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Original poster

DS1 won't go into friend's house

82 replies

Jimjams · 31/01/2004 16:51

I have a very good friend with an autistic dd. She's one of 2 people that I can visit and be at ease with, and in the holidays we see each other a lot. And to be honest we keep each other sane.

DS1 has been scared of her upstairs for a while now- we have no idea why. Now he won't go in her house. He has done this before in another friend's house when we lived in London (again got scared of her upstiars then refused to go to her house) but we moved before it was resolved.

I am so pissed off. I have a feeling we won't get him back inside the house for another 8 or 9 months at least (judging by the previous seaside fiasco). Ds2 loves playing with her ds as well so he's going to miss out as well. In fact we all are, and if I am stuck in the house with the pair of them for the entire school holidays I think I will end up mad.

There's no way we can meet elsewhere as we both need one adult per child. Anything less isn't safe.

Any ideas? This has totally thrown me. Final straw really - had a crap couple of weeks.

I hate f autism.

OP posts:

Blu · 02/02/2004 11:21

Just to say that in my Kingdon of Blu's Wishes Come True I'm sending you a conceptual day at a spa, or whatever your own idea of complete rejuvenation is. It's hard enough listening to you gearing yourself up to another big behaviour management project, and I wish Magic Language Spray was a possibility.

jmb1964 · 02/02/2004 23:07

Jimjams - you're sounding more positive already, I'm so glad! Just when you think you're getting on top of things something else comes along, what strength you have to bounce back all the time. You're an inspiration to us all. Hope the brief visits and work on 'choice' will help - you know we're all right behind you (but not heading for the hoover or the washing machine, honest ..)

Original poster

Jimjams · 03/02/2004 09:57

Wasn't very positive yesterday afternoon. He had a MAJOR meltdown -0 biggest I've ever seen at home - becuase I thought he needed the toilet and he was watching the washing machine (he really needs to understnad choice quickly!)

Feeling more positive this morning- had a chat with the school SENCO- she's really very good. And positive about us introducing ABA or something similar at home.

OP posts:

Original poster

Jimjams · 17/02/2004 16:09

Change the title.

DS1 now won't go into any slightly unfamiliar house or room. Went to see the OT today and had to bail out as he was just screaming (like how many months had we waited for that? He'd been in the same room last time we went there and was fine). Then went to see a friend (different friend from the one whose house he has already rejected), and he just screamed so we had to leave.

F F F* If he decides he's not entering my parent's house (going there later) then I'm abadonning the kids and leaving the country.

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Blu · 17/02/2004 16:18

Oh gawd Jimjams, this sounds really difficult, I wonder what is behind it. WISH there was a little window into his mind so you could see in an instant. Fingers crossed for you, but feel full of foreboding cos he does seem to be gathering speed on this one....oh dear...

Jimjams, I know absolutely NOTHING about autism, and have no basis from which to offer any sensible thoughts, but I did notice on a lovely pic you posted of your DS that he wears those coloured glasses. As kids eyes grow, do you think that his eyes might have changed a bit, and his prescription might need updating? Maybe he is seeing familiar spaces as if they have a different perspective or colour from what he is used to and it is unnerving him????
Sorry if this is silly.

hmb · 17/02/2004 16:22

Oh hells bells!

How is he outside? Is this a 'confinement' issue? Is it linked to him wanting to do something else and not being able to express it, so refusing to enter a room is his only protest? Can he chose to do something, but in a place of your choice, or is that just too confusing to put across.

Davros · 17/02/2004 16:55

Oh buggery b#ll#cks Jimjams!!! Will have to give this one some thought. Blu's idea sounds interesting. Maybe he's indulging in that old cliche, "testing boundaries" but in an atypical way but you can't plough on willynilly in case its more complex. Will the OT come to visit you at home now? Mine did when she saw how tricky it was to get him to sit still for 2 seconds and with babe in arms (you may borrow baby if it will help )

jmb1964 · 17/02/2004 17:49

Dear oh dear... hope it's only a bad phase. Make sure you get some time to yourself if you can?

tamum · 17/02/2004 17:57

Oh god, how utterly awful. It's not because it's half-term and his routine is out, by any chance? I'm so sorry, as if you didn't have enough on your plate. Hugs to you both.

Hi jmb!

aloha · 17/02/2004 22:07

Oh dear, poor you. Can he use his pecs to tell you ANYTHING about his feelings? Or a social story? Poor him too, he's obviously upset.

mumshome · 17/02/2004 23:05

My ds 5yrs (aspergers) has a problem with the upstairs of my parents house, i wouldn't mind but we go there nearly every day.I thing he has ventured up there with grandad probably once or twice, in his whole life, and found the experience very nerving.
The thing is his speech is fantastic, like a litle profesor (5 going on 50), but we are just as in the dark to why as you are.He can't tell us why, just says don't want to!, and like your ds will freak out big time if try and make him.
I personally think it is a sensory issue, but what kind i don't know.
We had an experience recently, we were attending a routine appointment at child dev clinic, where he has been several times.We entered the waiting room and he had a complete meltdown because of scary lights,no one could get any sence out of him, he just kept asking staff there to go and check the rooms for scary lights, he could not explain this any further,he even made me and the pead con cover his eyes as we walked to the consulting room.When we arived he calmed down and said all matter of factoh it's ok the scary light isn't here any more.
Days later he could still not explain this to me , all i can put it down to is maybe there was a flickering light bulb on a previous visit.
I know this doesn't help you one bit but at least you know you are not alone in these baffling experiences.

Original poster

Jimjams · 18/02/2004 08:11

It's fear. It's exactly the same as the whole beach/grass thing we had a couple of years ago. I tell him where we're going, he's fine, we arrive, he skips up the garden path, in through the door, where he freezes, grabs my arm and starts to try and pull me out. usually he's shaking as well. Trouble is I have no idea what is frightening him.

