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Original poster

Letter from the Paed about ds..

21 replies

Kelly1978 · 27/03/2006 09:47

I am really annoyed now...

I've just had a letter fromt he paed summarising the visit we had. It goes on and on about the stress he has been under, moving twice, and new partner, leaving exh, smoking and drinking during pg, and absolutely no mention of autism whatsoever. I agree the moving might have been stressful, but he reacted to it badly because of the way he is, dd was fine. As for elaving exh, i was pg with him at the time! I met my new partner when he was 6 months old, so as far as ds is concerned he has always been around. Now it doesn't look like I'm going to get anywhere regarding a dx...Sad
It feels like now they are tryng to blame me for it all and completely ignoring all the autistic traits that they picked up on. I know I smoked and drank too mcuh during the last trimister but I really don't see how that can explain all of ds's behaviour. They even go on about bruises he had. He is clumsy, he wanders around in a dream and is constantly fallign over. They didn't mentiont hat netiehr tho. I feel so Angry and Sad. I really thought we were getting somewhere after allt his time.

OP posts:
jenk1 · 27/03/2006 09:49

Thats awful, whats wrong in this country where they will try and blame the parents?

We are going thru the same, have been told to do parenting course and that maybe DS behaviour is an "attachment issue" Angry

Original poster
Kelly1978 · 27/03/2006 09:57

I'm considering taking a film of him. They jsut aren't seeing it. Yesterday we went to legoland, at the driving school all the other kids were sitting nicely and ds is sitting there twisting his hands about, gurning and making peculiar noises. He is 3 and half, and was the worse driver there - caused a mass pile up! Grin

I've read soem of your posts, I don't know how you keep your calm. It's so frustrating having a child that needs help and jsut getting the blame for it. Sad

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PeachyClair · 27/03/2006 10:15

Kelly

We had similar the first ever assessment we had, we're being reassesed now and hope to get further this time- we managed to get referred on to ed psych etc this time.

The thing we did that helped was go to BIBIC, www.bibic.org.uk- once we had their piece of paper with Sam's assessment stuff on it they were more keen to help.

BIBIC doesn't diagnose, but they assess each childs abiities and give you a way forward and excellent advice.

Would it be worth considering? Sam is 6 months into the program now (sam is AS) and BIBIC has helped the whole family, being a place of refuge when things have been tough.

They take from 0 - 16.

Original poster
Kelly1978 · 27/03/2006 10:20

I got all their info sent to me, still have the dvd to see. They are a bit far from here tho, and expensive so I don't know if it will be an option. I'm really not sure where we would turn next though, if nto somewhere like that.

Can anyone tell me what will happen once he is int he school system - they are bound to pick up on problems.

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PeachyClair · 27/03/2006 13:59

Yes, they are expensive, we managed to persuade a foundation to fund us. They were linked to DH's occupation and we found them on a website of organisations BIBIC supplied the www address for in their fundraising pack, occupational organisations. If you can stretch to it it's worth every penny. The Sonerset one can put you up, don't know if the Cymru one does or not. Certainly nice area to visit though.

Whether school will pick up depends purely on the school. Some are wonderful, some appalling.

Try the NAS. (National Autistic Society)- they were great when we had this with Sam, sent us loads of info.

Original poster
Kelly1978 · 03/04/2006 12:38

Update...

we had the consolidation appointment today and I'm feelign a bit happier. They aren't going to dx him with autism yet, but they are bearing that in mind, and we are going to be meeting up again in 6 months time. In the meantime he will be attending sessions at the children's center and starting pre-school and they will be watching how he copes with these. They are also referring him for assessment with a physio, to consider the possiblity that his problems are caused by dyspraxia. For now they've jsut put social and communication disorder and delay of motor skills as a dx. All very vague, but at least I have something to work on! Smile

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lars · 03/04/2006 13:03

Kelly1978, Good luck, it appears that it takes time for a diagnoisis, hence it seems fashionable now days to ' blame the parents syndrome'. Yes, in some cases it may well be the parents, but there appears to be little time to do proper assessments of children, hence the delay in diagnoisis for some children. larsxx

Socci · 03/04/2006 15:06

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Original poster
Kelly1978 · 03/04/2006 17:53

I have thought about it, although I wouldn't know where to start. The only problem is that it would be starting again from scratch. After putting so many hours in here, that would be difficult. I'll see how things go for now and if we still don't get anywhere I will have to start looking elsewhere. I'm really hoping it doesn't come to that.

