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How do you sucessfully HE an Aspie? Despairing here...

14 replies

SugarPeaSnap · 11/03/2013 20:38

Already I don't like the tone of my heading that I've described my son with a label like that so casually but I guess its the best way of flagging up our issue. DS is 5 btw way, hasn't been diagnosed, but it is screamingly obvious to me, and certain traits of his are making it so challenging.

We are unschooling by the way, and I can clearly see how he loves to learn, is learning all the time etc, though with a demanding 2 year old sister around I can see that he is often denied the support time he needs to do all kinds of experiments and projects which would make him feel truly inspired and buzzy. Today for example, can we burn different things because I want to see how some things might burn faster than others?! Confused After a morning of meltdowns from DS (because people can't read his mind and therefore do everything wrong), then 2yo DD catapulting salad all over the kitchen (because she wants to help with lunch) I do not have the capacity for doing science experiments. I am worn out by one pm and want to hide under my duvet.

In the beginning, been doing this since October, I could see DS was enjoying the peace to hang out, go places, look at books, play etc but now I can really sense he's a bit bored of it all. The other big issue is that he really does want to connect to others but he finds it sooooo hard.

He has one best friend who he has had since birth (schooled, same age, lives 2o min drive away) and he pours his heart and soul into the friendship which consequently leaves the other child in a tricky position, because when they meet its as if he has to fulfill (in my son's head) all his intense crazy play expectations. Often Best friend ends up getting whacked by my DS because Ds gets angry with him for not listening to him when they're playing. Luckily Best friend is very forgiving, but not sure how long it will last... and I really feel its getting necessary to help him learn to control some of his impulses. With 1:1 adult attention he is a delightful inquisitive, mature adorable child, but with other children he can get enraged so quickly, either because somebody wrongs his sister, touches something he deems precious to him, or if he feels intimidated. But it is so obvious to me that his rage is rooted in fear, and he has a lot of generalised anxiety. I am getting to the point where I feel it is literally breaking my heart to see his haphanded attempts at interacting with others.

He rushes to the door with squeals of excitement because his friend has come round at 5 pm on a friday afternoon, and I feel so sad that his friendship is squeezed into afternoons and once at the weekend because he doesn't have other more ready connections with others.

We have been trying for nearly 2 years now to make connections with other HE families locally but it is so hard. Partly because lots of meet ups are very loose and unstructured and the lack of clear expectations makes it difficult for him to find a way in to playing with others. I used to get involved a lot and scaffold the play but I can see the other kids now are so much more independent in their play and its making me and him stand out that I'm always hovering so close, and then when they witness his panic and meltdowns I think they a less interested in playing with him. Plus I find this exhausting, plus I find the behaviour of the other parents' children pretty awful sometimes, lots of fighting and pushing that parents don't react to, so there are a few children my son has been hurt by or intimidated by in the past and he just ends up feeling threatened in these situations because he doesn't feel he knows what going to happen. I've tried a few more structured activities like where there is an adult setting the tone, in these situations my DS tries to focus hard on the activity but I would still say the behaviour of the other children is quite poor and I feel that because DS clearly needs to learn how to be around others more explicitly than a more neurotypical child he therefore needs good role models. Plus he naturally has a fear or apprehensiveness about people he doesn't know and I think all the HE socialising is confirming the idea in his head that other people are scary and unpredictable.

I'm so tired of it all. This has all come to a head because he was crying in bed on sunday night that he only has one friend, and he feels lonely and it upsets him that he knows his best friend has so many other people that he plays with at school. It is breaking my heart and I am so tired of worrying about him all the time.

Am seriously thinking a small, calm school with predictable routine, good behviour and focus on learning might be better option.

This became an essay but it helped me to write it. I hope someone can pick out some salient points.

Thanks for reading x

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ubik · 11/03/2013 21:50

i'm not a home schooler

i'll say two things:

you seem to have decided your son has aspergers and this is helping you explain away his behaviour. If you have serious concerns you need professional help and advice to help him socialise and to help him learn.

