"My youngest son finally received an EHCP just as he was about to go into Y10 in 2019 and his Autism diagnosis in 2020 just as we were heading into lockdown. I say FINALLY as I started the journey when he was 6 years old.
Sadly, this all came too late as he struggled to cope in mainstream education and by the time he was 15 his mental health deteriorated and he had a breakdown. It started at nursery school where he would cry and scream going in, this carried on throughout Primary where he would also run out and beg me to take him home. End of the school day we had to cope with the biggest meltdowns. I spoke to the primary school about my concerns, applied for a statement (the old version of an EHCP) as I felt he needed more support in school, and the paperwork was sent off for an ASD diagnosis……. BUT all was refused due to my son masking in school and I was made out to be a neurotic mother who didn’t want her last child to grow up. I even had the Educational psychologist come to our home and laugh in my face while saying “Why are you doing this? He isn’t autistic and doesn’t need the support”.
So I decided to gather as much evidence together as I could to support my case. I paid for an occupational therapist who diagnosed sensory processing disorder and dyspraxia, and after a year of waiting for his school to contact the educational psychologist to arrange a dyslexia test which I paid privately for and was told he has severe dyslexia. When I took the report to the school, I was told the Ed Psych would come in and do the test a few days later to make sure it was correct. So my son did the tests again and the Ed Psych said “yes it’s correct he’s dyslexic”.
Support was hit and miss and eventually became non-existent. He left Primary school and started secondary school, still the mornings of battles to get him dressed and in the car, then into school continued. Again I talked to the SENCO about applying for an EHCP. who dismissed my concerns, two more years passed still gathering evidence and luckily he had a new teacher start that had experience of working with Autistic children and she saw it in my son ……FINALLY I was believed. A new SENCO started at the school who also agreed and supported my application for an EHCP and to go for an ASD diagnosis again, they put things in place to support him while we waited.
Throughout the years, we had input from 0-25 Team, PET team and Youth and family support, all three were unhelpful and inconsistent. 0-25 Team – We had two workers in a short space of time as they were moved into different departments but they didn’t inform me, I only found out after not hearing from them for months so I contacted them. We were told someone else would be placed with us, I heard nothing again and that was 2 years ago. Youth and Family support – We had someone visit, tell us what support they would give and meet my son. They arranged a day they would do a second visit and a time, it was a time I’d have to collect my son early from school for the visit. So I prepared him and reminded him, picked him up from school and waited. They never came. I phoned her mobile number and sent a text….no reply. A week or so later I received a message from the person saying her phone had ran out and her charger was at the office so she couldn’t contact me. No explanation of why she didn’t come as planned and no more appointments were arranged. We never heard from the them again.
PET Team – came to visit, said “oh I am looking forward to working with your son, I will be able to help him and support him”. When she left I felt so happy, it sounded like we had finally found the right help. A few days later I was told … “He doesn’t fit our criteria so we can’t offer any support. We can pass you onto the Youth and Family support team”. I said after our last dealings with them I didn’t want to put my son through that again as we keep bringing different people in to help and they do the same thing, either say he doesn’t fit the criteria or not return. There seemed to be no consistency from these agencies, which children with SEN need and it was all empty promises of help. I finally received a decision from ERYC for the EHCP, again it was refused saying enough support was in place and he didn’t need an EHCP. Myself and the SENCO disagreed with the decision and she advised me to go to tribunal and contact FISH who passed me onto SENDIASS to help. With their help we received a change of decision the night before the tribunal and my son was granted an EHCP. The SENCO said to me that my son shouldn’t have been in a mainstream secondary school as it was too much for him to cope with. She sadly left the school and another SENCO came who called me and we had a meeting with ERYC in which I was advised to make a decision, either find another school or home school my son. I told them that I didn’t agree with either options and wanted to wait so when my son was well enough I could make a better decision.
A few months later I received a call from ERYC and when I mentioned my son’s school I was told “he’s not registered there anymore”. I phoned the school who told me he was still registered, I rang the council back and the person I spoke to didn’t know why he was still on the school books as he was definitely not registered in the paperwork they had. My son is almost 18, now on antidepressants, rarely leaves the house and still becomes panicked when anything to do with learning/education is mentioned. I am hoping at some point in his own time he will gain the confidence in himself to explore learning again and be able to engage in a work environment but until then we will support him with his mental health and confidence in himself until the rest falls into place.
Early intervention is key and so is consistency. I feel if I had been believed early on and my son given the support and earlier diagnosis of ASD there is a chance that our outcome may have been different. Why does everything have to be a battle to get our children the help they need? Parent’s not being believed? As one professional said to me “Parent’s know their children best”."
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