actually he might like to join in – and he did. Some challenges they did together – others separately and they only went and did really well in the competition – I mean REALLY well! My next blog post will be about that!

So back into school routines we go after the holidays and within two days I had had a meltdown at him – because instead of doing the work that had been set (and it is challenging!) he had been secretly watching Minecraft videos! Videos of other people playing Minecraft! We tech-grounded him and I immediately emailed his SENCO who set up a Face To Face video chat with him within minutes. She reiterated the importance of doing the work, that we were all trying to support him and he had to start working with us to get his good abilities doing what they should be doing.

It seemed to do the trick. The rest of the week he was calmer, working hard, ready to submit his school work – or so we thought! We discovered when he “couldn’t find” any of his work to submit that he had again been linking in to Minecraft instead of doing his work! Another email to his SENCO and she started the ball rolling!

Since then he has had two daily face to face video calls with his Learning Advisor…every day! The LA even did two private maths lessons via video chat with him to make sure he was ok with it. When he started to have a relapse the LA brought him back into line with some firm but fair words and he has been so much better since.

If only we could have had that support right from when he was young but thank Bilio we have it now or I am not sure I would have survived this lockdown so far! Our SENCO and her team are currently phenomenal!!

Floundering

A brief recap….

Dear Daughter (DD) – 13 years old – described as a “model student” and grade-targeted for 8s and 9s. Can sometimes be stroppy and typical teenage angst occasionally creeps in but, for all general purposes, a fairly easy life with her.

Dear Son 1 (DS1) – nearly 12. Has quite a few autistic traits but, because he makes fairly good eye contact won’t be diagnosed. Also showing signs of highly masked ADHD with all its traits – immaturity, distraction, lack of anger management ability, intelligent. A bright lad.

Dear Son 2 (DS2) – 9 years old – Diagnosed with ADHD and responding well to medication. Fairly placid just a live wire – especially in the evenings. He is also struggling to sleep at night making him look tired and drawn throughout the day.

Dear Son 3 (DS3) – 4 years old – bounces the walls on a regular basis, laughs if you tell him off, can be quite aggressive towards others, loud, squeally and struggling to get the concept of going to the bathroom for his number 2s.

Today my struggle is with DS1. We had a letter yesterday from paeds suggesting that he may “just be a young man with a high sense of self esteem that is causing him problems and, unless they hear differently from his school, they will discharge him”. This knocked me for six as the psych evaluation he had done suggested ADHD was quite prevalent and the SENCO at his school is actively supporting us and his teachers to support him with traits if both ASD and ADHD.

I emailed his SENCO yesterday with my head in a complete whirr because my biggest fear is that, again, we get left as a family to deal with his aggression and complete shut down when it comes to making any effort for anything. She was, as always amazing and immediately put my mind at rest regarding how she will help support us BUT that is such a long way off – especially with lock down.

In the meantime – every day we have the same battle. His lack of motivation to do ANYTHING except play on a device. It doesn’t matter what game – he was even caught playing that ruddy dinosaur game that Google puts out when they are offline! It is just the idea of being in front of a screen playing that obsesses him.

His (and DD’s)  school has set them an Easter challenge which involves doing a variety of different fairly fun activities (for the main) and I thought that, to save me the energy of having to set up two logs that they could do it together – to eliminate the competition between him and his sister.

Great idea he says – I can do that….until the point that it actually involves some work.

One of the tasks is create a board game so, enthusiastically he suggests a mine craft style game (he is OBSESSED with that bloody game!) and, against hubby’s better judgement, they started creating the board game. Great! Enthused, full of ideas, and….. bam – as soon as there is any work involved DS1 is doing everything he can to not do anything which has left DD and Hubby creating the game on their own. Suffice it to say DS1 will not be getting any credit towards the game as, in my mind, that is just piggy backing the effort and input from everyone else whilst doing nothing himself.

It is this way with EVERYTHING we do – always – and we are constantly regurgitating the same conversation with him. He is a bright, intelligent, very capable young man who is just lazy more often than not. And I know we aren’t ‘supposed’ to use this terminology as “it is damaging to his mental health” but it is the truth. I have had armchair experts telling me that he simply isn’t engaged – find something or some way to engage him – well we have tried, we have adapted, we have amended but there comes a point where you have to say “actually it is laziness!”

I just feel like this is a battle I am losing rapidly and it hurts so much that I cannot find a way through to him. 😥

Willow Tree Angels

Facebook Post 1st April 2020

Hey Beannie,

Your little sister just came up to me and handed me a piece of paper with something she had drawn on it. She told me that she knew I was sad that I couldn’t get to a shop to get your Willow Tree Angel today so had drawn me one in order for me to have one today. It is truly the most beautiful thing I have been given and I will be getting a frame for it as soon as I get the chance.

When did I get so lucky to have had you in my life for those 12 short weeks and her for these amazing 13 1/2 years (so far)?

Shine high my beautiful boy and help keep us all safe.

Love from

Mummy.

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Safe At Home Day 7

Facebook Post 28th March 2020

Safe at home day 7 – We completed a week’s worth of school and submitted as much of it as we had done – pretty chuffed with the amount they did in the first week. Beating the rush and downloading all the secondary school stuff into drop box today so it is ready to beat the tech issues we had last week.

