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?

Sorry not trying to start the debate again. I've been browsing a bit more of the Chantal Sicile-Kira book mentioned below and came across this "food for thought" in a section about trying to get isolated.

"It's a Wednesday morning and I am volunterring at the jog-a-thon at my daughter's school. As we await the start of this event, other mother's are standing aound talking. I approach a few I know and hear a bit of their conversation. 'Oh I hear pasqual got voted off' 'oh no he was my favourite!' 'Mine too' I move in and ask 'What are you talking about?' They look at me as if I have landed from another planet and say 'Survivor' I say, 'Oh have you got time to watch that?' and as they look at me one replies "we make time, the whole family".

They continue to talk about Survivor and I drift away. I am left with the usual feeling of being an alien on another planet. Is it because I have a son who is severely handicapped by his autism, leaving me with a lack of time for trivial time fillers that I don't fit in

It's hard to feel as if you fit in when you don't have the same points of reference. The parents huddle round wating to pick up their children after school talking about their daughter's latest piano recital, her high scores on her SATS, or how their son is representing the school at the county science fair. Somehow the highlights of my 14 year old son's week (he sat in his mainstream calss and particpated appropriately for a one-hour strech, and hasn't wet the bed once) don't seem like the kind of information I can just slip inot the conversation and share as an accomplishment.

What are my time fillers? Filling out paperwork to explain why I stil need respite and other services; preparing for my son's annual review at school and documenting why ne needs OT and ABA; explaining to the medical insurance company why my son needs certain treatment; attempting to keep him from redecorating the family room; making picture icons; trying to reach the neurologist about seizure medication; reading up the latest research; making my son clean up the mess when he did redecorate; sending letters to politicians; attending voluntary board meetings; taking my son fro a run or swim becuase he is too hyper; cleaning spots off the rug , the couch and the walls that you really don't want to know about and oh yeah- trying to earn a living.

I don't share the same cultural points of reference as most of the toher inhabitants of this suburb. My reference points are those of autism: talk to me about ABA, OT, MMR, IEP, NAS, GFCF, DTT, ASD. I'm sorry I don't know about reality TV."

I assume the author of this piece is american (neurologist- what's that? ) but I have to say the things she suggests talking about are all the things I talk about. Different world's and all that.

BTW Guess what I did last night? I made gluten free bread and then I made up picture icons! See she knows my life!

Sorry that should be trying to avoid getting isolated. And apologies in advance for appalling typos.

God, tell me about picture icons! My quest for new and exciting (and cheaper) types of velcro is never satisfied! Then we do all that stuff your school has started on - digital photos of everyone, every setting and every new toy, food etc (and then he's not interested in most of them!). Very good excerpt Jimjams, although I am looking forward to an evening of Fame Academy followed by Pop Idol........

well yes- I must admit I did watch survivor! But I was making picture icons at the time! Does that count?

You're making me feel guilty. I should be photographing every new toy! And I really really really should be using more choice boards.

Last nights picture icons have been very successful though. I've translated his books into PECS (suggestion from the new and expensive SALT ). He loves them! I've done 3 so far and he's been reading them all morning. More tonight.

Jimjams, just started PECs etc conversation on Special Needs as don't want to bore everyone here with it.

(neurologist- what's that? )

brain specialist. deals with loads of issue regarding the brain, pathways, worng messages etc etc.

(not that i'm an expert mind)

I know misdee- I just meant you won't get to see a neurologist in the UK unless you have half your brain missing (or worse) I have a friend whose daughter has severe uncontrolled epilepsy (probably some sort of undiagnosed syndrome) and she's been waiting years to see a nerologist- and she had to fight for that (to go on the waiting list). Sorry on my soapbox again but when you actually try to use the NHS you find out what an absolute joke it is (or would be if it wans't your child not being treated). You can tell its American as they have OT's and provide ABA without a major battle.

ahh right, i missed the sarcasm again lol.

i know what u mean about waiting for appointments, just recieved letters this week about both my dd's referral to the hospital, i know that unless i get a cancelation appointment i could be waiting upto a year (maybe more) to actually get appointments.
sickening isnt it.
if only i could afford to go private.......

