Advice needed!!!

[lisa2701]

Hi everyone,

0)

i have a 6 year old son with ASD. He is mainstream school (p2). Let me give you a bit of whats going on first....

 

S was dx just over a year ago with ASD, however he was a happy relaxed loving little boy who was thriving (way ahead of his peers in maths and reading) in a mainstream setting with no support needed. Then came summer holidays...

 

My once loving, happy child turned into an angry, uncooperative child. We now have regular meltdown, where he either shuts down and becomes non responsive or becomes extremely violet. He seems to be in a constant state of stress and irritation.

 

He's not been happy at school either. He's been refusing to communicate with his teacher, refusing to go into class, and sometimes even refusing to go into school in the morning, he's coming out of school stressed and very angry every single day,and he's wet himself a few times(which really isn't like him). I've had a meeting with the school and they were going to put an o.t. referral in for him as there are a lot of sensory things upsetting him, noise, class size etc, but of course its taking forever. I had parents evening the other night where i was told that he's been refusing point blank to put pen to paper, and the teacher can't put any pressure on him to do it or he has an episode (stops responding, closes eyes, won't walk or talk). His school work is obviously suffering as is his state of mind.

 

I had an appointment with the paediatric consultant i see for his autism, and she believes everything that's going on, even at home, is a result of him being so stressed out about school. His class is very cluttered and cramped, and he now has to manage stairs, which he hates, and there are more children in this class than there was last year etc etc. I am going to get an appointment with his outreach worker to discuss what we can do within the mainstream setting to help him, but I am really starting to wonder if its worth looking the the few autism units around me. I was told that because he is a bright boy that we won't be able to get him into a unit like this?

 

Suppose I'm looking for any advice, similar stories, and your experiences of autism units as supposed to main stream?

 

Really at my wits end, worried sick about him and the state of mind he is obviously in, but kinda feel that (on the short term) i'm helpless to help him. Any advice would be great.

 

Lisa xxx

[justine1]

Hi

My son Sam is 7 yrs old with ASD.He is very bright,is well above average for reading.He appeared to cope well in a mainstream school for all of reception but half way through yr one the behaviour changed.

 

It started off as minor incidents that could easily be dismissed as he is a boy and young etc.The school put him on school action and started IEP's.

By the start of yr 2 he was running out of class,hiding under tables,lashing out,generally doing his own thing.So he was then put on school action plus.Just 3 mths after starting yr 2 he had his first fixed term exclusion.By the January they had enough and he was put on half days and the ed psych and autism outreach. We then decided by easter to apply for a stat assessment.

 

During the 6mth statementing process Sam was excluded 3 more times and had missed many days due to school unable to cope.Finally in July just before holidays he was placed in an autism unit attached to mainstream.

 

His statement only came through today,the LEA and the school dont usually allow kids to attend the unit until the statement is finalised but Sam had missed all of yr 2 so they had to act fast.

 

He is very happy at the unit,there are kids that are more severe than him,he has said one boy uses a potty and two are non-verbal.But he is happy.The communication between me and the school is much better and he has come along way in such a short space of time.They have moved him up a level in all his subjects,I was told that he is very intelligent but because he was unhappy he wasnt reaching his potential and nobody was motivating him.

 

So yes,even though your son is bright the unit may help him,but all units are different and it is a good idea to have a look around as many as possible,remember they are all about re-intergration so you must see the yr group classroom and you must like the whole school not just the unit.

[bensmum2]

Hi , have you spoken to school about statutory assessment? is he on shcool action or school action plus? He would need a statement to go into one of these units and maybe if he had one he would get more help at school anyway and cope better. Talk to school again about statementing,rather than just OT. They told me my son was achieving too high for a statement, but by year 6 school made him so ill and by the middle of year 8 he had missed so much i ended up home schooling through year 9, He has matured and gained more independance in that time but we still fought for the help he needs,we went to tribnunaL in September and we won . He has a place at a special school as the tribunal ruled that whatever help a mainstream could give him academically , he just couldn't cope with the sensory side and he wouldn't be able to learn in such an environment. He starts his new school tomorow, in a class of 7 !! whta i'm saying is , even if eh is bright and clever they are supposed to consider the emotional side as well. During his assesment , i was told by all the professionals that he wouldn't get a statenent for emotional needs, but i argued how he feels about himself and the environment he is in, directly affects his academic performance.When he is calm he achieves more. The LEA argued back but the tribunal accepted it. Good luck x

[lisa2701]

Hi,

 

Thanks for your replies. I live in Scotland so i believe that we do not have statementing? He is not on any school action or action plus. The school don't even think he needs an IEP, I have told them that I disagree and that i want one done, but waiting on a decision. I think they probably will give him one to be honest, but they won't be overly happy about it (they say i'm being premature in asking for one?).

