DS1 (2.8) is 'presenting with ASD' any advice welcome.

[MrsKoala]

My DS1 has always been an unusual child and we struggled with him from 15mo and started seeing a Paed. The Paed now says he is old enough to diagnose and she thinks he is strongly presenting as having ASD. We are on the waiting list for a formal assessment but the Paed thinks this is just a formality and we should start researching and acting now.

I have a meeting with his pre-school about this this afternoon and i am a bit tearful and unsure of things i need to say. If anyone can suggest what might be important i'd really appreciate it.

DS1 is a good talker at home but is very very quiet at pre-school. He is full of energy and loves running around.

We particularly struggle with getting him to go to bed. Any attempts to put a routine in place are met with meltdowns. He now hates the sight of books because he associates them with going to bed. Any tips also gratefully received.

Thanks

Have heard they can work really well for some people
We just got a duvet ( single on toddler bed) and tucked it in really really well, v tightly, & it had the same effect. Worth a try in the meantime while you decide whether to get one or not.

Ds likes to be 'squished' (where he lays down and pulls me to lay on top of him) by me, but not anyone else, so I'm wondering if it's the weight he likes or the me part. But oh my goodness they are expensive. About £200-400

MrsKaola

Research ABA and see if you can get yourself trained in some of the techniques. It helps you to break down barriers and give your child skills that enable them to access the enjoyable parts of activities they otherwise can't stick with something long enough to understand or notice.

A study has just come out this week showing that parental training in ABA has much better outcomes for children with ASD than the usual training (if you are even lucky enough to get it).

If you join ABA4All facebook group, there are some grants available for new families to access, lots of links to research and explanations.

HTH

Oh god. Things are just getting so much worse. DS now is refusing to get dressed, have his nappy put on, clean his teeth or get into the bath. He gets into total hysterics if we try to make him when he doesn't want to. He has headbutted me in the groin today and i am now so sore. The only thing i can bribe him with to do anything is biscuits. Nothing else works at all. He is becoming a screaming tyrant. I really need to be able to get him to do the basic things, otherwise we can't leave the house. He has had so many biscuits today and not cleaned his teeth.

Bedtimes are getting worse. No books are allowed or we have screaming, sobbing, headbanging etc. No bath. No taking him into the bedroom. Nothing which indicates any hint of a bedtime routine.

I am waiting for a call back from the osteopath and i have found an OT which is near-ish but i'm not sure we can afford them. It depends how many sessions we'd need.

he has shown no preference for any clothes specifically. He just hates to be manhandled or dressed - he says he's 'too busy'. He prefers to be naked from the waist down and hates shorts.

Getting him ready to go out takes 3 hours unless i give him biscuits - which i had to today as i had an appointment at 9.30am.

On friday it took me 2 hours to get a pair of track bottoms on him so we could go to the park. But then he screamed and choked and almost vomitted for 45mins till i just took them off him. Then he was fine.

Once i get the toothbrush in his mouth he's fine, but getting him to allow it is what is gruelling.

The bath thing is the worst. He loved bathing up till last Weds and then all of a sudden has become hysterical at the suggestion. We tried to force him in twice since but he flails around cracking his head on the side and going under. It is terrifying.

We tried the bath at different times but he now hates it no matter when it is. We have tried to read a book out loud in the front room while he is playing at different times of the day but he gets furious and insists we stop reading.

I want to bath and read to ds2 but i can't. :( I hate feeling like this but his behaviour is seriously ruining our lives. We did want another baby, but i can't see us coping. I already feel bad for having ds2.

I know what you are saying Polter, but i also have another child to look after so if i start giving up reading and bathing then the baby doesn't get those things either. If i just don't get ds1 dressed and we don't go to the park then ds2 doesn't get to go to the park. I try to pick my battles and be flexible but there are some things and some times ds1 really has to do what others need him to do. I have to go shopping to buy food etc.

Yesterday i let him watch youtube all afternoon and it was really blissful. But i don't want him to watch tv all day and i don't want the baby to think that is normal. Also he wont watch things on his own so i can do other stuff. he insists i sit and watch it with him so he can pull my hair. He follows me round the house wailing 'big trucks' till i sit down. my head is so sore from all the hair pulling and the baby gets left alone in his ring.

He only eats if i put youtube on at the dinner table. What kind of message is this to the NT children and how will they feel when i don't allow them to watch what they want?

If he was an only child i'd just say fuck it, and let him do what he wants

Have you joined the ABA4All Facebook group? There are lots of links to free training and sometimes grants and loads of research articles. You need to avoid the confrontational situations and address sensitivities slowly and with the child's encouraged cooperation. You also need to learn how to find positive things to do that help you feel you are helping your child to progress happily, and be able to identify rigidity early before it becomes an entrenched fear that is much harder to undo. ABA can help with all of those things.

