Please tell me what happened last night - ASD - urgent

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DS, 2.6, has ASD, everyone has most likely said AS because his language skills are very very good and he doesnt appear to have any additional learning disabilities. We are still waiting for formal assessment on the NHS but as he is so young we might not get all the answers for a while although fucking NHS we are on our 4th referral now. Dont get me started.

Last couple of weeks has been really hard I have pneumonia so routine has been thrown out a bit & DS has been not well. But the meltdowns are getting so much worse. He is getting so violent its unreal, and completely unreachable.

Long story short - I am so short on sleep - last night took 4 hours after putting him to bed to get him in a state we could even communicate with. Basically he just wouldnt settle, wouldnt sleep, wanted juice instead of water or soya milk which I was reluctant to give because of sugar at night etc. It was just awful. Then as time wore on he got more and more violent and distressed. We tried everything. We left him alone, we didnt look at him or talk to him (he screams dont look at me, talk to me etc)

He wanted to come into my bed and I finally said he could but only if he took some medised first. I said this because I felt he was acting so totally out of character that I was worried he was getting under the weather again and I wanted it to help him sleep. It took another 2 hours to get him to take the medised as he doesnt like the taste. I felt we had to stick to that though as otherwise I thought we would have a night with no sleep at all and it had all gone so terribly wrong I was just trying to patch it up enough to get through the night.

When he took the medised we got into bed and fell asleep. It was me & him, DH was still up. An hour later I woke up because he was kicking me. I tried to soothe him thinking it was a bad dream. He was kicking me more and more and hitting me and just raining down hands on my head. DH came in as he heard the noise. It just got worse from there. He wouldnt let us touch him or talk to him and we had no idea what was going on. He just woke up like it. It lasted over an hour, and he crawled around the room crying and sobbing and we just sat there on the floor to make sure he was safe but couldnt do anything else. I am sure we tried things I havent mentioned here please just ask if you are wondering I am truly exhausted. It was awful watching my poor baby so confused and distressed. Eventually he started to wind down enough that we could approach him so I held him on the bed - he was in front of me, his back to my tummy - he was between my legs with my arms & legs wrapped around him and I held him there until he fell asleep.

DH and I talked about what had happened. Then I tried to lay him down next to me so we could all go back to sleep. He woke up and it started over again and I instantly went back to the restraint like hold and stayed in that position for around an hour til he was so fast asleep I could lay him down. We then slept a good 5 or 6 hours til just now.

What is happening? I thought of AS as making him socially awkward. He is more and more like what I think of as more "classic" autism for lack of a better word. I am confused. He is getting totally locked up in himself and violent and impossible to manage it has nothing to do with socially awkward and everything to do with being autistic. Please help. What is happening. I am already on the plan to help things as of tonight such as making a chart to show him routine... although I didnt think we needed one as we have had the exact same routine for over a year and never deviated from it. And cards to show emotions. Are colours a good idea?

we had dinner before on a picnic on the floor. and we usually eat it at the table. but I didnt think such a fun little thing could cause any problems. It was just a spontaneous thing. Other than that routine was normal although DH gave him juice to sleep with the other night which obviously set a precedent in his mind and am I right in not giving him juice at bedtime?? I am not overly precious but I am trying to cling on to some authority and also his diet is just not as good as I want it to be. We try but he refuses to eat most foods, even try them, if he does try them he usually gags and spits them out.

Sensory overload - that is an ASD thing. Is it an AS thing too? And the violence? And the waking up with it?

I'm probably the wrong person to try and answer this as DS's problems are primarily language but anyway....

the dividing line between AS and HFA can be very fine - sometimes depending just on what age a child first spoke at! Sensory overload can apply to AS just as much as ASD. Some people find that dietary changes - such as going gluten and casein free make a big difference to behaviour - not sure if people have discussed that with you on other threads.