The school say that other than in the morning and last thing (both busy noisy periods) he is happy enough ....generally speaking. Then on the other hand they say they can't get him to do any work and if they push the matter he has an episode. So in other words he is happy as long as he doesn't do any work other than reading? But also, they had to call me into school twice last week due to him not going into class and completely shutting down.

 

I am going to arrange a meeting with his autism outreach worker this week hopefully, and put to her that both myself and his specialist Dr believe that the complete change in his personality (both at school and at home) is a direct result of stress due to school. I am hoping that now i have the back up of the Autism specialist in my area that his outreach worker will be more active in getting him support and i believe if it comes from her the school will not argue about it. Failing that i think i may have to get some advice from an independent source who can maybe attend meetings etc with me. Not sure how that works but heard there are people out there that can help. I was really hoping to get the school working with me rather than start fighting the school but it might not be that easy.

 

once again, thanks for the replies.

 

xx

[justine1]

Hi

If you look under the education Tab at the top is a "SEN in Scotland" tab if you click on that it has loads of useful links.Good Luck x

[bensmum2]

Hi sorry i didn't realise that about scotland,but even if it's not the same system i would have thought you could start the process for whatever help he can get yourself, in england we can make a parental request for a statement, which is what i did.speak to someoe like IPSEA or ACE if they can't help because you are in scotland, i'm sure they will point you in the right direction they both have helplines and you can find them on the internet. Good Luck x

[sinai]

hi

 

while he is still in school until you decide what you are going to do, why dont you introduce at school some reinforcement to get him to cooperate ie a token reward system where he has to earn stickers to get something he really likes to do, or would want. it usually works well, especially if at first he only has to earn 1 sticker and gets a reward straight away until he gets used to the system.hop this helps.

[coolblue]

My gut feel (so to speak) is that this isn't an educational problem at all, but a physiological one. He might do better in a specialised unit, but it's a bit odd that his behaviour suddenly changed at home and has stayed changed at home and school. I know this is a thorny issue, but have you looked at his diet?

 

Some autistic children do appear to be sensitive to gluten and/or casein, for example, or certain food additives. My son's behavior changed quite dramatically for the better (he stopped being lethargic and floppy) when we switched from cows' milk to goats' milk, for example, and he appears to be sensitive to salicylates. He also got unbelievably grumpy when we tried fish oils.

 

Dietary problems don't always show up as gut problems, incidentally, because they can affect other aspects of physiology. Worth working through some of the more likely candidates.

 

cb

[lisa2701]

Hi everyone,

 

thanks again for all your replies.

 

Justine - I will definitely have a look through the SEN Scotland on here, thanks for drawing my attention to that.

 

Sinai- We use a system like this at home to try encourage him to do homework without arguing about it, unfortunately, it doesn't work, and what we offer him is computer time (computers is his "special interest" so if this doesn't work nothing will!!!

 

Coolblue - Its not a dietary thing as S's diet hasn't changed, he is a good eater and eats a balanced varied diet, but he always has. I totally agree that this is psychological but my gut feeling is that he didn't cope with the summer holidays, I was really hoping once we got back to school things would settle back down, unfortunately things have just spiralled even more out of control since the school started back. Instantly S made us aware that he did not like the fact his class was up stairs this year, he said the class was VERY noisy, and there were too many people making it very busy. Turned out his class size had increased by about 7 children and the teacher admitted it was a particularly noisy class . There is definitely a huge stress related to school in his mind. There hasn't been any changes at home that i can think of that would've upset him to this degree and for this long. I know why you might have come to this opinion though as his behaviour started changing over the summer holidays, but it didn't get this bad until school started back.

 

xx

[Sally44]

I have been looking around local secondary schools recently, trying to see if any of them would be able to meet my son's needs.

