Feeling sad about ds1, just need to let it out - very long, feel free to ignore

[moosemama]

Ds1 was invited to a film night at the local church hall by his best friend. They invited him a few weeks ago and it took place last night.

Some of you might remember that ds1 is phobic about films, but recently he has managed to watch a couple, in fact only last week he watched Bedknobs and Broomsticks with me and loved it.

Anyway, we talked it all through several times and he was insistent that he wanted to go. The plan was for him to go to his best/only friend's house after school to play, then his mum would take them to and from the film and drop ds back on the way home.

He was sooo excited about going and was literally counting down the days, but I knew he was anxious because he was having nightmares several times a night and has been night wetting again. I made sure I gave him plenty of opportunities to change his mind and we have talked about the event lots over the past couple of weeks. I even offered several times to watch all or some of the film with him but he was absolutely adamant he didn't want or need me to as his friend has seen it and its not-scary.

Then, yesterday morning dh and I had a meeting that started before school to review his IEP and discuss is SA request so we needed to be there early - hence a change to the normal routine on the first day back at school. Unfortunately, overnight it had hit him that his whole routine was going to be different after school. He was cingy, tearful, worried he'd be scared of the film and sobbing at the thought of not seeing me until bedtime. I couldn't console him, so had to take him into the school with me, stall the meeting and tell him he could talk to his friend during the day and decide whether or not he wanted to go. If not, he could come home with me when I went to fetch ds2 and we would arrange for his friend to come and have a film-night at our house with popcorn and snacks etc and he could choose the film himself. It didn't help much though and he wanted to stay with me, he was so upset and told both myself and his teacher that he didn't want to disappoint his friend, but he was so scared of going.

Eventually he calmed very slightly, so dh took him round to his queue to find his friend, still sobbing and fortunately managed to catch his friend's mum to explain the situation. She's lovely and said he could just come round to play after school and they'd drop him of before they go to the film, but that he didn't have to make his mind up until pick up time.

So, I took his spy outfit (white tshirt and black trousers and sunglasses) and a packed gf tea for him to the school at pick up time as promised and he came, with the friend and his mum, to tell me that he'd decided to just go and play and come home before the film. Friend's mum is so lovely and patient with ds1, I could hug her sometimes and she said that if he changed his mind and wanted to go to the film, that was fine and she'd text to let me know.

Got a text at 5.00 ish to say ds1 had decided to go to the film after all and they'd drop him back afterwards, so obviously I then spent the next two hours fretting, but hoping that he would be ok once he was there.

They brought him back and on the doorstep said he'd had a good time etc, then he came inside and literally crumbled in a heap on the floor sobbing. He had been holding himself together. He only went because he didn't want to disappoint his friend. (He's is only friend and ds1 is fiercely loyal to him, whilst at the same time always terrified he's going to lose him.)

He was terrified of the film (it was Cats & Dogs) the build-up to the climax was too much for him to cope with and the fighting at the end scared and distressed him. He sat there between his best friend and another child from school absolutely traumatised and trying to hold himself together until he got home. He couldn't manage a mouthful of the treat filled packed-meal I'd sent him with.

We had a couple of hours of shaking and crying, followed by a meltdown where I was told it was my fault because I should have told him he couldn't go. I explained that I couldn't do that because he then would have been upset that I'd stopped him and wouldn't have believed it was for his own good. (Damned if I do, damned if I don't - again.

I am so sad and frustrated, he so desperately wants to do what the other kids his age do, but just can't cope. He went to the park at the weekend with dh and was asking why he couldn't go to the park on his own like the other boys from his year they met there. Dh told him its because different parents have different rules and different ideas of what their children should be allowed to do at certain ages.

Very little sleep was had last night and he looked like a ghost, all pale with puffy, red rimmed eyes this morning, but has gone to school. My instinct was to keep him home, but he has ICT today, so there was no way he was going to stay home. I sent a note in for his teacher to explain that he's likely to be all over the place and over-sensitive and tearful today.

I know from past experience that this is going to set him right back, we will struggle to get his anxiety back under control and he will be highly emotional and reactive for quite a while now and I am already teetering on the edge after half-term.

Rant over, I just needed to get it off my chest, because I'm on my own all day today, so have no-one to talk it through with.

You may tell him that as a child I saw "Bedknobs and Broomsticks" at the cinema and was so terrified I remember hiding under the seats with my hands over my ears. He's doing better than I did. I still don't really enjoy the cinema since then, I get very panicky about going even to a non-scary film.

hugs

I wish life wasn't so hard for your DS, or you, it's just not fair is it :(

I'm really sorry that this will set him back for a while as well, it's just so so so difficult.

