**updated post 34** - Am I being too "doom and gloom" - autistic child

HurdyGurdy

Hi again

I've had a long chat with the child's mum today, and honestly - I don't know if I feel any better about him coming or not. I asked how aware he is of what's happening next week. She said she doesn't think he understands, although she'd tried talking to him about it.

She said that the reason she wants him to come down to stay with us is because after the relationship between my son and her ended, it was uncomfortable for her having him stay in her house when he went to visit the little boy, although she accepted that it would be prohibitively expensive for him to stay in a hotel. I think, reading between the lines, my son was hoping for a reconciliation, which she didn't want - she now has a new partner - and was quite focussed on her, rather than the little one.

She said that the boy has come on a lot in terms of communication and "will probably" interact with us when he's with us. He can talk "much better, but you have to really know him to understand what he's saying" - which of course, we don't. He uses PEC communication system, which I will order from Amazon this evening, so that we can get used to it before he comes next week.

She said he loves his daddy, and gets very excited when she says they are going to Skype him. The last time my son went to visit, he took the little one into town on the bus, which they both enjoyed. Also when she was at the hairdressers, my son was looking after the little one and when he took him into the hairdressers to see how she was getting on, the little one didn't want to know her - it was all about daddy.

Which is all well and good, but that is when he is on "home turf" and seeing mummy later.

She confirmed that he's never been on a train and that "it probably won't go well" but "then again, it might". He doesn't like loud noises and will hide his face - or have a meltdown. My son has never witnessed a meltdown, and I am quite worried about how he will manage this if it should happen.

She feels that it is better for him to come for five or six days because he's used to seeing daddy for a week at a time and that is something that he's used to. Again though - this is on home territory and with her being there. She described herself as "his world"

In terms of his schooling, she withdrew him because she felt the school didn't recognise his needs or his rights, despite having a specialist autism unit. She - and my son if he can get time of work to travel up there - is viewing a specialist school at the end of April in the hopes that he will be offered a place there.

His diagnosis is of ASD, not specifically autism, but she says he is high functioning.

She also said that if we feel that it's too much for the little one - or even if it's too much for my son - she will come and collect him, so I am a bit more reassured by that.

By that time, I'd been on the phone for an hour and I had to go and collect my granddaughter from school, so I didn't get round to asking about sleep patterns or eating habits. I will give her another call tomorrow to ask about those. I want us to be as prepared as possible.

I am on annual leave this week, but fortunately my manager has agreed that I can just work mornings next week (my working days start at 7am, so I will finish at 11am) so I will be around to support a bit more.

Thank you all again, for your replies. Just keep everything crossed for us.


ETA - my son is off work all week next week too, so he will be here for the little one. My daughter is doing a lot of training for her new job next week, so we will be having my granddaughter quite a lot as well. There is 9 months between them, so it will be nice for them to be able to form some kind of a bond, and hopefully play together, although the little boy doesn't interact with other kids very much. We'll see.

HurdyGurdy

Pollycat wrote: »

Then I think what the OP posted about the relationship between her son and grandson i.e. the child 'barely knows his dad' is quite misleading given the thread subject and the fact that she posted that at 10:00am yesterday.

Sorry for the confusion. When I said they barely know each other, I mean that there is no consistent weekly contact between them other than Skype. When my son does see the little one, it's been for a week at a time, in his own home, and with his mum there.

PasturesNew

My top tips are:
Always let him know exactly how the day will be going, well in advance, in a slow speech, leaving a big silence at the end so it sinks in. If something is to change then face him, at his level, with distance between you and explain what was going to happen and why that has now changed - and what the change is.

Never creep up behind him and speak, walk a big distance round him and be at the front, then wait until you can see he has noticed you before speaking.

Don't touch/grab/hug him suddenly without warning....

Let him pick his seat, it'll probably be a corner seat with a wall behind it, close to the window. Movement behind one is disconcerting. Make sure nobody else sits in his seat.

Keep noise quite low and lights too.... if you suddenly start screeching along with the radio at the top of your voice while moving about look behind the curtain where he'll be hiding

Don't ask "what do you want to eat?" - offer two choices "do you want a cheese sandwich, or a jam sandwich?". If neither seem to appeal, gently tease other options out one at a time....
Ditto when asking about anything - offer a specific limited choice, no open questions asking "what do you want..."

What you mustn't do is try to overwhelm him with anything ... let him "find his own pace" and be able to sit down and stare around blankly for awhile.... probably quite awhile.

Don't talk and move about/walk .... it's confusing. He's already in a strange place, not knowing what'll happen next.... so stand still and get down to his level, no closer than 3-4' away ... to speak to him... and speak slowly (not slowly as if he's thick, just clearly and not rushed).

