What do we do now? DS1 has completely lost it.

[ScramVonChubby]

Many of you will know about ds1 (Peachy, old anme was deleted) but for those who doesn;t he has AS and has absolutely awful meltdowns. They had reduced recentlya dnw e were thinking of asking for DLA to reduce to middle rate; ha frigging ha.

We are now at a meltdown or two a day: each one lasts two hours or more. I am bruised, DS4 has a amrk where he got caught between ds1 and a makeshift whip (that was an accident in fairness), ds2 has a cut face and ds3 is terrified. We have already mvoed ds3's bedroom downstairs to the dining room as he is vulnerable (more severe autism).

To describe a meltdown he absolutely seems to lose control; it's not a tantrum. he often crawls or bounds around on all 4, squeaking or shouting odd words. His eyes anrrow and flciker, and his voice changes. He is lovely, caring to ds4 and articulate when doing OK, understanding and empathic even. Then it goes- her eprcceives a lie (yesterday it was because the shop ahd run out of yugi-oh cards which meant I was liar as I had said he could have a set.

During writing, I have been given a set of fingermarks in my arm, we did put him in locked roome arlier for a bit (SSD approved) but he climbed out the window and scaled a back wall. Preservation area, cannot have window locks.

For some reason he has donned a curtain as a cape, that's always a bad sign, as is a mask. Why?

He also admitted he hss tried to poison a kid from school (another asd chiuld) with cleaning stuff in his drink, but school won't believe me if I tell them.

What do I do? SSD don't care, just ignore us and walk away; he already ahs a school hols club in place which is the max kids with AS get anyone. I don;t want to risk my smaller boys, but I coudln't bear losing him either.

He is going through transition ATM which I get (one session a week at the ASD Base he will attend from September), but I can't cope- possibly survive- this for several months can I?

Dh says he will support whatever choose to do but isn;t that well ATM and is generally distant. I am on my own on this tbh.

I don't want to teach you how to suck eggs here. Have you had the Sunderland test? Going GFCF has decreased my DS' meltdowns significantly.

We have also had a sensory OT look at him and she said he often had a meltdown to avoid doing particular movements. His ligaments are so lax he constantly seeks sensory feedback and some movements cause him discomfort - so to avoid it he has a meltdown.

Now we know that, managing him has become much much easier.

I don't what else to say, it must be worrying, tiring and extremely stressful.
I hope he's calmer soon

I'm so sorry things have gone this way :( I agree about the Sensory eval. That could help you find ways to calm him down faster and other triggers, perhaps?

I recently went to a Sensory Diet workshop. The instructor was brilliant! Her website is here

DS1 has been cf since he was a few eeks old; 4 / 6 of us have a casein intol anyway. GF didn;t work as he was stealing food or refusing to eat (he ahs been seen for eating disoreders before)

However having now browsed I am thinking yeast free? The symptoms add up but not so much useful info amongst that on random bizarre thrush treatments online.

He does have loose ligaments but never saw an OT, BIBIC advice only.

he is a little calmer now thanks but seems to sort of hover over a meltdown ATM all teh time. I could easily have walked out earlier.

I haven;te ver been to a sensory wrokshop but ahve sat through a few lectures and do ahev excellent notes so will read back and see what i can find; I did get quite a lot at teh time for ds2 and ds3 so will re-read.

Our pediatrician was not at all into giving us medication for possible yeast so I went to probiotics. I order the kind that has 20 billion live bacteria. It must come chilled and stay refrigerated. I break open the capsule and mix it with juice and he drinks it just fine. Other mothers I know mix it with apple sauce.

I have had lots of sensory training in the past that was very good, but this workshop was the first time I left with very good, clearcut ideas and an excellent resource to refer back to. Ds1 has been diagnosed with SPD for about 3 years now and I'm still experimenting with things to help him stay on an even keel.

Practically speaking you could board up a window inside? I think these are desperate times and call for desperate measures-obviously a boarded up window is not great, but you can take them down at a later date.Or you could try a bathroom or something? Is he too big to physically restrain-or does it go on too long?