It's difficult to get sarcasm into type if in doubt though I'm usually being sarcastic when talking about the NHS It's not sickening- its a bloody disgrace. The absolute worse thing of all though is that if you do go private you get a much better appointment. Instead of waiting a year to be talked over for 10 minutes you get at least an hour with a consultant listening to you. The whole thing completely sickens me.

my dd1 last appointment was very quick to get mainly because it was a cencellation and i got a phone call the night before. when i got to the hospital (3towns away) we actually only saw her consultant for about 10mins. i give him his dues, he does know his stuff, every treatment he has recommended has worked, told me my doctors have been persribing the wrong treatment (the cheaper treatment of course),that she actually has 2 skin complaints which was why the treatments also werent working for her, and the wonders of wrapping her in clingfilm (very odd) but unfortunatly her next appointment isnt til nov, i would love for her to see him on a monthly basis to try and keep things more undercontrol, but with the struggling nhs this isnt a possibility at all.

Don't mean to keep restartng this but yet again the Chantale Sicile-Kira book has come up trumps (I would REALLY recommend it to anyone working with ASD's- and perhaps all teachers). Anyway a little extract here from a section about the grief cycle that you go through when your child has been diagnosed as ASD. I thought it backed up Davros' earlier comments.

"Sometimes you feel an overwhelming need to isolate yourself from others because the pain of seeing other parents interacting normally with neurotypical kids is too great. It is not a good idea to stay isolated, however. To get through this, use local assocaitions to find other families who have children with ASDs or other disabilities. You will feel more comfortable with them, as you will understand each other's concerns. Eventaully over time you will come to feel more comfortable spending times with other families who are not in the same situation as you."

Jimjams - the book sounds great - Amazon here I come! Ds1 safely back at school, and only one major mishap so far - it's too good to be true! His birthday is next week though - the last two have been quite traumatic, but at least this year I'm prepared... He wants me to make his birthday on a Saturday like his sister's was last month - 'Mummy, why can't you make things make sense?' Why indeed?

no, don't apologise, jimjams. I can see how meeting with other SN parents can fulfil two functions - firsty giving vital support based on shared experience, and secondly, the socialising aspect slowly making it easier, possibly, to mix with NT parents later on.

If you've revived the thread, I'll ask another question - not specifically one for you to answer, jimjams. I don't want to quiz you endlessly

From reading messages here it seems that most of you SN parents of babies,toddlers and young children and do not know what the future holds. You are fighting for an accurate diagnosis. You do not know the extent of your child's abilites, and how they will adapt to life ouside the home.

If you get close to a group of similar SN parents, all with young children, it's possible that none of you will have a clear idea of the future. How do you feel if, say, one of the children develops a new ablity? suddenly begins to talk or walk? or if your child turns out to have more severe problems than one of your close friend's children, when you thought you had roughly the same types of situation? I know you must be very, very supportive of each other and of course would feel happy or sad for the parent and child. But.... if you find it very painful to compare developmental milstones with NT children, would you get a pang of pain if children in your group of SN friends change and develop differently from your own? Or if your child makes a developmental leap while a close friend's child does not, would you feel awkward in her company? Do you think parents of SN children find it easy to keep the same friendships and groups throughout their children's childhood for this reason?

In my experience tigermoth that does happen too. I have been to an SN toddler group and started going when dd was about 20 months and all the children have progressed differently. Some faster than expected and some slower. I personally have noticed the slower ones making smaller 'steps' and I understand that is important for 'them', whereas the more capable children are making 'bigger' steps IYKWIM. I think on a personal note SN kids parents tend not to compare them anyway because they are all so very different. If you went to sit in my dd's SN nursery class you would realise that 'noticably' there is a big difference in all of them physically and mentally. If I go and sit in ds's nursery class, yes they are all 'different' but developmentally they are all folowing a very similar course. Most of my friends are NT mums so I am not intending to flare just trying to explain how I feel but I bet it makes no sense