How old is he? (Is he still 8?) I had a look at your photos, to see if there were any of the boys (I like to put a face to the post if I can :) ) but there weren't any :( Lots of lovely lovely cakes though!! They really are FAB - do you sell any or just do them for fun?

You should give his friend's mum a hug from time to time - she does sound lovely.

I'm sorry :( but for what it's worth he sounds really lovely and willing to try new things.

Awww sending you hugs Moosemama x

Its horrible seeing your child so distraught :(

It is one of those situations that you really had to go with the flow with. It may not feel like it but you did the right thing in letting him make the decision as he is going to have to make decisions himself through his life.

It will set him back for a while but use it to your advantage. If he mentions it again when home. Tell him how proud you were of him thinking of his friend and not himself. Tell him how brave he was holding it together like he did. That everyone has to try things out to find out if they like it or not and if its not for him then he hasnt got to go again.

I do feel for him moose it must have taken an amazing amount of willpower and energy to cope, no wonder he broke down at home where it was safe. But you were right to let him go xx

DeWe, I was a bit worried about the moving armour at the end, but for some reason it didn't seem to bother him, despite him telling me that one thing he really hates about feature films is that they always build up to a big battle near the end.

ChippingIn, he's 9 - 10 next spring.

No I don't sell my cakes, just do them for family and the odd friend. My kitchen isn't big enough for me to do it for money - not to mention I have two great hairy mutts in there much of the time!

It is great that his friend and his mum are so lovely with ds1, but also really hard that they weren't able to recognise his distress - they genuinely thought he was fine. He has become a much accomplished at holding it together at school recently though (balanced by being really hard work at home) so I suppose its an extension of that. They don't know he has AS, but have known him since he was 3 and always just accepted him for who he is.

Coff33, that's all I could do. I told him how proud I was of him for not wanting to disappoint his friend and how brave he'd been, but that he doesn't have to put himself through things that terrify him for a friend, if they are a real friend they will understand - and to be fair this boy would definitely have understood and been really good about it.

I sort of feel I did the right thing letting him go, but at the same time have that horrible knot of guilt in my stomach. I'm sure it was right to let him choose initally, but can't help wondering if I should have intervened and insisted he came home before the film night, after he'd been to play at their house.

I dont think you should have halted the film, although I can understand why the knot is inside you :)

The hardest think I find is trying to remember we cant protect them forever. I am my own worst enemy at times and go through phases of not letting him experience things assuming the possible stress before any has happened.

Mine is only 6 and I am 47 and I worry about the future for him when I am not around so I have to kick myself every so often and let him deal with the big bad world (to a point :))

Dear moosemama

I so could have written that post on past experience with my DS on many occasions. I dont have any answers as I'm still trying to find them myself but so understand only too well the hurt inside in trying to understand and work things out for the best.

Sending you big hugs.

Thanks Coff33.

I think I've been thinking more and more about how to loosen the reins a bit recently, but like most of us, really struggle with not being able to protect him, whilst at the same time not knowing how much he can do/deal with unless we let him try. Same is true for nt dcs as well, I suppose, but in a very different way than it is with ds1.

Filling in our Parental Advice for his SA has meant we have had to confront his future as well, as we had to do a section on hopes and aspirations, straight after completing all the detailed information about his difficulties and hurtling towards secondary applications isn't helping either.

joencaitlinsmum, thank you for the hugs, they are very much appreciated today. I suppose there's a lot of us in the same boat on here really. It really does help to know that there's someone out there who understands.

Sorry your Ds had such an experience, It is really hard to know what to do isn't it.

I think his friends mum sounds fab but maybe she needs educating a bit for what to look out for if your Ds is anxious.

Dd3 is an expert at holding it in too so I know exactly what you mean.

I am struggling at the moment to make a decision about Brownie holiday in November, it is only 2 nights but I keep imagining her lying in bed scared and not able to tell anyone.

They don't make it easy for us do they moose.

Moos, I agree with eandz. He did fantastically well to go through the experience and it is NORMAL to let out your frustrations safely at home.

I'd be so proud of him.

Also, by experiencing what he did, he has a better understanding of what such things entail and better informed to make decisions in future.

I understand why you're upset but honestly, you can look after him and help him process the experience safely, but the experience itself was a GOod thing.

Moosemama, I feel like your son sometimes, really I do. I know something's meant to be fun but the thought fills me with horror, and I just want to stay at home...
But I enjoy films...just that some other seemingly ordinary "Fun Outings" fill me with trepidation. So I identify with your son's emotions.
Could it be that your son is overthinking (as I do) all the different parts of the experience and worrying about each and every stage of the experience, rather than just thinking. "I am going out for a special occasion"
I know what makes me anxious is the small print: the money, the keys, the getting there, the getting home, the putting the children to bed before I go out, the finding the smart clothes...It all knots up inside me so that I can only feel apprehension and tension.

