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
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.
Via train, to Bristol!
Was a great trip, we went to see the Neuropsychologist, Neurosurgeon and Neurologist.
This is the trip in pictures:
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.
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!
We went to a “family fun day!”
I know doesn’t sound a big deal…. it is a BIG deal!
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!!
I gave myself a little high five and we left, a whole 35 minutes after arriving!
So over the last few months I have been pondering, as you do, what the actual physical, emotional and financial cost of having a Reed!!
The physical and emotional stuff needs a little more consideration and occasional perspective… see my personal Facebook page for a running commentary on those shinanigans. For this purposes of this post I am going to focus on the financial cost…..
So you would think they wouldn’t cost you anymore than any other child, this in my experience is simply not the case!!
Aside from the relentless appetite I am going to list the things, off the top of my head, from the last three months that have cost me, that perhaps wouldn’t have done if Reed wasn’t Reed…..
(That’s not to say I want to replace him, but I would bloody love to know how to better support him!)
6ft fence in garden £700, stop him from climbing over and hurting himself or breaking stuff.
3x trampoline at each house he goes to regularly £300; to meet relentless sensory needs.
Sensory toys/weighted blankets/other equipment £260; they might work they might not!
Pram to attach buggy board to encourage Reed to stand and avoid having to sling him or shelling out the £800 for a disability one that is big enough for Reed and Carter to safely be in together.
Water bill…. for the endless baths and water play…. cost unknown but the kitchen ceiling holding for dear life!
Neighbours wall being smashed – likely above £100
And to finish off (main motivation for this story)
1x bottle of shower gel each day £2.20 per day £15 a week
1 x mummies face cream £15.00
1 x mummies shaving gel £7.50
And 1 x piz buin factor 30 light (reminds mummy of holidaying in Marbella pre children and for a split second whilst applying I remember the freedom and possibility it represents) …. luckily Reed knew all this and it’s all over my living room to remind me!
So without looking through the financial shizzle I just waffled on about it equals a shit load!!
Off to google selling a kidney to fund the next round…. good job he is cute!!!