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can somebody help me here on some sensory stuff with ds1?

22 replies

oops · 10/12/2007 23:23

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coppertop · 10/12/2007 23:51

A lot of your post sounds fairly similar to my ds2 (4yrs and AS).

With ds2 I've found that it helps to give him a place to retreat to when he gets overwhelmed. He seems to cope better if he can hide himself in some way, eg under furniture or a blanket or in a box. It helps to block out a lot of the sensory input. It's by no means a miracle cure, and ds2 won't always go there, but it does seem to help in general.

Ds2 also strips off as soon as he gets home. He finds it difficult to tolerate the feeling of clothes against his skin. He wears clothes outside of the house but needs a break from it when he gets home. It used to be much worse but massage with a towel has helped. You start with a soft towel and very gently rub at the skin with it. As the days/weeks/months pass and he becomes tolerant of this you move to material with a slightly rougher texture. Again it's no miracle cure but my ds2 has made a lot of progress with this.

Toothpaste is also a problem here. Somewhere in the MN archives is a thread I started asking if there is such a thing as flavour-free toothpaste. There were some good suggestions on there, including things like herbal toothpastes from the health-shop. What seems to have worked for ds2 was to put the tiniest amount on the brush. So tiny that you can't even see it. Add water to the brush so that it washes it down even more. Ds2 can now tolerate very small amounts.

It was ds1 (7yrs and ASD) who had/has very sensitive hands. Again it has been a long slow process of introducing new textures to help de-sensitise him.

I think it would be a good idea to ask the GP for a referral to a Paed. You have had concerns in the past and the latest problems are obviously affecting you all. An assessment might help you and ds to find out what is going on and how best to help.

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oops · 11/12/2007 00:05

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twocutedarlings · 11/12/2007 09:36

Hi Oops,

He also sounds alot like my DD who is 5, she has recently been Dxd with Aspergers, tbh we still have days/weeks at home and school where by it was a case of now you see it now you dont. It still very early days he is still only very young.

Its intresting what you say about him being gifted, my DD most certainly is gifted in Maths alot of kids with AS are gifted. If you google Aspergers Gifted that traits for both are extemely similar.

To be totally honest if i was you i would ask for a referal to a Child development clinic. It can take several months for you to get seen. And weather or not he has AS or not her certainly has some issues and im sure that by being seen at CDC it would only be of benefit to him in the long run.

HTH

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coppertop · 11/12/2007 10:11

Ds2's AS isn't always obvious at school. For the first few weeks in Reception he was absolutely fine. No problems at all. Then one day something triggered off a meltdown and it was a real eye-opener for his teacher. He can go for days or even weeks at school with no obvious problems and then suddenly it will all go horribly wrong.

The predictable routine at school is something that a lot of children with AS/ASD like. It helps to cut down on a lot of the misunderstandings, sudden unexpected changes of plan etc that can trigger meltdowns. It's also something that realistically you just couldn't replicate at home.

There is also the factor that children with AS/ASD can often 'keep it together' at school but use home as a place to let it all out IYSWIM. The school sees the nice, well-behaved child while you get the fallout.

Ds2 is also very bright, particularly in maths and science. As Twocutedarlings says, it's something that is fairly common with AS.

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oops · 11/12/2007 23:13

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twocutedarlings · 12/12/2007 10:35

Hi Oops,

I dont think anyone here actually mean that he is definatly on the spectrum, i just feel that you would all benefit by seeing a developmental pead for an assessment.

I would go and see your GP and ask for a referal to a developmental pead, it can take ages for appointments to come through.

For him to be given a diagnosis her would have meet the triad of impairments.

Have you had a look at the NAS website?.

Another good site to look at is this.

www.autism-help.org/index.htm
(sorry not sure how to do a link here)

HTH

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twocutedarlings · 12/12/2007 10:42

Just though id also add that since my daughter has had her Dx (sept this yr)things have moved foreward for us as a family, its had no negative effects atall. School have been more understanding and can now do a much better job of meeting her needs.

I can honestly say that once we had got our heads round it all its been a benfit to us. I found that knowing the DD was a differant to her peers but not knowing why?? was far more stressfull that actually knowing IYKWIM.

Children/Adults with an ASD can really fly given the right support. This is why i personally feel that a Dx is extremley important.

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iwearflairs · 12/12/2007 23:13

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This has been withdrawn by MNHQ at the poster's request.

oops · 13/12/2007 22:32

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dgeorgea · 14/12/2007 00:16

Oops,

From what you have said it does sound like ASD. However like twocutedarlings said it is important to get a proper diagnosis as there are other conditions which can show with similar symptoms.

However you may benefit looking at some of the ways of dealing with such children and trying them to see if they help.

To be honest with what you have said the response to the new school does not surprise me. It took him a long time to get settled into the old school and become comfortable. He would have expected the new one to be the same, even possibly with the people he knew at school being there. With ASD/AS this would have thrown him and he would not cope.

