Reducing stress in 5 year old with ASD

[mamabell]

Apologies that this post is so long! I am new to this site and have a newly diagnosed son with ASD (Asperger's). He is 5 years old and this last term his behaviour has deteriorated to such an extent that he has been excluded from school and basically been told he is not welcome back (as he refuses to do what the teachers tell him and he has been violent to the teaching staff on 4 occassions - the last time hitting or kicking 5 members of staff). His behaviour has also deteriorated at home with aggresssion (hitting, kicking, breaking things, throwing things, shouting), major meltdowns (1-2 hours most days), OCD, control issues (wanting to control all situations on his terms) and fear of being left alone all spiralling out of control. I think his deterioration may be related to stress and think it is linked to school and how they manage him. I have spoken to every LA department available and none have offered any help, other than we have had to move schools (he starts part time next week at another mainstream school). I was interested in trying to get some therapy for him - ideally play therapy, but our LA don't have this resource available - does anyone have any experience of this and know of anyone who could provide this in the Berkshire area? Or experience of whether any other therapy has helped - such as anxiety or anger management therapy - bearing in mind that he is only 5. Since being excluded (7 days ago) his behaviour has improved dramatically and the aggresssion has reduced almost to nothing but I am worried that when he starts his new school, the behaviour will return.

[TotalChaos]

Hi and welcome mamabell. sorry that you and your DS have had such an awful experience with school. Has any professional such as a person from autism outreach team or the ed psych given any advice on how best your DS can be helped manage in the school environment? what is available helpwise and what they call it varies from area to area - I would try and get in touch with your local branch of NAS (national autistic society), www.nas.org.uk to see what could and should be happending to help your DS. I guess if you could get your DS referred to CAHMS then they might be able to offer some advice about reducing anxiety but as ever these things on the NHS tend to have rather a waiting list (again varies from area to area). You might also want to look at website for ipsea or SOS!SEN to get advice about statementing (so as to get support for yur DS at his new school on a formalised legal footing).

[brandy77]

Hi mamabell, i can totally sympathise with you. My son is 4.5 years old (ASD/medical)and due to start school in september. He didnt start preschool till last september, and took 3 months to settle in with me gradually leaving him. We have had our ups and downs with preschool, good weeks where hes excited about going and bad weeks where he refuses. A month ago he has refused point blank to go and said he hates it and i havent even managed to get him out of the car. For the last 2 weeks i have given up taking him and informed the preschool that he wouldnt be finishing the term off. They are fine about it because obviously he doesnt have to attend, but im obviously aware he HAS to go to reception in september.

The change in him is quite remarkable, his anxiety has lessened and he is sleeping better. He is still scared of being alone and following me around the house and still sscared of sleeping alone (im sleeping with hhim for the last 5months) BUT the violent behaviour has decreased so much it is unreal.

I am now dreading him starting school in september as hes already telling me now in crying fits that he doesnt want to go Ive also told the staff that he will be violent and get excluded on his first day. The school are supportive and say he wont be eexcluded, but they honestly dont know what his outbursts are like.

My mother has told me to enjoy him for the next 2months and i am, i truly am because even though we have had a few major meltdowns he is so much happier. All he says to me is that he likes being at home

Ive also, as totalchaos says, been told by many people to get him statemented but the school say they will monitor him for a few months and if need be apply for a statement in january. Its awful isnt it, but on reading your post im glad that your son appears to be exactly like mine so i dont feel so alone. Sorry i didnt give any advice as i wouldnt know what to say, but will be following your story with interest

[mamabell]

Thanks TotalChaos.

We have had Autism Outreach and Ed Psych involved (plus the Behaviour Support Team). Autism Outreach suggested a quiet room to get away from the stresses of the classroom, smaller group work away from the main class and flexibility, however the school were not prepared to do any of these things. We got an emergency referral to CAMHS last week and had an assessment meeting which was quite frankly useless. They were not able to provide any support for my son (due to his young age) - they said all they could help with was diagnosis, but we have a formal diagnosis already. We are at proposed statement stage at the moment. This is how the school managed to get him out - they called a meeting with the LA and said they couldn't cope with him and brought in the school governers as extra weight to say he should be placed in a different school. We were only provided with one alternative which we have had to go with.

Every LA department we have had meetings with has admitted that there is a gap in their provision to support my son, which doesn't help him!

I guess you can see my frustration!!

I will try the NAS helpline to see if they have any ideas. Thanks for the suggestion

[mamabell]

Hi Brandy77,

Your experience sounds so very similar to mine. My son has been excluded for nearly 2 weeks and the change in his behaviour is unbelievable - nearly all of his aggression has gone and he has become so much calmer and happier and his sleep has improved too. He still won't be left alone and follows me around everywhere and has had a few tantrums about not getting his own way.

