nightmare social occasions

[jmb1964]

We've just returned from lunch with friends who live in the country. The whole outing was arranged so that ds 1 (nearly 6, Aspergers) could see an old friend of his from nursery (and I get on well with the Mum too). Unfortunately ds1 and Sam fell out as soon as we got there, and there was a lot of hitting, kicking, etc. I wanted to turn round and come home, but dd1 and our two younger ones were having a nice time with Sam's younger brother, and they hadn't done anything wrong. So we stayed - Sam's parents were fine about it, but his grandparents were clearly thinking I should be handling things differently. Ds1 got so worked up, his asthma and eczema flared up (or perhaps it was hayfever), and he scratched madly all the way home.
Should I just GIVE UP trying to do things like this at all? Maybe ds1 just can't do socialising with 'normal' children, but what does that mean for the rest of the family?

Not sure there's an official diagnosis. I suppose in adults a high functioning autistic would be able to live more or less independently (I say more or less becuase I know of an adult couple HFA and AS who have children but still require daily help from SS). A low functioning autistic could not live independently.

In children its often defined in terms of language. if your child develops language at the normal age but has the other type of problems (rigidity etc) they tend to get an Aspergers diagnosis. If they develop langauge later, but fluently they tend to get a high functioning autism diagnosis and if they don't develop language then they stay with the low functioning diagnosis. IQ can also affect this (low IQ and autistic would probably be someone fairly low functioning).

Becuase the boundaries are very blurred and children move most diagnosticians tend to diagnose Autistic spectrum disorder or something life than instead these days.

alterego- maybe suggest direct payements to her. It means she could control who looks after her son, and allow her to build up relationships with a couple of people. I wouldn't leave ds1 with many people, but there are some- it's just a case of finsing them. Even if you give her a number and say 'talk to these people later'

It does sound as if she is isolated and almost needs to meet people in her situation. That's dificult to do though, especially if you're not ready to move on with the diagnosis. You can't force her to do that anyway. All you can do is find out the names numbers of local support groups and perhaps suggest she goes along. Does her son get portage (can't remember how old he is)- Friends of Portage could be a way of getting to know people in the same situation as her. Another suggestion is for you to look out in the local paper for fun days for special needs kids, usually these get organised by someone- and perhaps offer to go along with her and all your children (if they can all be managed). It could lead to her making more friends with others. it's never so hard when you have other people in the same situation to moan to, becuase they really do understand the difficulties and they do have the same worries, and also they give hope (try out different therapis etc- as Davros said- it was my SN friends who introduced me to BIBIC- the therapy itself seems to be working- but also it's made me really much closer to ds1 again).

Of course she needs tos do all this stuff herself, but I do think providing numbers is useful even if she doesn't use them for another year.

Jimjams - I'm at work now, so no time really, but just wanted to say how nice it is to hear that your BIBIC therapy is working, and that you feel closer to you ds1 again - one of the hardest things I found really early on was that I thought our ds1's diagnosis was somehow getting in between us. I have a little sort of catechism with him - I say 'how much do I love you?' and when all is well he says 'more than anything else in the whole wide world'. Perhaps a bit twee, but I do it even when I feel as if I'm about to explode, and it calms us both down a bit. I know your ds1 has some 'words' of his own - does he have one for loving, or does he just show you?

Jimjams, I realise I risk sounding like Pollyanna here, implying that everything will be alright in the end, so forgive me. As far as I remember, in the program about your friend with the 4 ASD boys, the youngest one was about 6 or 7? I'm sure they said that he hadn't spoken a word until a year ago. From what I remember, although he was clearly "parroting" phrases a bit his speech was quite distinct. It would at least give you something to work with, wouldn't it? All I wanted to say really, is that it's not guaranteed that your ds1 won't learn to speak now, is it? I do hope not, and I'm really glad that the BIBIC program is working so well. By the way, I would be more than happy to make a contribution to your sensory room if you let me know what would be most useful.

Jmb1964: not twee, just lovely!

davros and jimjams, you have both been so open about your feelings here, I just wanted to say many thanks and I hope that this discussion hasn't been too painful for you. You and other parents who've posted have given me more insight into what it's like to be the parent of an SN child, even though it seems there is no one way this affects everyone. I really hope you have got something good out of this discussion too - more than just a confirmation of your feelings about NT parents and the divide that exists.

Jimjams, you have been so patiently answering my questions and I feel I have taken up enough of your time for now I second tamum's post, so glad for you that the BIBIC progamme is having some positive effect. If I see you posting some news about your son's progress, I will now be far more aware of what that means to you.

Thanks for the messages.

I don't think he gets the concept of love in the abstract jmb iyswim, but he certainly shows it. Had a lot of climbing into my lap and snuggling down today- he's a very loving little boy.

Thanks for the offer offer for the sensory room tamum- that's very kind of you. I was picking my way through all the rubbish in there yesterday when I found a slug on the all (lovely) so maybe I need to send a present to a certain you know who!