I can remember the awfulness of being forced to sit through a Clockwork Orange on a French exchange when we were meant to be seeing 101 Dalmations (last minute change of billing) so I sympathise with the way that cinema can seem an ordeal not a pleasure at all, just a bombardment of violence and noise.

So sympathy to you and him and well done that he DID it. However don't assume he will want to go to another film for a while; I think sometimes the adrenalin required is not easily summoned twice. But he may find something else less frightening than he did this, in comparison...

Look at it this way, moose he is so sure of your love and support he feels he can hold it together outside the house and can let his anxiety out when he gets home and where he feels safe.

I can empathise...took ds1 to a halloween party at my sisters last night...she had really gone to town!! Fake graveyard in the corner, blood and spiderwebs everywhere! Ds1 very quiet. Wouldnt dress up (it was halloween theme obv) and wouldnt go trick or treating. Sigh.

It does bother me. It shouldnt, but it does. He is nearly 8.5 and its like I have 2 toddlers sometimes Exhausting. Wish he was like other dc sometimes. I do. But only because it would make his life easier if he werent so scared of everything!!

Ds1 has also long had issues with films/going to the cinema. I have solved this over the years by buying films he wanted to see on dvd as soon as they came out and by just trying to accept he doesnt like the same thing as other boys his age He is better than he was, but I would love to be able to take my son to the cinema like other mothers can.

Not much to ask, is it?

Oh, and the years of making excuses when he was asked to panto's

I love musical theatre (I know, its sad, but I dont care!) I will never be able to take him to see The Lion King

He misses out on so much

Thanks Starlight, yes I am proud of him and have told him so lots of times.

I get what you're saying about the experience itself being a good thing in terms of learning and understanding what these things involve as well and your absolutely right. Its just so hard to see it as a positive thing, when the experience itself was so traumatic.

Swanriver, thank you for sharing your experience of being worried by things other people enjoy.

We have talked about films lots over the years and again last night. Its the unpredictability he doesn't like, not knowing what's coming next and not being able to 'read' the characters makes it so much harder. He also can't bear the big build up to the end of the film, I suppose that in some ways that's sort of similar to what he said about not liking to look forward to things. He can't bear the build up of emotions and gets overloaded. Then when the climax of the film happens, there's often a big fight or huge kerfuffle of some sort as it all comes good in the end and that frightens him. Finally he says in films they always end up with someone leaving and they make it seem as if its a good thing, but it isn't its just sad that they are going and their friends or family won't see them again. Eg When the star returns home at the end of Laura's Star, in the film its a good thing, because Laura has helped the Star go home to her family, but to ds, they are just never going to see each other again and he can't bear the thought of that.

Becaroo, we would be the same with a Halloween party and I've been through the same stuff about pantomimes. I really looked forward to taking my dcs to see them, but there's no way we could take ds1 and he'd take it very badly if we took the other two (we have big problems with him not believing he's loved as much as they are and no matter what we did with/for him instead, it would never be equal in his eyes). Its unfair and hard on the other two as well. We try to do things that all three will enjoy - but that presents a whole new set of problems.

Thanks for all your comments and thoughts everyone. I do feel better and ds has actually managed to have a good day at school today in spite of it all, which also helps.

Actually his maths teacher came out to see me and tell me how well he'd done in maths today with something he normally really struggles with.

Bless her, she is so keen to get things right with/for him and is really trying hard - in fact the whole year 4 team are and its really working.

She had tears in her eyes when she was telling me that both his maths teachers think he's absolutely great and really enjoy teaching him. She even said she would miss him so much if he wasn't in her class and she's really proud of him for how much he's come on already this year.

It a lovely, but really alien experience after the past couple of years. Last year's teacher continually told me how labour intensive and disruptive he was and how she couldn't possibly help him any more and he was failing to progress in spite of all her efforts. This year's teachers (all four of them) can't do enough for him and when I thanked her and asked her about this and if she felt the same, she said absolutely not. The proof is in the pudding as well, as he has progressed massively in just the first half term - I think more than he did in the whole of year 3.

We had similar feedback from his form teacher at his IEP review yesterday and its borne out by the fact that ds absolutely adores them all and is trying extra hard.

Feels a bit like we've come home, his infant teachers all said how much they loved him and would tell us how he was a pleasure to teach and so interesting to talk to and the infant TAs were all really fond of him as well.

