what to do with out of control AS ds1 :(((

[timsmama]

Hello! Unfortunately I do not have time to be a very active member on here, but the few times I posted something I got some very good advice, so I am hoping it will be the same now.

ds1 (4) was diagnosed with AS in May (suspected diagnosis last December) but we havent had any help or treatment so far. The situation at home is very very stressful, to say the least. I live a completely isolated life with our 3 children, as it is even more stressful to go out and meet people. But even at home it is so challenging, I am very close to a nervous breakdown.

He really is completely out of control. I know we have to do something about it, for his as well as our own sake, but I just dont know HOW and WHERE to start??!!!

We have just moved to a different city, which is obviously a very difficult thing to go through for someone with AS, which has resulted in his behaviour to be even more challenging. He is highly aggressive - mainly towards his younger brother, so full of tension...there are a few others things we need to tackle, but the aggression and tension is what I find most difficult to handle. I just dont know what to do. He will not leave ds2 (2) alone for a minute, he teases him, hits him, bites him, kicks him, throws things at him etc. ds2 is starting to defend himself by biting, but I can see how much it stresses him out too and how everyone is really suffering.

I am hoping that someone on here may have some useful suggestions what to do about the situation?!

THank you :(

I dont know how much longer we can cope, as awful as it sounds. Oh, and I love ds to bits, he is such a lovely boy with a heart of gold, which makes it maybe even more difficult to deal with his behaviour.

Structure your day. So, for example, always do clothes breakfat teeth cleaning then have an activity in place afterwards - dvd, story, whatever.

Have few but unbreakable rules with set consequences. Eg: hitting means 4 minutes time out.

Does he have a particular toy like lego he likes? If so, star chart to earn it. Even if it's for ten pieces of a kit per day. Good behaviour during a short period of time earns one piece of lego.

Am on phone atm but will do a proper answer when I get home if you're interested?

It sounds very distressing for you, and your other children. I have had extremely difficult defiant behaviour from my DS for years, has been excluded from school on several ocassions, he also likes to annoy his brother. I read the description of oppositional defiant disorder and I think it fits DS really well. They love getting negative attention. Ignoring is the best.

In our case, I have had enough, and I am now trying medication. We are using risperidone tiny dose for 3 weeks now, and it is amazing! I am not planning on using it for ever, but at least until I find a behavioural approach that might work.

In your situation, and specially considering your DS2, I would seriously consider medication.
good luck

Thank you very much zzzzz!
to be honest, I feel like I am still learning to understand him, understanding his needs, what triggers him etc. I do know that being anywhere busy or loud would set him off. But at the moment it really is all day long, no matter whate we are doing and where we are.

He used to be much easier to handle when I just took them out for a walk. Even in the garden it is hard work, as he simply will not let the others play. He has always been extremely aggressive towards ds2, although I do know that he loves him and wants him around.

The move is contributing to his usual problems, as his boredom and frustration I think. He is very clever, the children's neurologist believes he is gifted. His speech is quite advanced both in English and GErman (although this does vary depending what he talks about) but he would never be able to tell me what is bothering him or why he is behaving the way he is.

Apart from 3 months at nursery last year (then we had to take him out as he was having too many problems there and they dealt with it appalingly), he has been at home with me. Considering his intellectual curiosity etc, he must be sooooo bored and frustrated with the situation. and also this will maybe show how EXHAUSTED I am with 3 boys under 4 at home all day long...

funny you should ask about diet as I have found some information about gluten free diet positively affecting symptoms. do you have any experience? we eat quite healthily really, he likes fruit and veg and try to keep sweets to a minimum.

physical exercise isnt great at the moment. where we used to live it was really easy to take all three for longish walks in the woods. here it's more difficult. I do get help twice a week for 2.5 hours, which is better than nothing but just not enough.

another big problem we have is that he will just not take time out. even when it's obvious that he needs to calm down, that a situation is too much for him, that he is tired etc, he refuses to just spend a little time on his own. how can I make this more attractive for him? a friend of mine has a son with ASD and she mentioned the ipod touch...I like the idea but am usure if he is old enough for it.

thank you so much for reading this, when I get started it always gets too long;)

When my DS was like this we we made sure he had a proper routine. We made visual cards for him so he could see what he was suppose to be doing eg having dinner or playing lego ect. This way he felt secure and less anxious. We gave him a time out card so he could tell us when something was bothering him.If he showed the time out card it meant he needed a quiet space with no interuptions. We used massage or calming music to make him feel less stressed.We did still have time out for hitting or hurting someone.

thank you very much purplepifin, timetoask and ontheroadagain, too. I took so long to type my reply, I didnt realise there were more:) will write more in a minute...

