jas had a speech and language assessment this morning

[keepingmesane]

and tbh im not sure if im happy or sad about it.

The speech and language guy (james) was great, really friendly and remembered us from last year when i had a very young lauren with me at kierans assessment.

he spent quite a bit of time chatting with me and watching jas, then played with her.

jas went really shy when we went in, she went over to james and gave him a big cuddle and then sat putting teddy in and out of bed repeatedly until we finished talking.

annoyingly she was on her best behaviour and didnt do most of the things she normally does.

 

The idea for today was to make a decision as to whether jas was to have an assessment for autism, but it turns out that james will need to spend more time with her as she is just too complicated.

he did see a few things but generally she was within 'normal', but he acknowledged that this is a known prob with jas and accepts what ive said and what the nursery have said about jas. basically jasmine is 'normal' but only for a short time before she starts again, like a record! her mind is also very much like a fragmented hardrive so jumps constantly to things we just cant follow

 

he is going to go into nursery the first week she is back and spend time with her, he will also speak to all those who spend the most time with jas and will also look at all the 'evidence' (films of jas, reports, observations etc) that have been put together by the nursery.

 

so it is good news that he has listened and that he will look into it more, i feel incredibly sad though as i am aware again of how much of a fight we will have to get her help. James agrees that jas has very extreme behaviour etc which would place her on the autistic spectrum... but its such extreme 'positive' behaviour that its most likely it will get ignored. the diagnostic criteria is usually set on being anti social etc James even acknowledged that jas will probably have quite a hard time of things due to being so all over the place. of all of our lot jas can be the most hard work, mentally she is so much closer to isaac.

she is a lovely little girl who i, and everyone who meets her, adore very much. i just feel so sad and hurt when her eyes that once sparkled with life, now look blank or distant. a lot of people have quietly hinted that she is on the spectrum and that she is a lot of work... but its not obvious enough to those who see her briefly

[ellisisamazing]

I just wanted to give you a <'>

 

The part about Jas's eyes really moved me. All I can say is that when Ellis was born and as he entered toddlerhood, he also had sparkly shining eyes and he too lost that, and he was empty and vacant eyed also.....it was so sad, we look back at photos around three years ago and you can see the ASD/GDD almost...it sounds odd, but you can see it, honestly.

 

I am happy to say that now after three years of knowing which path to take El down that now when I look into his eyes all I see is a sparky, cheeky, mischeivious, funny, loving and happy glint!

 

So please, keep on with trying to get a DX, with the right education, play, structure your little one will be all sparkly again! <'>

 

Lisa xx

Edited August 17, 2007 by ellisisamazing

[cmuir]

Hi

 

My son was seen by a SALT and he behaved really well the first time (he has behaved like an angel on occasions). Nevertheless, the SALT did have concerns and later did further assessments. Robert was generally uncooperative and was very hard work and it was difficult for her to do a thorough assessment. We later saw R's consultant who did an ADOS (The Autism Diagnostic Observation Schedule). This was the tell-tale. On the day, R appeared tired and was generally quite compliant and well behaved. Thankfully, they saw through this and they were able to conclude that R has AS.

 

Is is possible (if one hasn't already been done), to ask for an ADOS? This assessment is observed by a SALT, psychologist and specialist. It's usually videotaped so that the professionals can look over it later in much greater detail for things like eye contact, etc. It's setup like a playroom and the SALT asked R to open bags of a few toys (eg fire engine, man, woman, house). It was incredibly interesting seeing what R made of them. He simply didn't do what an NT would do - ie house on fire scenario. He was also asked questions eg what makes him happy, what makes him sad. It was obvious that he had to be led. When asked about his birthday, he told them that he had a spiderman cake, he failed to tell them about the main event that I'd hired a real fire engine. R said that fireworks make him happy, when we know he's petrified of them. There were heaps of things that they were able to look for (has to be said, things that I didn't necessarily pick up on until told - behaviour was the main pointer for me!).

 

It's really frustrating waiting on appointments, but anything that can be done to back up why you think your child has an ASD may help. For instance, I kept a diary over 8 months detailing strange things eg self harming, repetitive/ritualistic routines, behaviour, what happened at christmas time, family events, etc. I copied relevant bits and sent them in advance of appointments. Thankfully it was read and although eventually we got R's diagnosis.

 

It's a case of hanging in there and being like a dog with a bone. If gut feeling tells you that your child has an ASD, stick with it. Pester power really helps. We had seen several Paeds, etc who just didn't see it. Met someone on this forum who was local to me and she named a fabulous consultant (her name kept cropping up again and again with other Edinburgh people). Snag was she was off on sick leave after a serious injury. I phoned her secretary every few weeks to see if there was any sign of her coming back and hey presto, one day she was back. I pleased to speak with her and she was amazing. She seemed to work out straight what was going on in Rs head!

 

It should never be this hard to get a diagnosis, but hang in there. Hopefully the snippets that are seen will mount up to build a bigger picture resulting in the diagnosis that you need (yes, it does open doors and also provides answers as to why you're child behaves a certain way).

 

Best wishes

 

Caroline