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Hi,

 

I'm writing about my little boy who is 9 and going through an absolutely dreadful time. Have posted before about our situation, in that we have moved to Kuwait with hub's work and to cut a long story short it's been a nightmare. We haven't managed to find a school for him that doesn't stress him out and we've tried home-schooling which isn't working either. We're now waiting to hear if we can get a transfer to another country. I know that this will bring it's own problems - more changes for him to cope with, however we can't stay here. Hubs can't return to UK due to tax implications until next April, however I may go back with my boys if we can't find good schooling elsewhere.

 

Anyway - that's the background to our situation. Loads of change, rejections from schools here, huge drop in his self confidence, appearance of fixations he's never had before, lethargic and tired. That's the little boy I'm living with now - just dreadful. He is having huge melt-downs - out of control screaming and crying and cowering away as though we will physically harm him (which of course we never ever would). I 100% understand why he is having a terrible time as he has so much change to contend with.

 

I'm hoping for some advice as to how deal with our main issues which are putting a massive strain on our family:

 

1. Most importantly - any tips on raising his self esteem. We tell him he's amazing and we love him but he's lacking in confidence and says he's 'stupid, mental, bad at maths, writing and english, a horrible son and brother'. Heartbreaking.

2. Meltdowns - even he has asked if I can help him to cope with his anger as it scares him. He is easily angered and becomes so distressed. We try to get him to 'cool down' in his room, however he sees it as a punishment and becomes more hysterical.

3. Fixations - obsessed with playing 'Minecraft' on ipad and laptop (and watching videos from youtube of other people playing!). Understand that it allows him to relax and unwind, however I can't accept that he chooses that over and above anything else. He used to love playing with diggers and now doesn't touch them, nor does he want to swim in the pool (we have sun!). He's allowed 1 hour per day and we use a timer so he understands that time is counting down. This doesn't stop the constant begging for more time, the lack of motivation to do anything else etc.

 

The saddest thing is that most of the above was never apparent in the UK, it's obviously a result from the changes he has gone through. His diagnosis is for mild ASD and Dyspraxia. We've tried to manage the transitions as much as possible but quite frankly feel like we've done a bad job.

 

He's just gone out on a bike ride with his dad this morning (used to adore this) and my husband rang to say he's hysterically crying and refusing to cycle. So frustrating - all we want is to have our happy boy back.

 

Any tips or advice would be appreciated. Apologies for the long post.

 

Emma

x

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Not going to school seems to be having a big impact on him, however school isn't an option for him right now.

 

Perhaps establishing a routine at home during school hours may help a little. It might be an idea to look into home schooling or hiring a tutor to help him with maths, and planning his whole day around it. Set aside a room in the house that is his 'school room' and he knows that's for him alone - things like that maybe?

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I can understand the fixations - our 9 year old is just the same - he too is into Minecraft now. My advice on that is simply not to worry about it - if he enjoys it and it helps him to relax then it is a good thing. While we may not like the amount of time he spends (we let him have between 1hr and 1hr30mins most days) trying to restrict it too much is definitely counter productive.

 

As a digression in fact I think Minecraft for our son is a positive thing. It is comparatively creative, but within well defined rules and because it is also played by his peers at school it is being a tremendous help on the social side - there are much, much worse things for him to be fixated on.

 

For meltdowns the trick is to identify the triggers and signs early and act to defuse the situation (easier said than done). Talk to him to make him aware of his emotions and give him some scale to define how stressed he is feeling. This could be green, yellow, red or a scale from 1-10 (that works best for our son). You will probably find there he is keen to help as meltdowns are no fun for the AS child.

 

Now my AS son is pestering me because he wants to play Minecraft on this machine so I will have to continue this later...

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Thank you for your replies! We have already established a home school routine with a timetable, however as he is so demotivated it has been a losing battle. We did designate a room which I involved him in sorting, making posters etc, buying paper and pens.

 

Your comments on Minecraft are valid and I think it's my issue maybe. I find it hard to see him vanish into this world when he is disengaged from everything else in his life. He doesn't want to learn, play, read etc. There's no balance.