He is unhappy in the social/learning environment provided by home schooling so why not investigate school options as these may suit him better and if he has aspergers he will get some professional help


anyway will bump this

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Welovegrapes · 11/03/2013 21:53

This reply has been deleted

Message withdrawn at poster's request.

akaemmafrost · 11/03/2013 22:06

OP. is he being assessed? I have a 10 year old ds with HFA (diagnosed). I also HE as he was unable to function in MS school. If you do decide to return him to school, I would strongly advise you having him assessed as its likely he will need a statement for allowances to be made.

I totally relate to your post. We struggle for friends though he has a few and tbh is not particularly interested generally. Funnily enough he actually finds it quite easy to make friends at p,aces like soft play, the park etc.

Unfortunately he has an extremely negative view of "education" and can be very demand avoidant where it is concerned. Much drooping and moaning over the keyboard, especially with maths. I count the seconds until I can finish the "lesson" and let him get back to his own topic work. We do lots of reading, research and trips and socially he has come on in leaps and bounds. It's SO hard to know if you are doing the right thing isn't it?

I don't know how to advise you really, I think letting go of what I thought his education SHOULD look like has helped. I just expose him to loads of stuff and hope something sticks! If he asks me about something we research it. He won't handwrite, but will write on lap top. I belong to some HE groups on FB who have really encouraged me. I don't post much but according to them I seem to be doing the right thing. We unschool too.

Anyway a great book is "home educating our autistic spectrum children, paths are made for walking". I find it very encouraging and dip in when I am feeling a bit lost Smile.

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SDeuchars · 12/03/2013 06:45

I feel your pain, OP. My undiagnosed-but-with-behaviours-very-clearly-described-in-books-about-Aspergers' DD is about to be 21 and was HE almost entirely until 18. 21 years ago, AS was not as much talked about and I did not have a label until much later than 5. What I did know was that I could not have put my DD into school either for her sake or theirs. Fortunately, I knew I was going to HE before she was born. I also have a DS who is just over two years younger.

I know it won't help much for me to say so, but it will get better. With your help and with getting older, your son will learn to self-regulate and to have coping strategies when other people do not meet his expectations. During her childhood, that was what I mostly concentrated on with my DD. I would worry that even a small, calm school won't be calm all the time. When it is not, the lack of calm may mean that the staff are not able to provide the calm your son needs. And you will not be there to talk him through it at the time and then to analyse it afterwards.

My DD chose to go to school for a term at 9.5yo and she found the full-on being with other people very difficult - after a week, she came home for lunch so that she could have a break. Although she wanted people to play with, she couldn't cope with the girls "following her around" and not giving her space.

My DD was also better in an environment where everyone was focussed on a goal. This meant that she joined clubs: music, drama, Girls' Brigade, sports. The behaviour was generally good and the focus was on achieving things together rather than on being friends and free play. One of my proudest moments was when DD got an award at 10 or 11, essentially for being "most improved" - the club leaders were recognising that although she could be a PITA, she was really striving to overcome her natural inclinations and fit in. Her efforts were cack-handed but she was trying.

She is now at university and has a group of friends that she is sharing a house with. She knows that she is still "different" - but sometimes knows that difference is a good thing. She still sometimes feels that everyone else is "doing it right" and that she is missing out - but she can see that time will take care of her being able to move into an environment that is more suited to her personality.

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ommmward · 12/03/2013 19:18

Listen to SDeuchars

Structured activities, and yes, probably with you more actively involved than most other 5 year olds. He needs that support in social situations until he gets more sense of how to read and respond to social challenges.

Swimming lessons might be a good thing (you might need to go in the water too - the teachers might well be uncomfortable with trying to juggle his needs with the other children in the class) especially if you can get him into a pre-schoolers class, because 3 and 4 year olds mostly haven't yet learned to be judgy about "difference".

