new autism/AS thread

[Jimjams]

Here we go.

Meeting someone else will really help. As will reading lots- helps explain the behaviour- and therefore deal with it.

Is there an NAS Earlybird programme near you- they'd be worthwhile.

I think the running off does get better, but it can take a while. I'll have a scout around in some books and see if they have any strategies. I can think of using a social story if your DS has enough language, or maybe a "wait" card if he doesn't. I'l have a look though.

That's a great idea Maryz

Thanks jimjams for the new thread.

I think there is some sort of course at the nearest Autism Centre but not sure if you have to pay for it or not.

I am definately going to write something on ds's arms or get him an ID bracelet or something.

Must go to bed now... very tired. took both ds & dd swimming today. It wasn't the mums and toddlers session and they weren't going to let me in as it was supposed to be 1:1 ratio of child:adult. I told a lie that ds was aged 4 - god knows what they wouldhave said if I'd told them he's autistic as well. He was fine though except for repeating everything that some girsl were saying in the changing room and getting some very odd looks.

Oh god I think that's first time I've typed "he's autistic". If I wasn;t so tired I think I'd cry...

chin up thanks again for the support.

Eulalia - well done for taking them swimming, and I know exactly what you mean about saying it out loud. I took our ds to a party today, and just about the whole class was there. Ds had been sent home from school in the morning after a fight with another boy, and I felt as if everyone was looking at us. But one or two of the other parents know, and the child he attacked was there and seemed quite unbothered when ds took his food and went and sat down next to him. I've found out about a brilliant playscheme which we can use for a week or two in the summer holidays, and am wondering when/if I might go to one of the local autism group meetings. I'm now worrying about how ds's older sister, nearly 7, will be affected over the years - it's not easy being the eldest of 4 anyway, and my Mum keeps telling me I'm much too hard on her.

Hi Eulalia and jmb. You're both doing brilliantly you know and you WILL adjust to this. It must be very very hard when you first write or say "my child has autism" no matter how prepared you are. But my boss was telling me the other day that she'd seen a study which showed that one of the best indicators of how a family will cope with a child with special needs is how they coped before the child with special needs came along or was diagnosed. And that doesn't surprise me one little bit, having now met many many families who have children with disabilities/special needs, especially autistic spectrum disorder. My impression from reading your posts over a long time now, Eulalia, is that your parenting and coping skills, your thoughtfulness and intelligence regarding your children will go a long way in and of themselves to making the outcome for your son a very positive one. I'm sure that is true of you too, jmb.

A couple of practical points:
This may be obvious but if you do go the ID tag route Eulalia, might be worth thinking about whether it is safe to include your son's name. Personally I don't think I would. Some children with autism are a little more trusting than other kids of the same age- don't know if this is true of your son or not?- so it may not be a good idea to let potentially "unsafe" people know his name.

jmb- there are sibling projects about in many areas which might be a way of supporting your eldest. Might be worth seeing if you have a local branch of Young Carers, National Autistic Society, Contact a Family or KIDS as sometimes they run or may know of such projects.

Maryz, that's a great idea! On my sons' id cards, I just put: "mother" then my phone number and "father" then my husband's phone number -- also brief instructions on his medical needs. (Sorry to hijack...)

Jimjams (maryz and Eulalia, too!), I've been feeling bad that my sister hasn't gotten back to me yet, but she just found out that her 7 month old has a very mild form of cerebral palsy. So I don't have the heart to ask her about it again right now. BUT, if there's anything you need that only someone with a US mailing address and/or credit card can do, please let me know. I've got both and will be back in the US in June and July.. plus my mom can send me (or you) over anything delivered there.

No worried JJ- hope your sister is OK.

I ordered the kaufman cards direct anyway- they came through in a week. Most sites seem fine posting overseas, but thanks for the offer anyway.

As for the autism thing. It is hard. DH still doesn't like telling people, mainly because he thinks it gives people the wrong idea of ds1. So he thinks if he says something they will think ds1 is unaffectionate for example, when he's the total opposite.

I dod tend to tell people as his speech problems and behaviour make it obvious that something is "wrong" and I find it easier than having to say something in from of him. Also I find if i tell people in advacne they're pleasantly surprised when they meet him.

It does get easier, and you do develop a thick skin wrt the looks. I don't usually bother telling strangers btw- if they're rude enough to stare that's their problem.

jmb - you have 4 children under 7?! Do you have a lot of support in your area? I've found out that the support groups aren't running at the nearest centre. It's in the city (20 miles away). I hope to find something nearer home but maybe there aren't enough ASD people around. I got a leaflet and was surprised to see how much of the characterisitcs ds displays. I didn't know the spinning thing was a sign. Also he has to go a certain way home from my parents. I was with dh last week and we went the 'wrong' way home and he got very upset.

I used to take both swimming every week but was finding it hard going. Now I take dd every week alone and ds every second week with them together. That way dd gets to go as often as ds did at the same age. My mum sometimes comes along too.

