Help from school if behaviour masked

[nam207]

Hi,

Our 5 year old son has been diagnosed with sensory processing disorder and we have lots of problems at home with his behaviour. They have become worse since he started school which he says he finds very stressful.

At school however it's a different story. He is well behaved and is doing well academically. As far as the school are concerned there is nothing wrong with him. The OT report says that he is masking his feelings and modifying his behaviour within school hours.

Unfortunately there is no NHS funding to help us in our area and the cost of getting him help privately is really high.

Next week we have a meeting with school to discuss the report and I wondered what duty of care the school have (or not) to try and help us get support for our son?

I'm concerned that they will be reluctant to offer to get him any support because of the masking during school hours but he does have a diagnosed condition and going to school is making it worse.

Does anyone have any knowledge about this? Thank you

[Haveasay]

If there is no problem at school, like zzzzz, I'm not clear what you would expect them to do?
If the OT has completed an assessment I would hope that they are able to give you strategies to try at home.

[nam207]

Hi, thanks for your responses. I suppose I was just wondering whether we should expect some help from them in accessing occupational therapy accessed through the school service rather than having to pay privately for it ourselves. The behaviour is displaying at home but it's being in school that is making it worse.

We have had an assessment done which we have, with difficulty, paid for privately but the assessment doesn't include any treatment sessions or outline of what we need to do with our son to help him. It simply reports back their findings and states that he will need sensory integration therapy.

If our son wasn't masking his behaviours at school then it's likely that they would help us access the therapy. I was just wondering whether because of the masking we will have to find the money from somewhere to pay for it ourselves or whether the school should still help us.

[Twofigsnotgiven]

School can refer to Early Help (or similar), who may be able to help you support your son at home. Most areas do not provide OT support for SPD - we’ve had to pay privately for this.
However, school can’t really do much more because there are no issues in the classroom. It’s crappy, but hopefully you can’t find a way to support your son’s anxiety.
(‘When my worries get too big’ is a really good book to help support anxiety in young children.)

[nam207]

Thanks twofigs. He does have anxiety as well as SPD so I'll check out the book.

Zzzzz, we've already been through the GP. There is no ot help on the NHS for SPD in our area and camhs can't help us either.

Sounds like we might need to pay privately for the therapy he needs.

[LightTripper]

Might school be able to help in other ways if there is anything he finds particularly stressful? E.g. if the classroom is very bright/jazzy, could they sit him somewhere with a calmer view, or anything like that? Sorry, not sure if this would really work - but maybe there are some other things that they could do that don't cost money but might just help him get through the day with a few "spoons" left over most days to handle the evening?

en.wikipedia.org/wiki/Spoon_theory

[Devastatedupset]

We battled for years as dd is a ‘masker’ ... it makes it incredibly difficult to get help. I feel for you big time

Every conversation I had with school, professionals etc, I would say “it would be so much easier if dd kicked off when she couldn’t cope, then everyone could see her difficulties, then she’d get help”.

In the end, I kept dd off school, I no longer made her go in. After 2 weeks of no school everyone bent over backwards to help! After all, her attendance was dropping and they couldn’t have that on their school records . We then got an EHCP very quickly with no hassle!

Where we live there is no funding for SPD ... not even for assessment. We eventually had an OT assessment, but to be honest it wasn’t worth the paper it was written on really.

My only advice would be to keep on at school and GP ... because your ds is masking at school, it has a huge impact on him afterwards. This must be taken into account and supported appropriately. I literally had to work everything out for dd, told school what I thought would affect her and they tried to change what they could for her. But it shouldn’t have been left for me to work things out, professionals should have done this.

I feel like I’ve rambled and not been any help! Sorry!

[BlankTimes]

I learned about masking the day's sensory processing by trial and error after a brilliant NHS OT report which highlighted difficulties and did give some interventions within the Jean Ayers book. Primary School did not take on board any recommendations, they were worse than useless.

How is he on leaving school every day? Do you have a car commute or a walk? Can you use that time for him to process the day's overload?

Primary was a 10 minute car trip, prep was 30 mins and secondary was an hour. All kids are different but in our experience, there was a set amount of time needed to be still and process the school day before all was back in balance. That time depended on how much stress had been bottled up all day.

Other mothers picked their kids up full of chat, two way conversations and questions, how's your day been, what did you have for lunch, have you been good etc.etc.
I just smiled and said hello which wasn't always reciprocated and we went to the car and did the journey in silence until enough processing time had elapsed for them to be able to hold an often limited conversation. Sometimes it was meltdown on first sight, other times it was meltdown on getting into the car. It all depended on what had happened that day, but often they could not explain and the anxiety cranked back up if I asked any questions.

Home is geared to their sensory needs, soft clothes, soft throws and blankets, soft toys, gentle lighting etc. which all helps with winding-down, processing the day's events at school and generally getting ready for the evening meal.

I had to stop the round the table family evening meal where everyone talks about their day because that caused a lot of problems, regurgitating things they couldn't really articulate, which led to more questions in a futile effort to try and help. All I was doing was making things worse and adding to the stress and anxiety instead of alleviating it.

Gradually and with trial and error, I managed to find what worked to provide my child, now adult, with an environment at home they find supportive and safe.

Read as much as you can about sensory processing, be observant, see how your child responds to different things. Work on creating a home environment where they can be themselves with as little added stress as possible. Provide what your child needs for them to feel happy and secure at home. You don't need to spend a fortune on specialised sensory gadgets, most of those can be adapted from household things or easily available things with a little imagination.

