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I don't know what's going on! please help

5 replies

Getuhda348 · 27/09/2015 23:51

Hi all. I have a 20 month old son who has recently being assessed by speech and laugage mainly because after starting to talk ( later than 'normal') he suddenly stopped. The women came and was excellent and put him on the list for an ella course. He was to be reassessed after this. She asked lots of questions when she was here and did say he was showing signs of autism but she thought not enough to refer him to the autism team but she said it would explain a lot as she was seeing a lot of red flags . However a week later I get call saying she's spoke to her manager and he's getting referred to the portage team. When I've looked it up its for sn children... I think. So now I'm really confused. I asked why but she was really vague with her answers. Does this mean he will be getting assessed for autism? And what exactly is the portage team? Sorry new to all off this

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Getuhda348 · 27/09/2015 23:56

Also should add I have asked on here about autism before because I just have this gut feeling he has it. Somebody pointed me in the direction of a question aire and he came out as high possibility of it. Also he displays a lots of signs that I have read up on. But he's way ahead of his development everywhere else. But not sure if it's true but I've always thought people with this are very smart. Sorry if I offend anyone as you can tell I'm not very clued up on this.

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2boysnamedR · 28/09/2015 00:32

Portage are great! They are a early years teacher that come into your home for a hour a week. They give you lots if help on how to play to bring out speech and interaction.

They can also assess ( not for any diagnosis mind you but I bet a lot if them can guess as they have experience - they in my experience never express if they think there could be a diagnosis) where your child is. They can then compair that to where they should be. Then they work with you and reassess to see what progress has been made. If there's no progress they can help you onto the next steps ( in our case the right preschool!)

ASD isn't linked to cognitive ability so as the saying goes - if you have met one person with asd, then you've met one person with asd!

Try not to think about possible asd - it could be hearing loss, a bit of a delay, etc. So keep it in mind but don't have it at the front of your mind iykwim. Ask portage lots of questions. They can be very good.

You also need to ask to see a developmental peadiatrition as they are the people who reffer out to rule out hearing loss etc

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Getuhda348 · 28/09/2015 01:03

Thank you for replying! Feeling a bit lost with it all. He's had a hearing test done and all came back fine. So would that mean the portage team are doing the ella course. She said that was a hour a week so thinking it's the same thing? She did say it was a collegue who would ge doing it though. I think the autism is in my head as I went to my hv first for help with his speech and it's the first thing she mentioned I hadn't even told her my concerns about that. Is it weird that I just want him assessed for it? So if it is I can help him. Obviously happy his speech is being addressed but don't like the fact that all professionals have mentioned it but nothing seems to being done about it I'm glad to hear portage are good though can't wait to hear him say mummy again!

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2boysnamedR · 28/09/2015 01:33

It's not wrong to want to be assessed for asd. Not at all. Been there twice myself.

It's just a lot of stress if it's something else and please god - things like glue ear are easyly fixed hence me saying try to put asd to the side if you can. It takes a while to get a diagnosis for asd if it's that so yes keep asking the right questions of portage but you will emotionally burn out if you have wait for your answer. Also some things look like asd but aren't ( one of my boys is dyspraxic with a language disorder). It took 5.5 years and a trip to a private dr to diagnose him and about 1.5 years to diagnose my son with asd.

Sorry I don't know what ella is?

Your likely to be under portage for a year. In my case we was refered to early years at the same time. Via our developmental pead. Portage and pead with slt, ep and early years all worked together to diagnose asd. But the slt saw it after one assesment. She told me over the phone. She couldn't diagnose so they needed portage to have her say on ds over the year.

It's not easy to explain because I'm very lucky to get a diagnosis so youg for ds. But at the same time id rather it was a quick fix kind of reason he isn't talking. Getting to a diagnosis was a long wait and most people wait longer than I did.

Not sure if I'm explaining this well, I just think I'd have gone crazy if I had expected a quick answer.

All things portage will do will help if it's asd. It's all about shared attention. That's the key to all communication. It's also the key to getting into a autistic child's world.

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Getuhda348 · 28/09/2015 01:57

I do feel better knowing the portage will help though. It sounds awful but I feel like he rejects me completly and you're right I would love to even look at his world! I have heard similar stories off it taking years for diagnosis off anything so think I just worry he may be left behind. I didn't realise we would have the portage team for a year. I think I'm trying to prepare for it really when you're right it could be something different. I have bad anxiety myself so I don't think it helps . Thank you for all your help!