DS1 won't go into friend's house

[Jimjams]

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.

Oh dear. So sorry things aren't picking up, Jimjams. Would it be worth looking at playschemes for the holidays? Are there any in your area? They can be so great when they're good. Really hope things feel a bit better soon.

No chance of a playscheme. He couldn't go without an individual one to one

Aren't there any special needs playschemes offering 1-1?

Or mainstream who can get a support worker? Sometimes LSAs want the holiday work and can do it.... you said his LSA was good?

His LSA is good but she has a baby so I wouldn't want to ask- also the problem of who pays for it. As the LEA are very keen on reminding me "we're not a babysitting service" (this was said becuase we wanted full time support for him at nursery- and he's not even doing the equivalent of a full school week yet- bastards- the LEA that is). I'm not that happy about leaving him with just anyone as lots of people just wouldn't cope (and I worry about his safety then).

There are some playschemes that have been set up for SN kids (by parents) but they're not very suitable for autistic children- and parents have to accompany the child anyway- which would mean that ds2 would just get dumped in the playscheme- and I do think he's a bit little.

Hmm. Might be worth contacting SS just to ask about playschemes. There really should be something that isn't for the whole family. Quiet insanity MUST be prevented at all costs as I like you being your usual loud and insane self.

In our area they do run playschemes especially for children with autism. My dd will probably go to the one week run by afasic (speech and language) where they do S&L activities.
Jimjams do you have an Inclusion Co-ordinator in your area? We have one which is run by the council. her basic job (as in the title) is that she makes sure that SN children can access services in the community. Eg. dd is going to a SN gymnastics that dd can also attend. She also holds lists of playschemes for SN children for the summer. Another good person for this type of thing is Portage, they may recommend something!
One last thing, dd attended a playscheme last year that was recommended as being good for children with SN (which they were,they were brilliant) and I remember a little girl had 1:1 2 days a week! Hope this helps

Jimjams, totally understand your reservations about playschemes. I think you can access these without having to get Soc Svs in or have an assessment. HOWEVER, we were offered a couple of days during the holidays the year before last and I just couldn't leave my son there. It would take someone several days at least to understand him and I, or someone who knows him (and who I therefore have to pay) would have to direct/train them by which time our allocation would be finished. I couldn't leave him anywhere if he couldn't be understood and I also worry a lot about saftey. Its not just a question of being over protective, much more a case of being realistic. You know I finally had a crack at Soc Svs myself this year and it was worth it and is a "work in progress" but I put it off for quite a few years, its hard work and it another set of people who come and look you over and make judgements
If you can get volunteers that would be great. Of course you can "sell" it to them that THEY will be getting something out of it too - fantastic experience AND "doing good". Presumably you can lure them in with the SLT, BIBIC and ABA stuff.....Good luck!

Davros has explained it better than me- all my reservations as well. I've found the playschemes that are run are really for verbal children who can follow instructions (more along the Aspie line I guess). I just don't think they would be safe with my son. He also wouldn't be able to do any of the acitivies so there's not much point! Also they do stupid things- I took him to one SN one and the kids had to queue for donkey rides (so no use to us he can't queue- needed a ticket system. Also the helpers were clueless about autism. I had ds2 with me as well and it was a total nightmare. We lasted 2 minutes- slightly longer than my friend with an autistic dd who couldn't get inside the door). Really the most useful thing would be direct payments so I could pay someone to help us out a but, but I really really really don't want anything to do with SS, and I think the chances of them giving us anything are about 5%.

Davros I'm keen to get the volunteers doing ABA and BIBIC. I'll go for something in the summer- this easter we're away anyway and he can still go to nursery for 3 sessions a week. I think I may be able to get a few hours.

Anyway I'm a 1/3 of the way through my DLA renewal and my hand is about to fall off.

How many minutes? All BLOODY day every BLOODY day bastards! Also trying to get mobility. bleurgh.