What I have found is that every school and every room within the school has a different environmental/sensory profile.

I have an auditory processing disorder and in certain environments I cannot hear and I cannot screen out background noise. Certain voice tones and types of noise and accumulation of noise sources is very irritating to me. I am not on the spectrum.

When I was at school each child had a desk, faced forwards, and there was no or little wall decoration. Now every classroom wall, floor and ceiling is highly decorated. Children are noisy. 6-8 children sit at a table and each table maybe doing something different.

Rooms are decorated differently - some carpetted which makes the noises more tolerable to me. Others are not and sound tinny/echoy.

That is just me. And obviously we cannot get into our childrens head to experience what they do. But if the child is telling us things either verbally or in behaviour, then we have to listen. Especailly when it is a deterioration.

 

My son can not cope in loud, noisy, decorated classrooms that contain many pupils. He is worse in assembly situations. He is great in low arousal 1:1 and small group environments.

 

I think the school/Autism outreach Teacher and/or EP needs to try different teaching environments. And you may not be able to get the optimum environment he needs within his current school.

[lindy2017]

Hi everyone,

0)

i have a 6 year old son with ASD. He is mainstream school (p2). Let me give you a bit of whats going on first....

 

S was dx just over a year ago with ASD, however he was a happy relaxed loving little boy who was thriving (way ahead of his peers in maths and reading) in a mainstream setting with no support needed. Then came summer holidays...

 

My once loving, happy child turned into an angry, uncooperative child. We now have regular meltdown, where he either shuts down and becomes non responsive or becomes extremely violet. He seems to be in a constant state of stress and irritation.

 

He's not been happy at school either. He's been refusing to communicate with his teacher, refusing to go into class, and sometimes even refusing to go into school in the morning, he's coming out of school stressed and very angry every single day,and he's wet himself a few times(which really isn't like him). I've had a meeting with the school and they were going to put an o.t. referral in for him as there are a lot of sensory things upsetting him, noise, class size etc, but of course its taking forever. I had parents evening the other night where i was told that he's been refusing point blank to put pen to paper, and the teacher can't put any pressure on him to do it or he has an episode (stops responding, closes eyes, won't walk or talk). His school work is obviously suffering as is his state of mind.

 

I had an appointment with the paediatric consultant i see for his autism, and she believes everything that's going on, even at home, is a result of him being so stressed out about school. His class is very cluttered and cramped, and he now has to manage stairs, which he hates, and there are more children in this class than there was last year etc etc. I am going to get an appointment with his outreach worker to discuss what we can do within the mainstream setting to help him, but I am really starting to wonder if its worth looking the the few autism units around me. I was told that because he is a bright boy that we won't be able to get him into a unit like this?

 

Suppose I'm looking for any advice, similar stories, and your experiences of autism units as supposed to main stream?

 

Really at my wits end, worried sick about him and the state of mind he is obviously in, but kinda feel that (on the short term) i'm helpless to help him. Any advice would be great.

 

Lisa xxx

Hi, I can identify with your story my son who is 11 not yet dx but on waiting list has sililiar issues i ahd tot ake him out os school because of them he started yr 6 last september and was very unhappy anxious having bad meltdowns etc which i didnt know what they were sto start with until i investigated ... my other 3 older children have aspergers/autism traits.....i think becasue of his age now it is coming to light.....he has meltdowns if i talk aobut school i ahd a meeting at the school where he is suppose to be and they have let me have a tutor for 5 hours a a week.....he ok about this so far it started last week....but dont know how he will react when they suggest goign to school for a few hours its stresses him out the noise children etc.,.......i jsut want a dx so i can get some support ......i know how you feel he prefers being at home for schooling...lindy

[BusyLizzie100]

Hi everyone,

0)

i have a 6 year old son with ASD. He is mainstream school (p2). Let me give you a bit of whats going on first....

 

S was dx just over a year ago with ASD, however he was a happy relaxed loving little boy who was thriving (way ahead of his peers in maths and reading) in a mainstream setting with no support needed. Then came summer holidays...

 

My once loving, happy child turned into an angry, uncooperative child. We now have regular meltdown, where he either shuts down and becomes non responsive or becomes extremely violet. He seems to be in a constant state of stress and irritation.