He hates being stuck at home- loathes it- but now we can't go anywhere. I can't take him to the park or even to the paper shop anymore as he runs away (that's a game, but he doesn't understand that if he runs off I have no idea where he is, he also has zero road sense). Aaaaaaggggh It's ridiculous we were runing out of milk yesterday and I couldn't even pop out to buy a pint.

Anyway the good news is that he has a place in nursery all day today- so he'll be happy. Now I just have to somehow pick ds2 up at lunch time without him noticing!

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aloha · 18/02/2004 08:26

Does he enjoy the nursery? Could you increase the hours a bit just to give you a chance to buy some milk?! (I know he's 'supposed' to be at school by now). He did eventually get over his beach thing, didn't he?

maryz · 18/02/2004 09:02

This reply has been deleted

Message withdrawn at poster's request.

Original poster

Jimjams · 18/02/2004 09:37

yeah the beach thing was around for about 8 months and then just went overnight. We used to a beach near here ever few weeks and try him. As soon as he screamed we would back off and do a woodland walk instead. One day he arrived and went happily onto the beach as if nothing had ever happened. Npow he loves beaches. Very strange.

he's still at nursery for several sessions a week anyway. The problem for them is that their funding has been cut so they don't get one to one funding that covers the time he's there anyway. He's very hard work for them if he hasn't got a helper with him, and if they have lots of little ones in as well then to be honest they can't manage him. This morning is an extra session- and I am very grateful. He's in tomorrow afternoon and all Friday as well so we'll make it to the end of this week!

By easter we should have the home programme up and running so hopefully things will get easier soon.

I just need to make some money now to pay for the home programme!

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Eulalia · 18/02/2004 18:22

Come to this a bit late and sorry to hear of your probs jimjams. Just to add regarding the issue of choice - my ds still finds this a hard concept even though he is quite verbal now. It is better to just tell him what to do quite often as he feels more comfortable with that, so eg you could say "try going to the toilet now" rather than making it a question about needing/not needing. For us getting him to understand ds stopping something is more about understanding the concept of time, ie "stop doing this now and you can come back to this later". He seems to have really grasped the concept of later recently which has helped. I think the Nursery has helped a lot with this as they obviously must actually go back to the original task thus reinforncing the message that stopping something doesn;t mean he stops it forever.

The language thing is a problem with the road safety problem too as saying "don't run into the road" is meaningless as he just hears me talking about something to do with the road (I think this is why autistic kids seem naughty but words like 'don't' can be totally ignored)... anyway wittering on...

Regarding the house - I agree with others that talking about the stairs is just making things worse. when ds had a problem with something like this eg going a certain direction I would just leave it for awhile then we would do something completely different leading up to the point where he had to go that way and the differnet situation meant that he had forgotten the trigger.

Anyway hope things improve soon.

Original poster

Jimjams · 19/02/2004 12:14

think I've worked out why he's so completely on planet autism at the moment (no attention, doing that manic laugh, flicking fingers in front of his eyes, not responding to name blah blah) NO FISH OILS for 6 weeks. they've been on order from nutricentre for that length of time (who are officially crap they've messed up orders of mine in the past). Anyway I've cancelled the order and placed the order in the States (we've always done this in the past and they've taken 5 days to reach us). In the meantime I'm off to purchase emergency EyeQ

OP posts:

tamum · 19/02/2004 12:23

Jimjams, it's a hard way to learn, but that's pretty bloody convincing evidence for fish oils, isn't it? Hope you get the emergency supplies quickly.

Original poster

Jimjams · 19/02/2004 15:14

MIL is down tomorrow (she of "there's nothing wrong with him" mode) so she may get a shock. especially as he's taken to weeing and pooing on any towels left lying around !!!! (seriously! just when he's toilet trained he goes all feral on me!)

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Blu · 19/02/2004 15:22

Something for you to laugh about when she leaves her towel in the bathroom, then, tee hee!

Fingers tightly crossed for the speedy effect of fish oils, JimJams.

Original poster

Jimjams · 08/03/2004 16:36

ok i want to cry. Just went round to friend's house and he's worse. full blown meltdown at the front door. He also ran into the road on the way there (middle of the road before I caught up with him). what a great day for the school to decide they couldn't have him in.

What the f* am I going to do during school holidays.

OP posts:

dinosaur · 08/03/2004 16:43

Oh jimjams, so sorry you are having to deal with all this s*

Davros · 08/03/2004 18:42

Oh Jimjams, sorry to hear this Hopefully you will be some way into your ABA and that might help. Can you find someone who would help out during holidays? I know its not cheap though.

KPB · 08/03/2004 19:14

Not sure if this is any help but have you spoken to social services about help? They are going to pay for dd to go to a club in the summer holidays for one or two days a week - just to give me a little break. We have also been offered the link service. This is where your child is introduced to someone that takes them out for a couple of hours a week, I wasn't sure TBH, but it may be worth looking into. Hope the rest of your week gets better!!

Original poster

Jimjams · 08/03/2004 19:22

Davros I was thinking of getting some volunteers in for the holidays. The OT was telling me that she knows a family who used OT students. Unless I can start earning loads of money in which case we can afford more help.

I've thought about asking social services but don't want to. Mainly because I've just watched a friend in a very similar postion to me go through a care assessment and they've been less than helpful. She's only getting help when her hubby is away (he goes to sea) so the rest of the time- zilch- and I can't see me getting anything as my position is like hers when her dh is around. I also had a look at the care assessment forms and I don't want ss poking their nose in about vaccinations etc I think I'll just have to go quietly insane.

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