Ben (Jacqui's youngest- he's 6) has done amazingly well in the last year. I thought his language was fantastic. It did start very suddenly. That can happen in autism- I think its a particular trait in Jacqui's family though. In his book Luke descibes going to bed being unable to read (he was about 8) and waking up the next day with a reading age of 14! Bizarre! My friend met someone - now an adult- who didn't talk until he was 14!!!! So there's plenty of hope. You also get wierd cases- like Jasmine Lee O'Neiil who has written a book (Through the Eyes of Aliens) but is non-verbal.

This topic has been interesting for me tigermoth. I hadn't really considered exactly why I avoided mixing in the NT world on a daily basis- I think I do have a clearer idea now. Still won't rush headlong into doing it though not yet.

One thing I didn't metion was that when ds2 was younger I purposely avoided anything with babies of his age - the comparisons that davros described were still too fresh- and tended to lead to panic attacks (for instance when he was 11 months I met a friend with her son of the same age- and her son was doing the big one- pointing - so I hyperventilated for a week until ds2 started pointing). Now I know he's fine I have decided to start taking him to a baby music class next term- must remember to sort that out.

This type of conversation definitely helps you to find out what you think and feel about things and, during the process, that can change or modify. I found the turning point for me was being a volunteer on a parent-to-parent helpline, I was helping others but I also found out how I felt and what I thought and also realsed just how much I knew which gave me confidence. I gave it up after a year as it got too intense and everyone seemed to phone at the weekend. There was also the time that I thought I'd pressed the "listening in" button on the phone and said "you'll just have to f*+~ing wait" and a voice (of a sad and desperate mother) said "oh, OK then". OHMIGOD"!!!! I was mortified, although it was funny, and I rang back and said I'd been arguing with my sister and thought it was her.........

Davros- I've thought about volunteering for the NAS education advocacy line, but have decided not to at the moment. When ds2 start nursery for a couple of mornings a week in January I'll actually have some time to myself. I'm meant to be doing a homeopathy course so thought I'd spend more time on that- and try and forget autism for a bit. Also going to have to see what happens with ds1 and school- really very unconvinced that it'll work (not because of the school, just becuase I'm not sure he's ready). I'll probably have enough education problems of my own next year. The other thing that has out me off is previous experience as a volunteer- as you say people ring up at totally awful times and expect you to drope eveything and deal with then NOW. I might do it sometime in the future when I have a bit more time (and am a bit less emotional about schooling myself!)

lol@ the phone thing. I've done something similar before at work - one of the mute buttons broke- very embarrassing.

Jimjams, just wanted to reassure you about school. Like you I had dreaded my ds starting school and definitely would have kept him at home for another year if I had had a choice (here you HAVE to send child to school at 4 - much too young for some nts even imo).

But it really really turned out far better than I could have hoped. Infact he thrived in the school environment. Okay we did have some hairy moments - he could not bear the assembly hall until Christmas (echos, etc) but the teachers and classroom assistant were fantastic and let him take the little steps he needed to. He progressed massively in what he could cope with in his first year.

I think you might be pleasantly surprised how well school will go. I hope so anyway.

Jimjams, I am still grinning away at the image of your son sitting next to you in a sheep suit! Have you seen Babette Cole's Silly Book? I envisage him looking just like that. I always think anyone is socially acceptable anywhere if wearing a sheep suit.

Message withdrawn

been lurking on this thread for a while, just wanted to add to bloss's comments. This thread has really made me think about SN parents and how life is different, specfically the ways in which its different. Jimjams, you are eloquent as ever. at the risk of sounding revoltingly cheesy, I really do feel I learn from threads like this.

Just shows that if a conversation goes on long enough and people are willing to contribute we DO get somewhere in the end!!
Jimjams, think you are right not to volunteer for NAS as you obviously have enough on your plate and prioritising is another skill that we need almost more than others! I did it because I was quite isolated at the time.
BTW, I wouldn't normally use the terms HF or LF as they are considered very unacceptable but they are useful shorthand sometimes. The reason is that most autistic individuals don't have one level of functioning but different levels in different areas, that's another reason they sometimes get singled out from the rest of the SEN community. At our Riding for Disbaled session there's a little girl in a wheelchair who, to me, looked otherwise fairly "normal". I chatted to her mum and asked if she had communication problems and her mum said "yes, she doesn't understand anything, can't do anything for herself..." etc . I was chasing my son around, telling him from a distance where to go to the loo (on his own) and he came over every now and then for a spontaneous hug. Boy, did I feel lucky and humble.

Davros, I had no idea that lf/hf is now considered to be unacceptable. My son has hf autism and that was what he was diagnosed by professionals as. I find it a useful term to use, as people automatically think 'rainman' when you mention autism.

Sorry, maybe I'm being completely ignorant, but I had never heard this before and wonder is this taking 'political correctness' too far! Sorry if this causes offence, I am just intrigued!

No offence on my part - you're right about it being PC. I don't know if Drs would give HFA diagnosis now, maybe its still used as a medical term. They usually give Autistic Spectrum Disorder which, to me, just means autistic. I think too much PC terminology makes everything sound so moderate and acceptable so I sometimes say handicapped which really embarrasses people, especially professionals.

As you say Davros sometimes the drive to PCness masks the difficulties that SN children and their families have. It must seem that people are paying lipservice to your 'special needs' while doing nothing to address them.

