Just wondering if anyone has any advice on how you deal with your children going to school, particularly mainstream. My partner had a particularly difficult experience dropping our son off at school this morning that involved him having meltdowns for no apparent reason ie running up and down in front of everyone shouting no and upon the comment from the teacher that he came into the classroom well shouting 'no' and throwing his books at her.
He's at a very supportive mainstream primary school with a high proportion of adopted kids. He's only in the nursery at the school but mainly due to a lot of lashing out and aggressive behaviour they're applying for an EHCP and we've got a team around the child meeting next week. We've also applied for the adoption support fund so he can get support from an ed psych and OT.
Just wondered how you find the embarrassment in that context and the feeling that your child has the worst problems and is the worst behaved? My partner said another parent moved his son away from ours this morning and wouldn't meet her eye etc and the fact that there are a lot of adopted kids doesn't even always feel helpful because they generally seem to have less issues and be less extreme.
Any tips on how you approach these feelings and issues is appreciated!
Thanks
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Ansndsuz
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We have two adopted children , half brother and sister, our youngest child has FAS he is eight years old at present.
In our experience we have had a tough time, and a lot of what we experienced is down to a lack of education from school teachers; other professionals; and other parents. On reflection from our situation , we were reported to social services a number of times because of his behaviour, which at times was very challenging. In our case it was some parents , we were completely investigated by SS and the parents were cautioned by the police in the end. So we moved school.
After a year out our new school decided to report us to SS and again we were investigated and we ended up doing positive parent course again , I think we have done this six times now, so much we could perhaps write the bloody thing now!
You need to arm yourself with lots of information, buy the book about ' parenting a child with a hidden disability FASD' by Juila brown from the FASD trust. Buy a copy for the school, look for information from Canada with regards to FASD children give this to school. In fact the more you read the better you are armed when situations like this arise. Get involved with the FASD trust, go to a local meeting, they are great, you are sat with other parents who know what you are going through. Ask the FASD trust to go to your school and educate them.
Just remember education is the most powerful tool in the world, it breaks down barriers and squashes the ignorance. Parenting a child with FASD is hard , challenging, but remember to laugh, cry and come on this forum and share any information. These kids need our help,as we need each other's help.
Thanks for your reply. That's horrendous that you were reported to social services twice. Unbelievable! There is such a lack of understanding isn't there. I think one of the most difficult things for everyone to get their head round is the unpredictability and variability. It goes against things most of us are taught about learning processes etc.
so sorry that you are having such a bad time. Please ask to have a meeting with the school SENCo and the Head, ask if there is a possibility of 1-1 support. Perhaps you can arrange for the child to arrive a few minutes early to try to avoid the meltdown. It all depends of course on the ethos of the school, however, they are obliged, I believe, to make 'reasonable adjustments' for children with disabilities. He should get a visit from the school's Ed. Psyc. without you having to pay for it although you can also apply for DLA which will help financially.
The little one I had successfully completed his nursery year with constant 1-1 support put in by the school prior to him starting. You don't say if you have a diagnosis but if not ask your GP to refer you to a paediatrician so that any diagnosis can be made or you can at least have some kind of report or be referred to genetics. The paediatrician my little one saw said 'ADHD, he'll be on medication by the time he is 5'. She wouldn't put it in writing but even the verbal diagnosis ( though incorrect!) resulted in his support in nursery. He loved it.
I do hope things improve. There is I think a little teachers' leaflet too. I agree with D re. joining a group for your own support. People there will often have helpful ideas.
Thanks so much for your reply. He is currently getting one to one support three days a week but obviously needs it all week and this is hopefully what the EHCP funding will provide.
We have been referred to genetics and community paediatrician for diagnosis. That's brilliant that the one to one support was put in place before your little one started. Our son's school have been supportive but the ed psych's report has stressed the need for more consistent support - there are currently two people providing it for only 3 days.
We do go to the FASD Trust's support groups but to be honest these are infrequent and attended by different people and it would be great to have more regular contact with more people who are dealing with FASD. It is such a particular and misunderstood condition!
