"I never get to have a happy day!"

[Salbaggio]

My son is 5 and we suspect he has AS. This realisation is quite recent and up until now when he has come out with overly dramatic statements I have effectively patted him on the head and smiled to myself. He has been known as a drama queen in the family for the funny things that he comes out with. Now though, I am feeling so sad because I fear that I have not been taking his genuine outpourings seriously.

 

Today at school they have watched a film relating to Rememberance Day. It has really upset him. As soon as he emerged from his classroom, pursed lipped and shaking his head I knew something was wrong and I have had a good chat with him and I feel that I have unearthered a can of worms. He is usually so difficult to talk to and in the last hour he has poured so much out, the most upsetting part being that he feels he never gets to have a happy day. He says that all of the other children have happy days but he doesn't! Is this likely to be how he really feels or is it his way of expressing his unhappiness with today?

 

Basically the thing that has upset him today is that after watching the film mentioned above the other little boys wanted to play at soldiers/war. My son agreed to this game but when he realised that it was a "mean" game as he described it he got very distressed. He is talking about all of the dead soldiers that are buried and he can not understand why anyone would want to make a game about this subject matter.

 

I have talked to him about the fact that people in life will sometimes choose to do things that don't make sense to us but we have to learn to accept this. He does not have to play such a game himself but the other little boys are not wrong because they want to.

 

It seems that he just sat on a bench and cried so I have said that maybe he could find a teacher next time and explain that he is feeling sad for whatever reason?

 

Do you think that I am heading in the right direction?

 

He also explained why he is eating less and less of his packed lunch every day. He says that he feels nervous because lunch times are very noisy and also the dinner room is up 24 steps (he counts them every day to be sure!) and he ends up with tummy ache! Should I see if we can make an alternative lunch arrangement or is this something that is going to have to deal with?

 

If you have read all of this then please give yourself a pat on the back and accept my apologies for the rambling!!

[aro]

He also explained why he is eating less and less of his packed lunch every day. He says that he feels nervous because lunch times are very noisy and also the dinner room is up 24 steps (he counts them every day to be sure!) and he ends up with tummy ache! Should I see if we can make an alternative lunch arrangement or is this something that is going to have to deal with?

 

With regards to this, speak to the school. My dd used to have her lunches in her classroom but has gradually been introduce to the dining room. The school did things like sit her at the opposite end of the room to where the plates were scrapped (her worst noise!) and letting her go in 10 mins before the others so that she had a chance to eat some lunch before the crowd. Also that meant she didn't arrive straight into a loud noise as the sound would build at a speed she could cope with.

 

Hopefully these small adjustments that the school could make might help your son.

 

A x

[moomum]

My son is 5 and we suspect he has AS. This realisation is quite recent and up until now when he has come out with overly dramatic statements I have effectively patted him on the head and smiled to myself. He has been known as a drama queen in the family for the funny things that he comes out with. Now though, I am feeling so sad because I fear that I have not been taking his genuine outpourings seriously.snip

 

Oh gosh, what a sensitive boy you have there. Mine is also very sensitive but unfortunatly prone to want to play games of killing, I side with your son on the pacifism front.

 

5 seems to be very young to me to talk about rememberence day and death, or am I just naive?

 

Happy days, hmm, can you catch him when he is enjoying himself and ask him if he is having a happy time? break the days down into moments of happiness rather than the whole thing having to be happy?

 

With lunch times at T's school the kids who find the noise and chaos difficult go in a bit earlier, I would talk to the school about it.

 

Hope that helps a tiny bit.

[cmuir]

Hi

 

Poor soul. It's hearwrenching hearing comments like that.

 

My son is nearly 7 and has Aspergers. Never a dull moment with him, I must say. Took him to Sainsbury's one day and an elderly gentleman was standing beside us and R kept saying he was cute. Can't remember what the advert was for, but it was a sweetie ad with a boy and a scarecrow - R thought it was really sad that the scarecrow's arms were tied to the post and he couldn't eat the sweeties and cried every time he saw it. There's been cocasions when we've went on outings and had a really good time, later in the evening R will tell me that 'you never let me have a good time' when I know full well he enjoyed himself, etc. Every day, R will report that so-and-so said this and that - which clearly upsets him. R generally seems to get anxious and finds it incredibly difficult to move on from things. In addition, his moods are very up and down.