The following is my view only, and based on observations of my daughter and having worked with other autistic children for a few months. Meltdowns come about when the child feels they have lost all control over what is happening around them or to them. It is a mechanism which tells people 'LEAVE ME ALONE!!!' and this is important. The child needs time to calm down and regain their composure. They cannot do this if there is too much stimulus going on, including touching or someone talking to them.

As hard as it is, and at times it may just not be possible, you need to let your son calm down on their own terms. This means simply ignoring him. When he is ready he will rejoin the family. This has improved our family life a great deal.

He will probably take what you say literally, so you do need to be careful with criticism. Again with teasing, it is something to be wary off, he is unlikely to realise it is a 'bit of fun' and may well see it as a continuation of bullying from school if he is teased there.

Yes it is scary to watch, but unless it results in self harming behaviour ie bashing head on something there is nothing to be afraid of. Easier said then done, but it does get better with practice.

You do need to get a handle on what he is saying about wanting to kill his sibling, and see you dead. It is extremely unlikely that he means these things and they are said as a way of hitting back and getting a reaction. I found five sheets of paper where my daughter had written all sort of things about me, none of which were complimentary, and in general wishing I was gone but they could keep the money I was earning. My reaction was one of delight. I had finally found a way my daughter was comfortable with sharing her emotions and speak out about what was happening to her. It didn't bother me because I recognised it was written by an angry child who was upset. I did speak to her and arranged for her to have a diary with the rule that no one was allowed to read it unless she chose to show it. That way others could not get upset by reading what she had written and misunderstanding it.

She used to plot with her year 7 learning mentor how they would kill me and some of the teachers, there were some realy bizarre methods. I just told them it wouldn't work because my army of ninja worms would protect me. She still talks about them.

Please don't dismiss what you are going through as petty. Yes there are those going through worse, there are some who are greatful they don't have to deal with what you have to! It is your reality and no less painful or significant for that. There are times we all need support and help.

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oops · 14/12/2007 08:37

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oops · 17/12/2007 23:02

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yurt1 · 17/12/2007 23:19

Have you got a copy of the out of synch child? El cheapo paperback on Amazon. Would help I think.

Cxxx

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oopsitisanimmaculateconception · 17/12/2007 23:46

thanks yurt1. will get one when I've sorted out xmas etc...

oh, that boy- i worry about him so much. ds2 is a little dream in comparison- and he makes me realise quite how different ds1 is.

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yurt1 · 17/12/2007 23:50

The other book you could read is Stella Waterhouse (lovely lovely person) ' A positive approach to autism'. It really goes into all the sensory stuff and autism and dyspraxia. A great book.

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oopsitisanimmaculateconception · 18/12/2007 00:02

Thanks again- i'll have a look for that too.

he's been an absolute dream today- santa came to playgroup and he was vibrating with excitement

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oopsitisanimmaculateconception · 18/12/2007 00:16

i've had a look at the triad of impairments and really I think it is more the sensory stuff.
he does play imaginatively and does communicate quite well.

But what is an inappropriate subject for a 4yr old? don't they all come out with crazy stuff when talking to people?

eg, the other day he met somebody new and started talking about the sixe of penguins' ears- but that is normal isn't it- he just says what is bubbling up into his head at the time. lol

hmm, food for though. i think I'll take him to he drs and then read the books.
I think he sensory stuff is the key here, less so the other things.

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twocutedarlings · 18/12/2007 11:18

Yes you right oops alot of 4 YO do talk about alot of odd stuff, its so hard to know, even more so with your first DC.

And as for the intermittent aspergers this is my DD down to a tee, she doesnt have AS at home IYKWIM shes an absolute angel !! its in social situations away from home where you notice it.

I remember only to well what it was like to be in the situation that your in. But i really do think that the sooner you ask for a referal and and get you name into the system then better tbh. It can take ages before you actually see someone.

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oopsitisanimmaculateconception · 19/12/2007 22:46

we went to my dad's today and ds1 was a perfect little poppet.
he talked to my dad and answered his questions and generally smiled at everyone.
he played with his cousin- board games and they even started to play chess together.
He didn't freak at anything and just seemed incredibly normal today.

Sometimes i feel like i am amking it all up, then when we are in the melt down zone and the weird behaviour zone it all seems so obvious that he has a problem.

Anwya, it is good to get it off my chest, there's nobody else to talk to just now

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oops · 07/01/2008 22:25

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twocutedarlings · 08/01/2008 09:33

Hi oops,

Glad to here that the Senco was supportive, but im just wondering why she said that they couldnt refer him, but yet she says that she wouldnt be suprised if your DS had Aspergers. Surely if she is confident enough to say that then she she sould refer him IYSWIM.

Btw you have a major problem with you SSssSS PMSL

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oops · 09/01/2008 13:31

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