You don't say whether you're little one is still with you? Did he carry on in mainstream school after nursery?
As a short term carer and an older person it was decided that it was in his best interest to go to a long term carer, trying to find an adopter at that time hadn't worked. He did go initially to a mainstream school. Unfortunately he was placed with his slightly older brother, his brother was in a separate short term placement with the same diagnosis but entirely different presentation. After six months together the social worker removed them both. She has occasionally given me the minimum of information but at the moment I have no idea how things are for the boys. He will have started in Juniors in September and the fact that the social worker is not responding leads me to worry that he is not coping. I wish that I had just said that I would keep him!
It sounds as if all the right things are happening in your case. Don't worry about the embarrassment. I have a young granddaughter whose behaviour in public can be off the scale!
That's a shame you haven't had updates on how he's doing. Yes, thanks I think you're right that the right things are happening. On embarrassment can I ask how you deal with your granddaughter's behaviour in terms of not feeling embarrassed, stressed by it etc? I've always worried too much about what people think anyway so this aspect is proving difficult!!
Yes, I realise how difficult it can be. I had to deal with it when one of my daughters was younger, throwing herself on the floor in shops and screaming blue murder. I think that perhaps I just decided there and then that actually I had to ignore other people! After all they have no idea what is going on and I had to deal with the matter in hand rather than worry about what anyone was thinking. I applied the same to the little one that we looked after, lying down in the entrance to a major country park at a peak time and refusing to move! By comparison my young granddaughter is a doddle!
Decide on your strategies, hopefully together with the school, and follow them, disregard others. As always some will condemn, some will criticise, some will sympathise and some won't care! You have too much to deal with at the moment to worry who falls in to which category!
First of all, great that your mainstream school is applying for an EHCP. This means they have recognised that your son needs further support and the EHCP will provide school with the funding they need to provide that support ie one to one support.
Your son is behaving that way simply because he is overwhelmed and he is doing a great job in letting you guys, and all the other parents know that, isn't he?! What you as parents need to do is to figure out what is causing him to become so overwhelmed, and you are taking exactly the right steps by getting an OT assessment (to highlight any sensory issues he may have ie maybe he cannot stand the noise levels, or the bright lights, or other children bumping into him etc) and also getting an Ed Psych (to find out what he is struggling with academically ie what is frustrating him).
Also, ask him what he likes and dislikes about nursery, although he probably won't know what is bothering him, he may in fact give you guys some clues in what he says. It is clear however in the meantime that you need to take some action to ensure your son is not overwhelmed. Therefore, request (formally and in writing) to your school SENCO (Special Needs Co ordinator) that your son is given interim support ie one to one, if that is not an option for them, then suggest that your son does less hours in nursery (if that is an option for you) as an interim measure until the EHCP is in place. (My son's behaviour changed overnight when I suggested 'flexible schooling' and put him on half days in mainstream school. He got an EHCP and now attends a secondary special school.
The other parents, well I guess you or I would be peeved if another child in school was lashing out at our child, but clearly that is not the fault of you guys, that is currently the fault of the school not providing enough support to your child so that he does not feel overwhelmed, and feels instead calm and relaxed and able to enjoy nursery. It is their job to prevent him disturbing other children and not yours.
So the key things you need to do, is ensure their is interim support measures in place, whilst you await the EHCP and whilst you await the OT and Ed Psych reports. Or suggest that your child does less hours in nursery if that is not possible for the school, but practicable for you.
Check with your child to see what you think is bothering him (probably sensory issues) and include suggestions in your request of what you guys (the experts on your child!) think will help. Suggest a school meeting to discuss the support that you have identified and written in a formal letter to your SENCO.
Also, if you do not yet have a diagnosis, approach your GP or Paediatrician and ask for a referral to the genetics clinic.
Thanks so much for such a thoughtful reply. Our son is getting one to one support three days a week currently but obviously needs it for the whole week. They say there isn't enough funding for this currently but this is what the EHCP application is for. We've got the Team around the child meeting later today to prepare the application.
