Severe change in AS son's behavior.

[lisa2701]

Hi everyone,

 

I have known about this site for a while and often pop in to have a read but have rarely posted. My ds (ages 5, almost 6) got dx with Autism just over a year ago. I have always thought myself so lucky when I met other mums of AS children who were having such a rough time of it as DS was usually just a "quirky" little boy who liked to do things a certain way, has sensitive hearing, smell and touch etc, but on the whole happy, loving, very well mannered and coped extremely well at school (mainstream), rarely had a meltdown (although it happened) etc. Unfortunately i was unable to get him into a play scheme over the summer holidays, but didn't think much of it. So we got half way through the summer holidays with very little troubles, then all of a sudden it seemed like over night ( in the time of a week at most) my DS changed completely, he became emotional, angry, aggressive, defiant, sensory issues are ten times harder for him than they used to be, he was never a good sleeper but he stopped sleeping almost completely, we have meltdowns on a daily basis, sometimes taking half a day or more to bring him out of completely, he started smearing, bolting, and yesterday even threatened to throw himself under a car. I have pulled every string i have with regards to contacting his doctor who dx him, making the autism outreach and his school aware of the situation, all the visuals we use have been stepped up, so we now have a visual timetable, flashcards, emotion cards and traffic light behavior rewards system. None of it seems to be helping, we've had days at school where he refused to open his eyes or communicate with anyone, days where he spent the entire day emptying and filling his pencil case, and a day where's he's wet himself (which he NEVER does). The school have recognized that there is a problem, and say they will put visuals in place for him, but that was 2 weeks ago and there still not in place, i know the school has a lot to do, and other children to see to but when they have a child falling apart in front of there eyes surely there should be an urgency put on these things? or am I being unreasonable? I have meeting on Monday with his teacher and head teacher to discuss things, as DS gets absolutely no support in class at all. His Doctor has prescribed him Melatonin to help him sleep which he started last night and they seem to have worked last night, and tonight, so i'm hoping that getting a better sleep will help. Suppose i'm just looking for a sympathetic ear to be honest, its so hard, my sons falling apart in front of my eyes, getting worse everyday, and i feel helpless to help him. I have mothers of other AS children telling me to be firm and push the school to get him proper support (something i struggle with as i'm not very assertive)and i have my own mum (who's opinion is usually valued) telling me i'm being unfair on the school by expecting them to get visuals done so quickly (even offered to go to school and laminate the blooming things myself LOL ), my head is a total mess.

 

Thanks for listening, or reading should i say, and any advice or similar stories would be more than welcomed.

 

Lisa xx

[Karen A]

Hi.

As the change has been so sudden is it possible that your son could be unwell and not able to explain.

Constipation,bladder infection or an ear infection can all make young children feel unwell.

They cannot always explain that they are in pain or feeling poorly but just become agitated.

It might be worth asking the GP to rule out any physical causes because that might solve the problem.

Karen.

[justine1]

Hi

Sam is 7 now and he wasnt much trouble at school until he was half way through year one.Before that there were obvious signs that he was "different" but everyone put it down to many other factors and so school didnt do much.

 

Last June he was finally put on school action and he had IEP targets, he started to become very disruptive at school.Last September when he entered year two he stopped learning,started refusing school and was then moved to school action plus and we then applied for a stat assessment.He missed out 40% of school due to exclusions and refusal and he was on half days.He has now been moved to a special ASD unit attached to mainstream.

 

I have been told that many ASD kids are "fine" for the first few years of school as most of the learning is through free play but when they enter year 1 or 2 the expectations are raised and they have to follow more rules.Without knowing what is expected of them,without a clear timetable it causes confusion.

 

The other problem will be the fact that your son was on holiday and possibly the talk of him starting a new school year with a new teacher may have caused him anxiety,hence the reason why his behaviour has changed.

 

My only advice for the meeting on Monday would be for you to discuss school action and IEPs, his IEP's should be realistic targets for him to achieve and should also include what the school are doing to help him achieve them.

Edited September 4, 2010 by justine1

[JsMum]

I would definately book him in with the gp to cancel out anything physical.

 

Also at the same time take a written report of your sons change in behaviour and request that be added to his notes then your concerns are there for future evidence.

 

I would put it in writing to the school also your concerns and ask them to put in place the visual prompts, visual timetable and visual aids by a date, say a couple of days at most and if it is not in place then put in a complaint to the chair of govenors.

 

I would keep a detailed daily diary and note any concerns down.

 

If in the mean time he deteriates further you can take him to your nearest A+E who will do full examination and have access to oncall professionals.

 

It must be a really worrying time for you and can understand your distress, I really do hope things improve soonx

 

 

Hugs and warmth to youx

JsMumx

[lisa2701]

Thanks for your replies everyone.

