School based anxiety and knowing when it's going too far in getting in to school

[sazale]

Hi

My DS is 5 (6 in Feb) and currently in year 1. He has a phonological speech disorder but his speech is more or less age appropriate now with just small errors. He has hypermobility which is extreme in his hands and causing difficulties learning to write. He's also struggling to learn to read and has not made any real progress with phonics since starting them in F1 and is still on the first sounds. He also has social anxiety which manifests more like selective mutism.

He is under assessment with CDC to see if they can figure if the social anxiety is standalone or part of something else, like ASD. He finds it hard to seperate from me. Due to my concerns over his mutism and literacy difficulties I've engaged the services of an independent SALT and this has been productive as ds has interacted very well with her as in the home setting much better than his nhs one. She's done some phonological testing and has pinpointed phonological processing difficulties which she feel are impacting on his ability to acquire literacy skills.

He is also very sensitive to noise and when the fire alarms in school went off twice in one day, they rang me to take him home. I get mixed messages from school saying he's engaging one min and then being told he's not engaging and unable to access the curriculum. Unable to read, write and effectively communicate are all causing him barriers to accessing it.

He is a highly intelligent, thoughtful and kind little boy who is over compliant. He tells me he doesn't want to go to school every morning and every morning he holds my hand and walks to school (which is accross the road) but as we get to the school gates he tenses up and it increases till we get to the doors. For the last couple of weeks we've gone in 20 mins later through the main entrance to avoid the chaos of the morning with parents in and out.

He's reluctant to go in to school and has to be handed to a TA but the last week before half term I felt was maybe going too far. He refused to walk through the doors and has had to be physically held to get him to let go of me and held under the arms to get him to walk, with him pulling back. He makes no sound due to his mutism. He's obviously trying to tell us he is unhappy and if he wasn't a placid compliant child I doubt I'd even be getting him to school. For him to refuse to do anything is major and means he's really unhappy but I'm not sure what to do!

We've got a caf meeting next week, which I've had to push for and only got because its been attached to my DD's (13 HFA in special school) to become a family caf

Sorry for the long post, I didn't mean it to be, but just wanted people's opinions on how far is too far when it comes to getting him into school. Thanks

I think you really need a child psychiatrist's opinion on this, and probably to get a full diagnosis. You will also need it if you reach a point when ds can't go into school at all, because it will give you the evidence you need to get home schooling. If you want to do it though the NHS you need to get your GP to make a referral ASAP, but you might need to consider going private if that's at all possible.

I regret and feel guilty for forcing DS1 to go to school when he was arond 6, 7, 8 - carried kicking and screaming to the car. I did not have a diagnosis and did not understand. He was very quiet to the point of being practically mute and very compliant as soon as he went into school - this was a feature of his ASD and actually meant that he was communicating extreme anxiety but that I and others were unable to understand it because he could not articulate his stress. Outcome has been multiple tics and school transfer and now the transition from primary to secondary has failed. I am not forcing him now as I believe that the relationship with him is far more important and I am not prepared to damage it.

I've suggested reducing his hours as he'll be unable to learn anyway if he's so anxious and I can do more at home but no one seems keen. School were playing down his anxiety with the senco saying he was no more anxious than any other child his age :-( His tics have also returned.

I think school are starting to admit his difficulties and the fact that his difficulties in other areas may be compounding his social anxiety but that's took me making a nuisance of myself. They don't seem to understand that little things like still making him write with a pencil instead of a felt tip (as advised by the ot) because they think their pencils don't take much pressure to write with (that's what the senco told his SALT when she asked why he was using a pencil).

He doesn't have meltdowns he goes introvert but that last week at school he was having one every evening saying he hates everyone and no one listens to him. I feel that school is sucking the life out of him! He has made friends in school.

CDC are due to observe him in school on the 12th Nov and hopefully we'll get some answers. Part of me really wants to pull him out of school but the other part wants him to keep the social contact with his peers which he enjoys.

I've experienced school anxiety from my dd but her secondary school handled it really well. She's now transferred to special school for a lower arousal environment. She's very demand avoidant but I find that easier than the mutism and withdrawal.

