speech and psychology experts please take a look......

[devientenigma]

hopefully someone reading will know our lengthy story, anyway to put in a nutshell, DS is primarily down syndrome. He has been out of school for over a year with specific issues including school refusal/phobia. He has always been to special school and is on the severe end of the syndrome.

Due to his refusal, they are re-assessing his statement. The speech therapist, who has been involved with him via school, has done her tests and basically said he has the understanding of a 4 year old but the expressive language is that of a 2 year old. He's 10 btw. She also said in the last 12 months his speech has came on great and she had noticed a remarkable difference in him. She said he does know he's scared of school it's time for them all to take notice of what scares him and rectify this for school to be accessible. Up until that point everyone was happy to say he doesn't know what he's talking about. It was one of her test that told her he knew what scared meant by showing him scenarios in pictures of say a cat stuck up a tree. She also reported that when he was doing the activities it was always the people he missed and done everything in reverse.

The ed psyc has now seen him a few times and done her tests etc with him. She is in disagreement with SALT. Based on her photos of people showing different emotions and bears showing emotions. He knew happy but didn't know anything else. So from her opinion he is inconsistent in knowing if, why or what he is scared of in school. However she agrees as the behaviour is there it is an indicator of a problem in school. She would recomend lessons based around emotions and feelings, as she says he doesn't know what he is feeling or what others are feeling. He also can't tell by facial expression and doesn't read cues.

My question to anyone who can and is willing to answer is, what does this all mean for him??

TIA x

purple how can you predict the future of a boy you've never met? I think you need to be careful not to think that because you've met one adult/child/teenager with SN, or even worked with 50, that you know everything about them.

To be honest, yes, I can tell that you are just starting this process from a professional point of view, because your post was deeply unprofessional. It was crass, generalistic and deeply insensitive.

I can only assume that you do not have a child with SN. In fact, I think I know that from posts you have made. If you did, you would realise that your 'bread and butter' is another poster's fears and nightmares.

Anyone who comes on these boards is sharing the world of parents whose lives have been turned upside down in an instant. Nobody expects this life when they have a child. Nobody expects to fear for their child's future. Nobody expects to be talking about an 8 year delay in development.

Do you think, honestly, that you have the right to tell another poster that within '3-6 months' he will settle and be content, likely happy? What if she is one of the parents who has to watch for over a year, hoping for this contentment to come?

I am shocked, dismayed and saddened that someone could come on this board and be so deeply insensitive about a person's future. It doesn't matter how much truth there may be in it, there are ways of expressing it.

If you came on here saying you had been diagnosed with an agressive form of cancer, and asked 'what will my future be', how comforted would you be if someone said 'well, I can give you a long term view. You will suffer horribly, endure all sorts of treatment to try and prolong your life, then you'll be in a box anyway. Can you tell I am just starting this process from a professional point of view? '

I do understand that exposure blunts the emotions. I used to work on a breast cancer ward, and when a woman came in for surgery, I had seen a patient in her situation hundreds of times. I had seen that they came in with two breasts, one or both diseased, and left with either a mastectomy, or a lumpectomy, or a reconstruction. It was easy to see the woman as 'the breast cancer in bed 3'. But, each and every time I caught myself thinking that way, I reminded myself, a naive, young, care assistant, that for this woman, for this family, it was the first time, and it was life-changing.

Can I suggest you do the same?

I have to say I agree with Lougle. Your post is a bit scary Purple :(

My apologies, I was attempting to provide some reassurance that, while the short term is very difficult, things will calm down

No, i have no children.

TBH I don't think I'm a speech or psychology expert either, I only posted because Devient asked me to look in!

Devient, sorry, I didn't even address you, and it's your thread.

At DD1's school, they have 'ELSA' time, which is an Emotional Literacy programme. DD1 isn't too good with emotions, and they help her during that time with them.

Two things sprang to mind for me:

1. It is hard to separate out the objective ability to process the questions asked of your DS, and the environment that he is in. In other words, is he more familiar with the SALT, so more comfortable with her? Did the Ed Psych get more of a reluctancy to co-operate, which he/she is interpreting to be a lack of understanding?

I know that when DD1 was seen by the Ed Psych for her Statementing process, the report said 'I couldn't observe DD from a distance because she was constantly coming to my lap' So it wasn't a case of DD1 is/isn't able, just that she couldn't find out.

