what can i do to help him?

[porgie]

i posted a couple of weeks ago, about my ds who was not allowed to go to a nursery as he had been referred on his 2 year check. we have subsequently had the check and the consultant has mentioned possible ASD. i have had my suspisions for a while so is not a great shock for me, but my husband is upset. he says things like, "he won't have friends". We have just recieved our speech and language referral questionaire, waiting now for initial appointment. the cons suggested portage, don't know much about this and have got hv involved, she is nice! fell like i should know more about this, you are all so knowledgeable, i suppose you have been dealing with this for years! just would like to know how to help him progress while we are waiting for further referrals and what i should be asking for. sorry its long xxx

[kettlechip]

hi porgie, I missed your earlier thread but why isn't he allowed to go to nursery? ds goes to 2, and we've been under pediatric care for almost a year. It's done him the world of good.

And it is very upsetting, especially at the stage you're at, when things aren't too clear. But many people with ASD have friends and even relationships and children, so you shouldn't presume anything at such an early stage.

[nikos]

Hi Porgie,
Welcome to the boards. The thing I found most useful with my ds (suspected ASD) was to do a More then Words course with my local speech and laguage therapy unit. It teaches ways to help our children communicate and really brought ds on. Go through your HV and there should be a course near to you.

[amber32002]

Can't tell you a lot about portage, but I can ramble on for hours about ASDs since I'm on the autistic spectrum.

Which 'him' are you trying to help? Son or hubby? Sounds like hubby needs a bit of help too, to me? "He won't have friends" is very unlikely. Last count, I had over 20. BUT as a young child, none. As a child at primary school, one. As a child at secondary school, one. As a person in my first job, none. All those early friendships were really me just following someone else round, not 'real' friendships. Friendships happened only when I was old enough and mature enough to work out the rules. These days they can teach the rules,if you can get the right help.

Top tips: We like routine. We like to know what's about to happen. We're not good a social stuff, eye contact, being touched unexpectedly. If you can find a way to explain what will happen the next day, and what will happen today, and when, then that really helps. If there's a change, expect us to run/hide/scream/go completely silent and shocked.

We can hear everything all at once, so the only way to stop the huge noise is to sometimes pretend we can't hear any of it.
We can see amazing detail, but not much of it at a time, so will miss the 'big picture'
We can smell things you can't, so perfumes and aftershaves are maybe like standing next to a choking smelly bonfire.
We can feel the slightest change in texture, so clothes can feel like sandpaper, labels in the clothes like a knife digging in.
We can sense the tiniest changes in the taste of something, or the texture of it, or the coldness or hotness of it, which means meals can be a battle.
We can keep going for hours, repeating ourselves for comfort and as a way of learning. Very irritating if it's at 2am, 3am, 4.30am, 6am....
We're bad at noticing what's wrong with us. We can be really ill and not notice, or injure ourselves and not notice. Or overreact to something tiny.
We're often very very good at something, but you may not realise what it is as you wouldn't see the world as we do.

Einstein was probably ASD. So probably was Leonardo da Vinci, and probably Mozart, and probably Bill Gates the multibillionaire owner of Microsoft. Some of us get to be that good. Not many, but some. Read up on Dr Temple Grandin if you can - she's a brilliant role model and a lovely lady, and is autistic.

So, to your hubby, do not despair. You may have a specialist, who may be a very happy person with the right help and support. See what the future holds for you all. Marvellous people on here to talk to, too.

[porgie]

amber, was nearly in tears reading your post, it is so lovely.
were you happy without friends? or did you feel isolated?

[porgie]

we took him to a nursery that used to be attatched to a private school (up their own arses!) i told them about referral and lack of speech, thought it was best to be honest, and they said they would allow him to come for a trial but not full time untill the assessment. we went twice. the first time for an hour when i stayed with him, he was ok, just didn't do what they said or join in. the second time they asked me to leave him so they could "assess" him, when i got back he was sobbing with an ice pack on his head, he had thrown himself on the floor. the headmistress said she didn't think he was ready for them and to leave it a few months till his speech was better then maybe try again. we are now trailing him at another nursery, they are lovely, we havn't said anything about him, just that he hasn't been to nursery before and is wary of other kids. we have been staying with him for an hour and a half and they have said we can continue until he is settled. he kept going to play on his own today, just kept making sure i was still there.

[mehgalegs]

Don't know much about ASD but my son with GDD has been having portage for over a year now. It has done wonders, especially with his communication skills.

[jg3kids]

Amber,

Thanks for your post. It's good to hear from someone on the spectrum with a positive take on life with asd.
My ds is 3 1/2 and has severe autism. Is still non verbal and in nappies. Who knows what the future will hold for him? My fear is that he may well be so affected by autism that he'll never speak. I have friends with teenagers (and older) with autism who are self injurious and still in nappies etc.
I can only hope and pray that he grows to be as eloquent and graceful as you!

jane
x

[porgie]

what is dx? i find all these terms confusing!can anyone explain what will happen now, and roughly how long it will take. he has just had his assessment done(think it was griffiths test?) should know more am a senior theatre practitioner, feel so out of my depth though!

[porgie]

whats ep?

[kettlechip]

dx is diagnosis. not sure on ep..

[luckylady74]

ep is educational psychologist (sp)

[amber32002]

Porgie,

Was I happy without friends? Fairly, though I always wanted to learn how it was done, and was so very sad when other people bullied me instead. I would happily spend many, many hours with my hobbies, which were predictable and routine and involving. Being with people was SO confusing, as one minute they were friends, and the next they weren't, then they would be fighting with each other, then they'd be friends again...and I couldn't begin to guess why. It was a total mystery as I couldn't see any body language, facial expressions or hear any tone of voice to tell me what was happening. And few people wanted to be interested in my hobbies. There was zero help as this was WAY before anyone had even heard of Asperger syndrome, let alone realise girls could have it (shock, horror!).

We're 'kids' a long, long time. Social things you learn by age 5 we might not understand until age 20 or 30, but we probably do learn them eventually. But we're never going to be brilliant at understanding the people around us or stopping bullies. Some can't manage those things (yet) in the same way, because the brain wiring just isn't set up to communicate with the outside world. But the odds are good: If the National Autistic Society is right, 4 out of 5 will make pretty good progress with the right help and support. And there's a lot of research being done that might help absolutely everyone if they want it, too.

So...top tips, keep to a routine if you can, let us have a safe hiding place with a soft blanket or duvet to hide in, let us do repetitive things to relax, don't expect eye contact, don't expect us to cope with social things without a day off to recover and do look after yourself too. Take all the help you can get. We're often hard work!

[HelensMelons]

Amber, thank you, you also replied to a thread I put on about hobbies - thank you so much.

Your comments are very insightful and encouraging.

You have helped me feel better - you have been reassuring and that means a lot.

My DS2 has a lovely old blanket - it gets folded up each evening and put on his pillow to put his head on to go to sleep.

Happy days!