Tactile sensitivity and 'Mr Towel'!

[debs40]

I just wanted to share a tip with those of you who have dcs with tactile sensitivity.

We have yet to see our OT but I got some tips from her in a telephone call a few weeks ago. One was to try and 'desensitise' ds using a rough old towel before putting on problem clothes.

This has worked a treat . DS still wears the same things all the time but when it comes to a problem area (e.g. for him he hates his school polo shirt collar) we get out 'Mr Towel', do the 'Mr Towel song' (don't ask ) and all have a laugh as I give him a good rub .

He has even started to ask for it now. Incredible!! Will start building up to trying it with new clothes soon ....

[mysonben]

That's brilliant. We are doing the rough versus smooth massage too (as directed by Bibic), and DS loves it...so far

[claw3]

Thats great news, im still trying!

I was also advised about the towel and rubbing ds with it after a bath, he cant tolerate it and screams that i am 'burning' him. He also wont tolerate brushing techniques Apparently vibration might be more tolerable for him.

I was thinking of you today, when is your school meeting?

[debs40]

Wednesday.....aarrggh. Of in a minute to collect the SALT's report which has lots of suggestions. She made sure she has done it in time for the meeting so let's hope it helps.

Thanks for thinking of us!!

[claw3]

Good luck

Let us know how you get on.

[debs40]

Isn't it weird how nervous you can get about getting a report back?? It is probably because we spend so long banging on about the problem without people listening, we never expect them to get it right!

How where things with you today? DS was surprisingly ok about going in but then we had had a Halloween party so he saw some of his class on Saturday and I gave him sweets to take in for the class - alwasy seems to get him going!

[claw3]

Dont ask! Things are going very badly, ds is still hating school and is talking about dying, he has almost stopped eating and im at my wits end. My brave front is slipping terribly.

[claw3]

Oh and Halloween was a disaster, involved ds not wanting to dress up or leave the house, despite being invited to a fancy dress party at the local youth club.

Never mind my glass is really half empty today

[fanjoforthemammaries7850]

claw- I am sorry to hear you are having such a rough time. I hope you get some more help soon.

[claw3]

FFTM - Thanks for the sympathy i will be in tears again!

slaps face and pulls self together

[fanjoforthemammaries7850]

Sometimes you have to cry and then come out of the other side feeling stronger I find.

[claw3]

Its so frustrating i dont know whether to cry or kick the cat!

Thanks for the sympathetic ear.

[fanjoforthemammaries7850]

cuddling the cat is prob better

Any time re the sympathetic ear, I am glad to return the favour, you were lovely to me when I was upset.

[claw3]

Right im off on the school run, luckily i have a stinking cold, so it will hide my blubbering face

Take care

[fanjoforthemammaries7850]

Aww, you too, feel better soon.

[magso]

Our OT suggested ds (nearly 10) did the brushing /towel rubbing himself so he can control the sensations. I have not had a lot of success so far but at least he will try! We had to start over PJs to get used to the idea. Hope useful to someone.

[debs40]

Claw - how are you after school pick up? It sounds like you've had a horrible start to the term. I know what you mean about not wanting to go to parties too. DS is always happier on home turf.

I hope, despite his nerves about the first day back, that things went ok. x

[claw3]

Hi Debs, im fine thanks. Its always hard to tell with ds, he only talks when he wants to, about things he wants to talk about!.

Ds also had a SALT report in his book bag, he was assessed on the 22nd Sept, thought they had forgotten about it. Things have started to move, slowly but surely.

How was your report?

Ds has been given a LSA 1:1 programme 1-2 times per week, 10-15 minutes and referred to specialist in social communication for a second opinion.

Big work pack including a social story, pragmatics in pictures, sounds etc, etc for me to do at home. I also heard from TAMHS today with regard to meeting next week at the school to work on ds's self esteem, also she tells me my referral to CAMHS will be accepted.

I have cheered up a bit now

[debs40]

Glad you feel a bit better. Sounds like you are getting somewhere too.

We saw SALT through outside medical diagnosis process(i.e. as part of ASD assessment) not through school. Lots of helpful suggestions, including Early Bird Plus scheme which sounds helpful - NAS run for parents.

Lots to talk about on Wednesday at the meeting!

[claw3]

Sounds very positive Debs40. Have to admit to being a bit confused when it comes to SALT and the different approaches. SN's are a complex business and im a relative newbie, still learning!

TAMHS, OT, SALT and Dietitian have all recommended a multi disciplinary approach, but no one seems to be taking the lead. Your multi disciplinary seems to be underway already?

[debs40]

Yes, we saw a community paediatrician in March and she referred to SALT and OT and on to the consultant paediatrician. The consultant referred on to CAMHS. CAMHS referred on to their Social Communications Disorder group.

Saw SALT in October but not had an OT appointment yet.

I understand that, once he has been seen by everyone, there will be a multidisciplinary meeting.

SALT seems to be working on the basis it is an ASD.

I feel this has strengthened our hand a bit and I'm really glad she went the extra mile to get the report to us for the meeting. It has restored my faith in professionals a bit.The person 'in charge' of the diagnostic process is one of the CAMHS psychologists who has been fairly useless to date so I needed it.

The Earlybird plus group sounds good. Might be worth looking in to. Its aims are

"?To empower parents/carers and help them to facilitate their child's social communication and appropriate behaviour.
?To encourage a consistent approach between home and school by training parents and professionals together"

If you want me to send you any of the stuff she has given me, let me know. I'm also going to the Carol Gray (social stories) conference in Bournemouth this month and will happily forward any conference material on.

I think our situations sound so similar.

[claw3]

Morning Debs40, they do sound similar dont they! I commented to dp last night the very same thing (in fact i said to dp, how uncanny that you were talking about a SALT report and ds came home with one in his book bag, im beginning to sound like a stalker!)

Ds has been doing the 'specialist' rounds since he was 2, after HV noticed problems at developmental checks and started referring. It seems that no one takes it seriously until school start to experience problems. Over the years he has been referred to CAMHS 3 times and turned down until the school involved TAMHS. Seems that everyone else involved, carry more weight than parents.

I found OT to be brilliant, she really understood ds's problems and was the first person who was able to give me any answers. Shame she wasnt very good at being able to keep appointments and follow up her promises of sensory diets etc.

The Earlybird sounds good, i have found a severe lack of communication and understanding on the part of the school, i will google later.

My email is law dot d at hotmail dot co dot uk.

Any info you are willing to share is more than appreciated and i will return the favour, thanks

[debs40]

Hi claw will definitely do that for you

[claw3]

Just been reading about Earlybird, the website is placing emphasis on a dx of ASD (also got their telephone number, but they are closed until 9th Nov)

Spoke to the NAS helpline also, they seem to be placing great emphasis on having a dx of ASD before you can use the service.

My ds doesnt have a dx yet, although all roads are leading to ASD. I will have to wait for them to open in Nov, to find out more.

[debs40]

We haven't got one but my speech therapist said we could do it as it. Worth pursuing - perhaps ask your SALT

[debs40]

When I say we haven't got one, I mean a dx.

You see here's an example of an annoyance. To encourage DS to go to school, I got some little Halloween chocs for him to take in to share with the class.

Great says TA yesterday. DS is all pleased.

He comes home. Sweets are in book bag. He asks why they didn't give them out. I tell him they were probably busy and forgot.

I put a little note in home/school book as he was a bit miffed.

Today. Sweets still in bag. No note in response.

Oh well, it's not important but it's just a little example of why you try and hard and then get frustrated about these things.
It a communication thing.