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CDC Report in Sorry this is a long one

7 replies

jambuttie · 24/09/2006 09:13

Hiya

Got DT1's CDC report yesterday and I was most upset.

As many of you know DT1 is showing autistic traits and DT2 has many difficulties.

In all honesty when we were really concerned about DT2 (before asking for help) we were so focused on him that we thought DT1 was just playing up!!!

Obiously there came the day when we were like STOP this aint right this wee lad is dangering himself and others- no danger awareness whatsoever, can't tolerate AT ALL routine changes wasn't sleeping- has been on melatonin since may.

I originally went to the health visitor and laid the cards on the table that I just can't cope with him he is so physical at atimes- bruises to prove this, most times "the lights are on but no-one's home" sorry if that is a wrong way to say it, he is so vacant looking. Instructions have to be straight to the point no long windedness, if you shout at him he doesn't seem to understand, walk off, his speach was well good to inaudible practically overnight- that's just some of his issues I would be here all day writing about him.

Anyway we tried the fish oils etc too no difference at all.

Health visito was concerend enough to do a home visit to discuss things with me as I was really upset by the time I left her room. I had written my "concerns" down as I knew i would be upset talking about my "devil" child- how hard was it thinking of him like that!!!!!

I asked a friend to be with me when she came to visit as DH was at work and couldnt get the time off, half way though she had said I think we should send him for assesment however I wonder if we could cut that out and go straight to the area Autism specialist I was really upset by this point, she thought my son was autistic??? well I don't know anything about autism and was real scared to look - my friends son is autistic.

A few weeks later I was at the baby clinic( twins are 2.5yrs but still go there as they are prem babies) and the consultant looked at him and also my concerns and said oh Aspergers WTF!!!

As you can imagine I was now distraught. we had the health visitor and a nursery nurse come to my home on weekly visits to spend time with my son to try and get to know him and everyone that has had dealings with him have stated some kind of ASD.

I was in our local shopping mall and a lady come up to me and said sorry for being rude but cam I ask you a question- is your son Autistic I NEARLY DIED!!!!!! she spoke with me for a while as I again became upset, the upshot was her son is autistic and could "see it in his eyes"

Anyway went to assesment and took a while to settle him into it but really didn't go well.

Yesterday report came in saying "NOT AUTITIC SPECTRUM"

so what has everyone been seeing in my son that wasn't seen at the clinic?? Am I just supposed to accept this and live with it day in day out?

My mothering instincts tell me something isnt "quite right" with him, if it had just been me thinking this then i am sure i would overcome this however prior to any assesments etc my hubby had questioned whether DT1 could be autistic, my friend too will tell you what she sees.

I am so confused and hope that they CDC docs are in fact right that he isn't ASD but sorry my mothering instinct says otherwise.

Please help me, what would you do if you were in my posistion? We are back at CDC in 4 months time and I want them to listen to how we have to live, I even left them a not of all our concerens all 5 pages of them but it appears they have been disregarded

TIA and sorry it's long winded
jambuttie
x

OP posts:
nikkie · 24/09/2006 17:53

Can't help really but am at the woman at the shops!
I have seen kids that I think are ASD but would never go up to someone and ask like that!

If I was in your position I would get another assessment done just as a second opinion , do you think asd?

jambuttie · 24/09/2006 20:39

My DH has thought ASD for quite some time and over the past few months yes I think so too.

I have to wait 4 months for his review appointment but feel so sad as I KNOW somrthing is there with him.

I am relieved that they say no but I know they are wrong

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coppertop · 24/09/2006 22:43

What kind of an assessment did your DT1 have? Did he see the SALT, OT, Psych etc or just the Paed?

I know that some Paeds are reluctant to dx ASD before the age of about 3 but in that case they should be telling you that this is their reason for not giving a dx.

Were you actually given a reason why they think your ds isn't autistic? That might give you (and us) a starting-point.

jambuttie · 25/09/2006 08:14

Hi

He attended the child development clinic, in attendance were paed, salt, ot, physio.

He sees salt due to his speach going.

He also attends the special needs nursery.

On the day of assesment they just said there were a few positives that day but never once indicated NO ASD!!!

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jambuttie · 26/09/2006 10:33

The nursery nurse is here well just took the twins out for an hour- she visits us at home at least once a week for repite kinda and support.

She too is not happy at the report.

She said well it's ok saying no ASD however DT1 has many many behaviours that need addressing and they can't leave the family(US) like this, she will see our HV again on Thursday and they are going to look into it

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coppertop · 27/09/2006 21:55

The nursery nurse sounds excellent. She's right that they should be looking at your ds's difficulties even if he doesn't have a firm dx yet. As well as making life easier for your ds and the family it should also give the pros the chance to spend more time with him and get to know what he's like outside of assessments. It will also help if/when he goes to pre-school as it should give the staff a good idea about which IEP targets they should be looking at first.

jambuttie · 28/09/2006 09:19

thanks for the update coppertop.

I am all messed up head all over the place.

Went to soft play with 1 of the SN nursery nurses yesterday, she has said too that now they may not be given a place on monday WTF!!!

She said that the twins are much different to the kids they have in just now and she is not convinced now that that would be the right place for them

What is going on? either they are nedding to go or they are not make up your mind!!!

She said that they do need extra support maybe looking at playgroup/outreach services.

Hubby and I are so confused and upset over all of this. It's ok for them to judge our sons on a 2 hour basis we bloody live with it 24/7

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