2 step children with autism

[hereiamagain2]

Hi, this weekend my partners 2 boys with autism came to stay for the weekend for the first time.

They have quite severe autism, with severely delayed speech, communication, attention, understanding etc.

One has obsessional repetitive behaviours and i would like to know how to move him on from these.

For example he will be become obsessed with a certain DVD, he doesnt actually want to watch it, but will just keep fast forwarding and rewinding the DVD. This is all he wants to do all day. If you stop him, he will scream for hours, throw himself around, hit everyone etc and just keep repeating the name of the DVD.

I have a son with autism myself and have tried distraction, but its quite difficult as he is not interested in anything else.

Any advice or suggestions very welcome.

I know this sounds a bit harsh but it is obviously not the right way for the children to get used to seeing their father. It must also be very upsetting for them to be put in this position. There is clearly a lot of other stuff going on between your dp and his expartner that must be very difficult to sort out. Maybe your dp will need to say no overnights at the moment but maybe offer to spend some evenings helping out in her home so he can get used to their routine and give her some respite?? I suppose you have to be the voice of reason in a way by saying yes I understand how you feel but this won't work and won't be good for any of the children.

Cansu, from the 3 times dp did visit they dont appear to have any routine (although i understand 3 times isnt that many visits) Dp is actually arranging as many visits as he can, including the forthcoming school holidays. My voice wouldnt be considered a voice of reason, if i were to say that. As far as dp is concerned the children love coming here etc, etc.

I can see why you are desparate to put in some structure but I am not sure it will work unless you have dp's children very regularly. It will also as you no doubt know be worse before it gets better. I would like you be concerned about the effect on my ds while this is going on. Are the children likely to be aggressive twoards each other? My ds will hit out if others cry, make noise or even if they don't follow the same rules as him. This in turn winds up my dd who doesn't follow rules and is a very independent minded little darling. Can't your dp see it's impossible under the current arrangements? Is moving somewhere bigger so cilodren could have own space an option?

What do you mean by no routine?

DS1 has a lose routine but we don't impost strict routines on him at home as he would find that difficult.

I think there are times when it's appropriate to 'leave them to it.' And there are times when it is not. The problem is that in stopping them from being left to it it is highly likely you will get screaming. I don't think there is much of a way around that with severe autism. DS1 does generally know that I mean what I say, but we still have times of screaming when I insist - what I mean is many times screaming goes with the territory with severe autism, you just have to go through it. And sometimes that screaming can last a long time. DS1 for example still can't wait for things really tbh, so with every strategy in the world applied we still might have a morning of shouting and screaming if he knows he is surfing that afternoon.

How long have you been with your dp? Is there any chance of living separately for a while (I know financially that may not be an option) as if your son finds screaming difficult I can't see a solution really at the moment. It might be a lot easier to establish rules and get used to each other with some distance between the boys.

this is a hard one but I would remove the dvd if it will stop your other child from getting hit. Just make it disapear before the visit, but be prepared for a stressed child! as I know my son only has to visit once and he remembers exactly what was there as he studies the surounding first before he decides its ok to stay.

On another note I wonder if its the fast moving of the figures? Do you remember the ones we used to draw at school with stick men? one picture in one position and another in a different position then staple as a book and use a pencil to move the top one back and forth fast so it looks like they are moving? My son likes these maybe worth a try and might give the poor DVD a rest lol

Cansu, dp's two boys are mainly aggressive towards each other. My ds is not aggressive in anyway, he is extremely passive, but likes to have things in order in his room, dp's boys are the total opposite, they get everything out and throw everything up in the air! Moving isnt an option, unfortunately. Dp is very defensive over his kids at the moment.

saintly by no routine i mean they appear to be left to their own devices, no routine or structure. Dp tells me they run around throwing things, fighting etc constantly. In school for example they have lots of visuals, PECs, timetables etc, at home they have none of this, there appear to be no stratergies in place. Prior to their visit i asked for copies of their statements, ieps, reports, reviews, assessments etc and the stratergies they have in place seem to be of some benefit to them as they do not behave this way in school.