Socialising plenty with younger children, where he can learn to be the competent and kindly person - so he's learning about sharing and deferring to others in a situation where "because she's so little, she'd love it wouldn't she? that would be so kind of you, and she'll drop your favourite toy as soon as we give her something even better to play with"

Getting him and yourself a wider definition of friendship. Find yourself some local teens or university students who will come and hang out with you and your family for minimum wage a few times a week. Friendships can grow out of that, and it also takes the pressure off you (you might want to advertise for a science geek who can do kitchen experiments with your Ds while you are concentrating on the little one).


Biggest thing: let go of expecting your lifestyle and your social life to look "normal". They aren't going to, and the quicker you all get comfortable with seeking out rewarding social encounters, the happier you'll all be (I mean this in the kindliest shoulder-and-tissue offering manner possible). Are there local groups for children with disabilities? Disabled swimming time at the local pool? Riding for the disabled? There are ways of meeting other families who will also be delighted to connect with a family which doesn't just drop into the societal norms. Over half of the families we socialise regularly with have one or more children with one kind of "difference" or another. In the end, we seek out a supportive and accepting network of people to hang out with.

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chocolatecrispies · 12/03/2013 21:39

I could almost have written your post except I think my son has sensory integration disorder and not AS - but socially we are much worse off than you as there is no best friend or indeed friend at all and he refuses to go to groups - and if we do go spends most of the time clinging to me, which is hard since my dd is very independent and runs off alone (she's one). I am working on adjusting my expectations and on building our relationship. I have not found a way that socialising works for us at all, not structured groups, not one on one. I am using the FB groups to feel less isolate myself and hope that we might meet some other families where

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SugarPeaSnap · 12/03/2013 23:46

I just wanted to say thank you all so much for the replies. It really helps. Have a splitting headache tonight so must go to bed but will reply more thoroughly tomorrow evening
thanks again Thanks

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SugarPeaSnap · 14/03/2013 00:12

Thanks to all of you for taking time to reply, am trying to let the advice sink in and knowing that others go through similar issues even though there aren't always easy answers is really supportive. akaemmafrost he hasn't been assessed - every time I get a bit low, or rather exasperated I think we need it, and then I get some good advice and something shifts and I wonder what the point would be. At the moment I have an appointment to discuss it with GP but not sure if I'm going to go ahead. If he doesn't go to school, is there anything to be gained?

Everything you say about letting go of what his education should look like, I've done that I think, I actually don't worry at all about whether he'll learn enough academically/life skills wise because he is so inspired to learn all the time, I think the point I hadn't got to is what Ommward raised, the idea of letting go of what a social life looks like as well. I guess when I do that I'll have reached the next level!

I have noticed that when he's in a better place in himself he is easier socially, as if when he is inspired and learning and growing and almost feeling more expansive in his mind/soul he is able to be more accepting of new situations and people. I made the effort today to work on his soul rather than his social life and I think I've just needed to come back to that.

So, this morning he woke up in a good mood and wanted to learn how to make an omelette for breakfast on his own, he did it and was so chuffed, and while they were both playing on c beebies website I managed to throw a bit of exploratory play science stimulus together on the kitchen table: a big transparent tub of water stones, leaves and loads of animal toys and fish, and star fish shaped ice cubes. They were thrilled and there was so much co operative play and invention and hypothesising and learning going on which ended with turning the whole thing into a gigantic ice cube. I can just tell he's in a better place now because of all of that. At 6 pm DD was distressed that a tiny plastic starfish of hers was trapped in the ice cube and DS was completely excited about working out how to rescue the starfish for her and how to melt the ice as fast as possible. Also he was sweetly reassuring her that he would be able to get it out for her. What I'm getting round to saying/realising, is that I've always been fully on board with the idea that when they're really playing they're learning, but maybe by focussing on that, the social stuff will follow in the same way that all the other learning does. If you had seen him today you wouldn't have thought he had any issues at all, he was thoughtful and considerate and being responsible/leader etc but also acquiescing to DD.