Have you considered drugs? I know nothing about them, but it must be awful for him to be having these tantrums as well as you?

I think you have been to that centre where they give you a care plan and stuff-can't remember the name-is that worth another go?

Would a weekly boarding situation suit him? Have no idea if that's practical or possible?

I would film his tantrums to show professionals if you think that would help?

I am so sorry for you all that this continues to happen. Sorry if my ideas are useless.

If I'm very honest, I am very very harsh with my as son (9 yrs) if he flips out and becomes violent-I have no problem with shouting very very loudly, carrying him to his room and locking him in and then removing something he is obsessive about-not something I'd admit to most people, but there you go.

Hope things improve.

omg you really need a break dont you bless we know how you feel, nothing anyone can say excepy get someone god knows who a relative to have him for a while this week if you can ive no one to do this myself well ive one friend but she has her hands full with two boys with LD and a disabled husband so i dont like to ask too often but if your ds is as bad this often that may be impossible as the responsibility when hes in meltdowns so serious isnt it and im not helping am i telling you the damn obvious , my DS is a nightmare as we had one of my DS2 mates stay over last night and visitors today so he was so loud /verging on a meltdown ii expect he will be like it all week because of the changes and knowing about begining his new school when they go back

Scram, I don't know what to say.

have you tried any behavioural stuff with him?

would second (third, fourth?) the sensory thign - dd1 had a massive improvement in all areas when we started her on sensory integration.

there have been a lot of posts about retained reflexes on here recently, too - I don't know anythign about that thoguh.

Hi Peachy glad to see you back.
It sounds like ds1 is very stressed at the minute if he is hovering on the edge of a meltdown all the time.
When ds gets like this we go into survival mode so no visitors,no unnecessary trips out, no school if necessary,no added demands. We stick to the routines, have the visuals prominent to reassure him, give him more down time, encourage the trampoline, give him new fiddlies to try, feed him the food he enjoys and try and keep the house peaceful.
Once he's calmer we look at addressing the cause of his stress and learning from the triggers how to avoid the same reaction next time.
We then slowly reintroduce a more normal routine once he's better able to cope.
Don't know if it would work for you though.

Landlord coming twice this week (new ovce, new carpet- nothing other than good LOL0 so boarding up not a possibility; ds1's room that's being carpeted.

DH ahs an appt with GP on Wednesdaya nd is going to force him to record what is happening so if anyone gets hurt we know it's there; also going to push for emergency camhs referral.

And do GF plus YF,

Once again, I'm sure I have nothing to say which might help you - but this is how we view it and what we do to help (but our DS is so much more mild it is not at all comparable...)

Everyone has 'red mist' or whatever once they get incredibly stressed / mad / overwhelmed / frustrated.

Think of that point as 100 or 95 out of 100.

Normally people start off the day at a fairly low level, than as they get stressed throughout the day their levels rise.

But if you start off at 5, and get 30 'points' worth of stress added, you're still fine.

Whereas your DS is probably starting the day off at 90, so 5 points of 'bad things' push him well over his limit.

So, what we do is concentrate on getting DSs base level down.

We do this with all the normal stress reducing stuff:

• Hot bath every night where he talks to me
• Regular bedtime
• Lots of exercise
• Epsom bath salts
• Omega fish oil

Stuff I'm sure you're already doing / tried as much as possible....

Sorry you are going through this Peachy , dd1 has similar meltdowns usually over me saying the wrong thing (dd1 knows far more than me), so far dd1 has been easy to control as she just cries, argues and then self calms. I'm guessing dd1's melt downs will get worse as she gets older and we will need to re-thing stratagies. At the moment i find it best not to talk to her when she's going off on one as i seem to make it worse, today she had a meltdown because she spelt something wrong on a poster she had made, she was screaming, flapping ect, in the end i managed to calm her down by distracting her with a drink in her special cup (a cup with a twirly straw as adviced by her OT) .

