Failings and dwellings

I’ve had too much time to think and dwell on things today. Working from home means that:

a) I concoct some fantastic plans in my head that are highly unachievable but limitlessly dream-like.

b) I eat tons.

c) I ponder on all my failings and successes in life.

 

Jude. So many things I could have done to help him more but here we are, 10 years after his birth and we still do not have all the support and resources he could really appreciate. Physiotherapy and Occupational Therapy (OT). I know I mention them a lot and it’s taken quite a few years for the enormity of this to kick in but the reasons Jude was turned down by our local Children’s Centre (NHS Trust run) are appalling. So at 5 years old, Jude was turned down for physio (in Hertfordshire) because he can walk. YES, he can walk and this is fantastic but there are so many things he can’t do. He can’t climb a climbing frame, stairs without a bannister are still a worry for him, his movement is so awkward and his clumsiness is off the scale.

 

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Even walking looks uncomfortable to Jude – see how his arms don’t relax naturally? I don’t know how to help him physically and it’s awful. He has had a lot of help from school facilities and when he moves to his new school in a month or so, I’m hoping it’ll only get better. I’m also fearful that we’re too late and by 10 years old there isn’t a lot we can do.

 

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OT – Jude was turned down for this, aged 5 because his concentration wasn’t good enough. Yes, a 5 year old was being judged on his concentration. Not just any old 5 year old, one with severe learning disabilities and probably the mental age of a 2 year old.

 

Are these people insane?!!

 

I saw this article today that backs up my lamentation regarding health and social care for disabled people. Don’t read the whole thing, it’s too depressing. I copied the below paragraph from it, for you:

“Care for people with learning disabilities was rated on the proportion of patients receiving annual check-ups and their ability to keep patients out of hospital. No CCG was given the highest rating of “top performing” and 193 out of 209 were deemed to “need improvement”.

 

What else is there to say? I have contacted the Children’s Centre today so we’ll see what they come back with.

 

Moving onto my initial issue with working from home…point a) my fantasy plans for the future. They largely involve living on a farm on Ibiza, growing fruit and vegetables, adopting at least 50 cats and dogs and having endless picnic parties on the beach. Look, we’ve already started the vegetable growing!

 

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What are your future dreams??                    Star1

Sparkles & Stretchmarks Sunday Best

Spectrum Sunday

Comments

  • The UnNatural Mother on

    Alice, read https://topsyturvytribe.wordpress.com/2016/09/11/a-simpler-life-escaping-the-rat-race/ ( it’s in todays linky ) Move to Ibiza and build the farm . X #FamilyFun

    • admin on

      We will 🙂 Once we have sorted out a few minor details I’m going to be on that plane x

  • tammymum on

    Sorry to hear you have struggled to get the support you need, I have heard this so many times and it is so upsetting. I know how hard that battle can be and it feels relentless at this time, I really hope you get it soon. Ahh and good luck realising your dream – I hope to read a post written from your farm in Ibiza! xx thanks again for linking up at #Familyfun

  • Accidental Hipster Mum on

    Did you really grow that sweetcorn? I LOVE sweetcorn!

    It’s a shame you’re not getting the support you need, at least blogging about it should raise some awareness, are you tempted to get in touch with your local press? Your treatment might improve x

    #FamilyFun

    • admin on

      Hi there, Yep we grow all sorts…allotment geeks at heart. Yes, the local paper did an interview with me and amazingly enough, having hassled them to death, I have been offered a meeting next week to discuss support options wahhoooo xx

  • Two Tiny Hands (@IsntitprettyKTB) on

    I can second the running away, growing veg and having picnics on the beach. I’d probablt stay in the UK though! It is rubbish the lack of care you seem to have been given for Jude. There are no excuses, keep writing, make people aware. thanks for linking up to #familyfun

  • Helena on

    I’m sorry to hear that you feel like you’ve been failed. #SundayBest

  • Sian QuiteFranklySheSaid on

    This makes me so sad and angry. It’s not fair at all! The reasons for Jude not getting the support he needs are just…. absurd. I hope you can get something sorted. Thanks for linking up to #SundayBest x

  • Rainbowsaretoobeautiful on

    Sorry you haven’t been getting the support for Jude that you think he needs. I hope you get something good back from the centre soon. In the meantime, stick with the dream of growing veg… it’ll e so much healthier when you do c) eat tons! Thanks for joining #SpectrumSunday, hope to see you again this weekend

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