 

Very difficult to deal with at times and you really feel for them. In my son's case, I genuinely don't think he knows how he feels (CAMHS told me that R is emotionally like a 2 year old). Often his emotional responses are inappropriate and he tends to either get very angry/aggressive or becomes almost inconsolable. I was advised to label his feelings for him ie 'I can see you upset right now because ...', etc.

 

Have you heard of Social Stories by Carol Gray? If you do a google search, her website appears. I found that drawing stories for situations helped R a lot - even little stick people (doesn't have to be a work of art), etc. Think social stories help because often kids on the spectrum find it much easier to process visual (pictorial) information better than verbal information.

 

With regards to school/lunchtimes, I wonder if it would be worth having a word with the Headteacher to see if your son could eat lunch somewhere quieter, alternatively I wonder if pairing him up with a 'buddy' might help.

 

Hope things improve.

 

Regards

 

Caroline.

[Salbaggio]

My dd used to have her lunches in her classroom but has gradually been introduce to the dining room. The school did things like sit her at the opposite end of the room to where the plates were scrapped (her worst noise!) and letting her go in 10 mins before the others so that she had a chance to eat some lunch before the crowd. Also that meant she didn't arrive straight into a loud noise as the sound would build at a speed she could cope with.

 

Thank you, I will speak to the Head Teacher in the morning and perhaps see if I can get an appointment with the SENCO. We have never spoken to eachother yet, just sent a series of messages

 

 

Happy days, hmm, can you catch him when he is enjoying himself and ask him if he is having a happy time? break the days down into moments of happiness rather than the whole thing having to be happy?

 

I listed to him a number of happy days we had enjoyed together and he respnded well. I think I will follow this suggestion and break the day down to remind him that he is experiencing a happy moment. We talked about how we could turn today into a happy one and the result? Sausage, egg and chips for tea

 

 

Have you heard of Social Stories by Carol Gray? If you do a google search, her website appears. I found that drawing stories for situations helped R a lot - even little stick people (doesn't have to be a work of art), etc. Think social stories help because often kids on the spectrum find it much easier to process visual (pictorial) information better than verbal information.

 

Thank you also. I have heard of Social Stories but haven't looked up her website, I will do so now.

 

[oxgirl]

He says that all of the other children have happy days but he doesn't! Is this likely to be how he really feels or is it his way of expressing his unhappiness with today?

 

Hi Salbaggio, <'>

 

Although my lad is a lot older than yours (15 next week) this rang bells with me right away. My lad lives very much in the moment, whatever he is feeling at that moment he tends to generalize enormously. He'll regularly say he 'hates school' and is unable to break it down into bits that he does genuinely dislike and bits that he actually enjoys. Also, he does tend to focus on the negative. He could have had a generally good day, but right at the end, if something upsets him, then his 'whole day has been terrible', etc. I don't mean to suggest that your lad's feelings aren't real to him, but I wonder at 5 how easy it is for him to be subjective and see things clearly for what they are rather than focusing on the emotional. Have a chat with his teacher, ask her if he seems happy most of the time. It could be that he is a perfectionist, iyswim, maybe he wants every part of the day to be perfect and if something comes along that isn't quite perfect then the whole day is 'ruined', I know that's how my lad tends to see things.

 

With the eating, my lad found it very difficult to adapt to eating at school and in the end our only option was for him to come home for lunch. At least that way he got to have a break and I could make sure that he ate something. Of course, it was different for him in that he didn't have friends and was happy to get away from all the noise and hassle of the other kids. If your lad has friends that he enjoys playing with, then he might not want to be taken away from that.

 

Hope that helps a bit.

 

~ Mel ~

[Cat]

 

My son is now 21 and he has told me many many times that he was never happy at school. He says that from being 3 years old he knew that other children in Nursery and School were having fun and felt happy and yet he never did He says that this is how he has known from a very young age that he was different

 

The BIG difference between my son and your son is that my son did not receive a diagnosis of AS until he was 13 and so none of his AS needs were either recognised or met. I knew that there was something but not what it was. You do suspect that your son has AS and so there are many things that the school can do to help your son to have happy days.

