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Getting Jittery now

12 replies

alfiemama · 05/02/2009 12:11

Ive got ds appointment with the Paed next week, ds is 4 at ms school, but seems to have complex issues relating to some kind of asd.

The appointment is for approx 1.30hr. I just hope that I am not expecting too much from the apoointment.

Ds has gone half days at school now as is unable to cope. At the moment he is off school fully as had a tummy upset and has now regressed with his toileting. We feel if we were to send him and then he had an accident, he would be mortified and we would never get him there at all after that.

Why is this process so damn slow? I am desperate to get my son the support he needs.

sorry for waffling probably having a bit of a wobble today.

OP posts:
amber32002 · 05/02/2009 12:25

Feels like wading through treacle, sometimes, doesn't it.

I think you've done exactly the right thing in keeping him off school if he has a tummy upset.

I also think you could do with a very large cup of something and a decent sit down. Shall be hoping that the appointment is useful and not an "Oh this is only stage one - there's another year to go" conversation.

alfiemama · 05/02/2009 12:36

Oh god Amber please dont say that, dont know how to cope if it was, seems like a life time already.

I have decided I am going to be ultra nice to the chappy, saying something along the lines of "Thank you for seeing us, I know you must be very busy, so I have compiled a thorough list of all of ds traits for you" (something I am typing up as we speak)
I also have the letter from the school, asking for urgent help (again this is very thorough).

Oh god if its one of those appointments, I think he will have to pick me up of the floor

OP posts:
amber32002 · 05/02/2009 12:43

I wouldn't worry too much. With a letter from the school asking for urgent advice, they should put something into place fairly pronto.

What does the list look like so far, dare I ask?

alfiemama · 05/02/2009 12:45

Actually Amber that would be brilliant, if you could have a look for me.

I will just finish typing it up and put on here

thanks

OP posts:
alfiemama · 05/02/2009 13:15

Ok not finished, just a very rough draft. I will also copy what the school have put.

Hand Flapping, jumping and rocking.
Plays and twirls hair for comfort.
Doesn?t play with toys as they should be, i.e. if he is given a car he will just turn it over and examine it, and spin the wheels
Rips paper obsessively into tiny pieces
Stacks objects
Lines up toys, even obscure ones
Seems in a daze at times, in a world of his own
Would rather watch adult programmes rather than children?s
Plays with obscure objects, like feathers, fluff, cotton etc
Shakes when angry
Likes to feel cosy with and will strip off and cover himself with fluffy cushions
Imagination is very strange, i.e. very adult, labels of clothes become bank cards, pieces of paper become baking a cake
Likes to read yellow pages, Argos and A ? Z?s
Only likes one thing on his plate at once and has to be divided so it doesn?t touch.
Diet very limited only seems to like mostly beige food.
Will only drink water from a certain cup
Smallest things are like the end of the world resulting in massive meltdowns
Has rituals he has to stick to, one being taking his shoes off.
Doesn?t like change of routine
Doesn?t like to be undressed and dressed
Affection is on his terms only
Odd use of language, very robot like and lots of made up words
Tags along with friends rather than plays with them
Would rather watch than participate
Doesn?t like any food spilt on him
Will not try new food
Echoes words
Will watch the same DVD again and again
Always has to have music on in the car
Used to head bang as a child
Doesn?t like texture of sand or grass
Had sleep issues when younger
Covers his ears during a meltdown or upset
Interrupts when others are talking
Struggles with buttons and zips
He was never inquisitive, never looked in cupboards or wanted to know anything
Poor eye contact
Talks babyish
Never pointed to objects
Walks like a toddler
Runs very oddly
Grinds his teeth
Cannot hold knife, fork, pencil properly
Cannot write as struggles to press on, finds pressing buttons difficult
Can be aggressive but also can overly love to the point of obsession
Keeps falling over
Has been referred for SALT, ED PHYC and Neurologist due to possible petit mal. Also referred to specialist at hospital for flat footedness.