2. If your DS has the emotional understanding of a 2 year old or a 4 year old strikes me as a bit irrelevant. It doesn't matter if he knows what he is feeling is 'scared', he is displaying to you that whatever he is feeling, whatever he is sensing, it is negative, and it relates to school. 'Scared' is just a linguistic construct so that we all understand what we mean. A French person would say 'J'ai puer' 'I have fear' - it doesn't matter, you would still know they are scared, and you'd still respond.

agree with lougle (on all counts - purple, your post was awful)

it doesn't matter whether (in this instance) your ds knows and can label 'scared' - he is scared by something at school, and presents as being so. whether he can articulate what is scaring him, or even whether he can identify the emotion 'scared' in others is irrelevant.

nobody would execpt a 2 year old to be able to fully recognise and articulate what is bothering them about a situation.

devient, do you know what bothers him about school? (whether from intuition or from things your ds has told or shown you)

you do ahve both SALT and EP agreeing that there is a problem with school, and that his behaviours is consistent with there being a problem. try to focus on this, and use ti to get what yuo ned in place for your ds. don't worry (for now) about SALT and EP disagreeing over what he knows/can express or doesn't know/can't express.

work on emotions is always useful - dd1 did a lot of work on this recently, and has made good progress. it is something that can be worked on.

Agree it doesnt matter whether he can articulate scared or what he is scared off, he is refusing school, he couldnt make it any clearer.

Have you tried CAMHS, they were very good when ds was refusing school. He demonstrated through play, what he was scared off and what he found threatening about school and life in general.

Wow Purple how insensitive, totally agree with Lougle.

I've reported my post and ask for it to be deleted

I sincerely hope outcomes are better in the future

Thank you, purple, I think that is the right thing to do.

purple outcomes will only be better in the future if there is an end to making ridiculously long-reaching predictions based on a snapshot.

to predict anything about a child 40 years from now, without taking into account the many different things that can be tried over that 40 years is just shocking.

outcomes will be better when people stop focussing on what is expected, and start focussing on what can be done to change. and when they start focussing on what is actually happening - devient's ds is expressing repeatedly that he is scared by school. and so far, the professionals involved seem to be arguing more about whehter he can understand scared, than actually trying to do anythign about discovering and alleviating his fears.

Devient, do you have any ideas of any provision that you think might work?

Thanks everyone. I know some of the things that bother him in school. He doesn't like the kids, however he's not a sociable kid and prefers his own company. He doesn't like the noise. He doesn't like parties/assemblies. He doesn't like sitting at the desk for more than minutes. Going through the time table there is nothing he likes apart from playtime. Yet I have observed him at playtime and he sits on the floor in a corner.

Camhs here don't take kids with sld. However he sees a psychiatrist 4 times a year and the psycologist he had went on maternity leave.

The psychiatrist wants him educated at home full time with education and psychology input..........as if thats available, though he does have a child who is in a residential unit and is educated there also.

I personally don't know what's best. We have been taking him to a school once per week for an hour, there's 3 dc per class all 121 and he still didn't cope with that. So the psycs provision seems realistic. Then the selfish me says it's not ideal as I'm still tied.

I do think he has a lot more he needs to learn alongside the academic which is more important and vital to him.

Devient - I am not a Speech or a psychology expert but I think you know your child and you know if he is scared - whether he can express it or not.

A couple of years ago, my ds used to cry when we took him to school. Sometimes we had to drag him in. School said he was happy once he was in. When they showed him the emotions board and asked what he was feeling, he used to pick happy.

Now he is able to express himself better and he talks about that time and the teacher at that time and say eg. 'xxx said I cannot go home unless I finish my writing' or 'xxx says if I say yyy i will be put in the cloakroom - frighten.'

I wish I had paid more attention to what he was trying to communicate with me. He certainly felt those emotions but was not able to verbalize them.

Why has he been out of school for a year?
What was it about the school he could not deal with?
How have the school been supporting him since he has been out of school?
Has he been signed off school by a community peditrician?
If he has it is more likley that he will access the Education at Home team which is different from home education. Do not agree to do home education unless you have talked it thought very carefully.
What support has the LA been giving him?

I would suggest that one reason why his speech may have improved is that you have nurtured his speech more than a school may have done and where he has been with you for over a year he has really grown. Thats down to you and your care and love for your child. He may well be less stressed which will also remove an additonal block for him.
Lessons re emotions - fine but who is going to do it and where. Its not going to be in school as the child can not bring himself to get there. Therefore it has to be through the Ed at Home team.

In reality this sound like a SALT issue as he may not have the language skils to express what he may understand. The EP testing should break that down but from what you have here there appears to be a bigger issue which needs unpicking.

Ask for a mtg between the pair of them so that you can understand what is going on with your child and what they are going to do about getting him back in school which he has right to attend and be supported so to do.

Its a tough one for you, it must be difficult.