I also wrote a list of questions for dp to ask mum things like how do their sensory difficulties affect them etc, mum didnt know. As i said early i really do not mean to slag mum off, there just seems to be a lack of understanding behaviour iyswim (this also applies to dp too)

Dp and I have been together for 3 years, living seperately is not option. My ds doesnt like noise, but could deal with it, if he were allowed to get away from it ie go to his room.

coff33 I got the impression that the children were just looking for something familar to attach themselves too, as i said earlier they came on their visit with nothing, to a strange house, filled with strangers.

Would also add my suggestion that this is an extremey stressful time for all the children is not going down too well. Dp is seeing this as some sort of insult to his children and him.

He seems to view the constant repetitive behaviours as a sign of 'cuteness' and not a sign of stress in his children.

My suggestions of safety gates (as his children cannot be left alone for a minute and we both spent last weekend chasing after them constantly as they have no sense of danger) is viewed as me seeing them as a nuisance.

My suggestions of them using our room as their bedroom (with dp sleeping with them) so they can get away if they need to, as we cannot have 2 kids with autism gettting away in the same room and at least they have dp with them, who is the only familar thing they have here, is viewed as me favouring my ds.

And to top it all off he has now arranged for his children to stay overnight with his mum (who they have never met before) the night before they come here.

Wow!

You sound so strong in the face of a helluva lot more than I'd ever be prepared to cope with. I'm far too selfish to risk my son's hard won progress for anyone.

I just hope all this doesn't place your relationship under too much strain as tbh your DP is coming across as a bit clueless re autism (Ithought he'd jump @ the chance to share a bedroom with his boys and thought it was a fantastic suggestion btw).

Has he done/are the boys the right age for him to do the nsa help or help+ course? Would he be prepared to do something like this? (evidence of having attended would look good for him if contact ever becomes a family court or ss issue)

How much involvement does DP have with the boys school? If he took along your ideas and had a DIRECT face to face chat with them, I get the feeling they'd say similar things to your own way of thinking but that that he might take the same advice from them a bit better as they are more "neutral" iykwim. It would also give you the opportunty to inject some consistency of methodology at your house and school (you can only do what you can do iykwim re the Mum).

TBH ime visual timetable don't always translate well to home, they gave us more trouble than they saved so we binned it (although I still use symbol stories for specific situations). At school pretty much every minute of the day is timetabled and you can't do that at home. We found visual timetables at home just led to ds1 trying to rush through them - he couldn't cope with the 'nothing specific happening' bits of them and just led to a load of screaming.

I don't think safety gates will work that well as they would probably just climb over them - but you will need to make the house safe. We can lock specific rooms from the outside to prevent ds1 accessing them (actually we have that option on almost every internal door), no inside lock on bathroom, locks on all windows, double locks on all outside doors and fenced in garden (8 foot fence) built back to front so it's harder for ds1 to climb (he still manages). Unfortunately almost everywhere else we do pretty much have to follow ds1 around- again it goes with the territory and there generally aren't strategies that will help with that, it's more a case of making the environment safe.

Separating the bedrooms sounds a good idea- it's unfortunate dp is against that.

Bochead, im trying to look at it as he has supported me and my ds through a hell of a lot in the last 3 years, so i have to do the same, i cant just fall at the first hurdle! At the moment he seems to be going through denial and is very protective of his kids. Im trying to bear in mind this is all new to all of us, including him.

He has asked to be included in everything from school, including meetings and he has asked me to help him put together a list of questions to ask at the meeting. There isnt a list, just what strategies are they using in school and how and what can we continue at home, will be my advice.

He has read about ASD, but he is failing to see the connection between difficulties and behaviours. His children are 6 and 5. Courses would be difficult with working and any free time he has, he plans to spend with his children and views this as a better use of his time!

I was just thinking that one of the best things about courses is the chance to meet other parents of asd kids. Even a one day course might help shift that denial/mental block thang he's got going on. You are just too emotionally close to him to be the right person to do that, some points are best heard when said by a neutal "outsider",frustrating though it is.

I've got a feeling school will wake him up a bit. It is still very early days.

Saintly visual timetables etc was just a few examples of what help is in place. The point i was trying to make is that i dont think mum has a very good understanding of why they behave in certain ways for example sensory behaviours, which is not a slur on mum, im sure not everyone has the time or energy to research these things.

Another example is the childrens only form of communication is echolalia and their understanding of spoken language is very limited, in school they use PECS to communicate, mum may well have another form of communication or just know exactly what they want, i dont know. But here i think it would help to reduce the fighting, the screaming, the throwing things etc, etc. Im by no means an expert on the children, but i need help to understand/communicate with them.

