Another who's new to this!

[Squirrel]

Hello, I'm Helen

 

I've an intelligent, interesting, fascinating but .. yes ... challenging 3.5 year old son, Robin, who has difficulties handling anger/frustration/communication problems (he has major tantrums involving headbanging) and learning how to play with other children (pushing, hitting out, snatching toys). He wants friends but doesn't understand how to achieve this.

 

We have just had our first appointment with a child psychologist and are being referred to the 'Autism Team'. He shows some of the signs and tendancies of Aspergers and quite a bit from Sensory Processing Disorder. As a former Primary School teacher I had met many techniques before - visual timetables and behaviour plans have always been helpful with Robin - but I am now absorbing more and more techniques for helping Aspies and SPD children and these do seem to be helping Robin as well.

 

We've just had a 'blow-up' of negative feedback and criticism from some of the mums of Robin's peer group, families that we met with frequently and who I gained a lot of support and strength from socialising with ...... This has left me feeling devastated and very vulnerable - I realise that Robin's behaviour can be unacceptable but I had previously felt that we were handling it, and him and those he pushed away or hit, affectively and in a way that was acceptable to the other mums .... obviously not ..... I am torn between sticking with the techniques and strategies that I believe in and have found to be effective and the worry of being accepted by these other families and my own desires to be liked and approved of by others. I am of course doing what it best for Robin in each situation but I'm finding it quite difficult to be confident and capable at the moment, and it's rather a painful process to 'fake it'.

 

We are a British family living out in Sweden due to my husband's work. Husband is Martin, and we also have a 10 week old son Joseph (and a dog and cats!) so life is busy and complicated as well as, usually, very satisfying.

 

Best Wishes to you all,

Helen

[NickyB]

Welcome to the forum, Helen

[Clare63]

Hello there Helen and welcome

 

Clare

[bikergal]

Hi Helen, welcome to the forum. You sound like you've got your hands full.

[Kathryn]

Welcome to the forum Helen. It will be interesting to hear of your experiences in Sweden especially with regard to assessment and diagnosis.

 

 

Sorry to hear you're having difficulties with other mums - it's an issue that will be familiar to many here.

 

K x

[puffin]

Hi Helen - good to see that you've made it over here. I know that you are in a tough place after the cyber explosion of last week but I'm sure that you will find plaenty of support and understanding here - as most of us have been through similar experiences.

 

 

[Squirrel]

How wonderful that you have the same name here, Puffin!

 

I am feeling better now - It took all the courage I could muster to attend a Birthday party at the weekend (not one of the Mums who'd posted on the other forum, but they were all there as well) - This time I wasn't worrying about Robin's behaviour but about my own - suddenly I lost all confidence in how I manage Robin, my strategies, consequences etc. etc. I was almost in tears and scared of going into the party .... (He was raring to go - "I see friends" "I play birthday party")

 

The last thing I actually needed was to be worrying about how other people see me when I'm coping with Robin! Crazy to care about them, but true none the less!

 

Anyway he was good - played alone until quite near the end - then sort of played with another boy, where they were both being equally 'assertive' over what should go where in a plastic pirate boat and were both pushing around and snatching toys a bit (Isn't it wierd when you look on a situation like that with delight rather than concern! Great! They are equally uncoo-perative!) and then he bounced around on a sofa with two other boys and all three of them were pushing and shoving and being corrected for it. I'm not pleased with Robin pushing other kids out of the way rather than using words, but I am REALLY pleased that his behaviour was normal in context!

 

Later he was alone with the birthday boy - we stayed late to take advantage of this brief period of co-operative play - and the pushing aside of the other boy's hands was getting a bit obvious to I said "Can you tell him in words Robin?" and he said

"I want to play with this all me alone"

 

Wonderful!

Helen

[bluefish]

Hang in there! your post made me cry! (in a nice way) know exactly what you mean about worring about how you handle your little one in public and what poeple think! Sounds like you are doing a fantastic job!

I am still the most stared at parent in any social situation in my area, ds does not do parties, but even the mums that know us well and "understand" that ds finds things difficult sometimes or may behave in a strange way, still seem to take pleasure in tutting and mumbling under their breath when ds does something unusual!