 

Once my husband got back from the bike ride, we quickly realised why he was so upset - it was hot, noisy, strong smells and lots of traffic. My husband especially is not reading the signals which causes endless tension between us.

 

Thanks for the tips on scaling how angry/stressed he feels. I'm going to get him involved in making some flash cards today. Any tips on diffusing the meltdown or stopping it escalating? He has asked what he can do when he is feeling this way, and the cooling off time isn't working. Recognising the signs before the meltdown begins is something I'd like to get a grip of, however at the moment his outbursts are so frequent that I can't keep up.

 

Thinking more and more that returning to the UK may be best for him. If we get transferred to another new country and it turns out to have a discriminatory and non inclusive schooling, then I'm scared it will be a step too far for him. We thought we'd escape the recession after 4 redundancies and give the boys private education and a wonderful cultural experience, however it hasn't worked out that way. Downside would be that my hubs would not be with us, which may not be good for Corbin.

 

Goodness I sound like a misery!!!!! Sorry!

 

Happy EAster by the way, I'd kill for a Cadbury's EAster Egg!!

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AS children simply aren't balanced in any way, yes he vanishes into a world, but it is a world that makes sense to him. It has hard and fast rules he can understand and he is in control. You can see the attraction for an AS child - even NT children get engrossed. It is at least good that they have one thing in their life where they are happy and can escape. My son's classmates (who are a wonderful bunch) have learned that they can use talking about Minecraft with him as a way of calming him down and that can help diffuse heightening anxiety.

 

For the "meltdowns" you have to try to build a dialogue with him about them. We find this very hard because he does not really understand it himself and is poor at expressing himself anyway. You need to understand what the triggers are and try to avoid them even occurring. Diffusing them as they being must be very specific to each child. For us giving him a good cuddle often helps, as does distracting him and suggesting some favourite occupation. He also has various sensory toys - rather like stress balls - that can help.

 

What we notice is that he has a number of "self calming" activities, often appearing like repetitive motion, fidgeting or returning to a favourite topic of conversation (usually Minecraft these days) and these are an indicator that he is getting anxious / stressed.

 

I have huge sympathy for your situation - I can't imagine us in your place. Our life is hard enough in his familiar environment and to take all that away must be very unsettling. I hesitate to give advice about a situation that I know so little about but if you can't turn things round there soon you are going to have to make a change. He is clearly very unsettled out there and it is hard to see what else you can do to settle him It is an option just you to come back to UK for a couple of weeks just to try to settle him a bit?

 

The other ideas I have been considering for our son include trying to increase his range of interests - for example teaching him about computer programming - so he as more things he sees himself succeeding at. Also considered trying to make better use of the internet, to let him talk to other people on some form of forum - but not sure where is appropriate for someone like him. I think the more time we can get him engaged with some structured activity the better.

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Hi,

 

I'm writing about my little boy who is 9 and going through an absolutely dreadful time. Have posted before about our situation, in that we have moved to Kuwait with hub's work and to cut a long story short it's been a nightmare. We haven't managed to find a school for him that doesn't stress him out and we've tried home-schooling which isn't working either. We're now waiting to hear if we can get a transfer to another country. I know that this will bring it's own problems - more changes for him to cope with, however we can't stay here. Hubs can't return to UK due to tax implications until next April, however I may go back with my boys if we can't find good schooling elsewhere.

 

Anyway - that's the background to our situation. Loads of change, rejections from schools here, huge drop in his self confidence, appearance of fixations he's never had before, lethargic and tired. That's the little boy I'm living with now - just dreadful. He is having huge melt-downs - out of control screaming and crying and cowering away as though we will physically harm him (which of course we never ever would). I 100% understand why he is having a terrible time as he has so much change to contend with.

 

I'm hoping for some advice as to how deal with our main issues which are putting a massive strain on our family:

 

1. Most importantly - any tips on raising his self esteem. We tell him he's amazing and we love him but he's lacking in confidence and says he's 'stupid, mental, bad at maths, writing and english, a horrible son and brother'. Heartbreaking.