Lavendyr

PasturesNew's advice is absolutely spot on. The most important thing is to set clear expectations upfront and stick to them completely - and if they do change, they need to be carefully explained so that he can understand.

The second most important thing is definitely the open/closed question point. Open questions can be overwhelming.

Pollycat

HurdyGurdy wrote: »

Sorry for the confusion. When I said they barely know each other, I mean that there is no consistent weekly contact between them other than Skype. When my son does see the little one, it's been for a week at a time, in his own home, and with his mum there.

Ah, I see.
It sounded like he had little or no contact with his Dad.

But even so, talking to somebody on a screen, with your Mum with you is very different to what is being forced upon you - and the child.

I hope it goes OK.

HurdyGurdy

Thank you for that advice. I will take that on board.

The food thing won't be an issue I don't think, although I will have a better idea after I speak to mum again.

But my son told me that the little one only eats chicken nuggets. Occasionally a Greggs sausage roll (not sure if it specifically has to be Greggs, or if any other sausage roll will do), and for breakfast he will either have a packet of crisps or maybe a piece of toast. Occasionally (very occasionally) he will eat some banana. But that's it.

I am a real stickler for children eating healthily, so this will be a real test for me, as I know there is no point in trying to deviate him from this

Detroit

The national autistic society has an advice helpline that may also be worth a call. Sorry can't link to it but you can Google.

HurdyGurdy

Thank you Detroit. You've reminded me that we have Autism Bedfordshire locally, so I will contact them. They may have some holiday groups going on that they will allow "strangers" to attend. And actually, if this next week is a success and the little one comes down more often, it will be useful for my son to be in touch with them for support.

Maysie

Just want to say you sound lovely trying to get everything in place for him as best you can. Can i suggest a den. bedspread over a table is quick and easy but a cheap pop up small tent is great too. If it all gets a bit much for him he can go and retreat. A lot of Autistic behaviours can be down to anxiety about the unknown and change. If you can keep the anxiety down the stress all round will be down. Letting him know what is going on in advance is a great idea.

For you son on the train does your grandson have noise cancelling headphones? Some kids really respond well with some as its less stimulation from other people strange noises etc. My son likes to hide behind sunglasses he does not like people looking at him. Fiddle toys like the tangle thingies might be good too. Putting a coat or something over his head might work if his visual cues suggest he is getting upset. Anything to bring down the visual stimuli. Train staff have been brilliant in my experience I have had a couple of problems when trains where they were cancelled and there was no seats. Once made aware they really helped me.

Just to add if you meet one autistic person you have met one autistic person. What works for one might not work for another. Some kids embrace changes for holidays and are excited others will struggle. Some autistic kids do cuddle some don't like it. If you knock into him like brush past it can trigger a flight of fight response yet a firm hands on the shoulder can be comforting. Wishing you all best together.

The food thing something I have found to be beneficial was a pick and mix type tea. Lots of little snacky bits on the table and let him choose what he wants. Although might be too overwhelming for some. Have his comfort food there too and he might just surprise you with something new. Iceland sell frozen greggs branded sausage rolls so you can make one quick and easy if that helps. They do have a really nice taste. oooooo and ask his mum about food touching. Trays with sections so they dont' touch are great.

PasturesNew

HurdyGurdy wrote: »

The food thing won't be an issue I don't think, although I will have a better idea after I speak to mum again.

But my son told me that the little one only eats chicken nuggets. Occasionally a Greggs sausage roll (not sure if it specifically has to be Greggs, or if any other sausage roll will do), and for breakfast he will either have a packet of crisps or maybe a piece of toast. Occasionally (very occasionally) he will eat some banana. But that's it.

I am a real stickler for children eating healthily, so this will be a real test for me, as I know there is no point in trying to deviate him from this

Food is a tricky and individual thing.... it's true that if you're on the spectrum then food brings new issues - fears, phobias as well as textural issues and even where things are placed on the plate.

Plain/simple food is best, broken down into its parts, so there's less chance there's anything in there that puts them off.

There is a line to be trodden between seemingly "letting kids eat what they like/wrong foods" and persuading him to try new things.

The thing with trying new things is that people make such a big deal out of it that it's frightening. Just make things available and don't mention whether they're trying it, or not .... it's there, you can look at it and think for some time....

I "get put off" trying some things as others seem so "pushy" and they loom at you in anticipation and expectation that you're going to now try it and love it ..... it doesn't work like that. All that expectation's too much (causes a meltdown) and all that looming's just scarey (causes a meltdown).... your way/preferences are not "right" they're your choices, so don't be adamant about stuff.