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alfiemama · 05/02/2009 13:17

Alfies teacher has been concerned about Alfie since the first week in school. Our opinion is that he has complex communication difficulties and is showing signs of Aspergers syndrome and dypraxia. His symptons are so marked that it seems incredible that his difficulties have not been spotted long before now. Alfie requires 1 to 1 support urgently if he is to make progress in school and fulfil his potential.

Alfie is unable to follow instructions, relies heavily on other pupils.

He repeats/mimics/echoes words and phrases or actions he sees modelled y staff or on a video.

Alfie cannot dress/undress himself, finds it difficult to coordinate his movements.

he has poor spatial awareness and is clumsy and immature with his movements.

His speach and behaviour is generally immature, he often talks in the third person.

Alfie plays alongside other children but does not join in and interact with them.

He shows no sign of creative/imaginative thought or play.

Alfie flaps his arms and demonstrates unusual, uncordinated movements, especially to music (including rocking)

At carpet time Alfie will sit the wrong way round, with his back to the teacher, and does not realise why this is a problem.

He becomes fixated with objects

Sings inappropriatley loud to music

He is verbally robotic in his speach

Alfie seems frightened, obsessed by certain foods and finds it difficult to eat his lunch, requiring one to one support to eat anything at all. He will only eat beige foods and becomes distressed when coloured or unfamiliar foods are put in front of him.

Alfie has no awareness of his own well being, he took an empty lunchbox into the dinner hall and did not realise there was something wrong resulting in him having no lunch that day.

On the playground Alfie often falls/trips over and seems to have no falling reflex and has repeatedly substained nasty head injuries.

They then just sum up that he has been referred to SALT and ed physc and they would like someone with our consent to come and see Alfie.

OP posts:
alfiemama · 05/02/2009 13:44

you did ask Amber

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amber32002 · 05/02/2009 13:49

Bearing in mind I'm only answering as someone with an ASD, there's SO much in there that's like me .

Very good list. And good summary from the school too.

If they did a list for me even now, it would read: rocking, tapping, twirls hair for comfort, if he is given a car will just turn it over and examine it, and spin the wheels. Rips paper obsessively into tiny pieces, stacks objects,lines up toys, seems in a daze at times, in a world of her own.
Plays with obscure objects, like feathers, fluff, cotton etc, Likes fluffy cushions, likes to read yellow pages, Argos and A ? Z?s, has rituals she has to stick to, doesn?t like change of routine
doesn?t like to get undressed and dressed,
affection is on her terms only
Odd use of language, too pedantic, any new phrase is a struggle, tags along with friends rather than plays with them though is polite about taking turns at her age
Would rather watch than participate.
Will not try new food, echoes words
Will watch the same DVD (or listen to the same CD track) again and again
Always has to have music on in the car
Doesn?t like texture of wet sand or mud
Has sleep issues. Interrupts when others are talking. Struggles with buttons and zips.
Poor eye contact. Body language doesn't work. Can't tell who's who very easily or remember info on people. Common sense severely lacking.Runs very oddly
Cannot write well with a pen. Wrestles with cutlery. Keeps falling over. Can't ride a bike or swim without a huge struggle.

Good job many of us have a good sense of humour, eh?

alfiemama · 05/02/2009 13:55

Thanks Amber, its odd but you still think someone is going to say "no dont be daft" its quite obvious isnt it, and no wonder he is struggling. How on earth we didnt see it. Or the HV that used to come for weeks on end to weigh him, or when she came for his sleep training is beyond me now.

OP posts:
amber32002 · 05/02/2009 14:06

Often things are only really obvious when you see a load of similarly aged children together for long enough, though?

alfiemama · 05/02/2009 14:17

Yes good point Amber, but the hv knew ds personally, just feel a little let down. Also school are very shocked that nursery didnt pick up on anything. Like they said if they had things could have been in place for him, and school wouldnt be such a struggle.

OP posts:
amber32002 · 05/02/2009 14:52

Yup, I agree

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