But I really worry that he will revert back as soon as he goes back into the school setting.

My word of advice to you is to push to get him statemented as soon as possible. The school have blamed the LA for refusing to assess him for a Statement - he was refused at Christmas so we appealed and they backed down and agreed to assess him - he will be getting one to one support full time.

[TotalChaos]

sorry that you've followed all the more obvious sources of support and have got precisely nowhere. school have behaved awfully, and shouldn't be like that in this age of inclusion, I do hope LEA bollocks them for their attitude.

[mamabell]

We are very new to all of this and have had a baptism of fire this term. But it is good to be able vent some of my frustration here . You are right about the school. Thanks for your comments.

[milou2]

All I can say is that one further option is home education and do a search on my posts using my name. They aren't all positive but they are a lot more positive than before I took ds2 (hfa) out of school.

www.he-special.org.uk is a website with a discussion group attached

You don't have to be home educating officially to join the list, just vaguely considering the idea, and most people join when they are desperate from what I can tell.

[AttilaTheMeerkat]

mamabell

Did no-one ever advise you to apply for a Statement prior to DS starting school?. This is absolutely appalling if that is indeed the case.

IPSEA also have details on exclusions with and without a Statement. It is well worth reading.

I would also suggest you apply for a Statement asap (you too brandy77 and don't listen to their crap re applying for it in January either. You MUST apply for it now, do not let the school do so. You can appeal if LEA say no to assessment, school cannot). Mamabell's situation with her DS is not unknown by any means and can show all too clearly what happens when it all goes pear shaped at school.

IPSEA have model letters you can use - use them!!!. It can also take six months for a Statement to be set up if it is agreed so time is of the essense here. I would therefore be applying for a Statement asap and hopefully in the meantime this new school will be more understanding.

You are your child's best - and only - advocate.

[AttilaTheMeerkat]

www.ipsea.org.uk

www.ipsea.org.uk/exclusionproject.htm

[brandy77]

write ok, thanks attila, im going to draft a letter from the link you have provided and send a letter today, just needed another person really, like yourself, to confirm that i def need to apply for a statement. Bet the school wont be happy,lol,oh well, tough

milou2, ive also had a few discussions with my mother that i could end up homeschooling my son, especially in light of how much happier he has been for the last 2 weeks. Not an option i would take lightly as i have signed up for a few OU courses since handing my notice in at work due to my son exhausting me.

mamabell, we must keep in touch, our sons seem so alike and being the same age and going through the same in september, i would love to be able to swap notes/support with you

[BONKERZ]

this situation sounds very similar to mine as well, it seems all too comoon in MS, although you do get the good MS schools that will do everything they can to help!
My DS was 5 when he started becoming a problem at school and was referred for assessment, unfortunately for us without a DX we could not get any help for DS and he was excluded from 2 MS schools.
We did manage to get a statement for 32.5 hours of 1:1 support for him though and in aug last year he was DX ASD and started at a specialist school for autism in OCT last year. He is actually doing brilliantly now!

For DS there are a few things that help lower his anxiety levels.
DS needs access to a calm room, space away from everyone where he can be angry but safe.
He needs a schedule so he knows whats happening and his school provide him with a small folder where each page is a time slot of the day and as he does the activity for the time slot he is able to rip the page out.
DS also has access to a visual timetable of the day.
He has his own separate working area separated by display boards which helps him concentrate better.
Dss lesson times are limited to 20 minutes of actual writing and afetr 20 minutes of good working he gets to go for a run around or a jump on the trampoline.....i am actually still impressed with how well this works with DS and how much he actually manages to get done!
at home we use a visual timetable with his tasks for the day on and also write on whats for tea etc because we have found DS is less anxious when we avoid eye contact and this tends to mean conflict to ds and he has ODD too!

[brandy77]

Wow that sounds so positive bonkers. Ive started using a visual timetable for my son since speaking to the NAS society, my son loves it and likes setting up the pics for the day ahead. Saves me having to put up with constant questions about whats happening during the day

[mamabell]

Thanks Milou - homeschooling was suggested by our Paed as a consideration but at this stage I would worry about him losing some of the social skills he has picked up at school. But if school continues to stress him out I will revisit your links.

Attila - I wish we had known about the statementing process before school - we have learned the hard way since my son started school. It has taken 2 attempts to get him assessed (we appealed against the LEA decision and they backed down), but it has still taken most of this school year to get to proposed statement. He has been given one to one support full time and there are lots of suggestions for how to support him within the classroom.

[mamabell]

Bonkerz - thanks - your advice sounds just what my son needs - these were the sort of things that his school were asked to do and were not prepared to support him with.

