info@action4send.co.uk

We just want to be a normal family without fighting

I Lorraine Madden give my consent to ACTION 4 SEND to share my story publicly online for the benefit of shared understanding. I agree to the terms of conditions set by Action 4 send for the benefit of my personal data and that Action 4 SEND are GPDR compliant. I believe that my shared content is the truth and I will not name individuals or schools.

My son is 15, we have had years of fighting to get diagnosis firstly for epilepsy saying we needed to video the seizures before they believed us.  Then after the epilepsy diagnosis we experienced suicidal thoughts and tendencies after another fight to get help we eventually got CAHMs on board and they stated they thought he had autism as well as his outreach worker at the time.  They told us we would have to fight for a diagnosis they were totally right just over two years and we now have the autism diagnosis, the psychiatrist who assessed him from cahms said he has ADHD as well we are still fighting for this diagnosis.  We are really struggling as a family as my son is having violent meltdowns and is really struggling at school.  We have been told we need an EHCP plan to get him the right support at school and then for college.  He was diagnosed last year with dyslexia, visual stress and sensory processing.  We had to go private for the dyslexia.  It’s so sad that my son had struggled at school so long and this was one of the reasons why.

My son really does not cope in the school environment due to his struggle with his social skills and sensory issues.  We cannot get him into a special provision or any extra support without an ehcp plan. We were told told that school would apply once we got the ASD diagnosis which we got last November, they contacted the EHCP department at the council and they were told it would get rejected if they apply we need to apply as parents.  We did this just before Christmas and it was rejected the first week of January saying school are providing enough support even though he is under in all his subjects and struggling.  I contacted our local sendiass whi told me to ask for mediation and to tell them we would take to tribunal as my son has high complex needs.  I employed a Sen solicitor to do a letter this worked and they have agreed to assess.  It is exhausting going through this process.  We are only at the start and have been told that they may not agree to do the EHCP.  In the meantime my son cannot cope is suicidal has low self esteem. We dread getting up each morning wondering what the day will bring.  What he will be like after school when he comes home.

All this fighting is affecting my mental health and my family’s health.  I am waiting for counselling due to stress and anxiety and I have started having panic attacks. I have been on the IAPT list since August last year.  My youngest son has had counselling due to coping with his brother.

.ore needs to be done to help us, we have been refused a disability social worker as we do not meet the criteria at the moment even though we are at crisis point with my son’s violent meltdowns.  We had to phone the police last week to help with a violent meltdown they saw we are at crisis point and contacted social services.  We still have not received any support.

We want the fight to end so that we can be just a family.

  • : facebook
  • : 15
  • : Male
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  • : ASD, epilepsy, SIBO, dyslexia, visual stress, sensory processing
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  • : Secondary
  • : Academy
  • : Kings Leadership Academy
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  • : yes
  • : yes
  • : no
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  • : yes
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1 Response
  1. Thank you so much for sharing your story. We will endeavour to use this as evidence that the EHCP process is emotionally draining for families and the impact it can have. I hope things improve for you all as a family soon.

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