 

If your son does have AS sensory issues play a big part in that and if you add the noise to your sons stress and anxiety that will result in him not being able to eat his lunch. School should be able to make arrangements that allow your son to feel comfortable and so eat it's called making reasonable adjustments and by law they are required to do this.

 

Is your son being assessed for AS or are you simply at the stage of suspecting that he might have it?

 

Cat

[JsMum]

<'> well your post made me cry, it was absaloutly writtend so descriptive and I really got a picture of how your boy is, the lunchtime is a problem for a lot of ASD children, NATIONAL AUTISTIC SOCIETY do free booklets for schools that help ASD children at dinnertimes, lunchtimes and playtimes, there is also one for the classroom too.

 

J had his packed lunch in the classroom until I had no alternative to take him home at dinner because he basically stopped eating, he was already underweight and so we took him home to get something down him, he eventually went part time as he had a lot of emotional difficulties to school.

 

Your lad sounds so lovely, and I can understand your concerns about never get to have a happy day, I would recommend that you do share this with school too so they can help with this situation too, maybe they can take snaps with a camera where he is having a good time, keeping a scrap book, storing reciets and tickets of places he goes where he has enjoyed it, a happy box, maybe, with what ever he want s to put in it.

 

In our area there is school councillors who could do some sessions if you requested it, enquire to see if its in your school, otherwise I recommend somewhere like relate who may know children councillors or similair projects.

 

Our local university have a family unit and they provided free councilling for my son when he was very young.

 

I know with J he thinks visually a lot, so having watched something heavy like the ww1/2 it may be with kids like J and yours they cant get the pictures out there heads, and have a difficult time relaxing, if he is feeling anxious his tummy ache will also be down to anxiety symptoms too, if he is then climbing stairs it contributes the symptoms because he will naturally be needing calories but isnt hungry, so his blood sugars drop.

 

This could be clouding his judgement of how much he really enjoys things in school, if hasnt eat much over lunch, it could be he is more hypo and dehydrated than feeling down, and unhappy.

 

I would share the happyness and the dinners with your school tomorrow, or write it in a letter and hand it in to the senco and the HT so reasonable adjustments can be arranged, your not asking for anything special, just that his day is more managable and so he can cope.

 

Good Luck.

 

JsMum

 

 

[bikemad]

My ds is similar..he hates playing war games cos he dont see why anyone would want to play a game of killing.....but he has told me god knows how many times he wishes he was dead cos he is sick of being a freak. He also says extremely dramatic things and like you we used to say 'yes dear' but have now realized that while these things might sound daft to us to him they are very big and very real. Remembrance day whilst very important(my grandad was in ww2)is a nightmare to ds cos he will have nightmares for weeks now bout war and bombs n the house blowing up etc etc. The dinner times id def speak to the teacher/head about...I had to with my lad cos he couldn't tolerate the barging etc in the queues (sp?) or the crowded tables.

 

<'>

 

 

[Salbaggio]

First of all thank you all so much for replying and sharing your experiences. It seems that the lunch time thing is not unusual and when I was telling my husband about it last night he remembered that he never used to eat at school because he couldn't deal with it. He used to try to sneak out at lunch times!

 

Now an update!

 

I spoke to his Head Teacher this morning, she is a fabulous woman, and she recommended that I make an appointment with the SENCO to discuss all of my worries etc. She said that she will personally oversee any changes that are implemented at lunch times and generally was a great comfort, she spoke of empowering me with knowledge and wisdom oooooerrr!

 

I then spoke to the SENCO and have arranged to go and see her next Wednesday afternoon and in the mean time she will personally observe Levi at lunchtimes to see if she can identify any particular triggers.

 

So it is all very positive this morning although I still feel strangely weepy, I feel emotionally exhausted, weird!

[chris54]

Dear Salbaggio

 

Just read your first posting and I now feel sad, have tears in my eyes as I remember my time as a child.

 

I can remember many times being sad and never really knowing why, with no one to talk to.

 

Listen to your son and talk to the school.

 

It sound like you have a sympathetic ear in the HT.

[oxgirl]

Really glad you had such positive meetings with school, Salbaggio, that must be reassuring to know that they are all supporting you and your lad.

 

I don't think it's weird at all that you feel weepy afterwards, though, it is emotionally draining talking to people about how worried you are. Take care of yourself and hope things improve soon.