 

***Give him plenty of specific praise at his level of understanding. There are books aimed at autistics that would be at his age group.

 

2. Meltdowns - even he has asked if I can help him to cope with his anger as it scares him. He is easily angered and becomes so distressed. We try to get him to 'cool down' in his room, however he sees it as a punishment and becomes more hysterical.

 

 

***There are a few books about meltdows. 'aspergers syndrome and difficult moments' is my favourite. A few others are 'a 5 is against the law' using a traffic light system or numbering system for describing emotions. 'when my autism gets too big' helps kids control their anger.

 

3. Fixations - obsessed with playing 'Minecraft' on ipad and laptop (and watching videos from youtube of other people playing!). Understand that it allows him to relax and unwind, however I can't accept that he chooses that over and above anything else. He used to love playing with diggers and now doesn't touch them, nor does he want to swim in the pool (we have sun!). He's allowed 1 hour per day and we use a timer so he understands that time is counting down. This doesn't stop the constant begging for more time, the lack of motivation to do anything else etc.

 

 

***his hobbies are solitary and that's his escape from the confusion around him. I happen to be on my laptop most of the day. Strawberries helped with my low motivation depression.

 

The saddest thing is that most of the above was never apparent in the UK, it's obviously a result from the changes he has gone through. His diagnosis is for mild ASD and Dyspraxia. We've tried to manage the transitions as much as possible but quite frankly feel like we've done a bad job.

 

He's just gone out on a bike ride with his dad this morning (used to adore this) and my husband rang to say he's hysterically crying and refusing to cycle. So frustrating - all we want is to have our happy boy back.

 

Any tips or advice would be appreciated. Apologies for the long post.

 

Emma

 

 

****could he be in pain which is causing the reluctance to do anything active?

x

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As he has ASD and Dyspraxia, is it possible he also has Dyslexia, probably dysgraphia and might also have problems with executive functions.

 

This is bound to effect his self esteem because he is an intelligent child [most likely around average], and yet he can see that he cannot do what other kids can and are doing. So he is going to make a judgement on himself ie. stupid, rubbish, useless etc.

 

These are all things my son used to say about himself.

 

Your son also has sensory processing issues. Does he have a diagnosis of Sensory processing Disorder? He most likely finds many environments and sensory input confusing in that it may not be processed in real time. It maybe overpowering to the extent that his sensory system cuts out other sensory inputs. Or he may at other times not get the sensory information he needs to make sense of the environment/situation. It is all very confusing, painful and causes alot of anxiety.

 

And the overwhelming emotional feelings will scare him. He sounds like a child that judges himself, and so he will think that his reactions are naughty/wrong, although he may have little control over them. So he will start to avoid things he knows or thinks may cause that upset. That is what my son did. He stopped doing anything that he thought would cause him to become upset and lose control. And his sensory processing may mean he finds it very hard to define what his emotional state is. He may not be able to regulate himself, so you may need to build in things that will help him de-stress, whatever that maybe.

 

I think you are right in making things predictable. I also think he may need specialist teaching and therapy from OT and SALT. And you need to talk to him about what his experiences are. Get him to talk to you [not when it is happening, but after a couple of hours when he has recovered, or the next day]. Start to explain that he may experience things differently.

 

And you need to give him advice on what to do when things do go wrong for him. He won't know automatically. So if he does get really upset about something, get him to suggest what he thinks would help him to calm down. If it is decided that some time in his room is what he needs, then make sure he understands that is not a punishment, it is a place to go to, which he has suggested, where he can calm down.

 

And talk to him about how he says sorry, or how he can repair things after he has got upset. Because he won't know what to do or what to say. He will be worried that you will hate him or think he is a bad son [because that is what he is saying isn't it]. So give him examples of what you, or your husband, or the other kids do to make things right.