Sorry you had such an awful night. I think you were right in not wanting to give him juice to sleep with from a dental point of view. And it does sound like you are doing all the right stuff in dealing with the meltdown. I think once the meltdown point is reached there really isn't much you can do - it's more a case of trying to identify potential triggers to head one off.

thank you for your continued help. You have all been so good to me since this has all started. I am feeling terrified though I just didnt expect this and dont know what is happening and feel I am losing all control over how I raise my son and how to make him a happy person. Which is all I care about. But he isnt happy. He is such a sweet child and when he hits me and kicks me so badly I think he really feels it & blames himself. I feel awful for him.

We have cut milk out. He normally has apple juice but we ran out of it yesterday & replaced it with a juice full of colourings as it was all we had in the house. So we will get him pure apple juice again today. I am about to go out to the dr for a check up for my pneumonia & I am going to pick up a journal to write all this down in to keep a record.

I am beginning to also live in fear of the police knocking on my door because his meltdowns are so loud and horrific sounding it sounds like he is being tortured and I am scared the neighbours will say I am abusing him. The NAS is posting me some leaflets on ASD I am going to give them to hopefully explain the noises. Is that a good idea?

I wouldn't worry about police/SS etc - as it's going to be clear from anything overheard that you're not hurling abuse/hitting him etc. Don't see anything wrong with handing out the leaflets/having a chat with neighbours.

What an awful night for you all. How are you feeling?
I would say possibly a sensory overload, picnic, new eating position, new way of serving food. Possibly also the juice he had a few nights ago changing his usual routine, and him wanting to keep that change?

Would your ds understand any visual aids? Maybe a visual timetable in plce for bedtime incase it ever happens again. I know ds2 blocks out sounds when he is upset but will calm down slightly when shown a picture/timetable enough to listen. Maybe have a picture of milk or water ready for if he does ask for juice tonight?

DS2 was really ill last week so we tried to give him his favourite foods so he would at least eat something. He didn't eat for 3 days! Because he didn't eat the food last week, he has been asking for it ever since, which has been really hard for us, as he keeps repeating the same thing over and over again, and has had loads of meltdowns. More than I care to handle tbh.

Hopefully he will sleep for you tonight and last night was a one off.

I'm not the best person to ask as my DS is still in assesment, and like Tc his probs are mainly language.

But have you though of plain and simple night terrors? He is at the right age, although it does sound like an extreme reaction. was he definately awake?

My d.s who we think is n/t is 2.6 and we have been through 3 months of him having a poor sleep pattern after being a 7PM-7AM sleeper previously. He was really bad not settling, head butting the floor, hitting, biting, screaming the house down. It has taken time but he has started to settle down again. Fingers crossed that is the end of this phase as we were all absolutely exhausted by it.
Are you in contact with the paed, could you ring his secretary and ask them to call you?

Some thoughts. Forgive me for going through this stage by stage - it helps me to think.

"I have pneumonia". Goodness me, you'll have been behaving differently even if you don't realise it. That's a big stress for any ASD child. And even small changes of routine if not announced and explained can be a really, really scary thing - like finding ourselves on a mountain we've never seen before with no ropes or handholds and a thousand foot drop below us. To you, it's just a small change, but to us, it's just horrifying until we've seen it hundreds of times and can get used to it.

"DS has been not well." This will tip just about any and all of us into meltdown or shutdown, and we're really bad at describing why.

"he refuses to eat most foods, even try them, if he does try them he usually gags and spits them out"

Sensory issue. Taste, texture, hot, cold, smell...yes, these are huge things for those with AS as well as autism. He's struggling to cope with foods that taste like eating a poisonous brillo pad to us.

"DH gave him juice to sleep with the other night "

Change of expected routine. No ability to think about why this is, so now he's not at all sure what's expected at night. With you not well and him not well, I expect this was a 'final straw' for him.

