Unsupported by school who refuse to acknowledge FASD as a "real problem"

Hi. I'm new to this forum so I hope I get this right. I have an adopted daughter, been with us for 6.5 years (now age 7.5) with FASD (diagnosed). I am a single parent. I moved my daughter to a brand-new school in September 2013 as her then primary school was useless. This new school promised great things - small class sizes and focus on the individual child's achievements and learning. They have failed to deliver and we now have a class teacher who, because my daughter is compliant and personable at school, basically thinks I'm making up all her problems (she also has ADD, ADHD and Executive Function disorder). At home, I get the frustration from my daughter who can't / won't show it at school, and she bites, hits & scratches herself and gets hysterical because, as she says "my brain won't work properly and I'm stupid & rubbish". I've taken to videoing these incidents at home as the school doesn't believe me. they are now forcing my daughter to learn cursive script when she still can't remember how to print properly - her short-term memory is very damaged. I want to pull her out of school and home educator her but, as a single parent, I can't afford to not work. HELP! I am pretty much wrung out, exhausted, depressed and just about every other negative emotion you can think of. I cannot bear this fight with the education system for the next 11+ years. Any advice? Anyone got an amazing school that understands and supports FASD? I am so desperate that I would move to the opposite end of the country in order to get her somewhere she can be educated properly. I am currently living in Surrey. Thank you x

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  • Echesters, I feel your pain, I am a foster carer and have had a 14 yr old for 3 years and am co cinched he has FASD I have done lots of personal research attended training and conferences ( I have always worked in childcare ) the school and psychologist have made me feel like I am making it up as he behaves in school... Well in class to be accurate and they miss most of the break time problems.. I have tried to get a more supported base in a mainstream school but as it would have cost the LA as it was a cross boundary place they refused flat.... I have had to give up for my sanity as I have 3 other children in placement 2 of which are also being let down... Good luck and keep in touch even just for support and genuine understanding x

  • thanks so much for your reply, Bernie. It's so hard, isn't it, especially when they are as good as gold at school (as you say, in class!). I have taken to videoing the problems I get at home as I began to feel like I had lost my marbles and I was actually making it up (or a bad parent - which is what I think they felt). I have a meeting with the head planned soon and I am trying to get someone from the Foetal alcohol trust to come along so they can talk about the issues of FASD. Like you, I find it extremely hard just fighting for absolutely everything and sometimes I feel like I'm about to lose the plot (never mind my temper). Anyway, thank you so much for your help and support. Likewise, I am here if you need a listening ear or the proverbial shoulder to cry on. x

  • hi u will need a learnind diss social worker to get direct payments for holiday care and respite which u are entitled to and a occupatinal therapist to work with chils motor skills and memory difficulties aproach senco at school and social services good luck tracy u are also entitled to full care from dla apply for this as well mobilty component will be on if she is over stimulated in community and her adrenelin levels will create bad and dangerous behavior hope this helps tracy

  • Thanks so much Tracy. We have a good OT and the SENCO at school knows of her difficulties. She gets DLA higher rate, but not for mobility and I get carers allowance, but that's not enough to live on as we all know! Hadn't thought about the mobility component, but our DLA is up in a couple of months time anyway so I will have to reapply, so maybe I can add that in as well. Thanks for all your help. Good to know that someone else acknowledges adrenelin levels which, in my daughter, are massively high and hard to control. Emma x

  • you should also ask for a community paediatrician appointment, we have one for our grandson who has FAS, ours has really helped us.

  • Thanks, we have a fab community paediatrician who we see every 6 months and she will come into the school for a meeting if needs be. I just want to shoot her class teacher out of the window as she's one of those people that clearly think FAS is made up (she's 24 with no children!!!) x

  • Yes, I think alot of people think that, oh also ment to mention our grandson was prescribed melatonin to help him settle off to sleep which helps a little he has just on up to 6mg. The community paediatrician prescribed these. she is brillliant. x

  • wish I could help but i too am having massive problems with my AD's school. It is an outstanding school, very small village school. Outstanding that is if your child has no special needs. My daughter is the opposite of yours in school (and at home) she is very aggressive, violent, defiant,hyperactive etc etc. she frequently assaults teachers and other children, has stabbed children with pencils and scissors. Despite being very bright she is not readig or writing, she is 5 1/2. I feel the school have no idea how to teach or care for her. I requested that the LEA carry out a statutory assessment with a view to having a statement and school said she was "making excellent progress"! and I was refused. I feel although they are really struggling they are too proud, because of their excellent reputation, to admit that they havent a clue. I could take her out, as a LAC child and put her in another school but i want it to be the right place so she doesnt have to be moved again, and only a statement will decided where is the right place, in my opinion.She comes home in a very angry distressed state every day, and is frequently told by the teacher that she is a very naughty girl. despite me giving them lots of info re FASD and attachment disorder. i am worn out wiht it all and feel the same as you,sorry for the lengthy reply. it is so hard when you just want the best for your little one, i too am single.

