Here some suggested organisations that offer expert advice on SN.
Meeting SENCO for first time re 6yo DS, what to expect, how to prepare?(22 Posts)
Firstly, I hope it's ok to post here. I feel a bit of an imposter: it's not clear at this stage whether DS does have SN. He has anxiety issues, but whether that is a symptom of an underlying condition I don't know.
About DS: he has always been incredibly anxious and volatile. He has major meltdowns (hysterical screaming, shouting, and physical resistance,lasting up to a couple of hours) to things that make him anxious. This is the most concerning aspect of his behaviour. Other "quirks" include:
- lack of awareness of personal space and being suffocatingly tactile. e.g. he will grab my face and turn it towards him to get my attention, and he often upsets other children by getting right in their faces.
- worrying and getting upset over things he thinks might happen e.g. crying inconsolably because he thinks he might lose his teddy bear.
- generally being very clingy with me and DH.
- making up random words and repeating them over and over, in what seems to me to be a compulsive manner (hard to explain).
Triggers for his outbursts are: 1. change of routine (e.g. the disruption caused by the snow a couple of months ago caused a dreadful couple of weeks). 2. Tiredness. 3. Frustration, often with himself at not being able to do something. 4. Feeling under pressure, particularly in a performance-type scenario (dressing up, school play etc), 5. Feeling overwhelmed in a crowded/noisy place e.g. a birthday party.
Since starting school he has been having meltdowns before, on the way, and on arrival at school. Not every day; it goes in phases. Some days he is absolutely fine, others I don't know how on earth I'm going to get him into school. I always have somehow, so far, although sometimes that has involved physically dragging him there / restraining him from running away. He is generally fine once he's in and settled down, although sometimes he has outbursts in school, usually when asked to do something he thinks he can't do, or in a pressure situation.
His teacher has been brilliant and has put in place a number of support measures which are really helping. Home-school book including her writing out his full timetable for each day the previous day, so we can go through it in the morning and he knows what to expect. A special task that he knows he has to do every morning to help his teacher. A "safe place" where he can go if he feels overwhelmed in school. She has mentioned the spectrum as a possibility but says she is not qualified to make that judgement, and has asked me to arrange to meet the SENCO, to get her input and discuss whether any referrals are necessary.
I should also mention that he is bright (not uber-bright, just averagely or a bit above averagely so), articulate, passionate and charming, and can come across as chatty and confident.
Sorry all a bit rambly (and this is the second time I've typed all this now as my first post disappeared, so it's even more muddled now!). But, basically, was just wondering if anyone has any thoughts or advice as to what to expect from the SENCO and how to prepare for the meeting (e.g. put together a list of his behaviours and triggers, as above?). Thanks in advance.
Hi Jackster and welcome
Your school sound very pro-active and it is fab that they have recognised what your ds's difficulties are and have put, what sounds like, really good strategies in place.
Definitely take notes to the meeting, it is easy to forget stuff. There are a couple of threads right now with other parents in a similar situation, right at the start of the process of identifying needs and exploring assessment. Have a look and see if any of it applies to you.
Thank you Poltergoose I will take a look.
Thanks again for the link.
I am happy that his needs are being met as best they can by the school at the moment. But I am wondering if there is some way of formalising this arrangement, so that I can be sure they will continue to be met (and the support measures reassessed and adjusted as necessary) as he continues through the school? I don't want to be relying on each individual class teacher to be pro-active/sensible etc. Does this make sense?
Some other things he does that I thought of:
Poor sleeper, always has been, won't go to sleep at night without someone sitting with him, and still wakes in night requiring comforting.
Fussy eater; food has to be cooked and presented a certain way, dislikes certain textures, gags when encountering something he doesn't like.
Irrational fears of certain things (dogs, bears, burglars)
As well as blurting out his made-up words, he also makes guttural, animal-like noises, usually when hyped up.
Of all the stuff I've read up on, the things that leap out as describing him are swaps ration anxiety disorder, and to a lesser extent PDA (since his meltdowns are nearly always triggered by demands being made of him: go to school, go to bed, eat your dinner etc).
Sorry not sure if anyone's reading or going to respond, but writing this stuff down is helping order my thoughts, thanks for reading if you've got this far.
It's great your ds needs are being met at the moment, is he on school action or action plus?
You can still get hold of copy of the SEN Code of practice (you can google number to call and they will send it for free), it has useful information on Individua Education plans etc.
If, at any point in the future his needs will become greater, you can apply for a Statement of SEN, that is the way to legally safeguard them.
Be prepared that Senco might not know much about the law herself, their training can be very limited. Check everything yourself in the Code of Practice, and, if needed, use the knowledge.
Thanks for your response babiki. I had to google school action; this is all new to me! All the support measures he currently has have just been informally agreed between me and his class teacher. I guess this is what I mean when I say I think there needs to be some formalisation. Someone linked to the sen code on another thread, so I had a quick look, will look in more detail before meeting senco.