 

~ Mel ~

[aro]

So glad the school are going to work with you on these difficulties Hopefully lunchtimes will far less stressful for your son soon.

 

A x

[nan]

I just wanted to say how sensitive and caring your little boy sounds. My grandson is four and a half and seems to have some autism/aspergers traits - and your story about the war games being upsetting for him reminded me of my grandson not being comfortable with 'kicking' when he goes to his martial arts class - I think he doesn't understand that it is 'pretend' kicking. There are many people on this forum with older children and we are only at the beginning aren't we? It is upsetting and worrying but isn't it good that there is a forum like this where we can ask advice? I wish you and your little boy well x

[joybed]

We have pretty much the same problems with Marcus and he is 12. He can,t stand histort because it upsets him to think of all the bad things that have happened in the past and he can,t understand why people are nasty to each other. He too has problems with lunch and prefers ti sit quietly on his own school do thios for a while but then forget and try to integrate him again which never works. Marcus is always saying he is doomed to having an unhappy life and no matter how many positives we point out he always focuses on the negatives. Suppose this is just the way he is (funnily enough DH is also like this).

[Salbaggio]

UPDATE:

 

So I met the SENCO and she was fabulous. We had a good long chat and she let me ramble in an incoherent fashion for quite a while

 

The main concerns that I had were;

 

finding out about the referal procedure and what it would involve etc,

 

explaining my worries that he can not verbalise his anxieties and therefore they won't know during his average school day when he is struggling,

 

my worries that he is pushing his peers away, when they upset him (like with the war games thing) he seems to rule out being friends at all,

 

his black and white nature, needing to know what we are doing and going to be doing all of the time etc.

 

She came back at me with some wonderful ideas for helping him to manage his anxieties. We are not going to proceed with the referral immediately, rather we are going to implement these things and get together again in a fortnight to discuss how they are going and to see if the SENCO has any other recomendations after having had a bit longer to observe him. At that time we will probably refer him to a speech and language therapist to get their input on his non verbal problems and see what they recommend.

 

So the first thing that we are going to set up is a "circle of friends" which is a group of 6 or so children in his class who will be in a sort of Club Levi. They will get together a couple of times in the week and generally learn how to help Levi if he feels sad at playtime. There are so many benefits to this that I don't know where to start, his confidence should grow, he'll have a group of little advocates noticing if he sits out of games, extra pairs of eyes to explain to teacher what happened if he gets upset etc etc. I talked to Levi about it and he LOVED the idea.

 

We talked about his anxiety at lunchtime and we feel this may stem from the not knowing what is in his lunchbox and simply telling him is perhaps not enough to take the surprise element away so I will continue to make his sandwiches at night and pop them in the fridge but every morning I am going to get him to pack his lunch box himself.

 

We also talked about using social stories to help him visualise what is about to happen and I am going to get him his own notebook and pen and each time I am getting the same set of questions over and over and over again (when are we going home, when can I have...) I will produce the book then or even get him to write his own social story.

 

So basically I feel very positive that we have a plan of action right now, we'll get together in 2 weeks and make a further plan. If we proceed with a referal she says that by Feb/March of next year I should have had an appointment and know what the next steps are which I am very happy with.

 

[chris54]

Just reading post.

Lunch box.

It never occured to me, knowing my son, not to consult him on what is in his lunch box. I get up that bit earlier so have time to make them and will always ask him/ give him a choice of what he has.

On the few times I have got it wrong he just does not eat his lunch.

Same with breakfast, he has to choose. I have a choice so why shouldn't he.

[madme]

This sounds all very positive. Its nice to know that some schools do want to work with parents. With my son who is now a teenager when he was 7-9 he was very like this and when we got him into an appropriate caring setting the school had a positive chart which was broken down into lessons and playtimes. A teacher who he got on well with would spend a few minutes a few times a day going through the chart and he would draw a smiley or sad or angry face to show how he was feeling. It did help as we could then try and work out what was causing these feelings. He felt it easier to do this than face lots of questions. Good luck

[Salbaggio]

It never occured to me, knowing my son, not to consult him on what is in his lunch box. I get up that bit earlier so have time to make them and will always ask him/ give him a choice of what he has.