Some special schools have a sensory room (all White with fairy lights & cushions) as a calm space. It might be possible to make something similar at home. Ikea used to do a white kids tent (dunno if they still do). And you could ask your ds (at a calm time) what he would like in it.

Ds who is 5 can be difficult and loves to tease his 2yr old sis. He finds her reactions rewarding somehow.

We try to remember to praise any period of mins where they play nicely and point out how kind he is. We have zero tolerance on physical stuff. I just physically pick ds up if I have to and sit with him and in the corner.

Positve rewards and praise take ages to work but shouting and telling off never work at all (doesn't stop me yelling )

Agree with all the stuff about routines and fresh air. If your ds is bright then the boredom makes them worse.

He sounds as if he does need a nursery and for you to try to find sympathetic friends to meet up with.

@timetoask just tonight dh again said that he thinks we wont be able to handle this without medication. I just dont know. he is only 4 and he hasnt had any professional help/support yet. on the other hand, all of our lives really is suffering, as is my relationship with dh. how old is your ds? sounds like you have had a really hard time too!

@purplepijin yes I would def be interested in a proper answer if you have the time:)

@Parietal unfortunately his room isnt very big. he does have some space underneath his bed, which we thought would be ideal for him to go and relax/calm down/have some time to himself. we tried to make it really cosy and inviting (little wall lamp, fatboy original to lie on...) but he just says being on his own is boring. The fairy lights are a good idea to make is cozier!

@the crunchyside will your ds stay with you when you pick him up and sit with him or will he scream, kick and hit?

@ontheroadagain yes, I have heard about the visual cards. i should really see if it works.

what makes me so said is that I feel like I just dont get my ds1.

thank you so much for your replies, you've been really helpful already. things can only get better, really:(

Ok, structure. You don't necessarily have to stick to a rigid timetable, but try to always do similar things at similar times of the day so breakfast at 8, lunch at half twelve, dinner at six type thing. Always do essential things in the same order; for example clothes, breakfast, teeth, fun stuff. You can micromanage this down to which sock goes on first, socks before trousers etc to help his independence skills. The suggestion of picture cards is a good one and someone more knowledgeable will be along to suggest a website. Even if his superficial communication is good, PECS symbols can reinforce his actual understanding - sometimes, with AS, the words and the understanding don't match.

WRT to rules, KISS is your friend - Keep It Simple, Stupid (not that you're stupid it just makes a good acronym). Something along the lines of Kind Hands, Clean Bodies which covers the basics - no aggression, washing is compulsory - without becoming a minefield of exceptions. Do not tolerate play fighting at all. He will not understand the difference between play and hurting Rules apply to all members of the household.

Keep things consistent - have set consequences for unacceptable behaviour, and equal if not more rewards for when he does as you ask. If he struggles with time out, take time away from a favourite activity - for example, allow him half an hour on the CBeebies website each day, but if he hits his brother he loses a minute. Get a digital timer, put it by the computer to count down to 0 and when it's done, pull the plug if necessary! This will cause meltdowns, but he will get the hang of it.

There is no guarantee any strategy you try will work, or it might work but only for a short time, or it might be a miracle. You don't know until you try, and the only failure is not trying. If the strategy fails, it's the strategy that's wrong NOT you or him

HTH I'm sure there's loads I've forgotten!

Have you been referred to an Earlybird course?
I'm not sure if they are national yet but a lot of areas run them now.
They are a fantastic course which give you a wealth of information on how to move forward post diagnosis.
Another avenue is Banardos who offer befrienders who can come in to help you.

If your DS is 4, is school this september or next? Is he at pre-school? Have you got a statement started yet?

Well just to have 3 NT kids under 5 is a challenge, please do not underestimate how hard it would be even if your DS was not AS. And they would still hit each other. My NT boys are 7 and 9 and they still do at times.

Can you 'fence' off part of a room to keep the other 2 safe at times eg one of those stairgate things that extends out and can block off a larger space. You can get ones that divide a room, or fence off a corner. Am not suggesting you use it all the time but perhaps when needed to separate them / give you a break - and swap round who gets to use it. Or keep a travel cot downstairs and pop the younger ones in it when needed.