Sorry i can't be more help xx

Really glad to see you back, Peachy :)

I am so sorry to hear you are having such an awful time. I also suggest going into survival mode over half-term, focus on keeping other dcs safe, see if you can get someone to take them out and give them some peace and ds a quiet space doing something that calms him. Or else try to get as much help doing your other chores as you can so you can just focus on coping with this. The more supported you feel the more you will be able to stay calm and see what is really going on.

When ds is bad I feel as if I am lurching from one crisis to another and my head gets totally fuzzy, then everything gets chaotic and that makes him worse.

I hired a neighbour's daughter for a few hours a week until she went off on her gap year and while there was lots of stuff only I could do it still really did give me a boost. Now I am thinking of employing a girl who assists at a local special school who is looking for extra hours. I can't really afford it, but I also can't NOT afford it, IYSWIM. I know it would be very difficult to have someone in the house in your present situation unless they were trained but are there periods where your ds is out or could you get help some other way?

My husband attended a talk recently on autism and the speaker said that autistic children who are allergic to gluten can behave like addicts going through withdrawal when it is taken away - they will do anything to try to get hold of it - but after the "cold turkey" is over they are like a different child. He also said that these toxins can make them behave as if they are drunk or "on something" - (I know that elderly people can have hallucinations and appear senile if they are on the wrong drugs so perhaps this is something similar).

I do hope that between us we can come up with something helpful to you and please look after yourself as much as you can. Remember if you are just keeping everybody safe and still looking for answers and hanging in there loving ds and understanding it is not his fault then you are doing a great job under extreme pressure.

Sorry about the meltdowns. Think indigo makes a v interesting point as to high base levels of stress meaning relatively minor issues tip him over edge, hope you get something useful from cahms, possibly anti anxiety meds might help.

If you can't have window locks would social services fund a secure bed? I've seen ones with sides up to the ceiling which is drastic, I know; but if it keeps him (and your other children) safe, would you consider it?

Hi scram the bed that starfish is referring to is called the olaf if thats any help.My dd has retts so differant dx but she had an olaf and i know of others that have sides floor to ceiling.They are very strong beds.Sorry you are going through this.

Sorry I can't really help but if by preservation area you mean your house is in a conservation area then go right ahead and fit window locks. Ditto if it is grade 2 listed.

Honestly no one will check, or know or care unless you tell them.

SSD won't fund anything for us (sorry about delay in replies, did type one this morning but mysteriously vanished being sent across!).

As did the telephone message from Question Time asking me to go in the audience this week; probably an electricty but taking stuff out again, happens a lot. Damn the QT one though !

SSD are nto really involved, they closed our file- the assessment just said 'Mum is capable and can cope' in most boxes, apart from a few bits about DH not being in evidence despite ds1 being sat on his kneee

Neighbour would dob us in for window locks; she got done for double glazing adn has made everyone elses's life a misery, although the glazing was spotted becuase she built her extension into our garden with a massive elevated platform looking right into ds1's bedroom (that she got retrospective permission for, poor kid, freaks him big time).

Hi Peachy, glad to see you're back also.

Sounds horrendously overwhelming. Don't think it's coincidence that there's a transition and agree with other posters that anxiety levels are raised and the slightest thing is triggering a meltdown. When you visit GP perhaps have a discussion around lowering his anxiety levels with something, even on a temporary basis might be useful, although, he/she may prefer CAMHS route.

Not sure what family support you have but wondered about if they could help out with your other dc's so that you could spend extra 1 - 1 time with ds - to see if it helps him.

We use green (ds's favourite colour) playdough to help and he has his own green blanket to cuddle up in or hide under if he's stressed.

Hope GP is supportive and you get some help x

Short term stuff:

Can you get an indoor tent to hide him in?

Throw a kingsize duvet over him and bundle him up tight - pressure, darkness etc

Weighted blanket

Brushing and joint compression

Restraint/bear hug

Kalms/herbal remedies

Lavender scent ie joss sticks, lavender bags etc

Chamomile tea

Hope things get more under control soon