For Parents, who's children have school: phobia, anxiety, refusal

[sweetteamum]

DD 11 has had more time off school, than she's attended. I have had 2 meetings with the school (The first one being last term to try and organise transition and get them up to scratch etc as I knew DD would find it incredibly difficult).

Fast forward almost 1 month into the school year - Within a matter of days her anxiety grew. She became awful to deal with at home, sais she can't cope, got extremely heartbroken when school was mentioned and refused to talk about school or homeswork.

Things have got worse over the past 2.5 weeks as she's had each day off continuously. She's scared to go into school and been alot calmer in the day. We are awaiting a decision from the LEA on, if they're going to assess/statement her etc.

I have been doing the same school routine each morning and she'll do as she's told, until I ask her to get ready for school, where she gets upset.

Now, I want her to be in school, which is why i've mentioned it each day. However, how do you encourage a child back into school? How often do you talk about school? Do you call/email the school each day with an update? I don't want her to get up and automatically know she's not going to be asked things yet I don't want her to always be in this state - How do I find the balance?

DH is also not trying to understand her more. He's never been to any appointments and is now saying that unless she goes to school, he'll take her things off her gradually and she won't get any Xmas presents.

I really feel on my own here and know we will fall out over this :(

sorry not much help here, we are running into our 3rd year off school

ok, you are continuing to do the morning routine and she complies until getting dressed. Have you tried letting her go in something else other than uniform?

Have you asked what makes her scared? or do you know? can these be supported?

We talk about school all the time however I don't contact the school anymore (however in my defence, they are not very helpful)

I think the balance will come when the issues surrounding the fear are supported and the right package of education put in even if it isn't the 'norm'

HTH x

I would allow DH to do what he's threatening even if it's to prove the problems and to see how far DD is willing to go with this.

In the beginning I had no TV on, no toys out, I didn't speak to DS etc etc in hopes he would get bored etc and nothing, so a few month later I introduced stuff gradually even his IEP's etc.

lol Pipin, Iv'e used that to all the profs, let me lock you in a room with your fear from 9 till 3.30 and come back tomorrow and do it all again!!

the way I saw it is he seems to be punishing her for not going to school, however it won't matter as she is in her comfort zone and it's with 'safe' people iyswim

Has she had a Camhs referral? Or an ed psych referral? I know how hard it is.

I'm going to answer as best as I can (without boring you all).

DD is 11 - Mild Dyslexia, Receptive Language significantly delayed, Expressive Language Moderate delay. On ASD 'pathway'. She is also under CAHMS for anxiety, which they need to assess if it's possible ASD related or a seperate anxiety issue.

History with DD - She was bullied at junior school (by so-called friends),she was then forced to apologise along with them, for any nasty behaviour??????? School denied it was going on, even though it was happening to other girls! We moved her to another school for year 6, where she was much happier - there was less pressure to perform and she was incredibly happy (apart from her anxieties) and achieved a level 3. Spent alot of the last 2 months of Juniors being at home or sent home.

DD has huge phobia of rain (weather) - even if she's 'playing' out (which is her favourite thing), she will run home as soon as it starts. She will phone me if i'm out to rush me home. She has struggled with transition to High School, moving around all day. more lessons and homework.

She has 'friends' and she's happy to have a joke with but never starts a conversation and doesn't know how to keep one going.

She is also a general worrier about anything and everything.

Almost forgot, her Progress Leader has said she has someone following her, they are in the classroom and when they ask her if she's ok she says she's 'fine' - They have said that because she doesn't have a statement there is no fuding for any further support. . DD has said more or less the same as school but says she doesn't want people knowing and making fun of her (which takes us back to my first point about friends bullying her) :( She just about copes at school and looses it when sh leaves.

I am doing the ignorant thing, make her get her own food in the day and spend very little time talking to her. She has to eat here and (so far) hasn't been allowed to play out on a school day but she is allowed on a weekend. In general, i'm making home life seem boring.

LOL I am certainly going to start using that with all experts AND dh from now on. He just doesn't understand at all - I know exactly how she feels as this is like my life was - the one difference is she has my support, my parents ignored it.

Thank you, if you managed to stay till the end :)

www.mumsnet.com/Talk/special_needs/1462683-Support-information-sharing-thread-for-families-with-dcs-who-cant-or-wont-go-to-school

Just starting with link to an old thread because there are other useful links and information there when you have time to read through.

We've had similar experiences to you with ds (now 14): bullying and miserable and lack of adequate support at primary, struggled with transition to secondary culminating in school refusal.

School eventually got on board with applying for SA but we should have applied for statement ourselves earlier and not allowed ourselves to be swayed by school saying would not get it. I would advise you to apply yourself asap. You should tell the school out of courtesy what you are doing but don't let them put you off applying. They have given you some useful evidence in that they have told you can give no more support for dd from their current budget.

May also have positive side effect that CAMHS will have to provide advice as part of process. You will likely have to push things on that side too.