I didnt think CAMHS could decline a referal on based on disability. Afterall that would disability discrimination. As far as im aware it should be based on needs and whether these come under their remit. They probably mean that his anxiety is caused by his disability, so you would have to get the the person who refers to say they believe his anxiety is caused by something else.

Ds has had almost 2 years of weekly one to one therapy at CAMHS, after initially having his referal declined about 4 times. I know why ds's referal was accepted because school claimed i was the cause of his anxieties. It did me a favour!

You could ask about TAMHS, its a sub division of CAMHS (not publised by them) it stands for targetting action at mental health in schools or something like that. They go into school. Might be worth a try.

If he has one to one in school, could his one to one not visit him at home and build a relationship with him, with the aim of building trust to get him back to school?

Can you get a clinical psych type person, preferably on an LD team, to look at it? Feel the ed psych is talking out of his/her arse! Generally, in the LD field, there should be equal account taken of nonverbal reactions and what they communicate as what is said/not said. Understanding of the word "scared", or even some abstract cognitive concept of "scared" is wholly irrelevant. Your child's behaviour is demonstrating fear and that is what needs to be addressed.

In terms of identifying emotions, I am in two minds about this. I feel that he needs a functional behavioural assessment to identify all the things that scare him, I don't think he needs to verbalise it.. but of course, it would be good for him if he could.. hard to comment without knowing him but it does sound like a leap to say that teaching him to talk about his emotions will solve things.. it will make it easier for people if he tells them but really the evidence of their eyes and some careful observation needs to be done NOW, it isn't sensible to wait until such time as he is able to identify or comment on emotions.

Having said that, there is an emotions keyring at Tulareselpa Autism Resources here that could be used, you would upload your son's pic and the emotions and teach these by showing him the relevant card as he begins to demonstrate the associated behaviour e.g. show him X happy if he is laughing at something. It is trickier with negative emotion as timing is everything and here I wouldn't like to advise without knowing him given how severe and serious these issues are affecting him.. but have a look, see what you think as his mum, talk to someone involved with him whose opinion on his needs you trust about using this as a way to support this understaning.

Has anyone said that there may potentially a developmental element here, e.g. a fear related to separation anxiety etc which may be compounded by the fact that he feels that from experience this setting isn't "safe" as perhaps his needs aren't being met as they are at home or were elsewhere in the past. My friend's son who is 19 and has SLD started with this just this year in a respite situation he has been in for years, but it would appear that he is just now making a developmental leap (he has increased his single words, started combining signs etc) so that this has become an issue for him whereas before he wasn't particularly aware of this place as "different". In some ways his fear is somehow positive, because it is a sign of shifts in his cognition and development (though a PITA for him and his mum!) but it does sound like it is more significant in your son's case from the few details you have given..

It isn't ideal for you to have to take on the burden of a failure on school's part, that is not selfish it is reality. You are his mum, yes, but you are more than just his mum, you need a life too.. if you wanted to be home with him that would be different, but if you are feeling tied, you need to take care of you too. He is 10, there are a lot of school years left and you will have that worry for his future anyway. There must be alternatives and if not they really need to work out how to provide one. I wonder if he needs a "safe person" in school that he develops an emotional connection with. It also sounds (perhaps?) that the environment overloads him.. don't know if others have had any success in dealing with these issues...

Good luck, you are all in a bloody hard situation.

I work in one of these areas but definitely wouldn't call myself an expert, being in the early stages of my career (but having a strong interest in the area of disability). I just wanted to mention that the speech therapist and the psychologist are measuring different things. I don't know what test the speech therapist used, and I don't understand what you mean by "when he was doing the activities it was always the people he missed and done everything in reverse", but it sounds like the speech therapist assessed his understanding of "scared" by showing him pictures of situations in which someone/ something might be "scared", and your son's responses indicated that he understood that someone/ something could be "scared" in certain situations. (In my opinion this assessment is much more valid/ relevant to your son's actual difficulty of reporting that he is "scared" of school - I assume that he has used the word "scared" in describing his feelings about school to you/ others?)

On the other hand, the educational psychologist measured something very different - your son's ability to recognise and label facial expressions/ body language shown in photos and bear cartoons. So there are a few problems there: (1) he may recognise their emotional meaning but be unable to verbally label them (note that the speech assessment showed his receptive understanding is higher than his ability to verbally express this understanding); (2) the focus is on recognising others' facial expressions/ body language which is arguably irrelevant to his ability to recognise his own internal feeling of being "scared"; and (3) using cartoons of bears in particular to measure recognition of emotions may be inappropriate as it's quite an abstract way of doing so - not very related to the ability to recognise real-life facial expressions showing emotions in dynamic human interactions. Your son could recognise what his feeling about school means, and have a name for this feeling, without needing to be able to label a facial expression depicting that feeling in a photo of another person or indeed a cartoon of a bear.

