First day at school… 

Today is Reeds first day at school. 

It has been a long and arduous journey to get Reed into a placement that will be able to meet his needs. 

I have worked tirelessly to get Reed and our family all the support we require to function. 

I have mentioned before the costs associated with getting this level of care; including giving up my job, loosing my sanity on occasions, yelling, moving house, employing a legal team and the breakdown of my marriage. 

But as I sit here I do so proud that I never gave up, happy in the knowledge I am getting close to what my beautiful family needs to allow us the chance of succeeding in this life! 

Reed, I was so proud of how you went into school today and looking forward to you growing and learning. The road ahead is long and uncertain but we will always be by your side. 

Feedback from school was great, Reed did well, he had “that man called Dave” who was his 1:1 care worker and they did all sorts. 

Having spoken to the teacher they have never undertaken this type of arrangement before, which is great for us to pave the way for other children who may require specialist care but not yet of school age.

He is looking forward to going back “another day” because he “went to school yesterday and play in soft play”

Annabelle saw him and the first thing she asked was “you like school Reed?” For Annabelle and Carter, it’s tough I am sorry, but thank you for sticking in there and becoming the most beautiful little humans I could ask for. 

X x x


There may be light after all! 

So not sure where to begin but the last, forever, has been working with many many agencies and social work teams to get them to pull together a plan to support not only Reed but the family holistically. 

From what I have experienced this has been arduous, dementing and completely counter productive. But in the last month I may be getting somewhere close to finding a sustainable resolution to support the Education, Health and social care for Reed and the rest of us. 

It has been at a cost, not just financial but an emotional cost. For as long as the county has been procrastinating and Reed behaviour getting increasingly challenging my capacity to function has been impaired, nursery has reduced its hours to ensure the safety of the other children and I have had to close my business with immediate effect to name just a few.  

Only when everything has broken down and the impending legal review that I have instructed is starting to evoke some action. 

Reed is incredibly complex and his needs surpass the understanding of the majority (including me!). For most with more formal diagnosis there is an expected tragectory of learning, development even if this is a spectrum, there is a way of researching and applying strategies and related professionals to offer guidance and support. Reed does not fit into any physical or metaphorical box. He is truly unique and this is very isolating when dealing with professionals who are struggling to understand the complexity too. 

There is regularly a misunderstanding that Reed will be triggered to behave in a certain way and that if we change our behaviour and identify and remove triggers that he will somehow become manageable. Due to his significant brain injury and brain dysfunction this is an element of supporting Reed. The way to support Reed is to have a constant and close support worker/parent within reaching distance of Reed during his waking hours. This is the ONLY way to stop injury and damage. His behaviour is extreme, unpredictable and mostly (bar normal sibling rivalry stuff) unprovoked with no understanding of consequence. This information has been shared and every setting, bar home, Reed requires more than 1:1 care. What I have been working to prove is that this should be extended to the home. I even MASH referred my family to get them to understand the impact of behaviours that I am struggling to support. 

So after months of emailing, taking my concerns to increasingly higher level workers within DCC and a privately funded judicial review there maybe a glimpse of action. 

Education have allocated a place, at The SEN school of our choice part time from April and then full time from September. 
Health have identified their plan, which I am not sure I agree with but will reserve judgement but will continue to apply the pressure on. 

Social care are finally opening their ears to utilising the evidence shared with them to pull together and fund a plan to support the needs of the family. And not dissimilar to Reed beginning to understand consequence if they do not ACT. 

See loads of people assess and listen to the struggle but there is little or no Action taken on the advice. E.g. Reed needs a behavioural management plan to be used to provide consistency in all settings, which I fully agree with but then you ask who is going to be responsible to create, implement and review this there is radio silence. 

As a SEN mummy you are not just a mum, but project manager, behavioural support worker, education lead, risk manager, negotiator, financial planner, cook, cleaner, handyperson, advocate, social worker, medical professional, researcher, contingency planner to name a few which is emotionally and physically exhausting all the while you are expected to wash and dress well, be emotionally secure and under complete control so not to appear like a raving lunatic in meetings and through email correspondence! 

I am off to lie down (oh wait that’s not an option, I will just close my eyes periodically and dream about lying down!) before I start the fight again on Monday! 

Stay strong SEN parents the fight is worth it. X x

A Poem

Where were you? 
It’s taken a while to settle in, Almost four years of darkness and dinn. 

A journey through a, seemingly, never ending winter. a fallen tree withered by the storm, you must have seen I was there. 

It wasn’t just me you turned to firewood, But saplings so innocent and free. 

A little fog lifted, still difficult to see there were shadows watching over me. 

Now Spring is on the horizon and the morning robin sings, roots and blossom grow at the bottom of our rainbow. 

Two Year Post Surgery Review …..

Via train, to Bristol! 

Was a great trip, we went to see the Neuropsychologist, Neurosurgeon and Neurologist. 

This is the trip in pictures: 

Reed was brilliant, feedback was that surgery was hugely successful and he is seizure free so that is all brilliant. Then there was the BUT!!! ….. 

They were amazing and great banter, amongst other things more technical we talked about Reeds behaviour like “he’s bouncing off the walls” “he is the most extreme we’ve seen” “we’d like to take him home, because he is so cool, but I would be exhausted after and hour”  they asked “Were is your support network” 

And thankfully they are going to write a strongly worded letter in support of much needed help and for our Exeter team to look at our family holistically. Fingers crossed we might finally get the support and specialist setting that Reed and our family needs. 

Halloween fun run…. 

So we made it through another social occasion… the Halloween fun run…. will go into more detail of my recent parenting appifany soon but for now know we nailed it…… 

Yep, iPad and double, joggster twist Sen, buggy and Annabelle showing us the way! 

These beauties joined us too, Reed 1:1 from nursery T Tia and Bailey her beautiful son. We also met up with some great friends. (safety in number) 

Growing more confident in doing what my children need and turning a blind eye to a few “looks”. 

We had a great time and even got a medal (and lollipop) whooo! 

Hurrah … we did something normal!!! 

We went to a “family fun day!” 

I know doesn’t sound a big deal…. it is a BIG deal! 

We held hands and listened … until there was a, fuck off, huge que for the helicopter! 

So I pulled the “brain injury” card, went to the front of the que loudly comforting Reed, “it’s okay, we can speak to the kind man, I am sure that the other people will understand…. blarr” 

I kinda went into a haze of not being able to see…. thankfully the Devon air ambulance man was super kind and we went to the helicopter! Phewwwe!!!! 

Thankfully the 5th emergency service arrived in the form of Grandad and we bumped into a few people who know us (your presence was a massive comfort -thank you) and all was now more manageable! 

We decorated lollipops and enjoyed darting in and out the rain!!

This is monumental! 

I gave myself a little high five and we left, a whole 35 minutes after arriving!