When DS1 was in year 3 his CT, frustrated by the fact he did not work despite being of above average intelligence and I think annoyed by the fact that DS1 would become invisible and not ask for help and so the CT would not notice that he had done no work until the end of the lesson, decided to keep him in at break, lunchtime to 'teach him' to work during classtime. It did not work. He was kept in 3 times a day, every day for weeks. He did not eat his lunch but used that time to try and snatch some play. When I told his class teacher it was not working and had become punitive she said that they needed to do it for longer - that he was awkward, it was a battle of wills, they had to break his spirit. I am ashamed that I allowed this to happen and at the start was even supportive of consistent consequences to action. I can only acknowledge this now that DS1 is not in school. Sending your DC to school is a strong social and legal rule and it is not easy to break it - particularly when you can see no alternative and do not want or are unable to HE. HE would so be the wrong thing for DS and for me. If and when you break it you develop a different perspective.

We know we are biased and that other parents think we are not tough enough. I don't give a toss what anyone else thinks and I won't allow pressure to be put on DS. atm EOTAS will only give the minimum 5 hours home tuition and are quibbling about it being at home as a large part of their remit is to get the child back in ms school. I tell them straight 'no I am not prepared to take the risk'.

On the other hand I would bracket the anxiety (particulary given the other issues you raise) for now and focus on an umbrella condition - such as ASD. Schools can spend years focusing on anxiety whilst not dealing needs that lead to anxiety and you can end up (as I did) with a long-list of separately diagnosed co-morbid conditions but nobody is joining up the dots and anxiety gets worse and eventually becomes overwhelming as the demands of the curriculum increase.

not dealing with needs.

Also you have DD with HFA which GPs are aware increases the risk and so will accept concerns more readily.

hot EOTAS miminum of 5 hours per week til Jan when the situation is reviewed. Can't do it longterm and at the moment DS is controlling his own education - demand avoidant so I am not making demands - things are bad enough for him without that. So its rewatching episodes of the simpsons following a weekend to come down but after that he is drawing, making videos obsessively but fantastically - so he makes catalogues of scooter parts and scooter videos that he has learnt to edit and put background music to which he uploads to youtube. Scooters are his thang. Passivity is less - he has been known to get dressed, flush the toilet etc, he even tidied his room! Getting worse again though at the moment - can't get him out of his cosy, soft dressing gown.

The only reason that I am not freaking out about it is because we are in the process of trying to amend his statement and get ss - combined SpLD and ASD with the vast majority of the DC having experienced severe school related anxiety. They don't care about progress rate prior to going to the school because once the child's needs are met they tend to make huge progress. Besides which I may comfort myself that he was in school but he was learning very, very little and it was making him miserable. Self-esteem is for life.

Sazale - you mentioned the tics are back. DS has now been diagnosed with Tourettes that is exacerbated by stress. He may not be able to articulate how he is feeling but his feelings are leaking out. The most important thing I think you can do for your kids is listen to them.

Hi sazale, I know exactly what you are talking about, my Dd3 really struggled at her first school, she could go days without speaking to an adult [she did sometimes speak to other children]. she couldnt eat, couldnt sleep, she screamed every day when I left her.

It was an absolute nightmare for her and for me.

I moved her to another school at the end of year 3, I feel ashamed that I left her so long in a school that didnt know or care about her. I had fought them to get her needs met but they just kept blaming me.

If there is anyway you could either HE or move your Ds, please dont hesitate like I did. He sounds really unhappy

There are inclusive schools out there Dd3 is in one now, her needs are met and the staff listen to me and take on board any suggestions I make.

Good luck

Hi sazale you have my sympathies here, it is so upsetting watching your child go through this. My ds age 11 has severe autism and no communication, he goes to a ss and has been there from age 3. November 11 he started getting really distressed in school to point where he was self harming and literally couldnt stand up when we tried to get him into school. I then kept my ds off from then he is now being reassessed in hospital and has been through a tough year with anxiety and crying constant. He doesnt communicate at all so its really difficult to know whats going on. I am at present trying to get him back to school 4 visits so far and we havent got past the school foyer he has got so distressed screaming and sitting and not getting up, i am not taking him back to where he was this time last year, so my next solution is to try and move school see if this makes any difference. School have tried moving class, tried shorter hours tried even half an hour but to see my poor ds that distraught is heartbreaking. I really hope you get something sorted soon, as others have said you will need full assessment to get diagnosis. x

Thanks everyone for your replies and I'm so sorry to hear that you've all had a tough time

I am also a member of the guilt club with my dd! This is why I'm determined history will not repeat itself but worried that I'm being paranoid and expecting too much!

