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does your child hold it togther at school but not at home/out

(51 Posts)
OMGGG Sat 13-Jul-13 22:41:30

im interested to find out how many children dx with ASD are able to hold themselves together at school for whatever reason but then show different behaviours at home etc.
my child (hfa) is apparently showing no signs at school pointing to asd apart from a little help required with making friends and task changing. other than that school saying he is fine.
he doesnt melt down at school like at home.
how can this be?
paed says that autism expresses itself in all settings so if he is not displaying signs at school then he doesnt have autism.

PearlyWhites Sat 13-Jul-13 23:07:18

My dd is on asd pathway she has extreme anxiety at school and finds in hard to make friends. At home she has violent daily meltdowns but these have never happened at school. We asked her psychiatrist about this and was told it was common for children with asd to "explode" at home because of the anxiety felt at school.

PearlyWhites Sat 13-Jul-13 23:09:49

The pead is right in the autism needs to be evident in more than more setting but the evidence of autism doesn't have to be the same behaviours.

OMGGG Sat 13-Jul-13 23:13:21

thankyou for reply. have the school said your dc has extreme anxiety at school. my dc gets very anxious too. he has a routine of saying goodbye in a specific way before walking into classroom thst has helped him at least with his anxiety about entering school.
our paed thinks the exploding at home may be down to something else i think which worries me. we still waiting for nhs ados and assessment but have private dx.

OMGGG Sat 13-Jul-13 23:18:49

its evident eveyehere but school it would seem. i cant clarify thst as im not seeing him in school. senco says ds doesnt have autism and showing no signs . paed is now swaying towards doubting our private dx because of this.
school are aware and admit thst ds is behind on learning is on SEN and has struggled to make friends, leave me etc. but say his confidence has griwn over last six months and has made good friendships (he has a nice friend now who he really likes) he still struggles though they admit he does still struggle especially with instigating games and joining in.

WilsonFrickett Sat 13-Jul-13 23:48:18

It's very common to hold it together at school and not at home. And sencos are no more qualified to comment on dx's then they are to fly in the air.

If he's high functioning then on the surface all may seem to be well. But what they're not seeing is now hard he is working to do the basic things and manage social interaction/classroom environment. I'm guessing his behaviour is good too, so they just aren't seeing it. Arrrrrrghhh! My DS is in exactly the same position. It's very hard.

smokinaces Sat 13-Jul-13 23:55:14

Its taken till now to get the school to realise that ds1 has signs at school - not meltdowns but anxiety which shows in other ways. He's now ending year two and we finally have a basic IBP. In some ways its good - his teacher does a visual timetable for him naturally and deals with him wonderfully but as soon as something changes, like a substitute teacher, he ends up in a big mess. They are doing extra transition for him and seemingly listening to me now. The senco is shite and told me it was all his homelife, and what was I to expect from a single mother in council housing. Thank god that bitch is leaving.
It is very common for hf asd to be ok in school , ds1s paed said its one thing they look for to differentiate between asd and ADHD. They thrive from routine and often academic work, which school is full of. Ds often bottles it all up and explodes at home if something is worrying him.

OMGGG Sat 13-Jul-13 23:57:13

its very hard. and very frustrating too.
how can i prove this is the case, any ideas?
should i perhaps get a ed psyc into school for the day to assess whats what.?
the senco is useless. sen provision at the school is useless

another mumsnetter drafted me a letter to send to senco asking her to clarify on what basis she refutes ds private dx i really rhink i will trype it up and give it to her monday

OMGGG Sun 14-Jul-13 00:12:22

we finally have an iep being drawn up too at end of year 2.

senco is sabotaging us. paed is saying things yes ds is showing signs but these signs could be down to something else and that she thinks he is just slow in social dev has low self esteem and is shy. he is not shy. he talks to complete strangers, thats not shy!

im pulling my hair out with worry that nhs wont dx now and in years to come ds will hit rock bottom in school and out and then they will dx much later down the line. i told paed this. she also made very patronising comments about how i must tell ds that i love him and praise him and say well done alot. is she for real? what does she think i am. then in the next breathe she say she is sure i am a wonderful mother and she can see i care for ds very much.

i cannot belive the senco made that comment about you being a single mother and in council housing, what is wrong with these people? clearly they have no idea.