 

I have DS an appointment at gp on Friday to discuss his excessive drinking habits anyway. we've already had his glucose checked and they came back ok. So i can see the doctor then about his behavior at the same time. Ds does have speech and can usually tell me if he feeling unwell or sore, although sometimes he unable to explain any further. My absolute gut feeling is that he's struggled with the school holidays and then he's went back to school and everything changed (school didn't prepare him in anyway shape or form, all he had was me telling him he was getting new teacher and new class etc) there too and he's just not able to cope with it. His class size has went from 14 to 21, and so the noise level in the class is upsetting him, they have put him in a class up stairs and he hates the stairs because 40-50 children funnel up and down then at morning/breaks/end of days so it can be chaotic, noisy and children bump into him etc.

I have been keeping a brief diary of any situation and triggers as they arrive to see if i can find a common trigger etc but i have found nothing.

As for the school, i was advised they were going to give him an individual timetable a week past Thursday, then he wet himself (which he NEVER does) at school the following Wednesday, and my worry overcame me and i ended up having a run in with the teacher about the fact the visuals were still not in place, and i was told that it was a time consuming task and i was being unrealistic to expect them in place by a week, the fact that they had more children was not going to change and they could do nothing about the fact he didn't like the stairs. Long story short, i ended up in the head teachers office sobbing my heart out, and she has made this appointment for us all to have a sit down on Monday and assured me that the visuals will be in place for him returning to school after this weekend.

Everyone keeps telling me i'm being unrealistic to expect the school to have got visuals in place within a week and it makes me question myself. I don't know whether i'm coming or going, doing right or wrong. I'm only 25 and i still view teachers as an authoritative figure and find myself really intimidated by them, its silly i know, but if i at least knew i was doing right and my expectations weren't too high i could be a bit more assertive.

 

Lisa xx

[JsMum]

There changes in him are serious from wht you wrote in your op.

 

he became emotional, angry, aggressive, defiant, sensory issues are ten times harder for him than they used to be, he was never a good sleeper but he stopped sleeping almost completely, we have meltdowns on a daily basis, sometimes taking half a day or more to bring him out of completely, he started smearing, bolting, and yesterday even threatened to throw himself under a car. so no requesting visual aids within a week in too unrealistic but a real need as you are obvously worried about his safety and mental health.

 

The school have recognized that there is a problem, and say they will put visuals in place for him, but that was 2 weeks ago and there still not in place, i know the school has a lot to do, and other children to see to but when they have a child falling apart in front of there eyes surely there should be an urgency put on these things?

 

It was the schools suggestion to put in place the visual aids too, and it doesnt matter how many children there are, they are responsibil for every one of them including your son, they are responsibile for each child as an individual and they have admitted there is a problem, they cant use the excuse there too busy with other children, if that is the case the school have to admit they can not meet his needs.

 

As for the stair could he not be allowed to stay in the classroom until the mad rush, then be allowed to go and use them in quieter times, my son use to go to school by the reception and wait for his lsa to be escorted to the classroom, then at the end of his sessions I picked him up early so he avioded the mad rush dinner hour or home time depending on his day attendance as he was part time for periods too so only attending mornings.

 

Is there any special needs class/unit within the school for children similair for your son.

 

I understand your son has speech but has difficulties expressing his needs, is he recieving any speech and language therapy to look at communication skills.

 

If not I would request school refer him for speech and language assessment.

 

Ask the Headteacher if there any social skills groups, one J attended was Emotional Litracy and Circle time.

 

Is your son on any special educational needs such as School Action, School Action Plus, if so how long for.

 

If his behaviour esculates further I would request for a statory assessment for possibly Statementing in which everything your son needs will be specified and quantified in that including any 1-1 support he may require.

 

You are not been unrealisitic at all, you have expectations because your son needs the things the school have promised but not followed out.

 

Do you attend any parent support groups in your area National Autistic Society have some and parents sometimes set up independant ones, ring the National Autistic Society to look at any in your area.

 

Contact a family are a great resource for support too, they send you out loads of information on statementing, and other support such as a Helpline, they are very good to get things off your chest.

 

How was your own experience of school, did you struggle and find it a really difficult place, it could be that now your son is in education it is triggering some unpleasant memories and making it harder for you to deal effectively with your sons education?

 

I dont think it matters how old you are to be a parent either, parenting is a very demanding task and it takes it toll on any age parent.

 

I recommend a read of this, and if you felt it was good, printing it off and give it to the teachers.

 

There is other ideas that have shot in my head, too, if he suffers sensory, such as noise and busyness, what about a safe place for your son to retreat into.

 

If he feels overwhelemed in class J can request time out and have five mins to get some space.

 

There is loads of ideas like this, National Autistic Society will provide you with further leaflets and booklets on them.