 

For example, my son had got really upset at school about another child that often teases him. He had got upset to the extent that he had picked up a chair and thrown it. He refused to go into school the next day because he was worried he would get that upset again. And he was worried that the teachers would hate him and the kids would be afraid of him. Now throwing chairs is not acceptable, and we discussed that. I also talked with school about this other child, and so now my son is getting alot more support to help him cope and get out of potentially explosive situations. But I also had to talk to him about how the other kids would not hate him. I asked him if any of the other kids every got angry and shouted or did things, and he said they did. And I asked him if he hated them for it. And he said he didn't. So I explained that, in the same way, the other kids would not hate him. Regarding his teachers I said that you need to say sorry - which he said he had done. And I said that I would ask his teachers to talk to him about it so that he knew they didn't hate him. And I said that you cannot stay at home forever because you are afraid of getting upset or angry. Everyone does get upset and angry, and at your school the adults are going to help you do the right thing and get over these upsets. Which they do.

 

I also think that an indepth assessment by an independent Educational Psychologist, who has alot of experience of assessing children with an ASD would be useful. Because I think you, and any potential school or therapist or specialist teacher, needs to know what his strengths and weaknesses are. A combination of ASD and Dyspraxia is going to mean he has alot of problems planning, organising, sequencing and will probably need his learning much more structured. Alot of learning nowadays is self led. Children with ASD cannot lead themselves in this way because they are often future blind, or objective blind. They need the lessons to be taught in a much more logical and explained way with supports and teaching approaches that work to their strenghs and support their areas of weakness.

 

Overall your son's responses sound very similar to my son. Your son is self aware. He sees that he is different. That he isn't doing/learning like other kids. And he is judging himself. Only by him learning about his differences, and learning what he is good at and how to deal with the bad stuff can he begin to give himself "labels" that are positive.

 

Also the overwhelming emotions of upset can make that the dominant feeling when thinking of how the day went. So what the school does with my son is to frequently check how he is doing and mark that, for example, as a smilely face. And everyday they find something that he is happy about and which made him feel good. And he is reminded of that.

 

About two years ago my son was so anxious he was out of school for about a year. And I remember at one low point him saying that he did not think he had a happy feeling inside him. That is awful for a 10 year old child to say.

 

Now things are alot better. My son has also been diagnosed with an Anxiety Disorder and OCD. I think that is due to the chronic levels of stress and anxiety he had to deal with up until he started at his new school. He simply was not coping and his failure to cope and make sense of things was adding to his downward spiral of low self esteem.

 

My son is also now on medication for OCD.

 

Is there no professional that you can involve where you are now? Because simply returning to the UK is not going to solve the problems overnight. You are going to need time, and in some cases a significant amount of time, to get your son into the right school environment here in the UK.

 

My son now goes to an independent ASD specific school for children who are around average cognitive ability. It took us two educational tribunals, over 2 years, to get to where we are now. And prior to that we had years of getting professionals to see and diagnose him. The LA pays the school fees.

Edited by Sally44

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Thanks for your fantastic and informative reply Sally44. I'm feeling hugely guilty, as all of the things you have said, I know are true. He does have Sensory Integration Disorder and I'm concerned he has Dyscalucula (spelling?) as he struggles with maths so much.

 

I've let the situation and stress overshadow what I already knew about my son. His stress is overwhelming and I'm probably not helping him at all.

 

He is going to return to the small Primary where he was before we left for Kuwait. I know he feels safe and secure there and the school only has 75 children in it. We have seen Ed Psychs and a Child Psych when we were getting a diagnosis for ASD. We have had specialist OT and I've already contacted them again about our return. I honestly feel like I don't know where to turn to for help when we get home. The waiting list for CAMHS is always ridiculous. I would love to have him tested for Dyslexia and Dyscalucula. I would also love him to have the opportunity to talk to someone professional. Do you know the best route to take to get good professionals on board? Waiting for them through 'the system' has always been hit and miss and I'm never quite sure we're getting the best advice.

 

I'm thinking I'm not dealing with the reality of things very well and I'm resentful that life is so tough for my little fella. I'm scared about the future and how he'll integrate back into school. Also daddy will not be with us as he has to stay and work in Kuwait. Goodness, we are in a mess.

 

Good to hear that your Son is doing well and that you've found a supportive school.

 

Thanks again.

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