ds teachet has offered to do extra transistion stuff into year 3 but im surr senco has told her not too but i will chase. i bet they wont as if they do it would seem that in one hand they are accepting the issues by offering help and in the offer they are saying to paed nothing is wrong

i also know that the school senco has said behind another parents back whom i do not know that a child in nursery has asd dx and they dont agree and senco said she would see about that she didnt agree and alot of asd dx are based on parents views and parents want dla!!!!!!! this was told to a member of my family by a member of staff at the school

i have never been a problem to the school and have been connected to the scjool for 15 years.

senco is not suggesting to me that she refutes dx although i know she does she only said that to paed. she wrote to me in a reply to a letter from me that she is doing an iep that will reflect the stratergies recommended in private dx report.

bit of a controdiction really seeing as she thinks its all a load of bollocks (sorry for swear word)

.

WilsonFrickett Sun 14-Jul-13 00:18:09

It's fine to swear here grin

I don't know the English system, but my thoughts would be: a SENCO can't overturn a dx. So what you have is a SENCO who is ignoring a dx. So go over her head. Ht/governors/LA. in writing. She isn't doing her job so you need to tackle that.

And in the background, I would also be quietly looking at oter schools. Yes, you can fight for what your child needs. But actually, some schools will give you want you need without a fight. And thats the school you want to be at.

OMGGG Sun 14-Jul-13 00:29:24

im scares to kick up too much fuss now especially as paed has been swayed by school senco alreay. i have heard of mums being referred to CP.
paed has already given me parenting advice which is insane and insulting
i have seen another school that looks great but will i damge my ds by pulling him out when he has made a few friends. he knows where he is and its taken him 4 years to cope with leaving me every morning
he uses a routine as he kept getting told by clas teachers before dx was known that he would be sent to HT if he couldnt come into school nicely, that he was a big boy now and he was scared stiff

i feel if i move him
it should be so he can into juniors aftet summer holidays but summer holidays are nearly here and i cant rush it for him

OMGGG Sun 14-Jul-13 00:31:29

senco has not overturned dx but she has swayed paeds thoughts with regards to dx. she has however def said that ds does not have autism
thank you for replies its very helpful

OMGGG Sun 14-Jul-13 00:41:41

should i ask to be reffered to great almond street centre for complex high functioning autism. based on the fact that paed has been swayed by sch senco and is part of the assessment process through nhs i dont think it looks hopeful.

dont get me wrong i would be over the moon if ds did not have hfa but he does. how else can the traits and behaviours be explained. i know him best. family all agree. im not nuts. i deal with it every day. i have private reports stating it too.

Spiraling Sun 14-Jul-13 07:51:47

Ds loves school, his worried about holidays already. He loves the routine and work. At home a bit of a mess, his stimming and echolalia and need to be in control is v.v. Intense. I think school think I am an over anxious mum and ds is fine. But his getting OT involved and now sending me to see a physiologist to help with support, they are believing me. Ds is very subtle and at school they do not really see it, and also protecting themselves. I do not think the paed will be swayed, it is so complex. It is common knowledge they can behave well at school it is on the nas website.

Handywoman Sun 14-Jul-13 08:02:32

Slightly different now but from Sept to March, and at other times the previous academic year, dd2 would explode after school, the moment she was in the car, sometimes to the extent that I couldn't get her in the house because she'd be in full meltdown...

dd2 has been mostly inattentive at school. Until this year when signs of anxiety have crept in. There's been tears when dd2 has felt under pressure. And demands for 'complete silence in class' to allow her to concentrate. She now has ear defenders to help her block out some noise in class. So dd2 does now show some issues in school as well as out, albeit different 'traits'.

Caveat: dd2 remains undiagnosed, awaiting CDAC.

Strongecoffeeismydrug Sun 14-Jul-13 08:31:19

Ds always used to meltdown at school and was an absolute joy at home and when out and about.
As he's gotten older this has suddenly reversed and he's a joy at school,a joy when out and about but melts down the minute he gets out of the taxi from school.
His need for control has increased 10 fold,his anxiety when he gets home is unbelievable and I actually dread schooldays as he's lovely in the holidays and at weekends.
He's not high functioning so his DX is obvious however when he was kicking off at school support was brought in from everywhere,now it's only at home I'm just left to get on with it grrrrr

Its well known that some children with learning difficulties can hold it together in school only to show difficult behaviours at home. Often this scenario happens simply because their needs at school are simply not being met.