I suppose its all about focussing on the long term goals. I don't want him to think that being happy is about getting acceptance from others, and as long as he is busy and happy in what he's doing I have to trust that in time that will grow into more relationships and connections with people through common interests and pursuits. DeSeuchars it really is comforting to hear the story of your DD.

Maybe instead of taking him to stuff I need to invite people to join in with things where I know he's already confident/shining. Swimming yes, he loves that, and I suppose it's good as water is therapeutic/relaxing and you have more personal space from others in the water but it can still be a shared experience.

chocolate you didn't finish your post. How old is your DS? I agree that most of the work I've done since starting HE has been on our relationships and working on myself and my expectations. I try to get support and my social fix at weekends and odd evenings. Bt just sometimes I would like a family to pop round and the kids just go and play and I can be left in the kitchen having a natter. Maybe we'll get there in time.

Thanks all, you helped me shift my feelings x

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chocolatecrispies · 23/03/2013 19:12

Sorry I didn't notice I hadn't finished! After your later post he sounds even more like my son and I wondered if you have considered sensory problems rather than asd? The two often go together. Basically I we saying we have not found any socialising which works for us as my ds asks to go home all the time, so I am trying to help him build relationships with a few other adults and with his sister. And that's it at the moment. Mine is also very oppositional and rejects any suggestion I make so planning activities is hopeless! Hope to see you over on Facebook?

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SugarPeaSnap · 25/03/2013 20:01

Thanks for the extra info chocolate, yes I do think we have lots of sensory issues going on too. How old is your DS? They do sound rather similar. If you want to friend me on FB I am posted a message last night on MNFB about registering with the LEA, pic of me holding DS while he was a bubba. Would be nice to chat some more about how things are going x

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homeeducatemama · 28/04/2013 21:46

I wanted to reach out as a mum to a 12 year old with aspergers. Each child is different so tailor everything that people tell you to fit your child. I have had to change my expectations of what life will be like since my son was young. I couldn't go to a toddler play group and leave him to play whilst I had a cuppa as his behaviour could be so unpredictable. We found that he is better playing with those younger than himself even now as the rules are more structured. I still have to keep an eye on situations and am never completely relaxed at HE group but it has got so much better. Please know that you are not alone and it will get easier as you both adjust :)

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maggi · 29/04/2013 15:58

Hello
If it is in your financial capabilities, try a childminder for one day a week. It will give you both a break from each other. It is a small (small number of children) and calm setting option. This will let you judge whether school would be an option. The childminder might not openly call what she (sorry, or he) does 'formal education' but there will be a whole load of educating going on. The childminder is likely to have little ones who will be eager to have the attention of the oldest child. There may be after school children who will include your ds in thier play. The childminder probably links up with other childminders to have group play time and events. There will be lots of opportunities for Personal, social and emotional development.
Go and hunt out one of the Outstanding childminders - we are well used to home educating the under 5's, the Government call it "Delivering the EYFS". We can turn our attention to older children's education at the drop of a hat and we do it through play.

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SugarPeaSnap · 13/05/2013 21:16

Thanks homeeducatemama and maggi* for your encouragement and suggestions. I think a really fab childminder could be a good option. We have lots of travel coming up so possibly in the Autumn. There have been lots of positives lately, but I thought I would start a new thread for those since this one has such a dreary title!

Friends thing is still an issue. I would find it easier if he wasn't interested in other kids at all. But he really feels there is something missing and is aware he would like to have more friends. He doesn't like large group gatherings, but if we stick to the couple of one on one friends we have then things feel that they are never opening up for us.

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MrsFrederickWentworth · 13/05/2013 21:35

Op,

Is he at all musical?

I ask, because round here we have a great non audition choir that operates once a week, does concerts, and accepts all sorts of children. I used to be one of the people who helped. Choir master + at least two helpers and very focused. It absorbed people with all sorts of issues and they made some friends and
interacts socially.

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