 

 

http://www.autism.org.uk/en-gb/working-with/education/educational-professionals-in-schools/lessons-and-breaktimes/education-understanding-difficulties-at-break-time-and-lunchtime.aspx

 

http://www.autism.org.uk/living-with-autism/education/primary-and-secondary-school.aspx

 

JsMumxx

Edited September 5, 2010 by JsMum

[JsMum]

Ive just realised your in scotland, so a bit different in England, but contact a family have booklets on education for scoland too.

 

http://www.cafamily.org.uk/families/rightsandentitlements/education/scotland.html

 

JsMumx

[lisac]

Hi lisa, this could have been me posting years ago. I am now 42 son 23 . I am hoping things are a little easier for you i.e family support, internet , education, a better understanding of autism all round ? Or has very little changed ? All i can suggest is keep at it and trust your instinct. Get his health, teeth/ears/eyes checked out .We found out when son was 15 that he had an undiagnosed eye condition which could have contributed to cycles of severe challenging behaviour throughout childhood. Who knows! But it went on to affect all of his supposed education, all the best, x

[Karen A]

http://www.asd-forum.org.uk/forum/Index.php?/topic/20379-sen-in-scotland/

Hi.

I don't know if you have already found it.

If not the link above gives lots of information on SEN and education in Scotland.

The NAS web site also has specific information on Scotland that can be found through the NAS web site.

Karen.

[Karen A]

Thanks for your replies everyone.

 

I have DS an appointment at gp on Friday to discuss his excessive drinking habits anyway. we've already had his glucose checked and they came back ok. So i can see the doctor then about his behavior at the same time. Ds does have speech and can usually tell me if he feeling unwell or sore, although sometimes he unable to explain any further.

 

It may sound strange but even some children with AS and very good language do not always identify when they are unwell.

I have a good friend IRL who is also a Forum member who has often posted about her son who has AS and broke his arm.His mum was not aware at first what he had done.

Karen.

[lisa2701]

Thank you for all the links. As my meeting with school is tomorrow i have set myself the task today to research, learn, print etc anything i feel i need to argue my case for DS so all these links will hopefully save me a lot of time searching. Very much appreciated!!

 

JsMum - thank you for assuring me i am not going crazy and asking for the impossible. I did have an awful time at school, i was severely bullied for four years resulting in a phobia of school and childhood depression, so yes i do believe this does play apart in how i'm feeling, because i know what its like to walk into school and see it as a hostile environment but have no option of being there or not, i remember the stress, panic, and feeling different from the other kids only too well.

 

AS for DS, he does get SALT and has done since he was about 3, its only in the last year that he has started talking just to the sake of it, before that he would speak if asked a question, but he would not volunteer speech. Although is vocabulary is very good he struggles to find his words and when upset often refuses to communicate vocally.

 

I am going to ask to the school to allow DS to come in 5 minutes late at the beginning of the day and leave 5 minutes early at the end. As for breaks i'm not sure how we could manage it as i can imagine that if they held DS back for a few minutes to let the other kids get down the stairs he'd feel as though he was being punished.

 

As for school action or anything similar, no he has nothing like that. He coped very well in P1 and didn't need any support so no assessments, support is in place for him what so ever. I was going to request an IEP tomorrow, do you think this would be a good way to go?

 

I do attend a parents support group, although to be fair its only in the last month i have found them, but have met one or two mums that i get on with very well.

 

There is no special needs classes/units within DS school, but if it comes to that then there are a few schools in my area with such units that i have heard are fabulous. I am hoping that DS will be able to stay in mainstream as he is extremely academic, i have been told by several people that special needs units etc do not focus so much on academics? however i am very aware that his mental health comes before an education and if we must move him to a more suitable school then I won't hesitate to do so, but would like to see if he copes better with support in place before making that decision.

 

Lisac - I would like to think that life is easier for families touched by autism today than it was 20 years ago, the internet is certainly a good source of information and a way to meet other parents. I think there is probably still a real lack of understanding from people about autism, I've had people tell me that my son's autism is a great thing because he's very gifted at reading and maths, which yes is a fabulous thing, and i am extremely grateful that he does not have a learning difficulty on top of things as a lot of autistic children have, so i count my blessings there, but people still fail to acknowledge that "most of" the challenging behaviors seen in my son is down to his ASD. But there are times where he is just being a typical 5 year old like any other and chancing his luck lol.

 

Thanks again.

 

 

Lisa x

[Karen A]

Thank you for all the links. As my meeting with school is tomorrow i have set myself the task today to research, learn, print etc anything i feel i need to argue my case for DS so all these links will hopefully save me a lot of time searching. Very much appreciated!!

 

JsMum - thank you for assuring me i am not going crazy and asking for the impossible. I did have an awful time at school, i was severely bullied for four years resulting in a phobia of school and childhood depression, so yes i do believe this does play apart in how i'm feeling, because i know what its like to walk into school and see it as a hostile environment but have no option of being there or not, i remember the stress, panic, and feeling different from the other kids only too well.