Bochead, i agree a course would help him, its just trying to convince him that he would benefit from one! Perhaps that will change with time, unfortunately i dont have time on my side, the children are due for another visit soon and i need to get something in place before then.

Saintly, im not sure what we can do if the safety gates dont work, obviously the childrens safety has to come first, last week involved dp heading in one direction and me in another and my ds didnt get any attention at all. Adding to this he had no where to go to get away, he often goes to his room to line things up when he is feeling stressed, which he also couldnt do and was under a lot of stress due to the change.

Yes PECS would be good. Do school send home their PECS book? You could just use it, if your dp sees it working then presumably he'll realise it's a good thing to use.

Admittedly we stopped using PECS here a while ago unless we really couldn't understand as we built up different (faster) ways of communicating using gesture, vocalisations etc, but that was after years of PECS use (and ds1 has moved on again now anyway).

I do think that having you going in separate directions is fairly typical. In our family when out for example one with look after ds2 and ds3 and one will look after ds1.

I'd use locks- it's what most families of severely autistic kids do tbh. Locks on the outside of all doors then you can keep certain rooms out of reach. We have those screwy type key things so you only need one key for every door.

I haven't yet met an autistic child who doesn't climb over a safety gate although it might be worth a try. I didn't want to lock ds1 in his bedroom so we used 2 mesh travel barriers one on top of each other for a while. They were done up so tightly that he couldn't undo them. I'd take the top one down when he was asleep then when he woke up he could hop over the bottom one.

Saintly, mum doesnt use PECS at home. That was on my list of questions for dp to ask before the visit, having read reports etc. Something that dp could ask school about, perhaps we could have a copy for here?

Perhaps the children use gesture or talk more at home to enable mum to understand. Here they just repeated back everything we said and in school they do the same hence the PECS.

Last week was the first time i had met them, so didnt know what to expect, other than what i had read in reports etc, im trying to be more prepared for next visit.

Locks rather than safety gates, i will have to take the gates back, thanks for the advice and saving me some money! I could also get ds a lock for the inside of his door, although i am a little worried about him not being able to undo it, poor motor skills and hypermobility, maybe i will be needing a new door too soon

I would expect school to send the book back and forth tbh in the school bag. DS1's PECS book still comes home every day even though 99% of the time he uses his talker now (in school as well). You could ask the Mum whether she has it (or check with school - they might be able to do you one to keep at your house).

Maybe they do and mum just doesnt use it, i will ask dp to ask mum again, just worded a little differently. As when i asked about PECS before, mum didnt know.

I really do give up, ive just asked dp to ask mum if the kids bring home PECS books and if so could we have a copy. His reply thats not the focus right now!

He seems more interested in dressing them up and parading them around, perhaps i should just let him get on with it.

Perhaps next visit you could have to disapear with your own DS to "long lost Great Aunt Mabels incredible pop up emergency" for the duration (other wise known as a travel in 20 miles away) and let your DP get on with it ; )

Sometimes we have to let loved ones fall on their own before they'll shine a torch on that wondrous thing "common sense".

Drastic? (I keep thinking of your lad having to share a room with 2 strange screamers - so unfair on all 3 kids) If nothing else at least the idea may have made you smile ; )

Bochead I just feel so sorry for 2 kids, being bought all new clothes and trainers (although they have sensory issues) to then be taken to see Auntie x and uncle z and nanny y and cousin Fred in several different houses, by a stranger, without any form of communication, without anything familar to them. Everyone smiling at how 'cute' they are and how much they like DVD's when they repetitive ask for a certain DVD.

Its like torture to stand by and watch. Your right though, ive tried, i will let him get on with it. Unfortunately an unfamilar place is stressful for ds, especially sleeping there, all i can do is insist that ds's needs are meet and leave dp to make decisions for his own kids.

Those poor lads!

Am I allowed to say it might be a good thing in the long run if the pair of them have a mega meltdown so DP gets a fast lesson in common sense? Hs kids don't have to be verbal to communicate his lack of understanding borders on cruel.

Sounds to me as if DP having a face to face chat with the school will hopefully come after visit 2 and then he'll be willing to listen prior to visit 3 with any luck.