"we had dinner before on a picnic on the floor. and we usually eat it at the table"

Oh my. I can feel myself getting unsettled, and I wasn't even there. It's new, it's different, it might happen again unexpectedly. Food equals table and chair, and now it equals floor. Drink equals water/milk, and now it equals juice. I can see that his whole world would feel as if it was totally scarily changing.

"he got more and more violent and distressed."

Yup.

"he screams dont look at me, talk to me etc"

Desperately trying to reduce the sensory overload whilst he's not well, and get some sense of normality back again. He's trying to get you to do the things that would help him.

"It took another 2 hours to get him to take the medised as he doesnt like the taste. "

For us, a medicine that tastes bad to other children is like being fed pure acid. His observation would be that you are trying to kill him. I know you're not, but to a child that young with sensory issues, this is the reality of how it feels.

"We got into bed and fell asleep." Now he has you to cope with in the bed. You move, you wriggle, you're hot. More sensory things to deal with. More overload.

"An hour later I woke up because he was kicking me.. hitting me" Yup. He's trying to say "hell, the sensory overload is so much, I need everything to stop - all the hot/cold, all the changes, all the textures and sounds and etc" Your breathing is probably louder than an express train to him. Every time you move, it feels like an earthquake. It's so hard to explain how our world is different to yours.

"DH came in " And now there's more sound, more social information being added to a totally utterly overloaded system.

"He wouldnt let us touch him or talk to him and we had no idea what was going on
he crawled around the room crying and sobbing "

Yup. He probably would.

"I held him on the bed - he was in front of me, his back to my tummy - he was between my legs with my arms & legs wrapped around him and I held him there until he fell asleep. "

Eventually sheer exhaustion overcame the pain of all of this for him.

He needs his routine back. Or really, really clear advance information about what will change, how long for, and when it will go back to normal again. And he's not well and probably will turn out to have an earache or something similar which he can't explain.

You could do with that diagnosis and some expert help in setting up a system for him.

Please don't feel bad about any of this. Every parent would do what you've just tried to do, but handling us when we're not well is really, really difficult and often the exact opposite of what you think.

If possible, a really quiet corner with a something to wrap himself in. No eye contact, no talking to him. A favourite toy or activity. Take his temperature to see if it's that. Use pictures not words to convey information to him if he's struggling.

And have a well deserved cuppa. Goodness, you'll need one.

brill post amber, makes so much sense when you see it explained like that.

Wow. Amber that is really clear.

Just one thought - It seems that the first 4 hours centred around juice. Then the next 2 about Medised. But actually understandable if you think about it in terms of "not doing what I want" for 4 hours, then "making me do something I don't want" for 2 hours.

The next bit, after he had slept, sounds a bit different, though. Has he had Medised much before? We used it with DD, but I know some parents on here have found that their children reacted very badly to it. I wonder if perhaps it didn't help?

Have you spoken to the paed re: his sleep? Ours has just prescribed us Melatonin because DD hasn't been settling at all well and then wakes in the night for hours.

Oh, and even if you get it wrong sometimes, you need to remember that you are doing your best and you haven't got the instruction manual for your DS. Think of it like a machine - you are just pressing buttons and looking to see what happens. Sometimes you will think - that was good. Others you will think - never doing that again!

hi there, sorry you've had such a rotten time. Have a look on the juice label - does it contain aspartame? I'm always going on about the effect it had on ds1, although we never had a night as bad as the one you've just had.

I also avoid giving Medised or Calpol if at all possible, and have heard that Medised can have a really strong effect on some children. Calpol is rammed with colours and nasties. I wonder if the combination of both just tipped your ds over the edge.

Just a thought - do you give your ds neat juice usually, or is it watered down? Have also read of apple juice causing reactions in ASD children (starting to wonder what doesn't!!) so might be worth changing to something else for a while, or watering it down more and more each night.