I think my son may have ODD too. It sounds like we have a lot in common!

Brandy - agree that we should keep in touch

It sounds like we are going through similar issues. I am about to hand in my notice at work because the stress of dealing with school, home and work has just got too much

Just wanted to say - I feel like a big weight has been lifted knowing that I am not alone with these issues.

[brandy77]

mamabell, apply for carers allowance if you do hand your notice in, its not an awful lot but everything helps

[oliandjoesmum]

Hi Brandy77 and mamabell
I don't post all that often, but this thread reminds me so much of my own situation thought it may be useful to add some support. My son is 8 and in year 3, he has aspergers. School has been a nightmare for us, he finds it stressful and can be very aggressive. He was at a big m/s school that didn't work for him, so we moved him to a smaller one where he had friends. This 'managed' him so he was a bit happier (ie not threatening suicide!!) but it has not addressed his problems. I have spent the last 6 months fighting for an appropriate statement. during this time we have had at least 8 temporary exclusions, I feel like my son and I have been treated appallingly by the school, parents and governors. I have a place for him in September at a ms school, with a resourced provision for ASD kids. He will have access to the provision, but also funding for full time 1-1 in mainstream classes as he is academically very high achieving. The new Head is so understanding, all the teachers are trained, all the children are educated about autism, all the parent's are aware. The head has recruited a great 1-1 with a lot of experience of ASD kids, something the existing head tells me doesn't exist (?!?).
The statement is key here, fight fight fight to get what you need. I will not let the system throw my special, bright, amazing little boy on the scrapheap because they 'can't cope' with him. There is always something out there that will work, but you have to look, no-one will tell you. I too have found work/ looking after 3 children/ trying to get this funding extremely stressful. I have only just returned to work after 6 months off with stress. My heart is breaking at the thought of him going to school in a taxi, and leaving all his friends behind at his current school, I am crying as I type because I just wish it was different. But it isn't, and I know I am doing the best I can for him. Please have a search on my logon if you want any background, it may reassure you if you see how bad things were for us, and how much having a statement has now helped.
Keep in touch, knowing you are not alone is so important in this as you feel so isolated by all the 'smug' mummy's at school who have no idea how hard it is to be in this horrible situation.

[mamabell]

oliandjoesmum your story sounds just like mine. I know exactly how you are feeling at the moment and sympathise with you. You've got me in tears too. It sounds like you have been really strong at fighting for what your son needs though.

Unfortunately there is no mainstream school with ASD provision locally so his only option is another normal m/s school.

My son starts his new school tomorrow and my heart breaks too when I think of him leaving his friends and his older sister (who is still at the school). I am also really worried that because his anxiety/stress levels are so high he will flip out at his new school over small things.

He has also talked about wanting to die a few times recently.

I have several friends at the school who have been supportive, but they don't know what it really feels like to be in this situation so it is really good to know that I am not alone.

[BONKERZ]

how far are you from tadley near basingstoke??????

[mamabell]

Hi Bonkerz,

About 40 minutes I think?

[BONKERZ]

they have a priory school in tadley which is autism specific! my son goes to one in leicestershire!

www.priorygroup.com/facilitySearch/viewFacility.asp?facname=Tadley%20Horizon%20School

may be an idea to contact them and go visit and see what things they do with the children, could give you some ideas to help in MS or even consider the school.

i contacted my local priory school almost 2 years before we actually got DS into the school, they gave me loads of advice and support and eventually helped me fight the LEA to get DS a place.
would say anything is worth a try!

[mamabell]

Hi Bonkerz,

That's a great idea - many thanks - will give them a call.

[BONKERZ]

i know that when i was at the point you are now i had to feel like i was doing SOMETHING, ANYTHING to help my DS and i suspect you are feeling like this too.

[morningsun]

sorry if this has been said before but schooling is compulsory the term after they turn five.

[BONKERZ]

morningsun.......i dont think anyone has said OP son is not at school.....i dont understand your post.

[oliandjoesmum]

Hi mamabell, I hope he was OK at the new school. It is so hard and worrying I know. Mine will be at his 3rd in a year come September, it would be hard for any child, let alone ones like ours. My middle son is at the school he left in December, so I know how you feel about the sibling thing to. I feel like ds2 has a 'normal' life, being taken to and from school by his Mum, there with all the friends he has had all his life, never in trouble etc etc. It makes me so unhappy for ds1, I feel like he is excluded from our life going to the new school, it just seems so unfair. Like everyone on here I am always searching for the 'why', why him, it is horrible. Doesn't really help at school when you are treated like a rubbish parent with a naughty child. Honestly, I would do ANYTHING to change his behaviour, I would if I could, surely they understand that??