However now he is 5 he is managing better with certain situations and often it is not ds causing the problems! only down side to that is that he is so truthfull that he tells on EVERYONE! lol that won't help him gain friends!

glad you found this forum

I have found it a lifelinewith loads of people that have a wealth of info

x

[puffin]

Hiya Squirrel - how is it going

 

Glad you had a good experience at the party after all of that negative stuff the other week

 

xx

[NickyB]

Hello Helen

 

I'm so glad the party went well - I know exactly what you mean about having confidence in your strategies. I've now got past the point of worrying about what other people think, and it's quite liberating I have a handful of really true friends who don't judge me and are very supportive. Those are the people I value and care about, and I don't worry about all the funny looks I get from others. I feel that people are only reacting to what they see at that moment, and don't have any idea of what it's like dealing with it every day, and so I can't expect them to understand (hope that made sense )

Anyway, I'll stop rambling now - I hope you continue to feel strong, and you should have confidence in yourself because you're doing a fab job

 

Nicky <'>

[Squirrel]

Thanks girls. I will take strength and confidence from you!

 

Back in England over Christmas and meeting up with my closest, most valued friends and their children. You know - the sorts of friends that you have supported, and who have supported you, for decades rather than years and who you have so many shared histories with that just a raised eyebrow at an innocent comment has you both in stitches ....

 

I'm going to be very interested to see how Robin is with their kids, and his cousins as well, and what my 'no holds barred' friends have to say.

 

We're doing a Christening and buffet party for my second son, Joseph, and I'm arming myself with megabloks, drawing stuff and cars plus road-map mat to keep all the children occupied, whether together or independantly .... Wish me luck!

 

Helen

[puffin]

One little tip from someone who has hade the same problems is to where possible try and get friends and family to come and visit you where you are staying in the UK rather than making endless rounds of visits to people's houses. We made the mistake of craming in lots of visits to family and friends several times on trips to the UK.

 

As you know kids with ASD often have sensory issues and dislike change - we found that visits to a lot of new/vaguely known people's houses were often unsettling as there was often a lot of noise and excitment and also often different house "rules" concerning what you could touch/not touch, at some only vegetarian food was served and which rooms were allowed etc etc Whereas is visitors come to you then Robin will be in familiar surroundings so will feel more secure and can always escape to play in a bedroom if it gets too much. Another tip is to take outdoor stuff so you can use the garden or take a trip to the park if he gets hyped up.

 

I also found that familiar videos were a good way of calming things down - I can't count the number of times we watched Pingu and "Teletubbies in the Snow"

 

 

[Squirrel]

Thanks, I'll bear that in mind.

 

I'm already minimising time at my Mum's because she just cannot provide a low stress environment ....

 

Helen

[puffin]

Was just wondering how it went in the UK over Christmas - havn't seen you here or on MIS for a few weeks

[Squirrel]

Hi Puffin, and others

 

Got back from the UK to Sweden yesterday morning, and found a letter about a meeting with the Autism team in Lund for this morning ....

 

It all went well - UK trip and Autism Team meeting

 

(In fact Robin is a different child, he has improved enormously in the last 6 weeks - but they still 'saw what we were saying' enough to continue some interviews and observations over the next few months)

 

I'll pop back in later - I'm way way overdue for some 'chatting on the forums' time!

 

Hope you all had a good festive season, wherever and whatever you were doing ...

Hugs, Helen

[puffin]

Hi Helen

Glad to hear that Christmas went well - we used to find this as well - that DD1 AS/ADHD used to do better in smaller groupings where the majority of people were older than her - and used to to struggle in the chaotic and noising settings of play dates and playgroups

 

Hope that all goes well with autism team

[Squirrel]

Hello All,

 

This 'Meet and Greet' topic thread seems to have drifted off into a 'progress of Robin' thread which is probably not right and proper ... so I'll update you guys here (so you know where to find it!) and then try to open new more appropriately titled threads when I net have progress updates or questions to post.

 

Christmas and New Year in Britain went very well indeed.

 

My closest friends and their children ....

Robin and Adam (a year younger) clashed over a toy garage and the car that came on top of a celebration cake

(ASDA, much recommended bday cake!, Robin chose it as 'his' cake for the Christening buffet which seemed fair as his infant brother had two cakes on the buffet table!)

but this was a perfectly normal level of clash as far as both sets of parents were concerned, remove child, calm child down, discuss sharing of said toys, initiate apologies, try again! (both parties, we got into quite a rhythm of it - shall we dance?) They describe their boy as very independant and very stubborn ....