 

AS for DS, he does get SALT and has done since he was about 3, its only in the last year that he has started talking just to the sake of it, before that he would speak if asked a question, but he would not volunteer speech. Although is vocabulary is very good he struggles to find his words and when upset often refuses to communicate vocally.

 

I am going to ask to the school to allow DS to come in 5 minutes late at the beginning of the day and leave 5 minutes early at the end. As for breaks i'm not sure how we could manage it as i can imagine that if they held DS back for a few minutes to let the other kids get down the stairs he'd feel as though he was being punished.

 

As for school action or anything similar, no he has nothing like that. He coped very well in P1 and didn't need any support so no assessments, support is in place for him what so ever. I was going to request an IEP tomorrow, do you think this would be a good way to go?

 

I do attend a parents support group, although to be fair its only in the last month i have found them, but have met one or two mums that i get on with very well.

 

There is no special needs classes/units within DS school, but if it comes to that then there are a few schools in my area with such units that i have heard are fabulous. I am hoping that DS will be able to stay in mainstream as he is extremely academic, i have been told by several people that special needs units etc do not focus so much on academics? however i am very aware that his mental health comes before an education and if we must move him to a more suitable school then I won't hesitate to do so, but would like to see if he copes better with support in place before making that decision.

 

 

 

 

Lisa x

 

Do push for an IEP.

Having some support in place can make a big difference.

In theory the idea of delegated funding is that school can respond quickly when there is a problem without having to wade through bureaucracy to get support in place but this does not always happen in practice.

 

When Ben started in year three he was not coping at all.

He was hiding under tables for some of the day and was very unhappy.

He is 12 now and at a mainstream secondary.

With understanding of his needs and some support he has come on really well.

Things are not perfect and with a site move on Wed due to building work we will have to see what year 8 brings.

However he has done better than we could ever have hoped.

 

It can be a mixed blessing when a child is able in some areas of the curriculum but has AS.

We still find that teachers forgett that Ben has SEN because he sounds so adult.

Some even talk to him as though he was another teacher and then they are surprised when he gets frustrated about things and behaves more like a nseven year old than a twenty year old.

His primary HT never did accept that he could have SEN.

Karen.

Edited September 5, 2010 by Karen A

[lisa2701]

Thanks all who gave advice, definitely going to push for an IEP. My meeting soon (half an hour from now), so wish me luck and i'll let you know how i get on.

 

Lisa x

[lisa2701]

Hi everyone,

 

thought i'd let you know how things went today at school. Long story short...

 

they going to make an o.t. referral for DS sensory issues. They hoping they can get him something to muffle the noise in the class and a cubicle to go round his desk to help cut out any visual distractions as he's said the class has too many people in it and he can't concentrate (in a round about way).

 

They have now put all visuals into place, and supplied him with an individual timetable.

 

His outreach worker is going to do some training with the classroom assistants so that they can help with him more and communicate with him better.

 

Going to have a classroom assistant greet him in the morning and help him with hanging jacket up etc as he's been a bit lost in amongst the hustle of all the children in the mornings trying to hang up jackets etc, and do the same at the end of the day, take him down before the other children and let him get ready and out the way of the other children before they come down and things get manic.

 

And in future they said they may have to look at a laptop for him as his "special interest" is computers, so it might help him with his English, as he struggles to write.

 

They said that they do have him on some kind of list that mean they are keeping a special eye on his progress and discussing any needs with the learning support teachers. They do not feel that we are at the stage of requiring an IEP but if things deteriorate any then they are more than happy to have one written up at that time.

 

I'm sure there is some other things, but i haven't got my notes on me just now so they are some of the main ones.

 

Although I came out without an IEP i did get the impression that they were taking things seriously, and assuming that the things discussed get put in place in a reasonable time frame then i am happy about what they are putting into place will help they key issues at this moment in time.

 

Also, in my son's school there is an "autism annex", however, although it is within DS school, it is not a part of his school, the special needs school in our area wasn't big enough to accommodate all children so they have 2 rooms in DS school that is for them. But his head teacher did say that despite it not being part of there school the specialized staff have been good for helping them with idea's and any advice. And they took us into the autism annex class to show us the cubicle they plan on getting for DS, so that was good to be able to visualize it and how it can help.

 

Not sure how long to expect an O.T. referral to take, i'm hoping not too long, but suspect it may take some time. Anyone have any idea on average how long a referral takes?

 

If anyone has any thoughts etc then as always i'm more than welcoming of them.

 

 

Lisa x

[smiley1590]

has MH probs been looked into as could be the result of frustration of depression or anxiety? has this been looked into? as can be overlooked as just aspergers but could be something much deeper i know change can mess up around with everything especially your head .... and make you lost and confused you become annoyed and anxious

 

XKLX