Loving the response that both schools have put in place. DS2 loves his comments on his work by his teacher and love that the secondary school are going to start checking on the mental health of their pupils starting this week coming.

I was actually quite impressed at how calm I was on the whole – a couple of near misses but actually less than on a normal week so – all things considered – a positive week.

Kitchen School Day 4

Facebook Post 26th March 2020

Kitchen School Day 4.

We are finally starting to get used to this kitchen school lark and have started to settle into our routine.

We were never going to be the family who “had a week off” because we knew that it would need to be done at some point. I also know that at least one of mine is extremely anxious when they don’t get their lessons so we had to accommodate that.

Both schools have been great in establishing lessons for the munchkins and we have had contact with teachers at both schools when things weren’t understood or anxiety was causing a mini melt down.

We haven’t got it quite right yet but, for now, it is peaceful.

Our SENCO has been amazing as well – absolutely amazing!!

Kitchen School Day 2

Facebook Post 24th March 2020

The Kitchen School – Day 2.

Started off with some PE courtesy of Joe Wicks (Get in!!) and children ready and willing to learn but the tech is currently letting us down. Struggling to get onto the DL website to access their resources so looks like I need to print them off to stop the frustration. Good job we stocked up on printer ink.

A slight meltdown with youngest – because he wanted one iPad instead of another but CBeebies Island game has now calmed him down.

I think a walk around the garden looking at the mud will be needed later.

Kitchen School – Day 1

Facebook Post 23rd March 2020

 

Kitchen School – Day 1!

So this morning has been fairly productive.

Got up at the usual time, breakfasted and dressed ready to go to our hospital appointment. Benjamin’s blood pressure is all good so his dose has been doubled to help him continue developing with his ADHD under control.

Got to the dairy for milk and yoghurt, the pharmacist for the new prescription and home…..only to find the internet playing up!!! Argh!!!

No panic….

rebooted and all children quietly sitting doing school work at the moment apart from Fran who is currently under the watchful eye of the baby-sitter known as Winnie the Pooh.

I am really impressed with them so far….so far.

ADHD _ What’s It All About?

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ADHD….What is it all about? Why are there so many misconceptions about it? Why do some people find it such a negative thing? Probably because of the myths and lies that have been bandied about by people who simply don’t want to admit to it being a neuro-diverse condition or use it as an excuse for something they don’t want to address.

Let’s start with the first part…..

What is it all about? Well…for anyone who knows me I see life in pictures and always try to explain ADHD in a picture….so here goes…

The brain transmits information using dopamine. That is point one.

The brain is like a shower….bear with me…..

The shower head is the dopamine transmitter…the bit that send the information off to tell another part of the brain or body to do something….get ready for school, eat, tie your shoe laces….whatever…..

The water is the dopamine….gushing out of the shower head carrying all that information.

The shower tray is the dopamine receiver….pulling the water down the plug hole and sending it off to the right place.

In a neurotypical brain (a non ADHD brain – I won’t say normal as that is insulting and “normal is boring”) the shower tray works perfectly. It collects the water in the bottom and pulls it through to send it off.

In an ADHD brain the hole is partially blocked or only very tiny. This means that water that should be going down its pipes is simply bouncing back of the base and back into the downpouring of water….splashing back up adding information that hasn’t been processed into more information being sent to process….a mess of information that is too much to decipher and sort.

So here we come in with medication…..a lot of people have the misconception that ADHD medication is a sedative….I did originally….and that is partly fuelled by the likes of Oliver North publicly blaming “zombied up ADHD kids for mass school shootings” (this is a downright lie and there has been no proven link or diagnosis but it adds to the myth and misconception).

Anyway..I digress….I do that!

Back to medication and our shower….

ADHD medication is actually a stimulant…..and it makes the receptors work harder…essentially it drills holes into the shower tray or unblocks the plug so that more water can be pulled away from the tray.

The reason it has a calming effect is because there is less water (dopamine/information) bouncing around. The brain is a calmer place now meaning that the person is calmer.

One Step Forward

Facebook Post 7th February 2020

One step forward, two steps back.

We are told so many times about a child’s mental health being of paramount importance but what about the parent’s when they are crying out for help and literally running on empty? How are we supposed to continue supporting our children in the best way possible if people keep passing the buck or simply ignoring the problem?

The health visitor, ADHD solutions and the GP have all acknowledged that we and the youngest need support…..only to be thrown straight back at us with almost nothing. Early intervention? What the hell even is that? Nobody seems quite sure.

😥😭😠

Why Can’t I?

Facebook Post 29th January 2020

 

I went to the Local Offer SEND roadshow this morning and spent a fair amount of time chatting to the gentleman on the Autism Outreach Team as it seems we are staring our journey with a possible diagnosis soon……

We chatted for a while….he gave me ideas…..I told him what we already did.

He told me quite firmly I was an amazing mum……

I couldn’t just take the compliment….told him….no…I make far too many mistakes and am too hard on my children……wouldn’t take the compliment.

I am not fishing for compliments now by the way….I don’t believe them.

Why is it so very hard to say “actually I AM doing ok. I have got this”?

Why can’t I take the compliment. 😞

On another note…..had confirmation from the GP today that she was referring the youngest to paeds outpatients for possible ADHD diagnosis…..he is so exhausting!