to expect ds's teacher

[claw3]

to try and understand his disorder and the problems he has because of it. He has modulation disorder, basically all of his senses are heightened and he is very defensive of touch and his body etc.

Ds's (4.5) first day at school on Monday, it had snowed during the night, first time he has experienced snow. He was ok with snow being on the ground, but didnt want to touch it. Anyhow while in the playground it started to snow, the snow was falling on his face and he freaked. I took him into the school building, teacher saw us waiting inside and told us we werent allowed to wait inside. I explained, but she told us to wait outside saying he had better get used to as he would have to go out in it later!

Today he has PE and will be expected to get changed into his PE kit. I commented to the teacher that she may have problems getting him to take his clothes off. She told me, he will learn.

Do the school have info on modulation disorder that spells out what it means for your dc? A letter from the specialist?

I confess my ignorance, I've never heard of it. How did you find out dc had it?

You need to arrange a meeting with the school SENCO, together with the class teacher and, if possible, the Ed Psych. Did you have meetings with the teacher before the start of term? How much do you think she should have known? I'm not saying it's the case with your ds, but sometimes, SENCOs can be a little tardy in handing over information to class teachers.

If she didn't know anything about his disorder, then her attitude is a little more understandable (but still not excusable) as she may have thought that you were just being fussy. However, if she has had the information, and is still behaving like this, then it definitely needs to be re-addressed with the SENCO and Ed Psych to ensure that she is aware of possible trigger points, and strategies to aleviate them.

Good luck.

She does sound like she is being insensitive,presumably you have spoken to the school about his disorder before he started and they have all the information they need ? Does he have a statement for example ? She may just think you are being a fussy mother if she doesnt fully understand about him.

YANBU especially if he has only just started school. You would think she would be a little more willing to learn.

DS1 has AS and hated wind at that age. Completely freaked him out if it got too blowy. The school used to send the TA out with him on very windy days though. They didn't let him stay in but they did get somebody to stay with him until he was happy about it. He is used to it now. Sounds like your DS could do with similar support.

Perhaps he can learn to change into his PE kit by degrees. Could you get him to change his shoes for example.

The teacher sounds like she has a lot to learn though and shouldn't be so sure that you DS can just adapt the same way as a the average child would.

does the teacher actually know properly about your ds disorder???

unless he has an actual diagnoses and you have told the school and they have discussed with you the things they will do

then they will just expect him to do as everyone else is expected

for instance if some of the kids dont want to take their clothes off then they have to learn that it is what is expected at achool

same with going out at playtime

now your ds seems to have more of an issue but maybe pandering it isn't going to help

what has you consultant said about how to deal with his disorder??

Yes, both myself and his OT have spoken to the SENCO at the school. The SENCO told me she had informed everyone etc.

Short version, basically from a baby my ds didnt eat, mentioned to HV, referred to Dietician, referred onto OT.

have you filled in an info form about his needs and abilities?
If not,and even if you have,get appt asap with ht and teacher to explain what problem is,and how to deal with him for the best if he gets upset, and if you want to be told etc.
YANBU at all,but write it down and communicate his needs/your views now becos you don't want him to be disciplined and thought of as difficult when he can't help his behaviour

I wouldn't like that teacher's attitude at all. Even if a child didn't have any disorder she should have more compassion dealing with a little child on his first day at school.
Any child who had never felt snow on him before could get upset and should have been dealt with sensitively.

I would make an appointment with the teacher and headteacher to let them know what areas your ds may have difficulties with.
You could do it in such a way that you are just explaining to them what you've learned from your dealings with your ds, and want to make life easier on them by sharing the knowledge

Or else type up a nice informative list of possible difficulties and send a copy to head and copy to teacher.

Informing the class teacher is not the same as sitting down with them to discuss all the variations in behaviour that she will have to consider.

It is vital that you sit down with her and the SENCO together, preferably with Ed Psych and OT to discuss this. Is it likely to affect his learning? Will it affect the way he makes social relationships? What additional support will he need? All these questions need to be considered and discussed
with the class teacher.

Did you have a chat with the teacher about it before your DS started school? And explain what it means?

Littlefish - I had 2 meetings with the SENCO before he started.

Although i am getting the feeling she has never dealt with anything like this before. For example when i explained about his eating, his diet is extremely limited. She suggested he stay for school dinners. I explaiined to her all he has ever eaten in the last 4 years is basically honey loops with no milk. She said dont worry we have a few fussy eaters and there is always something on the menu they like!

My experience says:

never ever rely on one person to inform the rest of the school of your child's disability. This one doesn't work!