I find ds seems to like sensual things like water and sand. He will play for hours in the sawdust in the part of the house we are renovating.

ScumyMummy - what a lovely compliment! That really touched me and cheered me up, thanks Good point about the ID tag. I had initially thought maybe a badge saying "if I am lost" with my phone no. so that it is seen by others. However I realise that you don't want to advertise the fact that your child is lost either ... difficult.

JJ - where does your son keep his cards? Thanks for the offer of help.

I've just told family and a few friends, Playgroup and the Committee members at his Under 5 Group who didn't even feel it necessary to tell all the mums. I feel a bit ambigious as so many people seem to know nothing about autism. A few have said "they can take drugs for that can't they?" I think they think it is some sort of attention deficit disorder. I think I may type up a little leaflet to hand out but only if it ever becomes an 'issue' if he is aggressive to another child for example. I feel to some extent that people should be educated as to 'different' people in society. On the one hand ds often act totally 'normal' but if he does something odd I do like to excuse him but don't want to label him and for him to become 'that autistic child' - I want him to be ds who just happens to be autistic.

eulalia, I have only just caught up with your news - just read the other thread and this one. I am very moved by your honesty. I know you were half expecting the news, but can see that hearing the news from the doctor is something you just can't take in your stride. I know I would cry and feel fearful of the future, thinking how to tell others, and want to make sure my son was seen as ds, not as autistic.

As scummymummy says, from reading your posts, I think you are very equipped to cope with this and will make the future work so well for your family. You are so good at asking the right questions, seeking information and evaluating it - this is one of your strengths.

In some ways I feel I have nearly been there with ds1 and ds2. They are both more lively than average. They are both difficult to teach. There is still that question mark hanging around. Ds1 is being watched by the SEN advisors at his nursery. DS2 has a behavour book and, though much improved, still has to sit apart from his classmates many times just so he can do his work.

No tests have ever shown them to be anything but normal in development, yet the way they used to run off when out... DS1 is extremely quick and can't be put in a pushchair (the thought of even attempting this now makes me laugh). At 2.5 he either overturned the pushchair while still in it or wriggled out of his straps. Don't know if this is reaassuring to you or not, but my apparently 'normal' boys are real runaways. My older ds did grow out of this trait. He really has calmed down in all areas.

It's been so interesting and, if I'm honest, a bit worrying for me to hear jimjams and you discussing how affectionate and sociable your sons can be. I did not know much about autism so fell into the trap of thinking that autistic spectrum children did not show much affection or interest in people. I just assumed that since my younget ds is very affectionate and has good social skills he must be 'normal'.

I hope you can get support you want. BTW I think you are very wise to restrict contact with your friend to emails at present. She sounds like she could easily hurt you right now through her ignorance. You know far more than her and I am sure you'll make that knowledge work for you.

Eulalia- you can get little cards to hand out from the NAS- they say "this child is not naughty" etc etc I haven't ever used one but I do have them in a bag. They may be more useful when ds1 is older.

I know what you mean about not wanting him to be "the autistic child". Sometimes I just say "oh he can't talk" these days- especially to the elderly- if you say autistic they hear "artistic" anyway and you get a commment about colouring in.

Tigermoth - it's a common misconception- the affectionate bit- in fact it threw me for a long time. DS1 is probably more affectionate than ds2 (who is so defintely not autistic it is unreal!) In fact all the autistic children I know well are affectionate. I think it ranks along with "what's his special skill" for the misconception stuff If anything ds1 is overaffecionate in that he'll happily give people he hardly knows a cuddle (the Ed psych almost passed out- don;t think she's had much hand on experience of children- and my GP said "hmmm well it's not usual to climb onto your dr's lap). FWIW btw I've been following your son's story and I wouldn't worry too much about him at this stage. Let the nursery do thier investigations if only to out your mind at rest. You sound as if underneath it all you think he's fine- and it's true that what the mother thinks is always right.

thanks for that, jimjams. I have learned so much from your postings.

A quick question to you all - are Autism, dyslexia and ADD/ADDH linked at all? My friend who I fell out with is dyslexic and claims that they are and is trying to tell me she understands how difficult things are.

Thanks.

Hmmmmm

well yes they are- often autistic children are dyslexic for example, and fish oils seem to help both. BUT it seems to me it't a bit like saying I understand how difficult it is to be blind because I'm short sited!

Bin this friend she seems to be causing too much grief. Actually I had a friend like this. When ds1 was referred as an emergency to the hospital as he had eczema herpeticum (was covered and infected everywhere except his feet) she suddenly started going on about her dd's "eczema" (dry patch of skin). And when I was talking about ds1's speech problems she started taking about how worried she was by dd as she couldn't say s or f properly. It just used to drive me insane-I can't bear competition anyway but when it comes to competition about conditions forget it! For some reason som people seem to want to be seen to be worse off- and actually seem to get jealous that you have something real to deal with. It s very odd and quite disturbing.