  • Hi there. My heart goes out to you as I know just how hard it is. Schools just don't want to know about FASD or attachment or anything like that. they would rather believe that they don't exist. Our school moved into a new building at half term and I told the school that my daughter would be best if she could come into the new building over half term and see round the space when it was quiet, so she would feel comfortable. they said no-one was available. and then I got hauled in every day after school went back so the teacher could tell me how disruptive my daughter had been and that she couldn't settle into the routing. No s*** sherlock!!! It made me SO mad. I think you're right about ofsted, but what you need to bear in mind is that statemented children don't count towards (or against) ofsted ratings or league tables (hence quite often why outstanding schools try to get lots of children who are just a bit challenging a statement so they don't bring down their league table results / SATS results). I have just paid for a private Educational Psychologist report (not cheap but worth it) which finally supported everything I have said that she needs a statement and needs close 1:1 supervision to help her learn. I am going to use this now to apply for a statement and have been told I should be successful. My friend with an AD who sounds very similar to yours in terms of behaviour at school has just got a 30 hours a week (ie fulltime) statement for 1:1 help, so keep shouting and battling and you will get somewhere. It's exhausting, though, having these fights. I adopted my daughter with my husband but needless to say he is not interested, hence now ex-husband, as she's not the daughter he wanted her to be and doesn't fit his ideal. He wants the cute, cuddly, funny child who does appear, but can't handle (or won't handle, more like) any behaviour that takes effort to manage and control. Aaaaaaaaaargh. Men, eh? Please keep in touch. We have to stand firm and get the help that these beautiful children deserve. xx

  • Hi,I so relate to your story.Our ad daughter is so similar.It would be good to know how successful the private ed psych report goes.We are in a battle with the school,2 psychiatrist report and a supportive OT report still doesn't get us a meeting with the ed psych.It is affecting my relationship with her as we have other kids,I envy the school as they do not have to deal with all the high anxiety levels as a result of their manipulation of our daughter.We are gathering evidence and are to request a meeting with ed psych before we go for a statement.Good luck to you,also we have DLA but only middle rate ,can we apply for support from disability social worker ,or am I grasping for straws

  • Hi there. Well, we had mahoosive meeting at school this week with Ed Psych, Paediatrician, OT, class teacher, TA, senco and although very positive in that all the things I've been asking for over the last term (and which I've been basically told to shut up & go away about) were agreed with by the professionals, so the school has to deliver now. However, SENCO had said we could apply for a statement, but class teacher (who is a bitch) was so busy saying how much AD was achieving and how well she is doing (which she's not) and how they're sure she'll achieve a 2c in all her subjects by the end of this year (she won't), that Ed Psych said that we couldn't apply for a statement as she's achieving targets. My argument is that I've not agreed the targets which I should have done on an IEP as she's on School Action Plus. Now we are back to the beginning, knowing she's not getting the help she deserves and needs and having to battle yet again. Grrrr. We get DLA, too, at higher rate. Seems no consistency with what you get, though ours is coming to an end in June and I will have to reapply so it'll be interesting to see whether we get awarded it again or not.

  • I can tell we are all in the same boat, as I said I have other children being let down, one is a 6 year old boy I took for an emergency placement when his previous placement broke down due to uncontrollable behaviour 8 months ago, I agreed to keep him longer to allow a suitable placement to be located and avoid the wee soul being passed around, he is the opposite to my FASD one he has reactive attachment disorder and although he is behaving well at home for me he is as you have all described at school, hitting out hiding under tables running around the school and hurting other children, the school can not manage him and there is no point moving him as we don't know where he will be living... Today I was told by his SW who is going on mat leave I a week that they haven't even started looking for a placement for him yet... I am devastated for him he'd is so distressed in school and wants to be home but picking him up and bringing him home ( like today) does not help as he is getting more and more reliant on me .... Aaaarrrggghhhhhh

  • The FASD Trust have an education forum and are providing teacher training. Dates are 7 Feb in Liverpool. 12 Feb in Southampton. 31 January in Ashford, Kent. Cost is £75 parents are welcome. If you want someone to come into school from FASD Trust email Sue at admin@fasdtrust.co.uk. Have you thought about flexible schooling half in school half at home? The Trust will launch their home school hub in next couple of weeks. Hang in there....it is frustrating some days. but I am lucky in having a great hubby too.

  • I am in Liverpool, I will tell the school about that thanks

  • Haven't read replies , forgive me if it's covered. ..