What is that anxiety disorder? Huebner's What to do books are very good on anxiety.
Jacksterbear, yes, enquire about IEP, you should be informed and consulted over it.
What is happening medically, are you seeing anybody to look at your ds issues?
Oops that should have been separation anxiety.
Re medical steps, nothing yet. Should I be going to GP or waiting to see what senco says? I have always known DS was challenging, but it has only recently started to occur to me that there might be a SN reason behind it, iykwim. It's also only relatively recently I suppose that his behaviour has really started to stand out more and more as not being "appropriate" for his age (no-one bats an eyelid if a 3yo throws a tantrum).
Hothead I bought "what to do when you worry too much" and read through it myself but haven't read it with ds. Although he does obsess and worry over some stuff, that doesn't seem to me to be his biggest issue, which is more the meltdowns. They seem to me to be morea gut reaction of his rather than the result of consciously worrying about things, if that makes any sense. Whereas the focus of the book is about thinking less (of the negative thoughts) my instinct is that ds needs to think more, in a positive way obviously, ie think through why something is making him feel the way it does and what options he has for dealing with it. Not sure if that makes any sense. I guess the book would still be helpful for the things he does worry about.
I wouldn't leave it up to school tbh. You can go to GP, state all your concerns and ask for a referral to Developmental Paedetrician and possibly Occupational Therapist - it takes ages until you actually get to see them!
Thanks. I think I will go to GP whatever the outcome of the SENCO meeting, but will wait to see what SENCO says before seeing GP, as hopefully will be taken more seriously by GP and less like a neurotic mother if have the weight of the SENCO's opinion behind me.
p.s. It is actually the "inclusion officer" I am seeing but I am assuming this is the same thing as a SENCO as the school doesn't seem to have a separate SENCO and the stuff on their website talks about the inclusion officer's role being to deal with children who have "barriers to learning / achievement". Does anyone else know (Google isn't very conclusive) whether an inclusion officer is an alternative name for a SENCO?
Update: met with SENCO. She said that in her opinion DS's behaviour does indicate that he is on the spectrum. We left happy with the assurances that he will continue to be monitored and reassessed and the support measures will continue to be provided and adjusted as necessary. Re a diagnosis, she said that is up to us. If we decide not to pursue a diagnosis school will continue to support him in any event and effectively treat him as though he has been diagnosed on the basis that those strategies are working. If will do decide to pursue a diagnosis, school will support us including providing reports, attending assessments as appropriate. I am now not sure what we have to gain by pursuing a diagnosis, if we are happy the support he is getting at the moment is adequate. Any thoughts? TIA.
Wow, your school sounds fab, can we all come?
My view is that there is nothing to lose from pursuing a diagnosis, it may help with accessing some services that are diagnosis specific and it certainly helps to have formal assessments of needs, not essential but helpful. The process can take a very long time and in my experience, as children with ASDs get older some of the developmental gaps do widen, similarly it is worth looking ahead to secondary and whether a diagnosis will help with provision at that stage.
You don't know what the future holds, school may get a new HT or Senco who are less supportive, you may need to move, many schools wrongly do not support children without diagnoses.
For me getting a dx was a kind of legitimisation of ds's extra needs and difficulties, but ds has benefited the most and, now nearly 10, he is very interested in his Aspergers and that helps him to cope.
Thanks for yr thoughts Poltergoose. Yes we have been v lucky school are so supportive.
The more I read about PDA, the more is leaping out at me as describing ds. I wasn't sure at first because it seems that routine and structure isn't usually effective for a child with pda because they need to feel in control; whereas it's very obvious that changes in routine send ds into meltdown mode. But thinking about it, with ds, knowing what is going to happen and when gives him a feeling of control, which is taken away from him if the routine is changed unexpectedly. It is also interesting that PDA is in many ways more " hidden" than other forms of asd because children with pda are generally more articulate and sociable (definitely true of ds).
Hello. Another update and another question, if that's ok. I am seeing GP this week to ask for referral to paediatrician. We have medical insurance which we think wod cover a private referral (and failing that, have had offers of help from parents to go privately). But just wondering whether a private diagnosis (if there is something to diagnose, that is) would carry the same weight as an nhs one and would be recognised in the same way by schools etc? Sorry don't know if this is a daft question! Also, any other pointers on what I should focus on when seeing the GP (as it's a 10 minute appointment!) and what I should be asking for, would be great!
p.s.forgot to mention, the point of going privately would be to get DS seen quicker; SENCO thinks could be an 18 month wait for an NHS appointment.
Pursue both options in parallel. Daphne Keen good. NHS confirmed her diagnosis.
Thanks for the recommendation hothead.
Feeling very stressed, down and overwhelmed. DS has had a dreadful first week back at school: refusal to do the work tasks he's been asked to do, tantrumming, and, today, throwing a chair across the room.
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