I wish I could keep him in this year with these teachers forever. It so wrong that we are having to apply for a statement for him, because not every year will be like this and the potential for more years like the last two is high. Yet he absolutely blooms when he gets teachers with the right attitude, who genuinely want to help him be the best he can.

If things keep up like this, I am going to have to think of one-helluva super-duper end of year gift for each of them!

oh moose. what a roller-coaster day. hope you both manage to have a quiet evening and a snuggly early night and let everything settle x

Oh dear,been there, but it will get better with time.

It is a difficult stage when they start making decisions for themselves and get it a little wrong sometimes but it gets easier - goes from "one step forward, two back" to " one step forward, 1 and a half back" eventually to one step forward. He will probably process the experience over several days and be calmer than you think.

I am excusing DS2 from the school panto trip this year, he has dutifully gone every year (last year on his birthday!) and it is so not a treat for him.

Could you not say something to the nice mum about his AS?

They sound fab moose

Moose what great positive reports from the school! With a mum supporting him like you are hes going to go a long way xxx

Thanks coff33, but I don't feel like a good mum at the moment. I feel like I'm getting in wrong in so many ways and on so many levels, that he's progressing in spite of me.

I have been so short with him over the holidays. He was hard work, but I should have been more patient and held my tongue. Said a few things I really regret in anger last week - definitely not good mum territory.

My son adored WALL-E.

Very little dialogue so he found it easy to follow. It was a good introduction to cinema/film.

Maybe worth trying a film night at home with this title?

Thanks bochead. We have the dvd of WALL-E, as it was what we bought to motivate ds2 to eat so he could come home from hospital when he had pneumonia a couple of years back.

Ds1 will not even entertain the idea of watching it. We've offered to watch it with him repeatedly.

Actually, I think he wouldn't cope well with WALL-E being isolated in the beginning and the bit where the other robot is leaving and WALL-E is getting left behind. He also has big 'end-of-the-world' fears.

Bizarrely, he did agree to watch Despicable Me after his brother saw it a school film night and told him it was great - and he loves it! If anyone had asked me, I would have said there's no way he'd even try to watch it and if he did he'd hate hit, but nope - he likes to watch it regularly.

When we were on the ferry on the way to Ireland this summer they announced that they were going to have childrens' films on in the two main seating areas - he walked in, heard the announcement, froze and started to panic so we couldn't move him - he was frozen to the spot with fear - and it hadn't even come on yet. We had to walk the entire ship several times to find a seat away from a screen. Then it turned out the first film was ..... Despicable Me, so we could have sat in the comfy chairs after all! The second film was Over the Hedge though and he wouldn't even entertain the thought of that one.

One the way back we sat in the comfy chairs while Despicable Me was on and put him in a big wing backed chair facing away from the screen and let him play on his DS with the headphones in while Rango was on. Such a pallaver!

It doesn't help that dh hugely anti-Disney and used to go on about it in front of ds when he was little (before we knew he had ASD). Disney in particular is the biggest problem.

It also stems from a bad experience with a massive surround sound and projector screen system at my ex BILs house when ds was about 18 months old. They put Ice Age on for him and he just couldn't cope with how loud it was and the huge screen etc. He was also terrified when the little chipmunk thing kept falling through the ice chasing its nut. We only got less than half way through the titles and had to leave because they wouldn't switch it off. He was beside himself and we couldn't calm him down. He'd only really watched the Tellytubbies and Fimbles up until then and wouldn't let us even put the television on for a very long time afterwards.

Oh moose He sounds so like my ds1!!!!! Ds1 was also really into The Fimbles!!!

Ds1 will now watch Ice Age but it took a loooonngg time!

Could never go to cinema parties if he was invited

Strange you should mention Depicable Me...I never thought ds1 would watch it, let alone like it, and he LOVES it!!

Moos, again I disagree. Your ds needs to get the safest possible experiences of real life. Having a mum who doesn't have infinite patience is real life. No-one else is likely to be as patient as you.

My ds Stim sometimes drive me wild and I don't think it is harmful to him to let him know that ocassionslly. I love him yes. We can talk about it. I can sometimes tolerate it but when I can't I just can't and he has to deal with a very bad reaction or stop.

Oh my goodness, how sad for him and you. This sounds terribly hard. My son is ten. He persuades himself to try stuff but sometimes the run up, the anticipation is so tough that by the time the event arrives, he can't actually do "it".

I too try to prepare my ds for the time when I'm not here. I'm 49. But no matter how gently I try to do it, I have to accept that actually, there are times when IT'S JUST TOO HARD.

A hug for you both...