    Fasd trust do good teacher training , try suggesting that . Contact your local adoption team abd ask them to support you with school , if child has diagnosis ask adoption to make it clear to school that support is necessary . Fasd trust do an app called my name is Sam , it willhelp your young person understand their difficulties . There is an organisation called ipsea and another education something , I can't remember the name , I will post it later , they both support additional needs and give advice about legal responsibility of schools

  • Education equality.org

    They like ipsea can tell you what school should be doing ...but def get an fasd leaflet from the trust and don't give in

    Best of luck. Xx

  • I wish I had an amazing school to tell you about, I fostered 3 siblings who were said to have no problems! all have differing aspects of FASD all attending a small village school. I supplied them with the FASD trust education booklet and website addresses/links etc.as the head had never come across FASD before.( I have attended an education forum he didn't have time). It hasn't helped the school accept there is a problem. One child was moved to a lone foster placement after 14 months of bedlam - he needs more one to one. Currently I am trying to get the headmaster to recognise the 10yr old has a problem, she holds it together in school, is an excellent reader and verbally sounds like she knows what she is talking about. The school think she has some "gaps" in her knowledge they don't know why, they say she is a lovely girl who they have a lot of time for, so refuse to refer her to an ED Psych for assessment of ? underlying learning disabilities as her Community Paediatrician had hoped and suggested they would. I point out all the problems I have at home between siblings she sometimes says I'm stupid I'm a dumbo and half the time she doesn't know what people are talking about, she has a very poor short term memory, doesn't learn from her mistakes, has very poor maths skills and no concept of time, no organisation skills all the FASD things. At home her frustrations and time mainly focus on arguing and hitting her brother and saying she's done nothing even when she has punched him in front of me! He has a fiery temper and poor impulse control so my life is also very difficult. My 10yr old has recently reported to a relative she is always getting told off more than her brother, so there social worker gets involved and contacts the school - who say I am very negative about her! this comes from my trying to be her advocate and pointing out all the things she can't do and needs help with! Your post has made me feel a bit better as I am not the only one banging my head on a brick wall!!

  • What a nightmare. At least, as you say, we're not on our own even if that doesn't help on a practical day-to-day level. I am so tired of fighting all the time and being made to feel that there's something wrong with me, imagining all these difficulties with my child. I have actually managed to get an Ed-Psych report which, surprise surprise, supports everything I have said, and yet the class teacher still ignores everything. I am just about to have a call with the FASD trust to see if they have any advice, so will re-post if there's anything to share. fingers crossed

  • why does no-one listen to us? I have been saying since my child was 2 and a half that she would need specialist education. i have been refused a statutory assessment as school refused to fill in paperwork but told LEA that she was making excellent progress! she is now 5 and a half and is on P scales 5 for english and maths! well last week she got excluded for a day and today, after a meeting , it has been decided that she is to go to a pupil referral unit three days a week and school two which will wreck her little head completely. i am at my wits end. why did no one ever listen to me and we would not have reached this stage.. i am so angry!

  • Oh, I am sending you a huge virtual hug which is all I can do, other than let you know exactly how much I feel for you. I am sick of hearing how well my daughter is doing when I can see that she's not. She had a major melt-down last night as she'd been told off for forgetting to hand in her homework and change her reading book, despite me telling the teacher about a zillion times that she will forget to do that between me dropping her off at the front of the school and the probably 30 paces it takes to get to her classroom. I blew off at the teacher last night as it's so unfair to penalise these kids who can't help it. as you say, being shunted to 2 different educational establishments won't help at all. Have you tried to get a referral to Dr Raja Murkherjee (not sure of the spelling) who runs THE foetal alcohol clinic in the country. He's based in Surrey but having his diagnosis has made a bit of a difference to us. Also, Julia Brown at the FASD Trust will get someone from the trust to talk to the school, so that might help? Worth a try. Sending you huge hugs and love and support x

  • ah echesters thank you for your kind words. she has a diagnosis. the school is an outstanding school and the head just didnt want to admit that they could not deal with my daughter. her behaviour is horrendous, at home and school, she is very violent, aggressive and destructive. i just think if they had bothered to pick up some hints on how to manage her we would never have reached this stage. apparently the LEA have had murder with him for not asking for help sooner!

  • Don't come to London my son is 14 and both primary, secondary and refuse to acknowledge FASD our children should cope better in smaller schools. Unfortunately staff in these schools are either not trained or simply not interested. My son is easy going very polite but has his difficult moments, there is no support for him. The spotlight is on me the difficult single parent. I had hoped things would get better when he gets the diagnosis not so sure now. There is charity called SOSSEN for advice and support. Good Luck.

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