We are a bit further down the line as ds is now 4.5 and I just want to encourage you that the aggression may very well settle down as he gets older (can't guarantee it as know two ASD children are the same but an expert told me that the worst behaviour in ASD children will be seen between 2 to 5 years old).
Ds was very angry and aggressive when your sons age. Now he is virtually not at home, and will say sorry after if it happens. School is much better than last year, but aggression is his default position if he is overloaded (i.e christmas was a mare as he also had chicken box brewing and all the change of routine with the festive season).
So just an encouragement to take one day at a time (and with pneumonia and this you would not be unreasonable to feel very low). And to have hope that it might very well calm down and improve as he matures.
You are brilliant Amber, what a good description.

Is my Ds 3.9 ASD very unusual in that he doesn't mind changes in his routine and actually quite likes doing different things and seeing new things?

oh what a night you had, for you all! have you got your ds a weighted blanket? might help in calming him down?. amber that was an amazing explanation on sensory issues, first time ive really understood it.

thank you very much everyone for your support, and of course Amber for explaining it so thoughtfully. I really appreciate it. Just got home and put DS down for his nap.

In no particular order - Amber how do you give a child medicine if they hate it so much? I know medised isnt in the strictly necessary catagory but sometimes things like calpol or antibiotics are. We always offer a bribe for him & reward. But I dont believe in forcing him, forcing something into his mouth, no I wouldnt do that unless it was life or death for him.

He told us he doesnt like his soya milk so we have got him goat, oat and rice to try each and he can choose which one he likes. Are they all equally good for him and I assume cassein free? We will be giving him a multi-vitamin supplement.

The juice he had recently that he isnt used to definitely had artifical colours & flavours but I do not think aspartame as we never let the stuff in the house, or any artifical sweetener. But it was still crap juice that he isnt used to and I would definitely say it had an effect on him. We have stocked up again on the pure apple juice & we always dilute it quite a lot.

Tell me what to do tell me what to buy anything I can do I will do. What is a weighted blanket? Just a heavy blanket? I will buy one online today, do you recommend any? Will it distress him as he doesnt want to be touched when he is in a meltdown? Tell me anything at all I am missing. I am totally broken down at the moment and will literally do anything to suit him and make him happy and stable so please just if there is something you think I should do tell me and I will do it.

So sorry for sounding so down I am just truly exhausted and last night scared the shit out of me. Will perk up in a few days at the moment its all I can do to stay happy in front of DS as he isnt around now I have deflated.

that does sound like quite a night, HIDTL. I'm sorry that things are still tough.

On the medicine front, I use a dosing syringe to get it into dd1 when it is absolutely vital, however she rarely gets given medicine now, as it is such an upheaval for her system, and on the whole does her more harm than good (it is notpossible to get sweetner free calpol anymore - event he sugared one has sweetners in it)

to start with using the syringe, i did have to hold her down (well, in a big hug really), but she soon realised it was my way only (sounds awful, but as you say, sometimes it is just necessary). I always bribe, so medicine first, then chcolate (or whatever will work), and have the choc ready to give immediately. dd1 is so used to the dosing syringe method now, that she will take anything form it, but I do use it twice daily to give her her supplements.

have ou had your Sunderland results back? only, if he does turnout to be gluten intolerant you won't be able to use the oat milk, so you might not want him to get used to that one. goat's milk does have casein in, but the protein is a slightly different form - if you search for A1 milk vs A2 milk (either google or on here) then you should get some info. Some people are able to use goat's milk for their dcs.