I very rarely see this friend now - I couldn't handle it. DH was glad I binned her as he said she just upset me too much. Unless you get something out of this friendship I would drop it or at least put it on hold.

Thanks jimjams - your analogy was wonderful and I stole it for my email reply. I know what you mean about competitiveness. Before I knew anything about ds she would bleat on about her dyslexia and about how different she was and that she is artistic - bleurgh! She is probably jealous because she knows that my ds will get special treatment. She is a case for Munchausen's if there ever was one. Sorry bad joke maybe.

Actually I quite enjoy our sparring as long as we can keep it to emails.

Thanks tigermoth. Your boys sound great kids and I guess it must be harder for you in some ways as you can't point to a definite 'cause' for their behaviour. I do wonder if nowadays we do worry about slightly deviant behaviour - maybe they are just a bit wild and why not, if you can't be like that when you are chidlren then when can you be? Keep us posted on them.

Oh almost forgot - ds ate some grated carrot yesterday - hasn't eaten carrot for about a year

yep maryz- been there- according to MIL there is nothing wrong with ds1 (oh so it's normal for a 4 year old to not be able to talk then!!!) And I should be putting his name down for the local public school! What???!!!

Hi all - I agree with everyone else - this friend clearly one to be kept at arm's length. Who said something about choosing our friends but unfortunately not our families? My parents IL also of the less than helpful variety Jimjams and Maryz (you don't want him to see an Ed Psyh, all they do is fill them full of DRUGS) - I just let it all wash over me.. And Eulalia, yes we do have 4 under 7 - see my posting on worst Mother Ever on Saturday for evidence of what a hash we make of it at times. One of the worst things about the last few months as we've realised something's 'wrong' with ds1 has been the lurking feeling that no's 3 and 4 might get a raw deal (perhaps we were just WRONG to be so gung-ho about having lots of children), as we feel so stretched all the time. At least now we have the 'signpost' we can get in some more help - there's a Sunday afternoon club that we might use, for instance - so we can get some calmer time with the others. But I would feel so bad about that too - where does the guilt end?

The guilt doesn't end. I feel guilty for not providing ds1 with enough therapy, then I feel guilty for not just letitng him chill and do what he wants. I feel guilty for not giving ds2 enough attention. I even feel guilty when I enjoy seeing ds2 do things that ds1 finds incredibly difficult. I feel guilty about getting excited because ds2 is starting to talk. I feel guilty for not giving ds2 vaccinations - although that guilt is getting less as I see the difference in his health to ds1's, and I would feel even more guilty if I gave them to him and he then got eczema or something worse. Nah it doesn't end. I just open a bottle of wine at the end of each day And then I feel guilty for drinking!

Eulalia have only just caught up on your latest update on your ds....I'm sorry the diagnosis was as you suspected and it must be a worrying time for you but it does really prove that our mother's instinct is so strong, that we really do know best, even though we doubt it all the time!!

I think getting to grips with the initial diagnosis is the hardest time, and spending days and days on the web searching for advice. I found it hard keeping my head above water during all my dd's hospital appointments when she was first diagnosed with her health problems, and I think it took me a few months to get over the shock that she has a chronic problem and isn't a perfect 'normal' baby. I also bored all my friends and family rigid my latest medical findings! Even now they never know whether to ask outright about her current condition or just keep quiet

Love to little Anna!!

Jimjams - wine? Gin is called 'Mummy Juice' in our family after ds1 once spotted some Gordons on the supermarket shelf and identified it very loudly. It would be nice to think that we could all graduate from guilt at some distant point, but I don't suppose we will, my mother is still at it.

Eulalia, he keeps his card in his pocket and knows to hand it to someone if he gets lost. I love Maryz 's idea of writing the phone number on his arm. I'm going to start doing that on my youngest son (20 months) who runs off constantly.

And seriously, feel free to ask for anything you might need in the US. (Probably better to email me at goochersmom at yahoo dot com -- I usually do a "last day" search here, so miss things sometimes.)

I love that jmb! Mummy juice- that's great. I think that's what I'll have to start calling the red wine!

I was searching the supermarket shelves for Rum one day. DS pipes up "What's Rum?".
I told him it was medecine for tired Mummies.

Man behind me down the aisle nearly wet himself larfing.

Hi Lil - nice to hear from you. Thanks for tracking me down. I am sorry I didn't know about your dd. I find it hard to keep up with all the threads. How is she getting on - walking yet?

jmb - you sound like you can cope and the fact that you recognise all your children's needs means you are attending to them. Must be a long day for you though!

JJ - how old is your ds - mine is a bit young yet to depend upon a card.

Dh's whisky is 'Daddy's special wine' and he got ds to say this

Oh and I noticed from another thread that it was your ds's birthday recently jimjams. Happy Belated Birthday. Did he have a cake?