DS has been an ipod whizz from 3. He has an IPAD now which he loves. Apparently some charities will fund IPADS now - there was a thread recently on this. It is great for when we are out and about. He loves flash card apps and books eg Dr Suess ones on IPAD / IPOD. It means we can even eat a meal out. He also used to hide under a blanket in the pushchair which 'shut' the world out and he used to play on his ipad under the blanket quite happily. Do you use a buggy for your 4 year old? If not would this help you get out?

I confess DS has few play skills and spends too much time on various computers and screens. He has just learnt to play bowling on the wii. But when you have 3, you can't be occupying the ASD one all the time so electronic babysitters are useful.

My best advice would be to look at ABA, an autism therapy which addresses behaviour amongst other things. It is very expensive so not sure if that is an option for you, we paid privately on a very reduced programme basis and then won funding at Tribunal. It saves my sanity big time. DS is much calmer, follows instructions, understands consequences. Lots of positive rewards - catching him when he is being good.

Can you access portage / a specialist early years outreach teacher?

Do you have Homestart charity in your area who could give free support?

Could you put one of your other children in nursery?

Is he starting school in Sept? Will he have good support?

You can apply to social services disabled childrens team for a carers assessment for you and a disabled child assessment (see contact a family website for info). If they assess you have a need for more help you can get direct payments - or is this the help you already get? If you get DP ask for them to be increased to more hours. Or at least higher number of hours during the holidays (we get more in holidays than school time). Someone I know who had twins got 10 hours a week help and you sound just as frazzled as they were.

sorry just seen you asked a question. sometimes ds will scream and thrash but not often hit or bite. ds is v small for his age so easier for me.

Agree with other posters that three under five is hard whatever so please don't be too hard on yourself.

As with regards medication I would want to try other approaches first. Would try to check out local support groups for advice and friendship.

Thank you so much for all the great suggestions. I should have probably mentioned that we live in Germany and a few things work differently over here. Here ds wont start school until he is 6. I am glad really, as it means he gets to have 2 full years at nursery now, get some help etc before having to face school. The nursery he is starting at is a very good one - the groups have 12 NT kids and 5 SN kids, they have OTs, physio, speech therapists and psychologists on site, so I am quite confident that, finally, he will be in good hands:)

I have managed to get a space at a different nursery for ds2 as well; he will be starting in October. And today I was speaking to someone from a SN charity, who told me that they offer a service of trained staff coming into homes and helping out, giving specific advice re autism and what can be done to make it easier for him and us etc. that sounds quite promising and should get paid for.

It's very difficult to remove ds1 from a situation as he completely refuses to. And as he throws things at his brothers when in a rage, putting then in the play pen doesnt work either:( BUt taking away time from DVD or similar might more eventually...although I already fear the meltdowns just thinking about it. AT the moment I depend on the DVDs myself though, as it is the only few moments in which he is a little more peaceful. I might have to wait until he has started nursery or I get more help here, as I dont think I have the strength to do it right now.

I do have to get my act together though about having even more structure in our days again, so thank you for pointing that out!!! Where we lived before it was very structured, and ds1 had OT twice a week, one specific morning just with me, and 2 mornings a nanny entertained them. In the afternoons we were always outside, no matter what weather. Here it is slightly more difficult as none of the "routine morning activities" have started as that will start with nursery in August, and going for walks with 3 children is more difficult too as it is quite hilly. No nice playgrounds either unfortunately. We have just ordered a trampolin for outside though! If we manage to stick to the rule "one child at a time only" this might work.

Of course I realise that having 3 young children is always hard work. We chose to have them, and with small age gaps too - and never expected it to be stressfree. But it really is hell. I am surprised our neighbours here havent called social services yet, considering the amount of screaming coming from ds1. Had we known the diagnosis earlier, ds3 would probably never been "made". Lucky really that we didnt know, as I cant imagine life without him ;)

To top off all the stress at home, my mum - who was diagnosed with breast cancer about 9 years ago - is finally being beaten by that monster. I am currently going up to see her nearly every weekend and it's obviously causing additional stress and distress.

Anyway, thank you so, so much for all your kind words and great suggestions. If you have any more, please keep them coming:) Oh, and I do think the ipod or ipad would be fantastic for him. I wonder if the ipad would actually be better, as his fine motor skills are quite poor and I dont know if it might be a bit small for him? On the other hand, the ipad is much more expensive and I dont want to see it broken...

So sorry about your mum. x

Hello timsmama, are you still around?
I am sorry I was not able to reply to your question sooner, have not been able to log into mumsnt.

