Finally a EHCP and a Choice of school

Good morning everyone

After nearly three years of fighting , challenging and what feels like banging our heads against a brick wall at times, we have finally got our EHCP! For our adopted son who has been diagnosed with FAS by genetics.

The school our son is at present, although we have given them all the health records, Peaditrican reports, social workers reports and even reports from the FASD trust and even tried to get them to engage with the trust! In their report the Senco teacher reported that the school didn't have an issue with our son and this was a parent request and down to bad parenting style!

Anyway , to strengthen our case we employed a education psychologist , who's findings was shocking !, although he has recommended our son stays in mainstream we feel as he does this school is not suited for him and subsequently as he gets older, he is eight at present , we feel looking at the world wide evidence of FASD that he will not cope.

Thus our question is this, how many parents have moved the child with FASD to a special school, and if you had the chance would you like us?

Sorry for the rant but like many other parents , this has and continues to be a struggle , due to ignorance, training etc.

Regards d

15 Replies

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  • My adopted son is now 10 yrs and in yr 6 so we are in the process of applying for Sec sch. It has only recently been realized that he most likely has FASD and up until now his increasing behaviour problems have been blamed on me! I have selected a 1st school choice of the one (not our nearest) that has an excellent support department and encouragingly has experience of other pupils with FASD. My sons Junior School has also been far from helpful and are very dismissive of my corcerns and are now very patronising in their responses. At the moment we are stuck at the first Hurdle of seeking a diagnosis. Been seen by a comunity Paediatrician but because the facial features are subtle he would not make a diagnosis even though the evidence of drug and alcohol use in pregnancy is known and my son exhibits all the associated behaviours and difficulties with cognitive understanding. However, I personally will try mainstream first as I am not sure his ability fits with special School either as many there have a more profound learning disability. Secondary school have already indicated that if my son goes there they will help get an EHCP and commented that most of the junior schools don't want to do so.

  • interesting have heard on grapevine and experienced ourself the primary school being reluctant to get EHCP but senior schools demanding one.

  • We have lost count of the amount of times we have heard this as well. We are forming the opinion that: is this due to money; or junior schools are not bothered; or are the worried they lose children.

    Just seems a shame that our children suffer, when the facts are so evident .

    BW D

  • Doesn't really answer you directly but we are in the process of an EHCP for our adopted son, his due to start school in September 17 so I'm currently looking at mainstream schools, I'm shocked by the lack of understanding of FAS in almost every school I've visited- I've been informed that even though he has sensory issues he is best at mainstream not for him but because and I quote from our local paed 'his not special needs enough to go to a special school, there's much more needy kids out there in this area'. So special needs schools have sort of been blocked for us, we're looking for smaller mainstream schools where hopefully we can shout loud enough so his not forgotten, lost or labelled!!

    He came to us with his diagnoses so in a way we were lucky we didn't battle through that stage but I'm constantly told by nursery etc that it's my parenting that makes him the way he is! And I've brought so many books on FAS for them to read but low and behold they have no time!

    Hope you find the best route for you both and your son :) x

  • Hi Nicole

    Thank you very much for the message, we are sorry to hear that you have been suffering as well, it seems to be a constant thread with everyone that schools, Social Services etc do not engage with the information.

    Our school senco teacher will not deal with us now, we have the head master looking after us, which is strange and in our view very unprofessional!

    Thank you again and we wish you the best of luck

    D

  • I'll keep this v brief for now as I should be on school run, but our 12 year old moved to a special school for children with speech/language/communicationneeds. It is of course not a perfect match but 100 x better than mainstream. No regrets at all. Good luck, even if they agree to special school, your council will try to push you into the cheapest one for them, so keep up the fight !

  • Thank you for the reply

    D

  • Just to say to anyone for whom mainstream is not working, there are many types of special school, state run and independent, and there are directories listing their specialisms. Depending on your child's issues you might look at schools for specific learning difficulties (severe dyslexia etc) , language and communication needs, high functioning autistic spectrum or behavioural issues. Most specialist schools accept that these things overlap. And if you find the right school, press the council into paying fees and transport, it worked for me.

  • Sadly your story sounds similar to mine. My son is now almost 15.