Jimjams, I am so sorry you are having such a bad time over this.

My SIL used to give respite care to two autistic brothers. She would have them for a weekend every month....day and night for the whole weekend. I realise that this isn't what yuo are looking for, but I will ask her how this was funded and get back to you. Obviously that had to build it up at first.

Hugs

I totally understand what you mean. My dd has understanding problems but does have a lot of speech so it is slightly different. I am very wary about who I leave dd with because of similar reasons and i don't think anyone can look after our kids like we do. I remember the 1st day dd went to the summergroup, I felt physically sick. gave them a rundown of where I would be home no and mobile. I just kept looking at the phone thinking god, why aren't they phoning me? Turned out fine in the end but I was very worried. I really hope that you manage to get something sorted. the little girl at the summerschool last year had autism and the lady supporting her I think was paid by the LEA.
One last thing, when I spoke to the lady that ran the summergroup I explained my concerns and she said that as it was playing and no structure their wasn't the anxiety to "conform" - if that makes sense!

Jimjams, can't think of a single thing to say really, just my heartfelt sympathies.
xx

Jimjams, like tamum, nothing to say that would be any use - just massive (useless ) (((hugs))) and sympathy. It's just cr*p, isn't it?

Thanks hmb- I know social services do fund arrangements like that. I would be interested to hear if it was through them. TBH though at the moment we don't really need that- I just need something for him to do during the day. I think I'm going to try and get volunteers (or scrape together some more money- although we are getting to the stage where our debts are getting ridiculous so I don't think thats very likely) to do ABA and BIBIC with him at home. At least that ways he's doing something useful. The trouble with a playscheme is that he can't really play- he just wanders so unless the person there knows what they are doing its a waste of time really.

still the good news is school haven't rung to cancel yet. not getting him dressed until the last minute but hopefully he'll have school today......

Jimjams, I'm really sorry you are having to endure all this atm. I don't know what so say, except that.
Re the fish oils though, I ordered some throught the website www.healthyandessential.co.uk - esp for kids, high strength, strawberry flavour, purified etc etc and they arrived at my door the very next day. I was very impressed with the service. Maybe worth a look?

Jimjams, sorry you are having such a difficult time. We used to get respite care every other week from a local charity - I think we were very lucky to get this as I don't think dd2 really met the criteria and it has since been withdrawn. However, I've now been given a leaflet about another local organisation called CareShare. Are there groups like this in your area? Might be worth a try although they may well not have the sort of expertise with autism that you need.

Also we did not have to be referred by social services!

There was an advert in our local newspaper a few weeks ago for volunteers to help with an autistic child. It said it was for an intensive program so I'm guessing it was ABA or something similar. They advertised in the employment section. Obviously I don't know what kind of a response they got but it could be worth trying.

I do totally understand your reservations, jimjams, but I still think it might be worth having a look for playschemes. A good SN playscheme should be totally prepared for an autistic child who wanders and doesn't find play attractive/easy. I do know there are some shite playschemes out there- as you and Davros attest- but the good ones really are excellent, if few and far between. Could you ask the autism outreach team if they know of anything that would suit ds? Anyway, I won't mention it again, honest.
p.s. hope ds got into school today.

funnily enough I was sent an invitation to a playscheme today. I know its not suitable though and I would have to accompany him

I rang up my lifelong best friend today and asked whether we could try a visit to her house. So after school we went round there for lunch. At first I thought we wouldn't get ds1 into the house, he was very nervous and gripping onto my hand very tightly. He stayed clutching me for about 20 minutes and kept looking at the front door. He gradually relaxed and after about an hour was fine- helped himself to the toilet and then was leaping about on my friend's bed without any trousers on (can't dress himself). He ate lunch there as well. So all in all a good day.

Had a chat to my other friend with the scary house and we think it may be a lightshade that he's scared off. That went up a few months ago which kind of coincides with when he started to get scared of her house.