 

The two girls, my god-daughter and her younger sister - no problems whatsoever! Clashes over toys and taking of turns was managed happily with gentle prompting. I have no idea why Robin was such a gentleman with them (one 2 years older, the other a year younger) and in a sense it's actually a little irritating because their Mum is someone I could really get down to a serious parenting techniques discussion with ....

 

Robin's cousins - girl 9, boys 7 and 5 (Robin 3)

No problems whatsoever. Hubby and I were even able to leave the room for some quite extended lengths of time .... A bit of reiterating requests that others made - boy aged 5 had said no tricycles on the railway track, Robin, so find somewhere else to drive it ... - Robin wants to build the road next to the railway, do you think that could be possible? - etc. etc.

His cousins were not giving into him (which is what I had decided in advance was the reason why they always get on well ....) they just rubbed along OK with stating feelings and desires clearly and respecting each other's requests and so on. Very very nice - I wonder if it would work so well if they saw each other more often that twice a year!

 

My family were better. Not being under my parents' roof (we got a holiday cottage) seemed to give Mum the personal space, energy, calm time, whatever to be more flexible and more tolerant of my families needs. My brother was a miserable s*d but I'm not too worried about that. He has other issues at the moment, and 'finds Robin hard to deal with'. He adored Robin as a baby, shows signs of adoring Joseph now, and rapidly loses interest as children get old enough to have their own ideas and actually need far more thinking put into interacting with them .... I am VERY peeved because Robin loves his uncle and tries to get him to interact but it's all too much effort for uncle ..... grr!

 

Martin's (hubby) family were brilliant. His mum doesn't think there is anything wrong with Robin - all her grandchildren are strange in one way or another! - but she is EXTREMELY tolerant with Robin. Indulges him in crazy things like fishfingers for breakfast in front of the tv!!! and usually either gives into him or 'forces' him to go along with her choice of activity in a 'jolly hockey sticks' 'no nonsense' "We're going to do this now and it will be fun won't it' sort of way. I do laugh at how shell-shocked Robin sometimes looks at this! She tried to trigger a tantrum from him but found it quite difficult to wind him up - she finally got a toothbrush thrown at her when cleaning his teeth one night and stated that he's a perfectly ordinary stroppy toddler as far as she is concerned!

 

Robin was very well behaved over the whole holiday. Trouble only really when he was over-tired or rushed around too much. Having a holiday cottage was absolutely the right descision for greater sanity on all our accounts ..... We did stay with Martin's parents, as usual, but they are so tolerant that it is like having the house on our own terms anyway! (and I am very tolerant of their crazy little ways as well!)

 

So that's the Christmas bit!

 

Had the meeting with the Autism team. Very good feelings about it. Specialist teacher 'played' with Robin in the same room as the meeting. Martin and I noticed lots of sensory toys being involved. Also telling stories and telephone conversations. I wasn't able to take in how much success she was having with any of these but it's quite clear that it was a very directed, carefully thought through, type of 'playing' !

Other professionals listened well, made supportive comments, asked leading questions and made follow-up questions that showed both thinking and professional experience - if that makes any sense! e.g. when we were talking about food textures one of the ladies immediately asked about minced meat and mashed potato .... neither of which Robin will touch though we've had some success with mince in sauces, occasionally ... she was right 'on the ball' and obviously knew of common foods that can be an issue with these children!

 

They 'see what we're saying' and have booked Martin and I in for a 2 to 2.5 hour interview (without Robin) on the 22nd Jan, to be followed by a structured play session observation of Robin at his pre-school which will be videotaped for discussion afterwards. It all feels very reassuring - these people know what they are doing and yet feel sympathetic and supportive as well.

 

Fingers crossed! Thanks for being there to share all this with!

Helen

[puffin]

Glad to hear that you are making progress

 

I think that the "playing" was probably a part of the ADOS test that involves structured plaing, games and puzzles etc to test interaction, imginative play and speech patterns etc.

 

M flatly refused to do any of the imaginative stuff - making up stories or play with the dolls - yet managed to find thing in the detailed pictures and spot the difference etc that the person running the test had never seen before!!!!!