Wobble cushions and spiky or textured or squishy balls etc. can be found quite cheaply in sports suppliers or supermarkets when they have a fitness promo on. Weighted cushions and blankets can be made at home or add some beans or rice to an ordinary cushion's inner, or to an existing large soft toy. There are online charts to let you know which weight is appropriate for the child's size.

Is focusing a problem, if so try a short physical activity beforehand, moving piles of books or putting tins of food into a cupboard can help. Does sitting on a wobble cushion during the activity that needs focus help at all?

If it's any consolation, lots of sensory stimuli which were terrifying and overwhelming to a 5 year old are not such a big thing as they get older. Coping strategies evolve over time.

As devastatedupset says, But it shouldn’t have been left for me to work things out, professionals should have done this
I agree, but when you can't get the professional help you need, you have to be the best advocate for your child's needs that you can be.

Remember, you CAN do it!

[nam207]

Sorry I haven't replied to the thread for a while. The information that you've all written is really very useful. It sounds like the help is probably going to have to come from us becoming the experts.

That seems a bit daunting to be honest, especially in knowing where to draw the line in terms of dealing with behaviour that's the result of the SPD and understanding what is being naughty and pushing boundaries and how you deal with that differently.

We walk home from school or rather he scoots or runs. He doesn't want to talk about his day at all and it's difficult to find out how his day has been.

When we get in from school he is moody and often pretty hyper. He runs around madly singing nonsense and you can't get him to do anything you need him to do.

He has difficulties with concentrating on anything when he's in that state and is very sensitive anyway so trying to do homework is very hard unless it's something he very keen on and it often causes him to argue with us.

When he gets upset he tends to display it as defiance and anger so he ends up shouting and hitting us. Sometimes he bites himself.

He also has selective eating and dinner times are awful because of how worked up he is. Because transitions are difficult for him even getting him to the table smoothly can be hard and fairly often he gets there and rejects the food he's asked us to make for him and kicks off again.

Bedtime is also hard as even if he's managed to calm down before then he usually ends up running round like crazy while I try my best not to lose it.

I also wish they could see some of the behaviour at school as he is much more even tempered over the holidays when we can manage his day ourselves

[BlankTimes]

Have you tried a timer for transitions and lots of now-then and now-next instructions.

Lots of different sorts of timers to try, electronic countdown ones, clockwork ones like kitchen timers, sand type that are graded for how many minutes etc.

He has difficulties with concentrating on anything when he's in that state Wait until he's in the right mindset to do the homework, otherwise send it back incomplete with a note as to why. If school can't suggest anything to help, tell them it's pointless giving it to him as he's far too wound up from holding everything in all day to be able to do it.

I know it's hard now, but he'll grow and his behaviour will change

Would he benefit from more structure at home? You could try timetabling his after school evenings with the aid of timers and a chart so he can see his whole evening planned out. See how he responds to something like this, obviously use the things he does and needs to do.

Come in
Change clothes
Snack
Runaround and use up some energy, physical activity.
Read or TV until food's ready
Eat
Homework
Relaxing time
Bath
Bed with story.

[UnicornRainbowFluffball]

Private OT is your best bet. They can do a full sensory screen and observation in school. My sons teacher was very surprised at what she reported as he too is a masker. Ask for a sensory diet for home/school too.

My son has fallen apart since starting high school and I regret letting the whole 'fine' thing slide for so long now.

[UnicornRainbowFluffball]

As for eating give him the choice of when and where if you can. That might help as he has more control. It may be he finds it hard to tolerate being around others foods or others whilst they are eating. My ds often eats separately from us but that's how he eats best.

[nam207]

Thank you so again for your advice. We are going to meet the school senco shortly so will then have a better picture of where we stand but I'm trying to prepare for us to have to do this solo.

We do have a pretty structured routine after school (or try to) but some of your tips might be helpful for us to try.

I guess it's all just a learning curve but you do at times feel totally inadequate and wonder how best to deal with it all.

[bigarse1]

we are in a similar situation - have twins with spd and suspected asd. boy is very much evident in school as he meltsdown on and off all day. girl twin holds it together in school. community paeds asked them to put sensory circuits in place, explaining that even if she wasn't displaying behaviour at school it was still there and needed help and that if they did those during the day it may help us when she came home.
school refused! said they have no interest in anything that happens at home.
we have found that getting them to 'hang' from a pull up bar several times a day has helped. we do it before school, after school and before bed

[youarenotkiddingme]

My ds 'apparently' masked in school and exploded on way out. (He didn't mask to point of perfection and school ignored a lot to avoid support).

But actually masking may be a dream in some respects (Eg no constant phone calls from teacher!) but it's damaging long term and can be overcome with reasonable adjustments.

I'd explain to them that he's coping because he's using all his reserves to act socially appropriately but this will have an affect. That the things that would help are ......

Probably easy and free things like heavy work (he could be monitor for something that requires lifting - Eg chair monitor or lunch box carrier). Sensory breaks, can he run an errand daily to break up his sitting still, will a wobble cushion help, fiddle toys, change of position in the classroom due to a low level noise from a fan or something. Sitting away from window, low level colours etc.

All things that help adjust his environment so he's not using all his reserves to cope - but can actually manage well because you've reduced demands on his effort to cope and so it's easier.