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Socci · 03/04/2006 19:34

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Pisces · 04/04/2006 00:07

Just to say that my GP first thought my ds had dxypraxia as some of the traits are similar to Autism. He was not dx until 9 years old with ASD.

Some schools are better than others for helping. My ds's first school put it down to EBD (again some traits are similar) and I just knew that was not right so we moved schools as we got so fed up for him having a "naughty boy" label. The new teacher he got had a special needs son herself and she knew that EBD was not right either. Eventually after some very distressing episodes, we were seen by CAHMS and then he saw 3 different consultant psychologists and psychiatrists before they all agreed it was ASD. It is a long and hard road to the right dx.

Don't give up whatever you do! I know it seems hard and it is very, very stressful but if you can get there in the end, you can help your son so much with the right dx. Keep fighting on. Sending you lots of ((((hugs)))) right now.

Original poster
Kelly1978 · 04/04/2006 09:20

socci, do you mind me asking an idea of how much we would be looking at paying? I really don't have a clue.

pieces, it is so confusing, basically they are saying the behavioral problems might be stemming from dyspraxia, and so having a physical root. Or that the physical problems result from autistic problems. It seems like the chicken and the egg - which comes first!

Thanks everyone for the support, its so helpful having people who understand, Smile

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Socci · 04/04/2006 12:03

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gigglinggoblin · 04/04/2006 12:29

not sure if this is completely relevant (sorry if it isnt or if it has been mentioned, have only scanned thread), but we are trying to get a statement and a dx of AS for ds1 atm. i have been given details of where i can get a private dx, but it would be a waste of money for us because our lea will not accept a diagnosis unless it is from their own staff, they will look at what is said by other professionals but are not legally obliged to take any notice (it wasnt lea who told me this btw, i dont trust them as far as i can throw them). dont know if all leas are the same, but thought it might be worth posting.

i have also been blamed for his behaviour and told that it is attachment issues by useless ed psych who didnt mention anything about AS despite it fitting his behaviour perfectly. i dont know how some of them have the cheek to call themselves professionals

Socci · 04/04/2006 13:19

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Original poster
Kelly1978 · 04/04/2006 14:41

That is a scary figure. It would be worth every penny if I knew I was def going to get a dx, but it does seem a risk. When I consider that ds has had 11 hours with a multiprofessional team and still not got anywhere, I do wonder if I could get anything useful in 3.5 hours. Maybe it would be better if I knew what I was aiming for, but I'm not 100% certain myself! I think I would need to look into the LEA side of it to.

I would also like to know what a dx would actually mean for ds. On what they have given as his vague sort of provisional dx he will be on the waiting lsit for cass support, and he will be attending two groups a week at the childrens center for social skills, etc, one with me so that I can learn to help him and another without me. He is also being referred for assessment by a physio for his motor difficulties. Hopefully he will also get some form of speech therapy as they have identified problems, I'm jsut waiting for the full report and recomendations from the speech and language specialist (who was on holiday). So it seems that they are addressing most of the issues already, although they don't really knwo what they are dealing with.

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Socci · 04/04/2006 14:47

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Original poster
Kelly1978 · 04/04/2006 15:01

ds is 3, will be four in June. I know the root of his problem is that he is in his own little world, but I don't know why that is. It was also hard for them to see it all, because he reacted differently to things at the childrens center to what he normally does, and as he is getting over the stress of moving (last year) he is finding new ways to deal with his problems. So it is really hard to explain him properly.

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Socci · 04/04/2006 15:08

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Original poster
Kelly1978 · 04/04/2006 17:00

How did you realise that your dd def had ASD? How old was she when you got the private assessment done?

sorry for all the questions. Blush

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Socci · 04/04/2006 21:13

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