 

 

It's funny because I remember it always being an exciting suprise to open my lunchbox and Mum would have put something different each day, I loved it and suppose I just thought he would too. I'm sad that it seems to have caused him anxiety instead and he hasn't known how to express it else I would have stopped a long time ago

[Salbaggio]

This sounds all very positive. Its nice to know that some schools do want to work with parents.

 

 

We are very lucky with this school as they are offering all of this support even if a diagnosis is not reached

[BuntyB]

My daughter is 12 and she also says she has a miserable life. She refuses to go anywhere because it will be 'awful', but when we push her to go out with the family, she ends up running about with her sisters and brothers laughing and giggling. Yet when we get home, if anyone dares to suggest she had a good time, on comes the frown and the pout and she says 'It was an awful day. I hated it.' ! It's a shame she goes mad if anyone tries to take her photo because I'd love to show her that she does appear to be perfectly happy!

 

We had someone from child protection doing an assessment on us because she posted a very dark poem on the internet wishing she was dead! So, so embarrassing! And even more so for my daughter who was cowering under the duvet shouting 'Make them go away'. That was directed at social services, not us but I did worry we would appear to not be taking very seriously her seemingly suicidal tendencies! She does blow very hot and cold, but I just think we've come to expect it.

 

I was also a miserable child. What worries me were the teens and early twenties were dreadful....perhaps I ought not scare us all!!!

[skye]

My son is 5 and we suspect he has AS. This realisation is quite recent and up until now when he has come out with overly dramatic statements I have effectively patted him on the head and smiled to myself. He has been known as a drama queen in the family for the funny things that he comes out with. Now though, I am feeling so sad because I fear that I have not been taking his genuine outpourings seriously.

 

Today at school they have watched a film relating to Rememberance Day. It has really upset him. As soon as he emerged from his classroom, pursed lipped and shaking his head I knew something was wrong and I have had a good chat with him and I feel that I have unearthered a can of worms. He is usually so difficult to talk to and in the last hour he has poured so much out, the most upsetting part being that he feels he never gets to have a happy day. He says that all of the other children have happy days but he doesn't! Is this likely to be how he really feels or is it his way of expressing his unhappiness with today?

 

Basically the thing that has upset him today is that after watching the film mentioned above the other little boys wanted to play at soldiers/war. My son agreed to this game but when he realised that it was a "mean" game as he described it he got very distressed. He is talking about all of the dead soldiers that are buried and he can not understand why anyone would want to make a game about this subject matter.

 

I have talked to him about the fact that people in life will sometimes choose to do things that don't make sense to us but we have to learn to accept this. He does not have to play such a game himself but the other little boys are not wrong because they want to.

 

It seems that he just sat on a bench and cried so I have said that maybe he could find a teacher next time and explain that he is feeling sad for whatever reason?

 

Do you think that I am heading in the right direction?

 

He also explained why he is eating less and less of his packed lunch every day. He says that he feels nervous because lunch times are very noisy and also the dinner room is up 24 steps (he counts them every day to be sure!) and he ends up with tummy ache! Should I see if we can make an alternative lunch arrangement or is this something that is going to have to deal with?

 

If you have read all of this then please give yourself a pat on the back and accept my apologies for the rambling!!

This post made me feel really sad and upset, I am a bit teary eyed. My daughter, Lib also 5 came home on rememberance day very upset as well. I wonder if they watched the same video? She has always been called a huge drama queen as well. She started talking about people dying and her dying and leaving me here on my own. I didn't know what to say other than that I am older than she is, being as clever in maths as she is, she immediately said "you are going to die mummy and leave me here alone. I don't want you to die. I can't live without you." etc... I tried to explain that we had loads and loads of time and that everyone eventually dies and it is all part of life etc. It was really sad and horrible. Sometimes I feel like Lib understands too much instead of that she doesn't understand enough.

I really think your SENCO should be able to sort out something for lunch. There has to be a quieter place or something that they can do so he is comfortable eating. I hope they get it sorted out for you.

-Skye

Edited November 21, 2008 by skye

[allsetuk]

this post really made me cry, the idea of him countin his steps every day and that being so important that he cant enjoy his lunch, i wonder sometimes, do schools want to make any effort at all ...but im glad you are making positive steps with the senco.

 

i hear every thing you are all saying and my son age 6 has said all these things many times, isnt it heartwrenching. All we want to do is help , and we must never overlook the smallest things, its like think and rethink !