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Here are some suggested organisations that offer expert advice on special needs.

1 2

Here are some suggested organisations that offer expert advice on special needs.

SN children

Fingers in/underneath ears

28 replies

Blossomhill · 31/05/2005 14:07

I posted this in my weekend thread but just wanted to see if anyone else may know anything about this. dd (5) has always put her fingers underneath her ears since she was a baby. Recently it has becoming more and more and on our holiday this weekend was constant. Now I know it's a sensory thing but how on earth can I help her as she seems to be doing it all of the time. She found it very hard on holiday in the club and had her fingers firmly in then. Just would be nice to hear from anyone else who has had this.

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Jimjams · 31/05/2005 14:14

BH you can't stop it! Unless you keep her out of noisy places. But it's probably better that she accesses them. Or try ear plugs? If she'll tolerate them.

DS1 does this (just been to pick up ds2 from nursery and as soon as we walked in the door finger in ear until we left).

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Jimjams · 31/05/2005 14:24

or you could try AIT but it's pricey

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Jimjams · 31/05/2005 14:25

try again

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Blossomhill · 31/05/2005 14:34

Jimjmas - can I confess something to you???? I do take her fingers out of her ears sometimes
I just can't stand people staring at dd
I know that makes me the world's worst mother doesn't it?
Does your ds put them in his ears as dd's is just under her ear lobe. Apparently changes the way things sound!

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Jimjams · 31/05/2005 14:56

He puts them in his ears, or sometimes (more often I guess) he folds up his ear lobes so they cover the hole. Sometimes he claps his whole hand over them.

It doesn't make you a bad mother. I tell ds1 to stop doing odd stuff (like sniffing people- when from a sensory point of heading towards verbal language view he would probably benefit from being able to sniff people- it's not a socially acceptable habit though so I stop him when he does it) You do need to sort out the embarrassment factor though- when you are out and about you have to do what's right for your dd and not give a stuff about what people are thinking, otherwise you are going to find going out harder and harder and that's no good for your dd. Do you have anyone in RL you can talk to about incidents- get it out of the system so to speak? Or any chance of counselling?

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coppertop · 31/05/2005 15:02

Ds1 spends a lot of time doing something or other with his ears. He either has his hands over them, folds the lobes over the hole or he (bizarrely) tucks the entire outer ear into the hole.

Ds1 already gets odd looks for the way he walks so most people don't notice the ear-fiddling. I must admit though that there are times when I do tell him to stop doing something when we're out and about.

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Blossomhill · 31/05/2005 15:03

I know I need to develop a thicker skin jj. I have had counselling and it was good but hasn't really changed me a lot, unfortunately. I went there to talk about dd and ended up having my really happy (well I thought it was until I went there lol) marriage dissected!!!!

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Jimjams · 31/05/2005 18:58

ds1 folds his ears inside out a lot.

Not much use then BH? Actually that is a problem- I don't think a counsellor would be any use to me unless they really understood autism as they would just say stupid things. Do you have a RL friend in the same situation you can talk to regularly?

Or how about a referral to a clinical psych to talk through dd's behaviour? Some are good.

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Blossomhill · 31/05/2005 19:09

Hi Jimjams

It is so hard as dd has a language disorder dx but I do see asd traits in her. As you all know too well dd doesn't have an asd dx but I do see similarities which is kind of confusing for me!!!
I went to Afasic meeting and there were lots of parents who had children like dd with the communication difficulites but no firm dx. Some of these kids were in there teens with that vague dx!

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Jimjams · 31/05/2005 19:21

I think you need to forget the whole asd thing. It doesn't tell you anything about the child anyway. Look at the diversity of children on the spectrum on mumsnet. DS1 is most like Davros' ds, but only because their level of need is sinilar. Different things will make them tick/set them off, and he is planets away from a child with HFA/AS. I suspect your dd is closer to children with AS?HFA than ds1.

