Starting to Stim - what should I be doing?

[MooMummyMoo]

More of a lurker here but hoping people can help.

My daughter has a chromosome disorder (Cri du chat) causing severe learning difficulties and developmental delay.

She will be 2 in December and I have noticed increasingly that she is starting to stim. Well, I think that's what she is doing - hitting head, rocking, grinding teeth...is that stimming?

With the grinding teeth we have always been very strict about trying to stop it but the other things she does I tend to just ignore. First of all, is that the right thing to do? But I also have a multi-agency meeting (first one) coming up and I wonder should I raise it here and ask for anything specific to help?

Is this where Sensory Integration Therapy type stuff can help or have I got the wrong end of the stick? I was going to ask SALT if we can try one of those chewy bar things but I am not sure what else could be available or if there are specific techniques we should be using etc.

Does anyone have any advice/experience?

Many thanks
MooMummyMoo

I would very much be in the camp for stopping stims early on from developing into ingrained habits. You are getting in nice and early if you start physically blocking the stims now before she is even 2 - stop them hand over hand or with a firm "no" and holding her still. That said, some of my son's stims have come and gone over the years without me intervening too much (he doesn't teeth grind any more, for instance, though I did go through phases of trying to stop him by holding his jaw). But stuff like headbanging can become very problematic if you don't block it early enough. The idea is to stop it EVERY time it happens, so that eventually the good feedback she gets from the stim is outweighed by the annoyance caused when you keep stopping it and saying "no". Eventually you "disrupt" the habit, before it takes hold.

I never found any of the sensory stuff much use, but other pals (whose kids are perhaps more affected by sensory issues) did find it useful. I also didn't find chew toys much use, as they seemed to just replace one stim with another, rather than tackle it head-on.

My boy's main stim used to be jumping up and down handflapping. It looked cute at 2, but I am so glad I stopped it as he is now a big, strapping boy and it would simply mark him out as "odd" and narrow down his choices in life, not to mention encourage bullying and name-calling by other children. I also think of him as an adult and how it would look if he was bouncing and hand-flapping at 12 stone and 6 ft 5!.

I was told a lot of old guff about how I shouldn't stop his stims as it was "cruel" or "he has a sensory need to do it".

My view was - bollocks. I had a sensory need to suck my thumb as a child, but it doesn't mean I do it now. I always think of my DSD, who used to rock back and forth with a loud, low buzzing sound whenever she was excited. Her mum stopped her every single time she did it, it had no bad effects, and now she is as close to a normally functioning teenager as it's possible to be. She would be mortified if her friends saw her still doing that stim, because some well-meaning but patronising "expert" had told her mum it was 'cruel' to prevent her doing it at age 2.

Good luck.

I find redirecting a good strategy most of the time, the less they do it, the less likely it is to form a habit, although it's not easy. I'm new to this too so would be great to hear others experiences.

my son ASD used to teeth grind and it would drive me bonkers, he stopped doing that and started nail biting and chewing his sleeve, hes now still nail biting and wiping his mouth with his school shirt collar. im wondering what he will start doing next!

Thanks everyone for your help. I think you are right, I should be trying to stop all incidences. I actually found myself yesterday telling off her younger sister who was rocking in the highchair, yet when DD1 is doing it in her chair I have been letting her do it! And there I was thinking I would try never to treat her differently (or where possible anyhow)!

So a kick up the bum for me and onwards to a day of saying No!

I don't try to stop a stim unless it if doing some damage, incredibly annoying, or affects other people. IME as one stim goes it is replaced by another.

Increasing sensory stimulation can, ime, help reduce stimming as well. Do you have a sensory program in place?

Agree with saintly it does depend on the stim and apparently if you stop one, another will replace it...so I guess ignore the semi appropriate ones. Complicated isn't it.

Saintly what's a sensory programme?

Agree. It depends if the stim is or has potential to hurt them.

I know that trying to stop my children from stimming causes them a great deal of stress. Unless they are doing something hazardous, it is less harmful to them to just allow them time to stim.

My eldest is now at the stage where he can hold in the autism at school and go stimming his way round the house when he gets home. He NEEDS to stim. To try to remove it from his life would cause him great distress. It's about managing it.

A sensory program is just something that supplies whatever sensory need your child has. DS1 is very sensory seeking so responds well to deep pressure and massage and bouncing etc. Some children are very easily over stimulated and might need something calming. We used to roll ds1 in duvets etc, now he's definitely less stimmy post surfing.

He's always liked swinging. He's a big for most swings/parks now, but he has a hammock chair in his room that he sometimes swings in. It sounds as if your dd might benefit from lots of swinging (which could reduce rocking). The out of synch child has quite a few ideas in for sensory stimulation.

I agree with jimjams- i try not to stop dd's stimming unless its harming her or others, stimming is often sensory seeking or self calming. Ask to see an occupational therapist and they can set up a sensory programme. My dd now has a sensory programme which involves a lot of deep presure, mouth exersizes (blowing and sucking) as well as movement. It has helped her a lot and she now stims less (although she does still have days where she stims all day but often its because she is tired or unwell).

Thanks saintly I understand. We are doing oral motor activities, massaging his hands and rocking/swinging, so I guess that's our sensory programme, just hadnt heard it in those terms.

Totally agree with Hecate I do notice an increase in ds's stimming when he's more stressed and I don't wish to add to that stress but trying to stop him doing something that's essentially harmless. He does a lot of the "classic" things like rocking from foot to foot & hand flapping. Sometimes I do get a pang when I see this but I always try and look at the bigger picture. At the moment he's knackered out from school and we're just trying to get to half term in one piece

I agree with jimjams. If you have an OT, talk it through with them. Our OT gave us this brilliant sheet with a 'sensory diet' for ds1. She also wrote to the school with a list of sensory activities to be carried out there before lessons to keep him calm and focused. They can run a sensory profile test to determine where she has sensory issues and where she is seeking input.

If I tried to stop ds1 altogether he would get very stressed and probably eventually melt down. He'd be stuck sitting in a corner staring into space. He rocks, flaps, fiddles, strokes cuddly things, plays with his mouth. I've only ever tried to stop the ones that are harmful such as when he started slapping his face. As he has got older the movements seem to have become smaller and less noticeable, but then that might jsut be my perception!

If you want to dm me with an email addy, I can send you a copy of his sensory diet actually, to give you an idea of how it works.

I think actually how you deal with stims depends on how they will affect your child. A child who is high functioning might be affected by the oddity of stims - in that they might be bullied because of it etc etc, but tbh for someone functioning at ds1's level it really doesn't make the slightest bit of difference. He's not trying to blend into a social situation, he has no understanding that he looks odd stimming and cares even less. If another child laughs at him for stimming he doesn't notice.

Some stims can make his anxiety rocket and so we'll stop those, and also for the other reasons I mentioned, but never just because it looks odd. That's not really a consideration for him at this stage. Sometimes we have to remember to let school or respite know - for example he had a stim recently which involves leaning forward and clutching his stomach - easily mistaken for being a sign of pain (it isn't - it's a stim). And at the moment he keeps rolling his eyes and flicking them.

Thanks everyone for your replies. Gosh it's a minefield isn't it! I guess we'll carry on with stopping the teeth grinding (which I just hate!) and maybe be less bothered about the others.

We don't have a sensory programme in place. I have to admit I didn't know to ask - that's the great thing about this messageboard I suppose! - I'll get on to the OT about that though.

Thanks all for your help and input

MooMummyMoo