Parties

[PagesOfABook]

DS has mild autism

So he has poor social skills and might sometimes get annoyed easily - not always. People wouldn't necessarily guess it is autism but might do so if they know anything about it. They might just think he's a bit unsociable compared to the others.

It's very difficult when he's invited to a party where parents are expected to drop the child and leave.

I'm never sure whether to say something. I don't want to say his diagnosis yet - as I'm not ready for that and not sure if I ever will be. Maybe sometime I'll be forced to explain his issues. I feel so nervous if I drop him. I wish I could be next to him to direct him back in to the group if he's in his own world etc.

[moosemama]

How old is he?

My ds is now 13 and has ASD.

I pretty much went to all parties with him when he was younger. I just asked, before accepting, if it would be ok to stay and explained that ds got anxious if I left him with people he didn't know well. It was then up to them whether or not they made up their minds I was a neurotic/helicopter parent.

They tended to be whole class parties anyway, for the most part. Which made it easier. As he got older he wasn't invited to as many parties anyway and those that he did, were with his best friend, whose Mum we eventually confided in about his diagnosis, but made sure she understood that it wasn't something we shared with everyone.

[moosemama]

zzzzz we didn't disclose ds' diagnosis widely in school, but that didn't mean we treated it like a shameful secret either. We spent a lot of time talking to him about Autism, what it is, what it means for him personally etc and making sure he was given plenty of time to talk about it and his feelings about it with us. He's very comfortable with his diagnosis, but having been badly bullied for just being 'different' didn't feel he wanted everyone to know so his bullies would then have something specific to pick on. We respected his choice.

As his parents, we were just careful who we did and didn't tell, partly due to ds' own feelings, but also based on knowledge of the parents of other children he went to school with and their attitudes. His best friend's mum and a few other people knew, but we wouldn't necessarily have disclosed to every parent that held a whole class party.

Ds was nearly 9 when he was diagnosed anyway and we felt it was his choice who he did and didn't want to disclose to. He took his time getting used the idea himself first, but then told his best friend and perhaps one other boy in his year.

He's 13 now and pretty open about it. There are people he chooses not to tell, but all his friends at school know and he's completely comfortable talking to anyone that asks about it.

[moosemama]

No, you shouldn't have to be careful, but like so many things in life, in some cases/situations, you do.

There is no shame about my ds' Autism, we chose not to tell other parents at our dcs' school, whom I had previously had stand up rows with over their vociferous disabilist views and constant assertions that pupils that had disabilities were 'taking away' from their own childrens' education in a multitude of ridiculously imaginative ways. At the time, having just gone through the fight to get him dxd, then the fight to get him statemented and the accompanying daily fights with school, I didn't have any fight left in me to stand up to those people, who actually, weren't likely to change their opinions no matter what I said anyway and my focus needed to be ds and making sure he was comfortable with it himself.

I also respected my son's feelings that, having had the living daylights beaten out of him on a regular basis for just being a bit different and having finally managed to get the perpetrators dealt with, he wasn't about to be giving them or any other bully for that matter, even half an excuse to start up again. Wider disclosure, in a small village such as ours, would have inevitably have led to his bullies finding out whether we wanted them to or not. Once you disclose, you can't take it back and you can't control who then has that information. It's not right that he felt he needed to keep things to himself in order to feel safe, but that's how it was. He's not ashamed of having Autism, but he's well aware that there are good and bad people out there and sometimes it's best to just stay under the radar, not purely relating to his dx, but in general.

Ds chose not to tell people at first, because he was still processing his dx and learning about what having autism meant for him personally. Now he is older and has had more time to read/talk/think about it, he is more comfortable with disclosure and the inevitable conversations that this usually brings. In fact I don't think there is anyone that doesn't know any more.

[moosemama]

Sounds very familiar Mrbrowncanmoo. Ds' school insisted it was all in my head right through the infants, then suddenly called me in the summer before he moved into year 3 and said they thought I was right, but as it would be the juniors' remit come September, they would leave it to them.

We started to think ASD when he went into nursery and I realised how different he was to his peers. Obviously we'd noticed things before (he had his own language and was obsessive about the Argos catalogue vacuum cleaners and washing machines - for starters) but with him being our first dc, didn't know what was and wasn't typical developmentally. Most people just complimented us on having such an intelligent, articulate lad, as it wasn't and still isn't, apparent immediately that he has ASD, unless you know what to look for.

He spoke and walked early, had a massively advanced vocabulary and seemed to meet his milestones, so didn't raise any red flags with health visitors etc, but then when he failed his hearing test and they just put it down to him being tired, whereas we knew it was because he simply wasn't interested in the person making the noises, if it wasn't on his agenda he wouldn't respond - that was just the way he was. Now I would see that as a red-flag, but back then I just thought he was a bit stubborn and independent. He would also happily go to/go off with anyone without so much as looking back at myself and dh - I was told at the time this was because he was securely attached - it wasn't.