Call a big meeting with everybody involved: class teacher, headteacher, SENCO, Ed Psych if available. Bring a letter from your doctor. Print out any information sheet you can find online and leave it at the school in several copies. (make a note of exactly what you've given them, in case they lose it). Give them a verbal summary of what the disorder means and exactly how it might influence a number of common scenarios.

Remember - it is natural for you to see and understand how your son's condition influences his behaviour; it won't be natural to them. You really have to spell it out in simple terms. And then leave the same thing in writing.

Also, ask for dinner ladies, office staff etc to be given information.

btw sympathies you must be feeling cross and worried about him
it's many teachers approach imo,to speak like this to mums but i think she will probably be good with the children,some teachers just don't have v good communic skills with parents

Cory - You could be right. I have been dealing with the SENCO and she has been assuring me, that she has passed on all the info from both myself and the OT to all members of staff including dinner ladies and playground help.

This is all fairly new to me, perhaps i should mention to OT at appointment on Friday that i would like a meeting with herself, SENCO and class teacher.

It sounds like you're right Claw - they've never come across it before so they are minimising the effects. Cory is absolutely right about the big meeting.

Also, if the SENCO doesn't understand it, and is minimising it, then the information that she gave to the class teacher will be skewed as well.

I'm off to google modulation disorder! I've taught children who were hypersensitive in some way as part of another issue such as ASD or AS, but never heard of it on its own.

Claw - if the disorder is likely to affect his learning, then it would be good to involve the Educational Psychologist as well.

Littlefish - I have been told he will not receive a statement, because he is extremely bright and has no learning disablities. He is currently on an Educational Plan with additional outside help.

The Ed Psych can be involved without a statement. If he is at "Early Years Action Plus" stage on the Special Needs register (which he should be because the OT is involved), then the Ed Psych can be involved and can support the class teacher with appropriate strategies to ensure that his hypersensitivity does not interfere with his ability to learn.

Reception is still extremely practical and experience based learning, involving learning through play as the main driver. Is the practical nature of this style of learning likely to be difficult for your ds? In which case, he may need to be taught slightly differently from other children in the class. This is something the Ed Psych or Learning Support Service in the area can help with.

Littlefish - Bless you for finding out more info. Modulation disorder is a branch off of Sensory Processing Disorder. Its referred to as Modulation Disorder because unlike SPD is doesnt affect his motoring skills.

It basically affects his 5 senses and heightens them. His ability to process and organize the quality and speed of reaction to sensory stimuli, and to filter unrelated stimuli is affected.

Littlefish - As i said earlier this sensory thing is really new to me. So new in fact, he hasnt even received his official DX on paper from the OT, perhaps this something i should start to really push for now.

Seems i have made the big mistake of leaving things to the 'experts'. Learning through play is going to be a problem for ds, he doesnt like being touched, doesnt get involved in messy play etc.

I really need to sort this out, ive been very niave.

Littlefish - Thanks so much for your help, im really unsure of what help is available and what i need to do to be honest. Totally new to me, i feel like a bit of doh!!

I have pen and paper and im currently scribbling notes.

Have you talked to any of the lovely ladies on the special needs board? They are probably the ones best placed to advise you on the most effective way to work with the school.

As a basic rule, I think you are going to have to assume that people know nothing and have been told nothing. You are going to become the expert on your son's disorder. You will be his advocate, his defender and his champion. Speak to his OT today if you can. Photocopy any info you have, and highlight those bits which apply particularly to your child. I'm a teacher and know that this is the sort of thing I would really appreciate having as some background. However, nothing really compares with having regular conversations with a parent to first be introduced to the child, the disorder and its possible effects, and then to share information about things that have worked well, and things that have been challenging, both at home and school.

You are already the expert on your child, with or without a formal diagnosis. The teacher may be the expert on standard child development, and hopefully, your skills and knowledge will combine for the benefit of your ds.

Another thing to bear in mind is that Reception and Nursery teachers have been working very hard over the past few years to ensure a playbased curriculum. It's vital that you and the OT ensure that she understands how to make this work for your son.

Littlefish - I wasnt even aware there was a special needs board! Where are they based etc?

My god, i now have tears in my eyes, im such a plonker, could you please also give me a slap and tell me to get a grip!

Claw - I hope you don't mind, but I've made a link to this thread from the Special Needs board.

Here is the other thread

Go to topic list and the Special Needs topic is in there, I can't remember which section, sorry, but it's not in education.

The ladies on the SN board and all lovely, and incredibly supportive. I really hope you get the sort of advice you need.

Good luck.

Oh right, sorry misunderstood, i thought he meant there was a special needs board at the school!! i told you i was a doh brain

I really thought i was dealing it up until now, thank god for MN's.

Thanks you are an angel x