In all my reading about autism (by autistic authors) I've only come across one who is like ds1 (Lucy Blackman - amazing). People like Claire Sainsbury have very real, but very different problems from ds1. So different they don't really relate at all and the fact their dx is the same is completely irrelevant. Claire Sainsbury went to Oxford (iirc) and has to deal with the whole emotional side of being AS and not fitting in. DS1 meanwhile doesn't have much in the way of wanting to fit in but we are desperately trying to instill self-help skills in him and to teach him to be as independent as possible (being able to be left unsuprvised for 5 mins would be a start). Oxforde may as well be on Mars. Point being that the dx tells you very little about the child.

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Blossomhill · 31/05/2005 19:25

Yes I know what you mean. However as a parent without a definite diagnosis it is harder to find support groups etc with people whose children have similar difficulties. That's why I have started one up at dd's unit

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Jimjams · 31/05/2005 19:28

I don't think you're missing out. I find the support group at ds1's school (wildly different dx, but similar levels of need) to be more useful than any ASD one I've been to where people are talking about their children taking GCSE's (different world).

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Blossomhill · 31/05/2005 19:30

Yes I know what you mean. Especially with regards to the spectrum. HFA and classically autistic children are so, so different and I think that is what causes the confusion.
I do find that dd has similarities with children with AS and HFA and have even posted on a few sites for advice.

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mum38 · 31/05/2005 21:08

hi. Just wondered if distracting dd with something to hold in her hands would work? Ds2 has habit if picking his nails esp. if he is stressed or trying to conform (assembly etc). Out of school I try and have something with me I can ask him to hold (shopping list, small toy that needs looking after etc)-if I take his hands away or tell him no it just makes it worse. At school they gave him a ball of bluetack in assembly which helped up to a point but he started throwing it around so it got taken off him in the end! You have probably tried all this but just an idea.

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Davros · 31/05/2005 21:56

I think you've got 2 issues here BH.

First a couple of DD's specific behaviours you have mentioned, Ear pressing/covering and eating things of the floor. There are various practical ways you can tackle these, one being the excellent suggestion of giving DD something else to do with her hands (a variety of things, what about scooby doos ), social stories, rewarding NOT dong the behaviour possibly with a star chart or similar, trying to teach a different/substitute behaviour, avoiding situations when the behaviours occur such as overwhelmingly noisy/stimulating places etc etc.
Second your feelings about these behaviours, other behaviours that may come along in the future, how you feel about the whole SN thing and non-dx. I suppose there are also practical things you can do about this and you have already done things like seen a counsellor, starting a parents' group at school. I don't know what else to suggest on this one as there's no point in someone saying you need to try to feel differently, not only is it not necessarily possible for you at this stage but its not very sensitive or helpful either. Do you feel like you've made any progress on this area? I'm sure you have, given the things that you've already done. "Growing thicker skin" doesn't happen overnight and, if you're not that sort of person, then you're not. All I can say is that I suppose the emotional side does get less difficult over time, not because it ever goes away but getting upset does seem to happen less often and over less minor things. You can also treat how you feel as perfectly OK and just not worry about feeling like you do as its natural.

I'm not sure any of this helps . x

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Jimjams · 31/05/2005 22:55

Been thinking about this.

I don;t think its possible to grow thicker skin if you;re always around normality (for want of a better word). You may find that AFASIC allows you to meet the right people that'll make it easier iyswim. Get the phone number of anyone you like then get ringing and moaning! (I do every day)

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Blossomhill · 31/05/2005 22:56

Jimjams - it is so hard as I have ds (7) as a constant reminder of how different dd is

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Jimjams · 31/05/2005 23:08

yep - I have that as well - ds2 steamed past ds1 years ago.

But that's why you need to seek out people who do understand (even better if they understand that aspect as well.) I know what its like because I live it as well, but having someone real and local to you living it would make it heck of a lot easier I'm sure. When I ring my friend we end up laughing about the awful behaviour even if it was hideous at the time, but minus them it would be hard to laugh sometimes. The lovely thing about meeting people in the same circumstances as well is that the relationship is equal, you just happen to have an extra bond. I think the Afasic thing is a great idea- and all you need to meet is one person you really bond with to make the biggest difference.

