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 don't think you can.

I think if he could be 'moved on' from them - his mum would be doing it!

I know with mine, all the distraction in the world doesn't help. It's who they are. You just have to try to give them other options and wait for the next obsession.

Talk to his mum, if there are things that she is doing - therapy wise - you / his dad could continue with during the time they are with you, so that you are all working together, doing the same things, providing consistency.

I don't have any experience of severe autism, but my gut instinct is that you'd want to get to know these boys a lot better before even thinking about what you could do to help them.

If this was his first time visiting you and your house, he's unlikely to have been at his best and most relaxed.......

I wouldn't try anything at the moment other than letting them get on with it. In a new and stressful situation if they can have something that grounds them - even if its a DVD then it doens't hurt to let them get on with it and let things move on gradually.

Let them get to know you and you get to know them and then see how it goes.

I'm an aunty to a girl with autism, she's my partner's niece and I first met her aged 4 and post diagnosis.

I also have six years experience working with folk with various ld including ASD.

The big thing for me is accepting that it's not my job to sort it out. SIL is in charge, I have to go with what she wants for her daughter. I can have all the bright ideas in the world but until I'm the one dealing with the behaviour 24 hours a day 7 days a week, my suggestions are just interfering!

I settle for loving my dn very much, paying lots of attention to her little brother (including lots of respite for him in the school holidays when he comes to stay) and listening when she needs me to. And, if she asks, I suggest. Not before.

Any help? I'm not trying to be harsh just sharing my experience of a part time involvement

Mum says she just lets him do it and there is a tendancy to just let both boys do whatever for a quiet life, with both mum and dad, which i understand.

Obviously this is the first time both boys have been here and its all new to them.

Do you think visual timetables, timers maybe might be worth a try? in an attempt to limit the behaviour to certain times.

What is concerning me, is that we also have 2 other children with autism, the other brother tries to do the same thing and he gets hit if he goes anywhere near the DVD player. The screaming etc is also bothering my son.

Keep consistency with what's done at home. DN finds life hard enough without us lot forcing her to do stuff she doesn't understand - she gets that at school and when her knob of a father deigns to visit

Build a good relationship with the mother so that you can share idead. You're obviously keen to help - same as me two years ago - but it really is the primary carer's decision.

Love them and let them be. And buy him a cheap portabke dvd player to stim with

Thanks Purple, i agree all decisions are the primary carer's, im just trying to work out how to make this work when the boys are here. Its really difficult with 3 children with autism.

We had 2 DVD players at the start of the weekend, one each, one quickly got broken with the constant FF, rewinding, opening and shutting etc!

Point taken about it being too early to try anything yet though and portable dvd players is a good idea.

just hide the dvd players and say they had to go in the bin, they're broken.

consistency and motivation (the child's not yours btw!)

One suggestion - For consistency work with the Mum AND Dad to produce a "passport" as per the cerebra guide (VERY handy to give to childminders/supply teachers etc too btw) so that you start to get an idea of what makes these kids tick/sets them off.

All autisic kids are different, as you know the sensory issues makes a huge difference here. What is it about the dvd player that motivates the child? The noise?The repetition? Does he/she find it comforting? (in which case the behavior may dissipate of it's own accord once he's familiar with the new environment).

Then is there something you find more socially acceptable to replace the dvd player? A toy with lots of twiddly bits (perhaps an electronic toy till?). You could remove the dvd player completely for a visit in a few months (comfort in a new stuation) and then replace it with your acceptable substitute gradually fading the dvd player back into the room over time.

Did the kids bring their familiar comforters with them to a strange place? MY son has a sock monkey (made by me so an extension of Mum) and his DS lite for reducing hs anxiety in strange places/with new people. He also often takes his own grub. Even then he's at his worst.

I can't improve my own kids behavior unless EVERY care giver is singing from the same hymn sheet from school/home/swimming instructor etc - it's a 7 day a week thing to make progress. Helluva irritating to have to keep updating extended families with new goals/strategies but well worth the effort. Are you and both the kids parents able to do this?

Sadly unless both natural parents and yourself are willing to work together and with total consistency you are on a hiding to nothing. From your comments about "an easy life" I suspect that either your partner is vastly underestimating the work the Mum is putting in he doesn't see day to day OR you are being a little naive as to how much actual influence and change you as an indvidual will be able to make. Autism is too complex to to respond to fairy godmothers - it's sheer effort that gets you anywhere, are you sure you can take this on and devote enough time to your own kids therapies etc? .

I'm a step mum of 2, the oldest of whom is 22 and I gotta warn ya - it's death by a thousand cuts in the long term to undermine the principal care giver in any way - your comments after just one weekend about the Mum make me uneasy. I'm sure an outsider could criticise my parenting not havng a clue how far DS has come or how bloody hard I work day to day to help him.

Himyname, my first thought was to start as i mean to go on, as this has worked really well for my ds, for example my ds had to wear pants when he started his new school. A new environment, new rules.

But now having met my partners boys, that isnt going to work for them or us!!

Bochead, I have tried to work out what he is gaining from the DVD player, I think its the repetition which he is finding comforting. Now sitting here thinking about it, trying to move him on so soon would be a silly idea, ive just reserved two portable DVD players from Argos!

Children didnt bring anything with them, apart from their dummies, which they have constantly.

The 'easy' life we are all guilty of to some extent i think! But i made that comment, as the boys have extremely limited understanding, as this is used as an excuse for them to throw drinks at the TV, throw food at the walls etc, etc not in a temper, but because they find it amusing and they are never told no. I understand that their understanding is limited, but they will never learn if this behaviour is not replaced with a new one.