It sounds as if your dd needs support particularly for transitions between lessons and break and lunchtimes. But as she is herself aware, if this is done in a heavy handed way, she will be made to stand out even more. There may be strategies that would work in mainstream such as a "circle of friends" (google it) where a trusted small group of peers are selected to support dd, given some explanation of the difficulties she struggles with and told how they can help support her. Obviously dependent on senco or form teacher having sufficent knowledge/judgement of sensitivity and maturity of peers chosen to be involved and on your dd's willingness to share private information with others.

Otherwise, you may want/need to argue for a smaller supportive environment being crucial for dd being able to access education (by removing/reducing the external stresses which cause her problems). So at the same time start looking at other settings (possibly mainstream with unit, special asd or speech and language schools or small independent schools).

The punishment if won't go to school is a tricky one - ultimately if she is too anxious it won't work but can be useful evidence for other professionals that anxiety is genuine so may be worth pursuing in short term.

sweet try positive motivation toward the desired outcome (ie a reward for going into school or whatever step is achievable) rather than punishment for not going into school - wrong on so many levels! My DH has also made useful similar statements due to an overactive fear of prosecution. My DS has been signed off by the GP - not legally necessary but means that you don't have to phone the school every day and you don't have to go through the experience of a (failed) morning routine (and neither does DD) 5 days a week.

You need to talk to DD about what she wants. I assumed that DS would want to be in the mainstream because he cares so much about what possible friends might think but actually he wanted to go to a small, far less complex specialist school because he cares so much about what people think. He knows that he can't cope without signficant support but that this will be visible to other children, he won't be able to pass for 'normal' and so he will be teased and bullied. He wants to be in an environment where he can be as independent as possible. He has enough self-awareness to know that he will swear that all is fine when it is not but this self-awareness does not stop it from happening over and over again.

How does DD see things? What will make things better? What does she want?

DS1's school refusal has been intermittent and triggered by a combination of sensory overload and demand avoidance.

Sometimes it's a particular event that triggers the anxiety and/or refusal. The other week, 3 schools were getting together to sing and dance and he wanted nothing to do with it. He was happier when he found that it had been moved to neutral territory, though and stayed in a side room the whole day. Last week, he didn't want to go in one afternoon because an appointment meant he would miss swimming in the morning. He was quite upset about it. We made as little fuss as possible and then sprung a bribe on him.

If he does end up missing school, he gets to do no fun home things until the time he would normally get home from school. He's actually happy to do work in this time - that's how relieved he is not to have to go in on these days. Last time he did this in the summer term, it was because a particular teacher was on yard duty that day. Thankfully, she's retired, but we finally found out that day why every single Monday had been a disaster for him.

I have had a conversation with DD's school this morning. They were letting me know that someone was going to be in school to assess her, this thursday!?! I said that was great but not sure how i'm going to get her in.

She said that they're giving her the right level of support and that it was full time but, what this actually turns out to be is that 2 TA's in class are available if DD asks/needs them to help her (Isn't this the same as all pupils in the class then) and they follow her between lessons. She has a toilet pass (which she hates using as it makes her stand out). Oh and because of her low levels she will be in a 'skills' group for 1 hour a week (ONE HOUR)!!!!! Apparently, this is full time support to them???

My dad had to take over the call as I couldn't speak for crying and he explained it's not a case of how i'm going to get her there, it's what support can they provide to her while she's there - he was told they are doing everything anyway. They went round in circles and now I feel like the bad guy.

I was again told how DD needed to try to 'overcome' her anxiety - yes, cos it's that easy!! And that there was no funding to give her 1-2-1 support, so she would need to go straight back into lessons along with everyone else.

They also mentioned something about a referral unit, which is alot smaller, but not told my dad much else. I've googled the unit and it's apparently aimed at children who are on the verge of exclusion, who are already excluded, who don't attend school enough and those with mental health issues. I don't want to sound negative but it sounds like DD would be terrified there - Do they start part time at these units and how do they work?

DD is not easy to get details out of and it's taken days to find out she would like to be somewhere with smaller class sizes, where she can be herself and where she can cry (if she wants to), without her 'friends' bullying and laughing at her :(

She's starting to do the complete opposite to everything we ask or just avoid it - I don't know where to turn, while we are awaiting for the outcome of the LEA meeting to decide if they will assess DD or not, for possible statement,

do you think she may have some undiagnosed sensory processing difficulties? The dislike of uniform and rain sounds very familiar to me.

My dd 13 found the move to secondary too much to cope with. She was not diagnosed with anything at that stage but she had been referred to CAMHS as I had realised, despite years of school telling me she was fine and me assuming it was behavioural as only home life stressful, that she wouldn't manage secondary. It was an awful time for us as she would come home and just go in her room. If anyone tried to interact with her she was evil. After a distressing parents evening in Y7 in March where all the teachers had concerns but no one had done anything I contacted the SENCO who started to put support in place.

To cut a long story short by October in year 8 she couldn't cope anymore and said if I made her go to school she'd kill herself. She didn't mean it but it was her way of communicating how distressed she was. She was removed from all classes immediately and withdrawn into the student support unit. She went in to school 2 hours each day, starting the next day, as school felt it was important she hit base with them everyday to stop the anxiety building and her never feeling able to return. We built it up over the next 6 weeks until she was back full time but wasn't in any classes. She never felt able to go back into classes until the end of year 8 where she started with a favourite lesson with support. It still caused her great anxiety even though she wanted to do it.