I'm not really into Facebook and don't know how to join a group on there I will try.

I looked at the aba techniques online and I must say I can't see it working with ds. I don't think I could get him to sit still long enough.

I'm really grumpy today as we are all massively sleep deprived. Both DC were up most of the night and the baby is screaming in teething pain constantly. I'm afraid we just keep losing my temper with ds1. Trying to cook dinner and see to a screaming baby while he is smashing up the place and throwing a tantrum is horrible. I think it's safe to say at this moment I absolutely hate my life and regret having children. I just want to run away and never come back.

Another vote for ABA here. It was the best thing I ever did. If I had stuck with the standard autism offering in my area, my boy (at severe end of spectrum, with associated learning difficulties) would probably not be talking now and might be still self-injurious. It is a harder thing to get but well worth it

Okay. I'm on the aba4all FB page, can anyone tell me how I join it?

I could never see how my boy would sit still for even a second either , very hyperactive, but it was one of the first things ABA taught him

It is just a page, you don't need to join

If you want to try ABA but can't afford, Caudwell charity give finding or there are other charities too (eg Giving Tree Foundation)

Then you can find tutors on aba4all or maybe join the aba-UK yahoo group

We can afford to pay ourselves. (Within reason of course) does anyone know how would we go about finding an aba tutor? Do I put an ad on the FB page?

Oh I'm so fucking shit at computers. I've joined an aba website and there is a tutor who is local but I can't work out how to frigging message her.

www.interactingwithautism.com/section/treating/esdmod

This is an example of a type of ABA that I really like for young children. It is what DS did as I agree with you, some of the table-top stuff you can view on the internet is based on the early science and though research finds it effective, it has been developed so much more since then plus children have been followed into adulthood and the focus is on good mental heath, self-esteem and identity as adults, whereas the 1950's suff before it seemed to be about 'fitting in' (as was the focus of all education of that time).

Which website, let me try and help you

It's this one I have looked and it says click reply or use the persons contact details but I can't see either on the local one I want. I have clicked on others and can see contact details so I'm not sure if this lady has forgotten to add hers or if I'm being dense.

The advert is 'Experienced ABA Tutor available in West Sussex- Weekends'

After looking at the ad for quite some time I am now convinced the contact details are not there

Thanks for the offer of help tho Sick, but I just can't see where they could be. I might do an ad and see if someone contacts me instead.

I'm also currently trying not to get cross with people thinking ds is some kind of rain man. If I get told it's because he's so intelligent and he'll do so well at school once more I may start milling.

I know they mean well and basically have nothing else to say and are probably a bit uncomfortable, but telling me god has given him this gift and he will be super clever is making me want to set my head on fire.

It's okay, we all understand that on this board.

It is miserable having to keep repeating 'No, all boys don't do that!', 'No, he won't catch up without help', 'No he isn't a typical boy', 'No, I cannot yet figure out how his special talent of turning light switches on and off will be useful to him and cannot make the leap of faith and be confident he'll get employment as an electrician on the back of it'.

There is also an ABA Yahoo group where tutors post and those looking for tutors post. Usually people get a consultant first for an assessment and to set up a programme/train parents. Personally, even if you can afford it, I would steer clear of the expensive ones. They tend to price themselves according to demand rather than attentiveness and you want the latter, especially at the beginning.

A tutor with an MSc in ABA can be a very good trainer/tutor though and due to their academic training knowledgeable and flexible in approach (due to their critical thinking training).

My favourite is 'have you tried saying no?' Wtf? Nah, I just let him beat the shit out of other kids and smash up my house, I hadn't really thought of saying no. It's best when they then try to say no, and it means shit all to him. They huff and look annoyed. Like their magical voice was going to make him do as he's told.

My mum gets really cross with him not wanting to wear what she's bought him. She can be very childish if she doesn't get her own way and has very set ideas about things which she would never change or question. She basically sees no alternatives to her way. Last week he wouldn't wear some shorts she was trying to get on him and she snapped 'fine look stupid then, while everyone else is wearing shorts because it's hot, you will just look like a right idiot' I said he doesn't like the feeling on his legs and she huffed 'well he's got to wear them, what else is he going to wear' ummm. Trousers. And she looked as if she hadn't even considered that an option. Sigh.

My parents are moving down to be able to help me. The original plan was they would mind the boys a few days a week while I go back to work but they have now said no and we have realised we don't want that either. But it's going to be hard changing their perceptions. My niece has aspergers and they find her very difficult to warm to. Ds1 is the apple of dad's eye/the boy dad never had, and he is not hiding his disappointment in this diagnosis.