I have also found this thread very educational.

Thanks for clearing that up Davros. I just had never heard that before and was wondering if when I described my son as hf if I was being completely out of order! But then I do live in a bit of a backwater!

By the way my son was diagnosed as on the spectrum for years and the professionals couldn't decide between Aspergers and hf for quite some time. It was only last year (because of the language difficulties) that they finally finally gave a diagnosis of high functioning autism. So professionals here are definitely still using the term.

I bought a book today- Autism Spectrum Disorders The Complete Guide by Chantale Sicile-Kira. (parent and professional) I thought her final two paragraphs sum this whole discussion up really:

"LAST THOUGHTS

Some parents say that if it weren't for autism, they wouldn't have met the wonderful people that they have come to know, that autism has given them a 'raisin d'etre', a reaosn for living. Perhaps I am much too cynical, but I tend to believe that without autism in my life I would have met some wonderful people and become comitted to some worthy cause. This is not to speak disparagingly of all the fantastic auism-related friends my family has made over the years. It is more a comment about the fact that I could do withouth having to deal with all the individuals who don't 'get it', or the added stress of administrative paperwork, phone calls and resource-searching one needs to do in order to get any assistance. I could still have a wonderful, rewarding ife without autism.

What is certain, however, is that I have learned mmuch about what is truly essential in life. I have learned how fortunate I am that my body and mind work in synch, and how much inner strength I possess. I have also learned literally to stop and smell the roses and to take pleasure in the simple moments of daily living betweent he bombs falling. I have learned that heightened senses can bring both pain and pleasure, and that passing the time of day by staring at dust particles in the sunlight, feeling sand sift through your fingers, or your body floating weightless in a pool, doesn't seem so crazy after all. In fact, it's very relaxing. Try it sometime"

Sums it up for me.

Jimjams, funnily enough, I think living with a two year old is a very similar experience. Yesterday, taking him to the shoe shop we both had to sit down on the pavement to examine some very interesting miniature pine cones. I had never noticed them before and my ds was quite right, they are very interesting!

There was a good article in last Friday's Evening Standard magazine - interview with Virginia Bovell, Nick Hornby's ex-wife - about looking after her autistic son, relevant to this discussion. Could scan this in if anybody out of London is really interested!

I have never felt "blessed" to have the "opportunity" to meet the challenge of having a child with a disability. I too think I would have a rewarding life and meet wonderful, interesting people and be committed to other causes without autism. The only parents I've ever heard say they feel "blessed" are those who also have NT children, and they are still few and far between and I'm sure don't always feel that way.....

It's changed my life but I wouldn't describe it as a blessing. Even if it was for me (which it isn't) it certainly isn't a blessing for ds1.

I do think having a child with autism has given me some balance though - I do think I have a better idea of what is important in life though. Of course given the chance I'd choose clueless and unbalanced over autism though- who wouldn't.

On the HFA LFA front. Had a visit from the SALT today who thinks ds1 is more low functioning than we do (because he refused to do her tests she set him-she said he was "dreamy"- bollards- he could get a degree in demand avoidance- he obviously had her sussed). What really annoys me is that I don't particularly care at age 4. Young children can get a diagnosis of AS and grow up to need assistnace, or a diagnosis of being very low functioning and grow up to be Temple Grandin. I'd rather she just gave him some speech therapy, than spent ages discussing where he is on the spectrum. I'm sure this all goes back to the issue that the SALT service has with me. Call me paranoid, but it wasn't that long ago I heard that I supposedly hadn't accepted the autism diagnosis- seems they all want to prove it to me (although I'm not quite sure what they're trying to prove).

Mind you I heard an appalling story today. Someone my mum knows has a grandson who is about 5 or 6 (last time mum saw him he was in the supermarket barking like a dog). Diagnosed by an paediatrician (a respected one) with autism and verbal dyspraxia. Has been sent to the bigwig SALT for verbal dyspraxia treatment who has now said that he doesn't have autism he is traumatised by his family(becuase a family memeber died when he was about 18 months) and his family need counselling. So years after Bettleheim its still the mother's fault. And these professionals wonder why we have so little respect for them.

Anyway the good news is we have today employed a private SALT. Loads of experience of autism. Hopefully she will be interested in providing some therapy rather than arguing whether he is HFA with verbal dyspraxia and language delay or LFA or whatever. Surely autistic spectrum disorder has to be more useful!

God jimjams every that bloody SALT or PT came round here we got the same. They seem more occupied with how badly they are doing and what they cant do than what they can. I can honestly say the handful of times I met the SALT I got nothing out of her visits. The tasks she used to set us were scribbled on a peice of paper and by the time they had arrived through the post dd seemed to have moved on from those exercises anyway. dd speech therapy has been based on things we have read in books, resources we have a bought ourselves and things which we know are developing her language skills. I am so sorry you are having to go to the lengths of having to go private for SALT when really it shouldnt be necessary.

As for your mothers friends grandson maybe thats what they think it is with my dd. I mean we have had death and trauma since she was born so why not blame it on us also. They make you wanna scream dont they.