 

He's not been happy at school either. He's been refusing to communicate with his teacher, refusing to go into class, and sometimes even refusing to go into school in the morning, he's coming out of school stressed and very angry every single day,and he's wet himself a few times(which really isn't like him). I've had a meeting with the school and they were going to put an o.t. referral in for him as there are a lot of sensory things upsetting him, noise, class size etc, but of course its taking forever. I had parents evening the other night where i was told that he's been refusing point blank to put pen to paper, and the teacher can't put any pressure on him to do it or he has an episode (stops responding, closes eyes, won't walk or talk). His school work is obviously suffering as is his state of mind.

 

I had an appointment with the paediatric consultant i see for his autism, and she believes everything that's going on, even at home, is a result of him being so stressed out about school. His class is very cluttered and cramped, and he now has to manage stairs, which he hates, and there are more children in this class than there was last year etc etc. I am going to get an appointment with his outreach worker to discuss what we can do within the mainstream setting to help him, but I am really starting to wonder if its worth looking the the few autism units around me. I was told that because he is a bright boy that we won't be able to get him into a unit like this?

 

Suppose I'm looking for any advice, similar stories, and your experiences of autism units as supposed to main stream?

 

Really at my wits end, worried sick about him and the state of mind he is obviously in, but kinda feel that (on the short term) i'm helpless to help him. Any advice would be great.

 

Lisa xxx

 

 

Wow, it's weird to read your post because it sounds like something I could've written!! My youngest is a bit older than yours, aged 8 and in Y3, but he sounds a lot like your son. Things have deteriorated rapidly since starting y3 in September. He is so angry all the time and it is getting increasingly more worrying. he is refusing to go into class in the morning and tells me things like it makes him feel better to get under the table and bang his head...

 

I'm starting to think that we need outside input, eg psychologist or EP. He already has counselling once a week in school but this is very much his own space to vent.

 

Problem is I'm very familiar with the way things work round here and I know support for him will be minimal, largely because he is so bright and otherwise able. My eldest was in a similar situation, although at age 8 he was obviously anxious rather than angry - after constant battling he eventually got a Statement at the end of Y6 and is now in Y8 at a mainstream secondary, altho we are now having issues with compliance...

 

I feel really blue at the thought that we're going to have to go through the whole thing again with my youngest, although at least I know the system better now. And also, the way he's going it's looking like he may become more and more disruptive, which is often more of a catalyst for action than anxiety or passive behaviours...

 

I'll be watching this post with interest; let us know how you get on, Lisa.

 

Lizzie x <'>

[lisa2701]

Aww Lizzie, sounds very similar. At least this time round you have better knowledge of the school system like you said, its a bit of a mind field really isn't it. Its just awful.

 

Like i've said before my son has autism outreach come into school to see him, turns out they were only meant to come in once a month this year but after seeing how bad things have gotten she's decided she needs to come in every week now.

 

So i spoke to his outreach worker today about what his Dr said, and how i feel the classroom environment is too busy and cluttered and disorganised (she totally agrees), the school agreed to allow S to go down stairs before the rest of the children but have done it some days and not others , that kind of thing going on. So she is going to set up a meeting with the school where she will come with me and tell the school that they need to sort out the classroom environment, that they MUST have someone take S down stairs before the rest of the other children at breaks and home time, she's going to arrange for S to have more frequent breaks to allow him to calm down and de-stress, individual work station put into place etc. There will no doubt be a lot more discussed at this meeting(such as the fact i want an IEP)but I was so relieved to hear she agreed with me about how stressed he is and that something has to be done and it sounds as though she will be good at making sure whatever the school agree to they actually follow through on. It sounds very much like it is a case of, we just need to him through this year by using whatever strategies we can and then next year when the school can apply for funding then they can get him good solid support, better class room (not so dark and small) maybe a support worker in class for him that kind of thing. A lot will depend on the outcome of this meeting, which will no doubt be after the october holidays now as to if i'm happy about the situation or not, but it does sound very much like she is on my side and will do most of the arguing for me (i'm not overly assertive) so this takes a lot of the anxieties regarding meetings off me. She obviously has a lot of knowledge and experience with children on the spectrum so i'm hoping she will be able to suggest things that the school and i maybe hadn't thought of. Now looking forward to having this meeting and seeing what she manages to get in place for him.

 

Lisa xx