Glad things were a bit better today jimjams, nothing I can say to help except that your ds seems to try really hard to get over his fears. Hopefully it is just the lightshade.

Excellent news Jimjams, definite progress (BTW, I'm meeting the Pfeiffer Clinic friend today).

I'm not claiming to speak for Jimjams but I think I understand the issues with playschemes. When our son was younger, we had plenty of interesting and constructive things we wanted to do with him AT HOME (we still do although they've developed). But we couldn't do it all ourselves and we needed other people to help and to keep things fresh. We wanted him to learn to function better at home and felt that was very important. Jimjams has her BIBIC program and is starting some ABA so I reckon wants to get stuck into this at home. The playschemes that I looked at that were not autism-specific, IMHO, had too much creative and interactive stuff which my son would just perceive as down time, therefore potentially boring, therefore potentially troublesome! He gets lots of "leisure" activities but they're mostly physical as he has such a problem with play. I started taking him to a Saturday morning club about 6 months ago but this is run by an autism charity. I leave him there for 3 hours and feel happy that they know what they are doing and that he is enjoying it and getting something out of it (trips out, drama, sensory room etc). Obviously independence is important but we have to be realistic too, he's not going to go to the shops or on the tube on his own . We've always made sure he can do things with other people, not just his parents, but they DO need to know him a bit and getting to know him a bit is a lot harder and takes longer. Of course, if you've got another child to look after and entertain over the holidays maybe a playscheme would be a godsend but IMHO, for an autistic child, it would have to be very good, 1:1 at least at first and not too unstructured.

davros - you've said it perfectly again I really want to do ABA during the holidays. Once he is in school full tiem- rather than part time school and nursery then I think I'll try to put together an after school team of students and try to get them to do something during holidays. Hopefully by then I'll be earning some money to pay for it. otherwise I feel holidays are just going to be a wasted opportunity. I can't do the ABA myself with him as ds2 steams in.

Intersting what you were saying about people needing to get to know the child. DS1 has had the same NHS therapist for a year now and she recently visited the school with his private therapist (who he has had since September). DS1 sat there grinning and then threw himself at the private therapist for a cuddle- apparently he was really pleased to see her and was really hugging her. Apparently the NHS therapist was stunned and couldn't believe he'd done that. And that behaviour isn't particularly unusual for him- but he has to build up a relationship with the person- which he won;t do if the person sees him for half an hour every 6 weeks. It's so obvious. But also shows that half the "pros" working with our kids know nothing about them and make all sorts of incorrect assumptions. Not really relevant to this I guess.

Last year some money was provided to allow autistic children to attend local playschemes with one to ones. My friend tried it with her dd. The one to one provided was a school leaver with no experience of autism. There was no way it was going to work (friend's dd is very similar in specturm terms to my son) so that lasted 10 minutes.

The autism unit runs occasional playdays, where you can lave your child (and sibling) and go and get a cup of coffee. I have done that before as I know they are safe- and do understnad autism. But the time is a break for me- it doesn't provide anything useful for my son as it is totally unstructured and there are no one to ones (there are helpers but probably a 1:3 ratio)

Actually, that reminds me that I got in touch with a local charity that gets medical students from UCL/Royal Free who volunteer to befriend local disabled children. I was sent two very nice, clever and kind students. However, after a few weeks, we had to agree that it wasn't going to work because it would have taken them months and months to be able to take him anywhere or do anything with him without being accompanied by an "expert" (me!). I wanted them to take him swimming, out for a milshake etc while I was with the baby, instead I've got someone to look after the baby who I pay with Soc Svs direct payments while I take my son swimming etc. One of the students had befriended a child with aspergers before so had a little experience but I think they were surprised at how "unusual" his behaviour can be and how difficult it was to get to know him. He's very friendly for an autistic child but you either have to be instantly and intrinsically a reinforcing person or very good at communication and interaction strategies......oh and very patient!