    He was adopted by myself when he was 2. Social services didn't declare his FASD and I fought for his diagnosis which I finally got when he was about 7.

    He has an educational statement which is currently being changed to an EHCP.

    His behaviour is so hard to manage and despite reading all the books, attending play therapy and more recently family therapy. Having theraplay and him taking ADHD medication. Nothing seems to make any difference.

    I tried him in mainstream high school but he became more and more withdrawn and although the school had a really good learning support department getting him to school was just another daily battle.

    He now attends a specialist school but funding for this was another fight! He has class sizes of around 6 other boys and although his progress is limited he seems happier more settled and has the confidence to attend after school clubs which he hasn't done since primary school.

    My advise would be to look at specialist schools these are different to special schools. Funding is available but you have to fight for it. I was about to go to court when our local authority agreed finance and from what I gather this is quite usual.

    I have just learnt about a clinic in Surrey that specialises in FASD and I am hoping to take him there for an assessment. I am hoping this may give me a better understanding of his abilities and how best to support him & manage his behaviour.

    I feel your frustration and understand your struggle, and wish I could paint a more positive picture.

    Best wishes

  • Thank you very much for sharing your story, struggles and battles with a system that doesn't understand.

    Good luck with your son and the clinic, we had the immense pleasure of meeting Dr Muchherjee ( still spelt wrong ) he is amazing and very supportive.

    Regards Dave

  • Hi Dave,

    After finally getting a diagnosis of ARND, and then an EHCP, I managed to get my adopted son a place at a special secondary school. Although very articulate, my adopted son struggles with expressing his needs and asking for help. Mainstream primary school became particularly difficult for him in Yr 3 (this is when teaching becomes more abstract and children are required to do more independent work), and became increasingly more difficult as each year went by in Yr 4, 5 and 6.

    Therefore, if I could have moved him in Yr 3, I would have done, as I feel this is the critical cut off point.

    He has now gone to a special secondary school. Here, the positives (teaching style, teachers trained in special needs, small class sizes, individual teaching plan, emphasis on life skills, great parent support/communication) far outweigh any negatives and I would highly recommend.

    Thanks

  • Hi Dave,

    Our boys, aged 7, have had an ECHP since reception class but it has not helped us at all in getting any support in their mainstream school. The school refuse to admit they need more help, always saying they are doing 'so well' - even though they are still at reception age academically! (now in year 3!)

    For the past year & a half we have been trying to get them into special school, with no support from their current setting & were distraught when they were recently turned down at the special needs educational board - only because both the school & county SEN team had submitted late & incomplete papers! We are at our wits end over this; we feel that special school would be ideal for the boys but just don't seem to be able to get them there! (We had supporting evidence from Great Ormond Street hospital, SLT, Occ Therapist, SW & Paed !)

    If you find a magic wand please wave it our way!

  • Hi I fully understand how so many of you feel when your told it's your parenting that's the problem . We fought for 4 years with my grand daughter knowing there was something not right , we now have a diagnosis of fasd but like a lot of you the school does not see there is a problem with her. Senco came with me to see the dr so heard it first hand but still do not seem to be doing anything to help her. We also gave them lots of information about it and that they have to be thought differently but this is not happening. They also do not understand when I tell them she has meltdowns when things get to much for her or does not and can not always do the work set for her. She struggles with reading spellings and numbers and a lot of every day things down to doing up her buttons as well as cleaning up after going to the toilet. All we ask of the school is for them to help her more but it always seems to much to ask.we have thought of moving schools but this could also be to much for her at the moment as she does not deal with Change very well. Sorry rant over .

  • My son is in mainstream school, I am fighting for his dx of fasd but he has SPD, ADHD and in process of assessment for ASD.

    He goes to high school next year and As I don't have an ehcp but have applied for one I have picked a smaller school than the local high school. It also deals with ASD and has a unit specially for kids with ASD so am hoping they are well read in additional problem kids.

    Yes if I had an ehcp I would have applied for a special school.

  • As the thread here shows, it is very individual to each child and their ability and each local authority and their provision. There is no "right" answer other than what you know in your heart is "right" for your child.

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