We should have a meet up- I can guarantee ds1 would be more hideous in public than your dd and you could go home thinking "well thank f* for that" And everyone would be staring at him (and to be honest I really don't notice much these days- one of our neighbours I'm trying to get friendly with gave him a really hard stare today when he was being odd around his front door, but I smiled sweetly and decided to explain another time. over 90% of people are reasonable when you get a chance to explain).

Actually the fiddle things suggested earlier is a really good idea re the ears - I always forget to suggest that as ds1 doesn;t have the attention for them when out and about but I know children they work well with. And if your dd was able to focus on something else it would prob lower her anxiety and reduce the need for the weird stuff.

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Jimjams · 31/05/2005 23:16

the other thing you could try (and here Davros will start wincing ) is homeopathy. If you can find a good one, the session allows you to talk without all that "tell me about your childhood" type stuff. And the remedies help. And you don't have to go very often.

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Blossomhill · 31/05/2005 23:23

Thanks Jimjams I would love to meet you and your family but how????
We need a massive special needs meet up
I do feel as though dd is getting worse but better in some ways. I think I have been in denial for too long tbh

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Jimjams · 31/05/2005 23:28

ahhh don't know about denial, but problems can take a while to sink in. I spent ages thiking that ds1 would catch up- my cut off was 5 and on his 5th birthday I cried and cried. It's only in the last few months that I've come across stuff written by peopl as severely autistic as him that I've felt able to accept him completely as he is. But then sometimes that feel like giving up on him.

Give yourself time, I was in denial in one sense (thinking he would make great bounds) I guess until he turned 5 (and he's completely non verbal so that's some hope I was clinging onto iyswim). Don;t be too hard on yourself. At the begining of goerge and sam nick hornby talks about seeing his son doing something and laughing whereas a few years previously he would have cried. I do feel like I'm at that stage now, but only just (and watching the gap widen was the hardest part).

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Jimjams · 31/05/2005 23:29

holiday in Devon. Lovely part of the country !!

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Blossomhill · 31/05/2005 23:38

Oh yes Devon, I would love to go there .

No I do find it hard to accept and often wish I could have a crystal ball and other times I'd rather not know.
I spoke to the head of dd's unit one day and ended up in floods of tears. I said she is getting worse and they said no dd isn't getting worse but the other kids her age are getting so much better with there social skills!

I have accepted that dd will have problems for life and as hard as it is I feel better thinking like that. For so long I blamed it on the glue ear etc. and I know now it had f* all to do with it.

Can you not make London Zoo Jimjams {smile]?

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pixel · 01/06/2005 00:13

Jimjams, sorry to butt in but I had got the age 5 cutoff thing in my head as well (must have read it somewhere), and as my ds has just turned 5...

Anyway. I mentioned it to his headmaster and he said it is impossible to set a limit like that. He has known children who were thought to have no language suddenly start talking in sentences, and there is a boy in the school who has recently started to talk aged 11. So I'm not going to give up hope just yet, maybe when ds is 11!

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Davros · 01/06/2005 07:28

Its supposed to be 7 for language but then there are still children/people who develop language later than that, I know at least one. I think 5 is a transition age from toddler to child iyswim so it stands out. I thought 5 was DS's best age and wish he could have stayed 5
BH, what about cranial osteopathy? If nothing else it could help relax her or you could do some massage-type stuff at home too. Another idea, is to get her a personal CD player and she can listen to favourite music at stressy times, it doesn't look weird.
It is true that getting to know others in the same boat helps and you find yourselves laughing about something that would have made you cry before. The only thing is, when we have our support group meetings, those of us who are old hands have to careful not to guffaw too much and talk about things that newbies find rather scary! We have a laugh but try to be sensitive to newer parents who are hoping for so much and then might have to listen to our ribald tales of strange behaviuour etc!
I'm quite interested in the outcome of the counselling btw, you said s/he got you analysing your marriage and having some doubts. What happened? I'm considering trying some counselling again and don't want to get into territory that isn't a problem (or so I think!)