Both the comm paed (not experienced enough and thus easily swayed, you ought to see a developmental paed really) and the school SENCO here have utterly failed you. SENCO also cannot and should not make such pronouncements; she is not qualified to do so in any case so her words should be disregarded.

I would look at another school as of now and apply for a statement asap as well. You will get nowhere with this current school and even if your son did have a statement in place, I doubt very much that they would actually want to help him.

You are really his best - and only - advocate.

Am I right in thinking you've got an appointment coming up with Daphne Keen?.

OMGGG Sun 14-Jul-13 11:01:46

spiraling...im glad to hear your school are on board and making refertals.
out paed actually told me her view has been seayed bu school senco.
however no nhs assessments have been carried out again so it could sway again

OMGGG Sun 14-Jul-13 11:08:04

it does seem to me that to get the nhs and school to adhere to adhere to their needs they have to causing somekimd of disturbance or disruption in class. this is not my ds.

in the holidays my ds has less meltdowns which i think indictaes to school pressure. we havr meltdowns everynigjt and every task is a struggle. ie dressing, washing, getting to bed, sleeping, frustration when mot being understood.

obvs signs do not disapear in holidays but i come to dread them and then when they reach us ds actually calms doen a bit.

i should mention this to the paed.

mumslife Sun 14-Jul-13 11:18:41

I also have a son who holds it together at school andmeltsdown at home. This is quite common and does not mean they do not have asd nyone who says this cannot be so is wrong and rather ignorant

OMGGG Sun 14-Jul-13 11:18:53

atillia..im not about going to the DK appointment now as i already have private Dx - what if the nhs and school still dismiss. i think i have to concentrate on getting nhs sorted.

also i dont want to seem as i am obsessive into getting my ds assessed for a third time.

what do you think?

paed told me i wont get a statement because he is coping at scjool and is noy behind enough.

he is level 1 shoulf br level 2. so not that far behind. his reading is level 2.

i think he has gone up one sub level from
end of year 1 to end of year 2 and jumped a whole level in reading. this is probably down to the group support he has been receinc
can anyone see why his reading would be so much netter than
his maths, writing , science and literacy?

im seriously considering moving him but he doesnt wamt to. he doesnt like sxhool but that could be any school maybe.

also school referred to Spld their learnimg disability lady and put him on sen reg without tellimg me ive only found out coz ivr been pressing them.

If you do have an apt with Daphne Keen I would certainly keep it. NHS could and in your case have given you the complete runaround, they should be accepting the private DX but as I have already stated SENCO is not qualified to state anything medical related, the comm paed is too easily swayed due to outside influence and lack of overall experience and current school are failing your son.

Paed has also told you a lot of old cobblers re him and the statement. If I had been given £1 for every time I have read similar on here from such so called professionals I've have a big pot of pound coins by now. Ignore such naysayers.

He may not want to move schools but this one is not helping him at all and is actively failing him.

SpLD means specific learning difficulties, is your son currently on anything like School Action Plus. Given the fact that outside agencies like the paed have been involved anyway, he should have been automatically placed onto this level of support. You should have been informed immediately. Problem with school action plus is that it is not legally binding and support can be lessened or curtailed all too easily.

Coping there (or just about) is not good enough. He is falling behind and will continue to do so without a high enough level of support.

WilsonFrickett Sun 14-Jul-13 11:48:58

I'm not going to lie to you, we moved schools (for other reasons) and it was very hard. DS more or less wrote off 6 months of school due to the change. But I know from this board and the people on it that in the long term a school move is worth it if it gets you the support your child needs. And if they give it without a struggle, because they genuinely want to help your child, then your life will actually be changed immeasurably.

OMGGG Sun 14-Jul-13 12:11:09

school have said ds is on sch action.

how do i go about geting a new paed , a developmental paed pls?

can i ask for GOSH reffaral as then they will do the ados and thr assessments

othet school i am intetested in said that they have many ASD children, it is mainstream. they will provide help.

tney are very inclusive . im going to speak to new sch senco next week

i told paed that im thinking of moving ds she didnt think that was a good idea stating that he is just coming into his own.

her veiw is he is just shy and slowy socially developed

oh and gave me talk on praising him. laughable and insulting

she said too many parents movr kids and dont take into accouny what the child wants!

she asked me that name of nee school which i told her she knew it and said the trouble is you move him into a school with lots of other similat children that is not good

however it seems like lord and sundry can see asd children are able to hold it and seem to cope well at school sometimes but not her, the so called prof.

should i try and out her?

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