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WHAT IS THE POINT???

4 replies

deeeja · 19/09/2007 14:56

Yesterday I took my ds 21/2 yrs to be assessed.
He was seen by two doctors and a consultant. The speech therapist thinks he is autistic, the first doctor thinks he is autistic, but the consultant thinks he has a global developmental delay with some autistic traits, what ever that means. Apparently, even though he can't point or follow a point, has very little and vague eye contact, echolailic speech, doesn't initiate conversation and doesn't know how to play with toys, can't imitate, etc. he will not say that my ds is autistic. This is really upsetting me.
Today I took him to a playgroup with other developmentally delayed children, but they could all communicate and interact, my poor ds stood out like a sore thumb. He didn't understand the games, and only took part in heads,shoulders,knees and toes(his favourite song, because then he can just point at body parts and not focus on the whole person iyswim). He didn't understand the layout of toys, not suitable for him, I thought. He only stuck with a couple of toys that had lights and played music, everything else he just licked and banged on the table. It just made me feel upset to see him feeling anxious and disturbed by the whole day.
The other parents there were not very pleasant, and a little 'cliquey'. One of them asked what was wrong with my son, she then launched into a barrage of competition about how her son is a real autistic, and has a diagnosis of classical autism, and is not like my ds at all. The other children mostly had down syndrome, adn were able to communicate and my ds just cuoldn't. Alot of the games were verbal, and snack time involved sitting down at a table with your own snack, my ds took everyonelses snack and licked them . It made me feel embarrased, just as I would have done at the 'regular' mum and tots group. The other mums tutted at him. Then gave me big looks of dissapproval. I hated it and don't knowif I want to go back. And to top it all of, one of the mothers had her non-special needs son with her, who started following my ds around and generally bullying him, and she said nothing, even though she saw the whole thing.. My por ds didn't know how to tell me, or how to react, because he can't communicate properly, it happened when I went to the loo, and one of the other mothers told me. I jsut can't trust the place, and now my ds is distressed and I know he won't get over it for days, and I will have more sleep disturbances tonight, and since I got back he has been lying on the floor and shaking his head. I feel so sad for him and don't know how to cope with all his anymore, I know I need to get him help, but this is making him worse. What is the point ofit?
Sorry so fed up with the whole process. I have had a terrible week!

OP posts:
Melaniec234 · 19/09/2007 15:12

Hi sweetheart, dont let others ignorance get you down. I know its hard can speak of personal experience of playgroups with my asd son. I used to get upset all the time, but now im like hes my little boy and i love him, and if other people want to be ignorant, so be it. Just remember, that theres always someone on here to speak to, it got me through some bad days, take care xx

sphil · 19/09/2007 15:49

Hi - it does sound like you've had a rough time. I'm shocked at the behaviour of the other parents at the group - not helpful at all. Fancy being competitive about how autistic your child is, fgs! Have you ever thought of BIBIC? We went when DS2 was 2.5, also undiagnosed, and they gave us invaluable support and positive stuff to do with him. The web address is www.bibic.org. (There might be a uk at the end...)

sphil · 19/09/2007 15:54

Hi - it does sound like you've had a rough time. I'm shocked at the behaviour of the other parents at the group - not helpful at all. Fancy being competitive about how autistic your child is, fgs! Have you ever thought of BIBIC? We went when DS2 was 2.5, also undiagnosed, and they gave us invaluable support and positive stuff to do with him. The web address is www.bibic.org. (There might be a uk at the end...)

moondog · 19/09/2007 21:41

Deeja,sorry you have had such a rough time.
I really hope that you may possibly have misinterpreted the behaviour of some of the parents. I can't think that anyone could be so deliberately upsetting.

I am a salt and work with a Special Needs caseload and have particular interest in Autism.Is the group run by a salt or a psych (or maybe both?) Are they present the whole time.
PLEASE keep going. The session will provide a valuable observation period for the professionals there who will use the information to work out how best to help you in practical terms.

Assessments and forms are all very well but the information I gain form observing is always them ost useful to me in my work.

It's really great that he copied Heads and Shoulders btw.

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