CP & Me -Archies Story

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CP & Me -Archies Story Showing the life of a little super hero
Raising awareness for cerebral palsy , micro prematurity , autism , chairi malformation Type 1 , & SDR Surgery .

This is Archie’s story �

Morning !! I know it’s been a long time since I posted life has been very hectic with the boys and being at university b...
14/03/2023

Morning !!

I know it’s been a long time since I posted life has been very hectic with the boys and being at university but thought I’d do a little catch up on what’s been happening .

Some Big changes this year ….
archie is leaving primary and going to secondary school 🙈🙈
we found out in feb that archie got our preferred choice of school which is brilliant!!
The down side is we’ve had an absolute nightmare with Archie’s EHCP.

It had to be amended and the finalised one is now missing so much information that Archie’s current school put in . Missing vital info from myself aswell , so now Archie’s stuck with an EHCP what’s meant to be a legal document which doesn’t reflect his needs at all !!!!

5 weeks myself and the school have been trying to contact Archie’s case worker with no response !!
Not only this the local authority have only given us our choice of secondary school on the condition i don’t apply for transport.
How bad is that !! ??

Never mind it’s the only school within the area that can meet Archie’s needs 100% …
I know this because our catchment school told us they couldn’t meet his needs . Archie is entitled to the transport as it’s over 3 miles and he has a physical disability. So now I have to take the whole thing to mediation !

As well as this , Archie’s brother got rejected from cahms 3 times !!!! To which I then had to go down the private route of getting him assessed for adhd . Over the last 6 months we have been paying privately for his medication which has completely transformed his life as well as mine . We are now waiting to see if the NHS will accept shared care so we can move his prescriptions over . I have no doubt this this will probably be another fight .

Anyway my point is . Is that both my children are entitled to basic needs that are beyond their control as vulnerable children and the fact that I have to fight with everything I have all of the time to get any of these needs met is shocking !!

The system is broken and it’s failing children all over the uk !!

3 days untill the big day …..How ever you spend it , what ever you do or don’t do, where ever you go or don’t go …and al...
22/12/2022

3 days untill the big day …..

How ever you spend it , what ever you do or don’t do, where ever you go or don’t go …
and all these big extravagant Christmases you see all over your socials are not how it needs to be for everyone to mean it’s a good Christmas

Just Know that your a great parent and are doing an amazing job regardless of how you spend your day ♥️

# Photo of the one and only Christmassy outing we’ve done and will be doing and that’s good enough for us ✅

16/12/2022

Please tell me I’m
Not the only parent who isnt jumping for joy at the thought of the kids breaking up despite it being Christmas ? I just know how difficult this half term is going to be managing change and children with adhd /ASD 🥺

15/12/2022

ADHD amplifies a persons emotions by impairing the ability to regulate feelings such as anger , sadness and anxiety ect .. this leads to being dysregulated which can effect behaviour and everyday life.

13/12/2022

Tonight would have been Archie’s last ever primary school Xmas concert .
He is not taking part as he just can’t cope with it ..sometimes all my armour just falls off and it gets to me a little that his struggles limit him 🥹🥹🥹

Joy of Autism
12/12/2022

Joy of Autism

Joys of Autism 👌🏽
09/12/2022

Joys of Autism 👌🏽

08/12/2022

Archie has been working hard recently and can now name ALL 254 flags in the world and their countries 😱🥰

04/12/2022

Its hard to feel Christmassy when your an autism household .it feels like a month full of festivities that family’s like ours just find it so difficult to take part in ..our experiences are so different and that’s why this time of year can be hard 🙏🏼

I’ve seen the term used a lot recently “adhd is a superpower “…To an extent any diagnosis brings some type of strength a...
03/11/2022

I’ve seen the term used a lot recently
“adhd is a superpower “…

To an extent any diagnosis brings some type of strength and resilience yes , but …

I completely disagree with this super power term .
ADHD is one of the most difficult and challenging things to have to live with and for many their homes are in turmoil because it can be so hard to manage , it’s far from a super power …

Dr Russel Barkley explains everything so well !! Really insightful information to parents of individuals with ADHD ..

The original video is from the 2012 Burnett Lecture located here. This is the very end of the 2nd vidoe right before the Q&Ahttp://learningcenter.unc.edu/ld...

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