Autism

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Amandaplus2
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Posted: Sat Sep 29, 2012 8:17 pm 
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Just a bit of an update. Lewis is now seeing Portage every Wed morning and we have qualified for free nursery place for him (15hrs a week). We have an ADOS assessment next Tuesday so hopefully in the next few weeks we may hVe a diagnosis x
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NicolaOasis
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Posted: Sun Sep 30, 2012 9:19 am 
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My little girl has been referred for an autism diagnosis but in my area there is a 18 month waiting list Sad

She attends a communication and language nursery just now and has made massive improvements in the 1 month that she has been there xx
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Amandaplus2
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Posted: Sun Sep 30, 2012 4:22 pm 
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18 month waiting list that is awful. Luckily we only saw the pead a few weeks ago and have the assessment on Tues x
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NicolaOasis
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Posted: Sun Sep 30, 2012 5:27 pm 
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Thats really good. I started querying about Aimee's lack of speech etc when she was 18 months old and by the time she gets diagnosed ( if it is autism ) , she will be 5, its disgusting Sad

However, she's made major improvements in the past year so we're just getting on with life and working out how to cope along the way Smile xx
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Amandaplus2
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Posted: Sun Sep 30, 2012 7:44 pm 
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Does she speak at all. Lewis has never said a word and doesn't understand language either.
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NicolaOasis
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Posted: Mon Oct 01, 2012 10:46 am 
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Im lucky in that way as she does speak which makes a massive difference now. She never spoke until she turned 3 but the fact that she can tell me if she's got a sore head etc makes a massive difference.

She's still behind with her speech and communication but we're getting there. She has some understanding but she still has her struggles.

But between her 2nd and 3rd birthday was horrific, she had no speech and no understanding.

Have you heard of Hanen courses ? We went on one of them called More Than Words and it was really useful teaching you ways to encourage communication and speechnxx
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Amandaplus2
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Posted: Tue Oct 02, 2012 8:29 pm 
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Thanks I was thinking about getting the book but so expensive x
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thatonethere
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Posted: Wed Oct 03, 2012 8:33 am 
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I think we are about level in the process, we too are being assessed etc. and we have portage every wed morning Smile we also have speech and language in the afternoon, and they lent us a copy of the more than words - don't be put off by the size of it, just read the chapters that are relevant, for us it is chapters 7-9. It seems to take a long time for the whole process of assessment, but they are very thorough I think, they have observed him in different settings at different times, we had a tac meeting a few weeks ago, there were 13 people from different areas associated with his care and they are observing for another 6 months and seeing what they think. Ours is a bit more complicated because it's just one of many conditions that he has so they have to factor in his other stuff too. I hope you find portage helpful and wish you all the best, if you need to chat I know what you're going through, just send me a msg xx
Jennifer256
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Posted: Wed Oct 03, 2012 8:39 am 
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We are trying to get funding for Archies nursery place to start ealier as he is three this week but his funding wont come in until new year, we have seen the paed once and are due to see her again in november and she will decide whether we need the autism assessment or not, they have been reluctant to do it till now as Archie as Archie spent alot of time in hospital and children that have can generally be a bit delayed anyway.

We see two speech and language people but still not much speech Sad

I think we are stuck at the point of he is getting very frustrated with not being able to communicate with us, hopefully doing the hanen more than words course but god knows when that will be everything seems to take soooooo long when it is proven that early intervention is the best!

What is a portage?

xx
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thatonethere
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Posted: Wed Oct 03, 2012 9:40 am 
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A portage worker is a special needs worker who comes to your house one session a week, they work on targets and helping children acheive, they are part of a team who are involved in the care of special needs children, usually referred from the paediatrician or specialist health visitor. They are called portage because they started in a place called portage in america, they are part of the disability inclusion service. x
Amandaplus2
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Posted: Wed Oct 03, 2012 7:02 pm 
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Well Lewis had his ADOS yesterday. We have to wait 2 weeks for the Pead and HV to visit us to tell I'd their findings.
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NicolaOasis
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Posted: Wed Oct 03, 2012 7:08 pm 
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Did it go well ? What was involved ? xx
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Amandaplus2
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Posted: Thu Oct 04, 2012 7:36 pm 
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I don't know if it went well or not. There was his peadatrician and a SALT lady who who had some toys. They wanted Lewis to interact with the toys. There was also a telephone, I think they wanted him to pick it up like a real phone and put it to his ear which he didn't. Then she made a birthday cake out of play doh again I think to see if he knew what she was on about , he did t. Then she blew some bubbles and he did his flappy hands thing lol. Then she had some snacks in two different containers and wanted him to choose one. The pead was makin notes and she said she was scoring. So I am not sure whether he scored well or not. He didn't understand a lot of it x
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Amandaplus2
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Posted: Wed Oct 17, 2012 6:50 pm 
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Well Lewis was diagnosed with ASD. We knew it was coming but was still hard to hear Sad
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amesymc
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Posted: Wed Oct 17, 2012 7:25 pm 
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ahhh amanda im sorry hun. tbh im not sure alfie would have understood alot of that either Confused Confused Confused Confused did they say what part of the autistic spectrums hes at?? hope your ok hun u know where i am if u need to talk x x
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