Feeling rather lost regarding DS's learning difficulties...

[*Marti*]

So thats PECS from what I gather? SO I take a photo of all his things...do I give him the photos and get him to chose then? Will have to do abit more reading. Did you bother with Makaton? He never looks at me so Im finding it difficult!! If he wants a drink he will take me into the kitchen and cry in the corner where the drinks are. If he wants me to throw the ball, he will open my hand and plonk the ball in (when he started opening our hands we thought it was amazing!) but thats about it in the communication stakes...he will tend to just grizzle.

We went to hawkins bazaar :D Managed to get him some bendy people, a knobly ball and a few other bits, we were really pleased with ourselves. He really enjoys the fibreoptic strands that they have at the nursery but they are £300+ so will have a little save up.

Vicky, I will cry when he says mummy for sure! Your son sounds so sweet, Im glad hes doing well.

Today DD2 was having her Jabs and Jay was screaming, the nurse was trying to talk to him and do all the normal things you would do to calm a toddler down, I said to her...sorry it wont work he has learning difficulties. I felt abit uncomfortable about it. How do you handle those situations?

Also DS is an excessive drinker...is that an autistic thing?

Im also desperate to have a nice professional photo of him but hes never been happy with the environment. It was my graduation on weds and in the family photo he was roaring. Has anyone managed to get any nice photos and how?

Sorry for my odd questions and thanks so much. I have no one to ask all of these questions IRL x

[Peridot]

We didn't bother with makaton in the end... By the time it was mentioned to us, Thomas was starting to use words so it seemed a bit pointless as I thinking it was confusing him although salt seemed quite obsessed to keep trying but T never really took to it.

Yes, kind of like pecs ... They use pecs very successfully with Thomas at school with his time table and have printed off a few for me like the "stay close" sign which is good to use when we are out and about. They also do social stories with Thomas if there is going to be any change like moving to year 1... I do these too when we have something like a holiday so that T can know what to expect. NAS have got so many fantastic books.
I would start with just showing him all the photos and maybe show him that you are sticking them on to certain places in the house. It's really good that he is also communicating when he wants a drink etc Thomas didn't do this stall until we started this photo thing so maybe when he next does that to get a drink you could hand him a photo with the drink and say "J would like a drink, mummy get you a drink" then swap the card with the drink and put the card back on one of the cupboards in your kitchen. Eventually he should get that if he shows you this card, he gets what is on it and eventually he should start to use the speech that you are using.
There are loads of apps on iTunes if it have an iPhone . He'd be too young now but Thomas has loved playing some of them... Especially the ABA ones.

Hmmm photos, the only successful ones we have had, have been out of luck or getting t to look at something. These days to get Thomas to look at the camera I ask him a question about the camera to get him to look that way, otherwise he is not interested... A couple of times he has said "cheese" does he have a dummy or a comforter? Something is could hold up by the camera that will get his attention?

Glad you've found some good bits in Hawkins bazaar - they are great.
Thom also loves playing with corn flour mixed with water or just flour, running it through his hands. Simple concentration games... One of the first things one of Thomas speech therapists got Thomas t do was play really simple games to try and get his attention and start learning to share (again he was 3 though ) things like threading beads, shape sorters.
Thomas loves being wrapped up tight and really warm too. Funny you say about juice, I'd never really thought about it being an autistic thing but yes, he drinks a lot! And lives putting everything in his mouth too - particularly zips on coats which is annoying. That special needs toys website has some fab chewy toys that he loves.
Another one I found recently was sense toys .co.uk I think it was.

[Peridot]

Ps have a look in your local library, you'll be amazed how many books there are on autism, support and books written by parents of autistic children.

[Dynamo]

Marti, first of all, big hugs. You have been given some fab advice. I have been on loads of NAS autism courses (these are definitely worth it, some are day courses, others are spread over a few weeks) and all have been really useful and practical. There is a helpline you can ring and they just very friendly and knowledgable.

The PECS, as far as I can tell is basically a picture book that is unique to the child. They use it as a means of communication (from the child to the adult) but also a way of structuring a day. Routine and structure are very important to children with autism. So you fill it with things that are familiar to him and that comprise his day. For example, if you want to go to the park, as a very basic example, you have the book with pictures of boots, coats, transport and park. Then you show him the steps that need to be taken to get to the park. He may be a bit young for this example, but the point I am trying to make is, if I say to DS (age 9 with High functioning autism) "Let's go to the Park" he will get up and expect to walk out as he is, no shoes, no coat. I will have to say, "let's put our coat on, then we can go to the park" and break everything down into logical steps.

The best bit of advice form all the courses I have been on is, that, with the right support, autistic children have every chance of improving. That what you have today is not necessarily the whole future and that each child is individual and reponds positively to active support. I call this hope and I cling to it.

There is some more on PECS here from the NAS site
http://www.autism.org.uk/living-with...ents-view.aspx

[Peridot]

Forgot to say about what you said to the nurse.. I guess it's one if those things that becomes more normal to say with time, a bit like when you become a mrs or a mummy but eventually it sounds normal.
I think that is what is actually great about having diagnosis because you can say what it is and I use it a lot especially when Thomas is doing things like pulling dogs tails and finding it hilariously funny how people respond doesn't really bother me any more.. I've become quite thick skinned I guess.
I spent a lot of time saying "oh he's shy" etc but I can't be bothered with that anymore.
I think what you said was really brave :)
Great quote dynamo and totally agree that having hope is the driving force!

[Dynamo]

I think that is what is actually great about having diagnosis because you can say what it is and I use it a lot

Oh me too, a diagnosis is such a relief. I embarrasssed my mum over the summer, but I am fed up with making excuses when actually the person at fault is the adult, not the child.

We were in a shop and DS was standing quietly beside me while I paid. He had brought me something he wanted, and I must have used his name (D**) in reply to him. The shop assistant who had been making small talk with me, suddenly piped up with "Good Afternoon D**", he did his usual head ducking/hiding in my armpit and she said very sarcastically "D** isn't very friendly this afternoon" and before I could stop myself, I blurted out "D** is Autistic and doesn't like talking to strangers". My mum says I am belligerent, and maybe she is right, but I felt that someone had to come to his defence. Before diagnosis, I would maybe have tried to force him to be polite or at least acknowledge her, which is very unfair on him.

[Jack_the_Cat]

I hope you get the information and support you need soon x

[Peridot]

That's exactly what I'd do D - hate people thinking T is naughty/rude... At one point I had little bits of paper printed out to hand at people that stared / commented lol! Have to say that as well as being thick skinned I've had to learn to laugh more... Some of the things Thomas gets himself into are mortifying but hilarious at the same time!

[Aurora]

Marti, firstly to you. The other ladies have pretty much said all there is to tell you but I can only echo their words and agree that an early diagnosis will be so beneficial.

I work in an ABA School and I know that a lot of parents find Peach a good resource. I think the website is www.peach.org.uk

Wishing you all the best for this journey ahead. xx

[Aurora]

VickyS - I read your post with such a wide smile. Your son has made outstanding progress, I bet you are just thrilled with him. Will he be able to stay at his current school for secondary? I hope so, it sounds like it has done wonders (as have you as a parent I am sure....but that should go without saying )