So in conclusion, to me, the speech therapist's assessment seems like a more valid assessment in terms of exploring your son's understanding. As you've indicated, it may not be the case that what is scaring him at school is something sinister - for example, maybe there are some sensory issues like overwhelming noises that underlie his fear.

I hope this helps. Best wishes to you and your son.

Thanks everyone,

Nigel he's been out of school over a year as no one can get him to leave the house to go. Up until this point he has always been very reluctant, often battled and more or less forced to school. He's just too big and too aggressive. He can't handle the noise, the kids, the work, assembly, the demands made on him etc. School have tried to get him into school to no avail apart from theat they haven't been very helpful, however they were not very helpful anyway. Yes he's been signed off with social phobia and school phobia. Yes he has had half an hour 4 days per week last term and an hour, 4 days per week this term via home tuition. These are not able to give him any more tuition after this term as they normally provide short term with the goal of being back at school. So unsure as to how full time home tuition would be provided, if available. I don't intend elective home ed. LA are supporting by re assessing his statement. He is a lot less stressed, he doesn't get angry as much and is hardly depressed any more. What do you think is a bigger issue??

Claw I will ask about Tamhs. He doesn't have 121, it's something that has been discussed to get him back in school. The 121 was at a private school session on a Saturday.

working those pictures look good will defo print some off. His clinical psycologist is on maternity leave with no replacement. However she never put anything in place that other profs asked.

Piggle thanks for the comparison between both assessments. How would we get the profs to recognize or acknowledge his issues around school could be sensory based especially when school insist when he's there he's happy??

just doing a shameless bump

The LA have a statutory duty to provide education for him at home or via the home tutition service. This is an absolute duty. If he has been signed off by the community peditrician then ask the com ped whether there is any medical reason why he could not access full time education were it not for the reasosn why he is off. If he sayes no then he should be provided with full time ed by the LA. Now they are going to come up with all sorts of reasons why they can not provide. They are all twaddle.

Smile, sound a little bit essex and ask for a detailed report saying why they are not providing full time education. Who is say that and their qualifications for saying that because the com ped is saying that he can.
Ask for a copy of their Home Education policy.

Say that you have been told about something called Judicial Review where the LA fails to provide full time ed for a chilld out of school.

You could also say that you have looked at the Local Governmetns Ombusmans web site , decsions page and seen a lot of judgements that look very simular to your case where the LA have been ordered to pay costs to the parents.

For a child to be out of school for over a year is very poor. To be out of school for a year and without education is unforgivable and needs to be properly challanged. The SEN officer needs to have some words of encouragement wispered in his ear as well.

"How would we get the profs to recognize or acknowledge his issues around school could be sensory based especially when school insist when he's there he's happy??"

Sorry but I'm not really sure - good professionals should listen to parents and follow up on their concerns, and my experience thus far has only been working with sufficiently good/ supportive/ family-centred professionals.

School staff can insist he's happy when he's there all they want - and they may be right, often with anxiety a child will be very upset in the lead-up to facing the feared event, but once forced to face the event, it may not be as bad as they imagine/ they settle down/ self-regulate eventually. Lots of parents whose young kids go through separation anxiety and are sobbing and screaming as they are dropped off at daycare/ kindergarten/ preschool, discover from staff that once they leave, their kids settle down and are fine for the rest of the day - contrary to what the parent imagined and feared. But regardless of how he behaves once he is forced to face school, your son's behaviour is SHOWING that there's a problem that needs to be addressed... no matter how happy he may appear after he's forced to face that problem. And this problem is massively limiting his functioning and education. Your son needs to be helped to deal with whatever the issues are that are upsetting him.

Do you feel able to assert yourself with the school and insist that they follow up on your concerns or take measures to accommodate possible sensory difficulties? There is a measure called the "Sensory Profile" that can help in documenting the nature of your son's sensory sensitivities. Surely school staff cannot keep on refusing if you keep on asking/ insisting? Unfortunately I don't have any experience dealing with extremely non-supportive school staff so I don't know what to advise... I also don't live in the UK so am unfamiliar with the school system there.

Is an advocate an option? Is there an educational psychologist (not necessarily your son's assessor) or school counsellor who you can talk to within the school, who might be able to support you in trying to get to the bottom of this?

Nigel1 seems quite knowledgeable about your rights/ entitlements in the UK!