I have been trying to tell them no we dont throw drinks, we throw a ball and then giving them a ball to throw, but im told dont bother they dont understand kind of thing.

It might come across as me 'trying to take over' but mum is struggling and has 'just had enough'. The school and experts etc have made recommendations for the boys, but mum doesnt want to follow them, i guess she is tired, which is understandable.

All im trying to do is make the boys time here as nice as possible for everyone. Im really not slagging mum off.

Hopefully with a bit of respite Mum'll perk up then - I know went through a horrid patch when years of sleep deprivation + struggles with school etc caught up with me. A day off would have made all the difference in the world at that point for me, as I was just worn ragged doing it all alone.

Even NT kids feel better in a strange place with a few familiar toys/blankets/gadgets around them - perhaps you could ask for the next visit? It may be a favourite item of clothing or something, but your partner should be able to ask for you.

Partner and his ex have a good relationship now and can talk, seems the thing they rely on heavily is the dummy, which were sent.

His ex does have the support of her mum, dad and grandparents and us too. Without sounding too patronising, mum gets every weekend off, Thursday to Sunday (which she needs, as they are a handful)

I suppose what i am saying is that just because others might have given up on changing/improving their behaviour, doesnt mean that we have to. Obviously its better if everyone is working on this. In school the boys seem to be making some progress, no dummy all day etc. But if mum isnt prepared to follow recommendations which are working in school, does that mean that we cant?

Hereimagain2, I suggest you get the insurance too for the DVDs as its only few pounds and so worth it when it gets broken you get it replaced with a new one T the same price band. Just a thought....I don't have much more to add about redirecting the behaviour other than what's being said. He may like the visual stimuli from tracking back and forth the video, and the repetitive thing is comforting him I guess.

as his first visit he may be relying more heavily on things he is familiar with & things he can control, ie the video.
As he gets to know you, your house, your routine he may become less reliant on the video.
I guess my best advice would be Slowly, slowly slowly, tiny steps, little changes, its a long haul but these things can be changed but if you try to move him on nto quickly he is likely to feel the need for his video all the more.

Thanks Blueshark and Dontrememberme, yes i acknowledge that trying to move too fast is a silly idea, i have ordered two portable DVD players and will leave things exactly how they are for now and let them get used to being here first.

I can understand that mum has been doing whatever works for her, the only trouble is when they come here, we also have another child with autism, so what works for her at her home, isnt going to work for us all the time.

I suppose i feel i have just been left to find out how this is going to work for 3 children with autism, with no information.

This is the first time i have even met the boys, dp had only had contact for 3 weeks prior to this.

My ds was very like this when younger. tbh we couldn't do anything about it or he would become very distressed and violent. He also used to throw bricks, pegs, straws and othe multi coloured items everywhere. I think people who visited us used to think 'just do this' or 'can't you do that'. We honestly couldn't - we werejust coping with our very severely autistic little boy in the best way we could given that he was also refusing to eat, ran up and down and climbed constantly and was awake half the night. You might find that in time your partner's little boy improves. My ds now (five years on) is a very different, much calmer little boy. He has stopped the obsessive rewinding and now just watches his tv. I can see why you want to intervene, but from what you've said here you are going to have to go slowly and maybe wait to get to know your partners children before putting any strategies into place. I can appreciate though that having your own dc with ASD makes life challenging.

Thanks Cansu, the problem is that ds also has a bedtime routine, which has taken me 7 years, various medication etc to get. He is allowed to stim in his room before bedtime and he can then sleep without medication.

When the boys came ds couldnt do this, as we had hours of screaming at bedtime when partners boy couldnt continue to FF and rewind DVD.

Also the throwing of food, my son has a extreme food phobia and has taken years of therapy to get him to even sit at the table or be anywhere near food.

I dont mean to sound harsh on DP boys, im just trying to think of solutions to these difficulities.

My son is severely autistic.

If he was rewinding videos to get something from it (eg work out what was happening at a strange bit) I would leave him to it. If he was being compulsive I would remove the DVD and sit through the screaming. Which could take a while.

I don't think you can expect to tackle the DVD (or other thingtat will crop up) without screaming tbh. If a chikd is severely autistic it can be their only means of communication when angry.

Seems like you are doing your best in a very difficult situation. maybe you and dp need to have a discussion about what are the most crucial things to work on for your sanity and to protect your ds from any additional stress or changes to his routine. If you have got your own ds to a good place then I would also be very wary of allowing his routine to be messed up. Balancing the needs of more than one dc with ASD is very hard. I have two ASD dc ds (very rigid) and dd less rigid and less severe but still has her own quirks and routines. Because ds is more severe, we have had to kind of fit dd round him which is far from ideal so he goes to bed first when he is settled dd goes up. I sympathise.

Saintly, im at a loss for what to do, ive been placed in a very difficult situation. When asked for advice mum is saying 'oh just let them do it, thats what i do' but mum doesnt have another child with autism to think about.

At home partners boy's have their own rooms. Here all 3 have to share, when ds is used to having his own room etc. Feel like all the solution finding has been left to me!

Can't imagine how three autistic children can share a room. That is not practical AT ALL. Surely it isn't realistic for your dp's boys to stay with you in these circumstances?

Cansu, thats another really difficult bit, dp's ex has only recently agreed for him to see his children, it was supposed to be a gradual process. He visited them 3 times in total for a few hours each time at their home, then mum decided that they should come here to stay. Everything is on mums terms at the moment, as dp is scared she will change her mind and stop him from seeing them again.