Over time you realise that there's "no free lunch". My friends who have AS or HFA kids do not have an easy life but its different. I have learnt that whatever you see another kid can do that yours can't, no matter how much "better" they might seem, yours can usually do something that the other can't. I think SN parents are generally tolerant, patient and kind although there are those who are not! I do also know one or two people who find it unbearable to see how "well" other kids are doing and just can't handle it but I think its quite rare. One friend in particular chose not to tell anyone about her son's diagnosis at first and this just became too stressful and painful as it became more and more clear that he had a fairly severe disability, she moved from one country to another to start again with some honesty but she still finds it hard. She also can't bear to accept that her son's peers are kids like mine! I don't have a problem with any of this although its not easy at first but you really do learn that no-one in this situation has it easy. E.G. my son can't speak but he's very spontaneous, interactive and affectionate. Several children I know who can speak very well have no spontaneity and just don't speak unless they are heavily prompted. We do also have all those other things in common, statementing, pursuing SLT and OTs etc etc. I also find that many of us go out of our way to help other parents who are newer to this situation and I think that helps us in comming to terms etc too.

Interesting angle tigermoth. Yes it does happen. A friend of mine has a daughter who at 3 looked as if she was going to be AS, now at 7 it's clear that she is possibly the most severely disabled of all "our" group. I think it must be very painful, although her mother seems very accepting and very at ease with her dd's problems.

I think the difference is the competitiveness is missing. I have been to so many NT groups where mother's are ridiculously proud of their children and start every line with "he's such a bright little boy" or as they get older "my little girl is so popular" or whatever. Mass generalisation but I've been around enough of those conversations to have a very strong dislike of them. Have to add though they were more common in London than here- maybe because my London groups had a high proportion of first time mums. Those type of conversations don't seem to occur amongst the SN kids. Also the children who are very high functioning still can have quite considerable difficulies. So for example there is a little boy in our group who is very verbal, and very able, but I find him much harder to deal with than my son. I think we tend to talk more about problems as well than boast about achievements. I mean one of my son's biggest achievements this year has been to learn to walk and carry something at the same time, but I'm hardly going to get smug about that!

It's probably no accident though that the person I talk to the most has a child who although very different from mine has the same type of ability. ie distinctly dodgy language but normal IQ. At this stage they probably have the same prognosis as well whatever that prognosis may be.

I used to think that AS must be "easy" compared with non-verbal autism, and then I spent half an hour with an AS kid- and my god! I was exhausted. He was incredibly bright academically, but his ridgidity and lack of understanding of social graces made ds1 look like an easy going socialite As davros said I guess its just different problems. I do think (again mass generalisation) that a lot of SN mums have different priorities, so for example although the AS kid mentioned above was incredibly academically bright, that's the last thing his mum would have been talking about as she was just trying to get through the day.

thanks for the explanations. I'm not surprised to hear you say that a very few SN parents do find developmental differences hard to cope with. But a relief to hear that 'competitve edge' is mostly missing amongst SN parents, though I suspected from reading your posts that this was so - you all seem so tolerant. I hate that competitiveness too, and have extreme problems with the phrase 'he's very bright you know' and also go out of my way to avoid competitive parent groups I don't think I am alone in that.

I can see what you're all saying - even if a child is relatively mildly AS etc, the problems the parents face can still be severe. I too would find it hard to cope with a child who could talk but didn't interact.

you're welcome in this house then tigermoth!! None of my NT friends have ever used the phrase "he's very bright you know"

Having speech doesn't always make things easy, it's true. One of my friends has a very verbal dd, but her daughter really cannot tolerate other children at all. She finds it hard to visit other houses and impossible to have children in her house. It's quite tough on her mum- makes socialising difficult (and she really only has SN friends as her dd's behaviour is so difficult- she's just found it impossible to mix with NT's). Very verbal dd though, but I would say ds1 is much easier to mix in with a group.

jimjams, I'll take you up on that invite one day

Look forward to it!

I do that is- look forward to it. My brain isnn't in gear tonight- dreadful day- and yep I've been on the phone to my auti friends