It’s not enough – a rant on SEN processes and provision.

It’s not enough – a rant on SEN processes and provision.

It’s not enough.

It’s not enough to be a dedicated parent, to give your all, to never give up, to fight tooth and nail, to bleed for every scrap of help, every ounce of support. It’s not enough.

Because the paediatrician says one thing and the LEA another and the OT knows nothing about the report that the paed said would go ahead and the person on the phone is rude and obtuse and the Headteacher is asked by the medical team if the SALT is involved, thought the medical team referred there nearly three years ago.

And all the forms that arrive are repetitive and absurd – pediatrician and EHCP and DLA from HMRC and from LEA and CDT and ATS.

‘Describe any communication difficulties that your child has.’

I have two lines to answer – and the piles of reports from Speech and Language and the Autism Team and the Educational Psychologist lie next to my pen and I must condense them, condense the struggles of my child into two little sentences – because heaven forbid that someone else should read a report or the dozens of pages, dozens of observations, hundreds of hours, thousands of words, that exist about my child, that lay all his weaknesses bare and show so few of his triumphs. Heaven forbid that someone else should live, eat and breathe this, should own it, as we do.

Piles of omninous paperwork

It’s not enough if you find someone on your side, if they finally get it and make your child’s life a little bit brighter.

It’s not enough.

Because the paediatrician cannot decide what to do and tells you on Monday that the referrals are through and a week later that it would he best to hold off and transfer to another county.

And then the referral they cancelled comes through in the post but there’s no explanation and the school have no idea and must fill in more paperwork that repeats and repeats and repeats what has already been said twenty times over.

And it does not matter that support in school is excellent. It does not matter that they go above and beyond and fill in the gaps in support with their own budget and time.

Because they do not have funding for full one-to-one and the process to get more support takes six months and twelve forms and four dozen meetings and still they reject almost all as a matter of course because the government says we must not spend. We must not spend money on children who desperately need it, on making their futures stay bright.

It is not enough.

It is not enough to have parents who care, who fight to the death to get what their child needs, who phone and chase and attend meetings and fill in forms and worry and sweat and lie awake at night.

It is not enough that I would do anything for my son, to make his life the best it can be, to help him learn and grow, to ensure he is happy.

It is not enough. And he is just one boy, with one EHCP, one school, one peadiatrician, one LEA.

There are millions of children all over the country and the piles of paperwork and the hundreds of thousands of hours spent on phone calls and visits and wasted time and wasted effort and wasted tears…

They are not enough.

 


 

12 Comments

  1. 23rd January 2018 / 2:10 am

    My heart goes out to you. I’m in the US so it’s not the same but the endless forms and circles and jumping through hoops is very similar. I hope everything gets sorted out for you soon.

  2. 23rd January 2018 / 9:21 am

    We are still at the beginning. Still waiting. Waiting. We have moved halfway around the world to wait for a fight. Thank you for sharing. I truly hope that your gorgeous boy gets the support he needs.

  3. 25th January 2018 / 1:07 am

    Hope your boy gets the support he requires. it is great that he has you to fight for his needs. It should not have to be that way. Hope the support he needs is put in place swiftly.

    • Someone's Mum
      31st January 2018 / 1:29 pm

      Thank you so much – school are actually great – but they need full funding. And he has been pretty much abandoned on the medical/therapy side at the moment. Thanks so much for commenting.

  4. 29th January 2018 / 5:21 pm

    You’re spot on with this… And I feel I can’t use all my energy on trying to get people who don’t really care on board. Part of why we’ve chosen home education for now. Trying to keep stress levels lower, not only for our son but for us as parents too. Hugs x
    #SpectrumSunday

    • Someone's Mum
      31st January 2018 / 1:27 pm

      Thanks ever so much. Our school is actually very good – it is all the other agencies and hoops to jump that make things so impossible. I hope the homeschooling goes well and helps you all. xx

      • 2nd February 2018 / 12:33 am

        Thank you. It’s good to hear that your school is supportive! We’re very happy to be home educating for the time being, so far it’s working really well for us xx

  5. Amanda
    31st January 2018 / 8:35 pm

    I too am sick of hoop jumping! My son is yr 6 with HFA SATS and a school change coming.

    Go and look at schools they said, we did and then good god we have to go through a new set of hoops, this process is completely discriminatory.

    How much time do parents of mainstream kids spend doing paperwork around education, looking at schools, attending appointments, I’m Knackered but thanks for your article because I know I’m not alone!

  6. 6th February 2018 / 9:50 am

    Honestly I can feel your frustration through my laptop – thank god he has you advocating for him! It’s a different situation I know but my father-in-law has Parkinsons and they have similar struggles. Dealing with different institutions/ bodies/ doctors etc none of which seem capable of communicating with each other. It’s honestly a case of shouting the loudest and that’s why you are doing such a great job for your son x

    • Someone's Mum
      6th February 2018 / 11:34 am

      Thanks ever so much for stopping by to read and comment. It really is about who you have shouting and fighting for you – which is so unfair for those who cannot or do not have that voice.x

  7. 11th February 2018 / 3:07 pm

    The amount of paperwork and bureaucracy is exhausting. There’s never enough time, money, energy, or people who actually ‘listen and do’. Thoughts are with you x

  8. 21st February 2018 / 10:01 pm

    My husband and I have been having this exact rant tonight. Tomorrow we have an autism assessment meeting and have been filling in a ridiculous questionnaire which gives no context or guidance and a tiny space for ‘any other concerns’ of which I have many. The endless chasing of appointments and repetition of the same story once in the appointments is exhausting. Great post.

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