She is now in year 9 and has a statement of SEN as well as a diagnosis of ASD, significant impairment of motor skills, dyslexia, auditory processing difficulties and sensory processing difficulties. The clinical psych is waiting to see how a change of school affects her as she has major traits of ADHD but not sure if part of her ASD or if it needs a seperate diagnosis. She's just been doing transition into special school and will be there full time from Thursday, yippee! She is academically the good side of average but due to her functional age (around 7 years) and sensory processing difficulties she just can't cope with a mainstream secondary environment.

My dd couldn't tell you why she was so distressed. If you spoke to her she saw no reason why she couldn't stay in her mainstream school. She can't link her behaviours to what causes it so we always have to judge from her behaviour not what she says as she will always say everything is fine! School were wonderful and handled it all really well. They spent a lot of the time out of classes delivering the main subjects like Maths and science and then the rest they worked on her understanding her emotions and her autism. They did play therapy with her and she attended an afternoon of cooking (which she loves) in a small group just for children in school who have ASD run by a qualified ASD worker (a member of support staff) who has a son with ASD.

She has enjoyed her visits to special school immensely so fingers crossed the only way is up. It felt really dark at times and I couldn't see a way out but we've hopefully got there. I'm now having difficulties with my ds5 who hates school and it makes him really anxious. He has a phonological speech disorder, hypermobility and social anxiety. He is due to be assessed for ASD later this month. I feel better able to deal with it this time but the school are nowhere near as good as dd's. The best bit of advice I ever received was from another mum who was going through the same and that was to stop going through world war 3 in a morning to get her there. If she's late then so be it but don't let the battle take over and make sure it's visible to school, no covering up what you go rough just to get her there. That all added to evidence that she couldn't cope. Good luck (sorry for the long post).

I agree that the most liberating thing was to stop going to Herculean efforts to make things look normal - ww3 every morning. It is right that your child is late, is not wearing the correct uniform, has not done their homework etc. Its just difficult to get over the idea that the teachers' will assume everything is the 'fault' of the parent.

I suppose we were lucky, KeepOn, that dd's school never once suggested it was our fault and in all reports have praised us. However, DS's SENCO has already tried implying that it's me that's anxious (sigh). Fortunately we have form with the LEA and had very productive meetings with them for dd so they'd have a hard job going against what is already known about us. I'm just glad I dealt with a good school first otherwise I would have already been paranoid and left things. It's all just so wrong x

If i'm honest i've not really thought of those difficulties (and anything's possible) like that. I did ask her though and she said she likes the uniform?!?!

Part of the problem i'm having is finding 'exactly' what is wrong with her. She's not said anything specific apart from previously metioned and thats after weeks of speaking to her! If I ask too many questions (according to her) then she closes down and won't talk about it anymore. I really do appreciate you telling your story, thank you.

I do feel like school are trying to insinuate that it's home that is the problem. She said they're doing all they can (which they are not) and the reason i'm not dragging her in is because she's got NO support and it's counter-productive (doctors words)

yes school have done nothing here also as has no one else, so can empathize there, hence how we are entering our 3rd year

How do you manage for 3 years at home devient?

I do realise that we should start looking at more specialist schools or those with damn good sen teams, but feel I've already made a bad choice for her. How do I know if its the right school for her? I get tongue tied and just want the support she desperately needs.

lol, I don't know, Iv'e had moments, last night being the latest. Think part of our problem is DS has numerous dxs and has always been SS, he really needs a bespoke out of school package but I'm not doing it electivelly, they need to help and support this. He now has 9 hours per week home tuition provided by the LA but I'm biding my time. I would rather he was in school as I will then get a huge break but there's nothing suitable as yet with how he is atm.

The LA come to your home?? Wow, I don't think I've heard that before. Sorry, that probably sounds naive . It's good too see they realise that's what's needed. Obviously most of us would prefer our FC in schools, the same as their siblings at that! However, I now understand that it's not 'one size fits all' even if that means a fight with the LA, which I can see coming.

DH said to me, that he thinks we need to forget about current school but we both worry that friendships are formed quite well in schools now. Yet we understand that a school who's SENco is on long term sick leave, is not the ideal school for an un dx'd child, who is likely to have more than 1 dx'd, just like your dc.

Sazale My ds sounds very much like you dd he is in yr 5 at the moment but every morning is a battle to get him into school. DH says I must force him otherwise it makes us look bad, but some mornings I feel like crying with him, School says he's fine once he's there, but he just bottles it all up and has a meltdown when he gets home. He will never cope with secondary school - the noise and constant change of classroom but SENCAN have said he wont get in ss as his levels are too high. 1c literacy and 2a maths!! Don't know what to do just feel exhausted with it all!

Scottishdancer, my dd is statemented for non academic reasons. She left primary at level 4b's across the board and is now level 6 in some subjects. It did limit the choice of special schools but it definitely doesn't rule it out. It is so tiring and life consuming! I've also got my ds5 in year 1 saying he doesn't want to go to school now. I hope you get something sorted x