My son is 6. I didn't realise your son was so young, when you said you have three DC I assumed he was older. You've been a busy girl!

I have always always always been against medication. Thought I was wonder woman and ofcourse I would find the "natural" behavioural solution to DS's behaviour!!! (I am stubborn). My family (we have a neurologist in the family) kept banging on about giving DS medication. And I kept insisting that I would never never never do it.

So I tried so many things: behavioural psychologist, ABA consultations. I also read that diet could have an impact so i did a blood test to check for food intolerances (found lots and lots of them) so I stopped several foods, this helped with the dreadful stools he had but the behaviour did not improve. Then I tried retained reflex therapy, a complete battle to get the excercises done every day, more defiance, didn't work.
I tried auditory integration therapy and light stimulation therapy - these DID help (I would really recommend that you go for these), and the behaviour improved at school somewhat, but the definat behaviour continued.
DH and I tried positive reinforcement (one square of choc for good behaviour) this works for one week and then no more, we tried getting angry, we tried negative consequence (no tv if you dont behave) he couldn really care less. We always give him plenty of excercise. We eat very healthy. We have a good routine. What else could I do? No idea.

In the end, I WAS THE ONE THAT WAS GOING TO END ON MEDICATION.
I went to see a neurologist in desperation. And what he told me is very true, it is not only about the child, it is about the family harmony, it is about having a mum which has the energy to help her son with what he needs, about the siblings. It is also about giving the child a chance to feel calm and be able to LEARN from his therapies/etc. Medication has given us this respite.

This is a very personal decision and you should consult with professional, they do have side effects.

Good luck.

Hi! Yes, I am still around though had the day from hell! Both me and ds3 woke up with a stinking cold...and then I actually had 2.5 calm hours while a care worker took ds1 swimming.

But when he returned (luckily both ds2 and ds3 were having their naps by then) hell broke loose. Do you get that with yours? you take them somewhere and they dont want to leave (especially if it is somehwere "special" like swimming), have a major meltdown and keep screaming for at least an hour "I still want to be there!" etc? He was screaming, kicking, hitting, throwing things and I just can get through to him when he is like that. I can see he is unhappy and that really all he wants is a cuddle, but he wont let me near him. Any suggestions as how to tackle those I-dont-want-to-leave-meltdowns?

WHen the other two woke up, it just continued...I was SOOOOO relieved when dh came home from work and I honestly do not know how on earth I coped before our move 2 months ago. (until then I was on my own with the kids mon-fri, dh only home on the weekends!)

I posted on a German forum a couple of weeks ago but never really got any useful suggestions, so thank you very, very much for all yours posts. all the German forum members tended so make me feel even more rubbish (like "your son is autistic AND has just gone through a major house move...give him a break")

zzzz thank you for the idea about exercise. you are right that some more structured outdoor play is needed when you cant get out easily. a while ago MIL suggested a little goal for shooting the football, altough I think a basketball hoop would be less risky. MIL is a nursery teacher, so I will ask her for other ideas that will tire him out, will be fun and maybe even tackle some of his weaknesses (balance, catching balls, concentration and and and:))

and yes, the nursery is great. we are very lucky we managed to get a space there for ds1 as everyone (with nt and sn children) want their children there! For everything else I seem to have to make endless phonecalls though, but had a phonecall of the autism centre around here and we should get appointment there very soon too, so fingers crossed.

timetoask it does sound like you've had a long journey too. I am so glad that the medications work for your son. I, like you, feel like I need to explore other avenues first. The neurologist that made the suspected diagnoses in December did mention medication, but also said that he feels we should try to handle it without first. The other additional diagnosis he made re ds1 was DAMP, but I guess that's quite normal with AS?

I really am at the end of my tether (and did so much shouting today even though I know so well that it makes it worse rather than better :( ) but as I feel like we havent really started getting specific help yet, we will wait a little. dh seems to think medication is an easy fix solution, but there are side affects...I, too, have lots of doctors in the family who would probably go for medication a lot quicker than me, but I believe that I need to give him the chance to try out other, side effect free, methods first.

In germany they seem to use an apporiach called TEACCH, but from what I could gather so far it is similar to ABA?

gosh, I am sooo sorry, such a long post! thank you also for your kind words re my mum. as I said, she was diagnosed a while ago, and it started spreading several years ago too, but even though you know the end will come it is still so, so hard to accept that now is the time. She is an amazing, celver, selfless lady who brought up me and my 3 brothers in such a loving home, I just cant imagine life without her