The Ed psych has done her assessment and has recommended more consistent support as well. Currently it's a combination of two assistants supporting him.
Re diagnosis we have been referred by our GP to genetics and community paediatrics and are waiting for the appointments.
You're so right that his behaviour is because he is overwhelmed. We are only just beginning to understand the degree to which he doesn't comprehend and understand things as well which can add to his frustration. Good idea to ask him what he likes and doesn't about nursery although his confused comprehension means it can be difficult to get a clear answer to this kind of question. Sometimes it is very difficult to understand what triggers his aggressive behaviour as it can feel quite random and in settings like our home isn't always when there are obvious ways that he could be overwhelmed. It feels like it's more random impulse and what we call 'fizz'.
Things that have come out in the Ed Psych's report are needs for attention and control which I know - particularly control - are things that are common with FASD. I'm wondering what others have done to address this need for control because it means that he is dominating and trying to control play with his peers etc.
Interesting idea about flexible schooling - this may be something to look at in the future although my parter and I both work full time at the moment.
You're right that we'd probably be peeved if another child was lashing out at ours but I'm not sure even if we had a neuro typical and well behaved etc child that we'd be separating them from one with challenges. I'd like to think that I wouldn't be too judgemental if the shoe was on the other foot - although I can't know this - and I really struggle with the sense of judgement and feelings of embarrassment sometimes. We've started accessing a play centre for kids with additional needs and the sense of relief there is unbelievable - not having the eyes on us and feeling accepted. Being able to relax and not feeling tense and worried about our son's behaviour!
Can I ask, did your son stay in mainstream for the whole of primary school? The Ed psych's report has recommended that he stay in this school for now and he does seem happy there in lots of ways but I do imagine that a special secondary school might be more suitable when it comes to it. How are you and him finding this school?
Yes my son did stay in mainstream school for the whole of primary school, but this was due to how long it took me to get a diagnosis and also to get people to recognise his problems! Now that my son is older and more mature I have been able to ask him 'when did you really begin to struggle in school?' His answer is Year 3. This is the key year, in fact, when the struggles of children with FASD become most noticeable to others, because the work becomes more 'abstract' in Year 3 (start of Juniors) and the children are using their imagination and 'ideas'' more also the work starts to become more independent. So, had I been able to do so, I would have definitely moved my child to a special school at the end of infants. However, dependent on your child's needs and the size of your mainstream school etc, I would even consider moving them earlier if I felt the school was not adequately meeting their needs and my child was overwhelmed. As for the special school, if I had written down everything I thought would benefit my son, it is in place at his special school. The flip side is that he is higher functioning than the other children, and he probably lies somewhere in between a mainstream and a special school, but overall the mainstream, large secondary schools presently cannot meet his needs (just think about it from a sensory level with the sheer size, volume and noise of pupils, and negociating their way around the school from class to class and it just doesn't work). The special school has structured breaks, very small class sizes, teaches life skills, individualised learning etc, has great communication with parents, specialised teachers, there is just no comparison at present!
Thanks, that's very helpful. I've heard that about year 3 and it does make a lot of sense. I think probably a lot of children with FASD lie in that complex place between mainstream and secondary because it is such a mixed profile.
Just the idea of the sensory overwhelm of a secondary school though makes me think that a special school will probably best! I know there are lots of different types of special school and some kids with FASD go to ones that are dedicated to behavioural problems. I'm also aware that kids with FASD are easily influenced and model behaviour easily etc though and I want to make sure he's somewhere where he is getting good influences. How do you find this aspect of your school?
Yes my son does copy behaviour and that has happened on a couple of occasions, but he would also do that in a mainstream secondary school where you will still get inappropriate behaviours from pupils. The difference with the special school is that a teacher is never more than a few feet away from your child, and this is also at break times too. So not only is your child less likely to be able to get into difficulties, if they do so then there behaviour is observed and reported to you so that you can all identify together what are the trigger points for your child.
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