Apples are something that it is said that a lot of ASD children react to. i use a pear/pineapple mix for dd1 (citrus also not good if there are gut issues) but it is a bugger finding it. But you might want to consider that too. the really bad night may well have been in reaction to the juice with colours etc - dd1 always reacts to colours and flavourings, and used ot be really bad when younger.

weighted blankets are blankets with weights sewn in, you can get different weight ones, depending on size of child. they are quite expensive, so you might want to try with a heavy weight blanket or duvet first to see if it helps. the theory is that deep calm even pressure can help soothe. dd1 does not like them much, and instead seeks out deep hugs from (she likes to be held tightly and securely - which is a struggle after half an hour or so )

FWIW, I would not have given in on the juice front either (and have recently had this battle with dd1) dd1 has been ill, and woke early coughing so I got her a drink. For a few nights after, she was asking for a drink as she went to bed (post teeth cleaning, and she will only drink juice, so i don't like to give her one then). We refused and had the mother of all tantrums, but it worked and she doesn't expect it now. Our behaviour consultant told us to try to keep one step ahead of things that might become a routine, and try to head them off. So try not to do anyhting twice in a row (especially if it is these "out of routine" things) ie pick the routine you are happy with, and can keep up with in daily life, and stick to it. Build in variations, but never the same variation twice. so dd1 had her uice because she needed it, but when she asked a second time she didn't need it, and only wanted it as it was formng a routine for her. So we refused it.

weighted blankets are blankets with special wieghts inside, some asd kids find them soothing and calming( good for meltdowns and sleep issues) you can get neck scarfs/lap pads/weghted teddy bears/ and blankets. the ones with the plastic beads inside are the best because they can be washed! are a bit expensive but defo worth it! i tried a microwave beany out first with my dd4, to see if it was "right" for her.and it works a treat,(shes very small and uses it as a lap pad/neck scarf) .also have you tried melatonin ? you get it on prescription fron the peadi.its fab helps them get to sleep and stay asleep, but it not a sedaitive.works much better than medised! dont appoligies for being exhausted- we've all been there!.

can I say something which may be relevent
If you are taking out casein he may be going through a type of withdrawal. My son definately did and it got way worse before he got better. took about a week.
Goats milk absoloutelt does have casein in.
And my child reacts to juice too - especially apple which makes him unable to sleep. And medised and calpol make him self harm they affect him so badly ( and phenergen which we tried at the start of a long flight - big mistake. I simply don't give DS2 medicine.

If you are changing his diet have you looked at Diet Intervention and Autism which covers some of these issues - especially withdrawal. And also the AiA website ( www autismmedical.com. Marilyn Le Breton is on there and she is a mine of info and support . Also yahoo group gfcfkidsuk

Finally - I know it sounds awful but when DS2 gets overloaded I have learnt that I really just need to back off - be still and quiet and leave him alone

I am buying a weighted blanket now I just cant decide between trucks pattern or a plain colour. I know it sounds really stupid but I just dont know which one to get & I cant think of anything else right now. I mean with plain its less sensory input. But trucks are exciting and might be what gets it past the DS-Check! Please help me decide.

agree with pagwatch that sometimes the best thing to do is leave them to it (maing sure they are safe)

if dd1 is having a meltdown, i tend to withdraw totally, and check every so often that she is ok - a quick hug and an "I love you" (she calms down instantly when I hug her, only to ask for whatever set the meltdown off again) and then I withdraw again. She needs the space to calm down.

It is very hard to do, but it does work.

On the blanket front - do they have his favourite plain colour? I'd be tempted to go for that myself

really good point about withdrawal pagwatch, I seem to remember the Uni of Sunderland pamphlet mentioning that, and that the stronger the withdrawal symptoms initially, the more likely the change of diet was to help long term. So take heart from that.

BTW I'd get the plain blanket unless your ds particularly likes the trucks.

we got the trucks because he is famous for rejecting fabrics & we are hoping as he really loves trucks it will ingratiate it to him. Sorry that sentence didnt make sense.

We havent done the sundlerland test yet - the reason is me getting sick with pneumonia & he got so very bad we couldnt wait any longer so took him off cows milk. Do you think it is still worth me doing? They will tell us all about gluten etc as well wont they. But he isnt on cows milk anymore anyway.

Thank you for telling me about the oats milk & goats milk any more info on that will be appreciated.