My dd wasn't dxd till earlier this year at the age of 13! She has HFA, SPD, Dyslexia, Dyspraxia traits, Auditory Processing Difficulties, demand avoidance and ADHD. All dxd this year. She went to the same primary and whenever I asked about if there were issues in school as at home things were rough at home they told me no! She was above average academically and always insisted on going into school, still does! The demand avoidance makes her say no but the compulsion to follow rules always wins, so far! They used to tell me she was lazy and a daydreamer and would keep her in at break etc to do work she'd not done in class. I feel so bad about it now. The school has a new head and new senco since dd left so I was hoping things would be better, but not looking promising!

I know things are far from ok and I spoke to the independent SALT about it and she said she felt that them physically taking him is going too far! CDC are coming to the end of their assessments, just school visit on the 12th Nov and then meeting on the 14th to discuss findings. They've said he def has anxiety but so far not clear if ASD, which I agree with.

His tics started this time last year, lessening over the school holidays and none over the summer but started again about 3/4 weeks ago. He hardly speaks to staff but he does the kids but only if he knows no adults are watching.

I too can empathize. My DS has always been difficult to get into any social setting, however to cut a long story short he has always been very aggressive and the fight became too much. He has since been out of school for 3 year. Now nearly 12 year old we have 9 hours of home tuition provided by the LA and are hoping to raise this to 15 following the next few weeks of meetings. Ds has also been put on prozac for a time and citalopram for a while to see if made a difference to his anxiety. He has always attended special school and lately his statement has been to 5 neighboroing authorities to see if they could take him.

sazale you summed up my Dd3 perfectly when you said

The demand avoidance makes her say no but the compulsion to follow rules always wins, so far!

My Dd3 is 10, she sounds similar to your Dd.

She is absolutely lovely but gets very stressy. She is usually well behaved at school but gets anxious, holding herself in all day and quite often explodes at home.

She is loads better at home since being in a caring/inclusive school.

I have just bought the book "Understanding children with pathological demand avoidance" to give me some ideas for when she hits puberty.

This was a difficult time for Dd1 who was much more challenging than Dd3 but remains undiagnosed.

Good luck

Ineedalife, I'm glad that someone understands what I mean! It's so strange to see her have basically a fight with herself! Every morning she used to refuse to get out of bed but I realised that we didn't need to go through ww3 to get her there as she always ended up insisting on going afterwards! I discovered that if I just accept that she's said she's not going but remind her every 15 mins of the time then she would just suddenly get up and get ready! Very strange and of course we have the teens thrown in! As tiring as her demand avoidance is I find my ds behaviour much more upsetting!

Dev, how have you found the meds? We're considering them for dd 13 as her anxiety is horrendous and triggers her demand avoidance. We think she's had a couple of panic attacks this week (seeing nurse tomorrow to rule ourmt asthma) at school.

If a person was attempting a parachute jump or a bungee jump and at the moment where they were meant to jump, they couldn't do it...nobody would shove them off the side would they?

So if a person is demonstrating very clearly that they cannot 'do' something and no amount of verbal encouragement or comfort was helping...we don't then shove them off anyway and let them fall...do we?

This is what your DS is suffering at the school door and he is being manhandled against his will....powerless to do anything to stop it.

I agree with your private SaLT...it just shouldn't be happening at all...it's way too far a step to be doing this just because he is small enough to control this way....all wrong imo. I'm on your DS behalf at a senco/school thinking this is remotely alright to keep doing to a person...actually I'm disgusted and horrified.

Sorry, but there is limit to any persons ability to endure what must be seen as torturous and cruel to suffer everyday.
I'd say it was time that you took control of this and stopped it asap. This is much more than pre-school jitters..isn't it...?

I totally agree and it won't be happening again. At first it was that he just needed handing over to a TA for them to hold his hand but the last few days before half term it was getting worse and I kept him home one day and the senco threatened the EWO and said it would be an unauthorised absence! My partner was the one she said it too and he told her he didn't care, he wasn't coming in and then complained to the Head. We've finally got the caf next week and a meeting with the class teacher, senco and head the day after and I'm going to make my feelings very clear.

Thanks for helping me realise that I am right and not being over protective x

Saz no difference here on those meds, sorry x