In nursery he just couldn't interact typically with his peers. He was convinced one particular boy was his best friend, but the lad concerned didn't even know who ds was. He liked the routine of the nursery schedule, but couldn't cope with dress-up days, inset days etc and things like the nativity were really hard for him to handle. He went from being an easy child to angry and agitated at home and started having meltdowns, but when we raised it they blamed the birth of his brother - which was a year earlier.

By reception he was isolated at playtime, spending each break sat on a bench on his own. Then in Y1 he butted heads with his teacher over things that he felt were black and white and refused to back down when he thought she was wrong. She then spoke to me about him and said she was shocked, from speaking to me and seeing how I interacted with him (when helping out in class one day a week) to see that I wasn't an over-liberal parent that let him get away with doing whatever he wanted, but had strict rules in place and made sure he knew his boundaries. She said she honestly thought he must be completely indulged because he spoke to adults as equals and expected them to interact with him on the same level. She wouldn't be drawn on whether or not there was a real issue though and when we suggested ASD we were told we were talking nonsense.

For Y2 he had the head of KS1 for his teacher and she hinted a few times that she felt there was something going on, but refused to be drawn further until the end of the summer term and despite repeated requests for a meeting with the SENCo nothing ever happened.

He basically went into Y3 (different building, different daily schedule/routine, loss of a playtime, less play-more focussed work) his teacher went on long-term sick and just started to implode. He became physically ill with migraines and digestive issues, stopped sleeping and had horrendous meltdowns at home every evening. Essentially he was having a breakdown. I ended up calling the Educational Psychology's emergency/crisis line and sobbed down the phone to them, they came out the following week to see him in school and almost straight away suggested ASD. He was 7 then and got his diagnosis when he was a couple of months off 9, but in the meantime the ASD outreach team and Ed Psychs started working with him and advising the school and things settled a little, so he could at least cope with being at school.

He's 13 now and doing really well. He's really matured in the last 12 months and is finally happy at school, since his bully was excluded last summer. He is still hopelessly disorganised and needs a lot of help with organisation/planning, homework etc, but we have far fewer meltdowns and he is generally calmer and more able to cope with his emotions (we've done lots and lots of work around emotional literacy). He's come into his own at secondary, because he's a bit of a computer whizz and of course that's socially acceptable/desirable at this age, so he has both SEN and NT friends in his group as a result, because they all come to him for advice/info re gaming.

When I was where you are now, I couldn't see forwards. It all felt really big and scary and I didn't know where we would end up, but I have learned to just put one foot in front of the other, deal with what needs doing now and accept that things will come together along the way - there really is no deadline or massive rush to have him fully educated and ready to work by the age of 21. Currently we're looking at GCSE options, which of course leads to A Level decisions and career choices and instead of panicking, dh and I just think we'll do what feels right for him at the time and help him get where he wants and needs to be, even if that might take a lot longer and a more circuitous route for him that it would for someone the same age but NT.

MNSN is a fantastic place to get help, advice and support. I'd never have got this far without it.

Have you popped your head around The Goose and Carrot pub thread over on SN Chat? It's a great place for getting general support and sharing either successes/achievements that other parents might not get/appreciate or equally having a good old rant and letting out all your frustration among people that understand what it feels like and can offer virtual wine and cake. You don't have to keep up with the thread, just dip in and out as you feel you need/want to. It might sometimes feel like we all know each other over there, but there's new people coming in and out all the time and it really is open to all.

[moosemama]

You are way ahead of me. I was naive enough to think that the school would be concerned if there was genuinely a problem and left it too late to start the assessment process. Hopefully that means your ds will get the support he needs well before my ds did and won't go through what he did.

Ds can fake eye contact and is very subtle about not actually looking at people. He learned very early on to look at the end of people's noses to approximate it, so the school failed to notice he didn't actually make any. The EP picked it up on her first visit to the school though. He now has pretty good or at least realistic, iyswim, eye contact - as long as he is comfortable with and trusts you.

I used (and actually still use) the Attwood book a lot when dealing with school - it was instrumental in me finally getting them to deal with the bullying. Iirc, I also quoted it in some paperwork while we were going through the statementing process.

I'm afraid Reception year was pretty much a wash out for ds. He came out of it unable to read very well, hold his pencil properly and really struggling socially, although this was partly down to a dreadful teacher that let all the pupils down that year. He made progress early on in year 1 though and ended up as the school's youngest ever free reader, having finished their reading scheme by halfway through year 2. He also made a lovely, lovely friend in year 1, who really facilitated his social inclusion from then on and remained his best friend right through primary. Despite going to different secondaries, they are still friends and see each other regularly.

[moosemama]

Ds was the same at your ds' age and the fact he's gaining awareness is a good sign.

Fingers crossed he finds a friend as good as ds1's soon.