Aspergers Again!

[duchesss]

Hi all,

I've been really enjoying reading the thread started by Unfitmother but I hope nobody minds that I've started a new thread to introduce myself as I've got so much I want to share and ask.

To cut a long story short, we haven't had a diagnosis yet but we're pretty sure that DS (nearly 4) has this condition. We've been referred to the community Paed and our approintment is in a couple of weeks. It started a while ago when he was referred by his lovely keyworker at pre-school to an Early Years Support Worker because he wasn't really interracting with other children at all. We'd also been aware of some odd things for a while -- difficulty managing emotions, made-up words and phrases, obssessions, sensitivity to slight wetness and sounds... I could go on.

I got hold of the Tony Attwood book and it was like I could open any page and my little boy would be jumping out at me in the words!

I felt very moved and reassured by reading the other thread on how you felt at point of dx and just after.

At this point, we're feeling partly very relieved that all the struggling we've been doing isn't just down to our crap parenting and there might be something beyond our control. It's also a wonderfully freeing process to let go of any expectations we might have had on DS that were causing tension. But there is also fear and sadness -- all these things that were so cute as a toddler, how will they look when he gets older? How can we keep him feeling good about himself in the face of wider society?

So it's been a godsend to come on here and read of others' experiences, it really helps to normalise our situation because up until now it was just us, baffled/disapproving grandparents and friends with 'normal' toddlers. All we've been wondering since he was born is 'what on earth are we doing wrong?!'.... it feels so nice to gain some understanding. I wish we could have known from day one.

Anyway, things I wanted to ask are:

how can we go about meeting other parents with Asperger's children?

what were your asperger's children like as babies?

how did you get on with potty training? (still an issue for us... another story)

and finally (for now) what things do you celebrate when you want to feel positive? I'll tell you ours:

DS's made-up words have given our family its very own language!

His lateral thinking and mad gestures are pure poetry

We now know more about lawn-mowers and roadsweepers than you could ever imagine possible, and have become genuinely excited by them which has added a whole new dimension of enjoyment to being out and about or in the car.

We've never really felt much pressure to buy toys or the latest thing

DS is the most beautiful, clever, funny, happy little boy we could possibly want and being in his world with him is the best fun ever.

Hi Duchess. My DS is 4.3, and doesn't have a DX yet either - IMHO he's somewhere on the borderline between language disorder and High Functioning Autism. Paed didn't want to diagnose when she saw DS in April, but wanted to keep an eye on him.

In answer to your questions:-

1. there may be parents of kids with ASD that live near you on here or other boards. alternately you could try looking for a local NAS group. If you do get the DX, you will probably be able to go on an NAS course for parents with recently diagnosed ASD.

1. DS toilet trained quite late - 3.5, but is now completely out of nappies, day and night. He never really got to grips with the potty = instead he just started copying what I did on the loo - for a month or so without actually producing anything, then it "clicked" and he started weeing. Took a good few months after that for poos on the toilet (thank god for laminate flooring is all I say!!!).

Positive stuff

Because of his speech problems, I am far more aware of communication, and how much I take for granted, and how much small improvements can mean.

DS loves animals, so it's got me a bit more into animals too.

I'll let you decide whether acquiring a collection of Schleich horses, plush unicorns and my little ponies is a plus or minus .

DS is a gorgeous, happy boy.

Thanks TotalChaos.

I look forward to being where you are with toilet training (and I sure wish we had laminate flooring!).

That's such a good point about the heightened awareness of communication as well, I'm finding I'm much more careful in making sure I'm coming across properly and allowing enough time for DS (people in general!) to process what I'm saying.

at the my little ponies

Duchess, it might be worth looking into NAS courses now, rather than wait till you get a dx. I managed to get places on several courses long before it was official for ds. Early intervention is vital for AS and if you're unlucky, as we were, you could wait several years to get it confirmed, during which time you could be learning essential strategies for working with your ds. Have a look on the NAS website for courses in your area. Help! courses and Earlybird are particularly good (we were too late for Earlybird though, but I know lots of mums who've gained a lot from it), and the Help2 courses on specific subject like sensory issues, social stories etc have been invaluable to us.

As for meeting other parents, ask around at your GP surgery or social services about support groups in the area (or you might find them listed in local press). Or agencies like Barnardos, Contact A Family etc might be able to put you in touch. Your paed/CAMHS should have info too.

Also, read everything you can get hold of about AS. You will have to work very hard to teach your boy social and emotional skills unless you're very fortunate to have support in school or elsewhere to do this for you. But essentially most of the work will be done at home, and that means you.

thanks so much, I'm off to the NAS website now x

How will you keep him feeling good in society?

Things that really helped me, as a child with an ASD (er a few years ago now :

A house with clear rules.

A school with clear rules and a sense of order. And desks that all face forwards not in a group. Working in a circle is very, very stressful for us because we're face to face with so many people and body language and eye contact and noise.

Friends who love us for ourselves, not for mimicking perfect human behaviour.

Books on behaviour so we know why on earth people are waving their arms about and contorting their faces.

Rooms with no flickering lights, strong smells, sudden loud noises.

Someone to advocate for us and realise that pushing us into what we feel is unsafe territory just scares us silly. It doesn't toughen us up.

Someone to realise that bullying people with an ASD is amazingly easy because we're so sensitive to touch, so easily fooled, and so keen to make friends without being able to see if they really are friends or not. We need help.

People with patience. Because most of us can eventually fit in with society well enough (for a few hours at a time) that no-one notices, and we can fit in with each other really well.

Positives? Loads. We're reliable if we know what we're doing, we have great memories, we are specialists, we keep going when others would have given up ages ago, we're fair, we are great seekers of social justice, we're loyal friends to those who can make the effort.

Questions? Ask. Anything at all.

We're pre diagnosis as well and I would second getting on a communications course. It really opened our eyes and ds is so much happier and easier to manage.
We have had one to one support for ds in preschool for 10 hours per week. That might be worth looking into.

{{lightest hugs}} What an insight. thankyou. XXX

I would reccomend the NAS website and do you have a local Parent Partnership group? We went to few courses run by them

Amber, thank you so much. Really really helpful to have your perspective. x

Hi Duchess
We are exactly mid diagnosis at the moment (it's taken 2 years to get to the beginning assessment point and now we are actually half way through the 5 or six sessions that make up the multidisiplinary assessment)
My son has just had his eleventh birthday

To answer your questions:

I have met other parents with aspergers through a local support group run by the county council. (they run courses)I've also met them through school

As a very small baby...ds was incredibly hard work..nothing placated him. He screamed constantly..he slept poorly. From 6 months he was much easier although rarely noticed if i left the room. He didn't point...he didn't look for me. At six months he started saying words ..by about 13/14 months he was speaking in full sentences ...like he'd learnt it from a manual ( lol! and i thought this was normal at the time!).

Potty training was ok

i celebrate..
His hilarious sense of humour.His happy-go lucky disposition.
His unique cleverness..his 'thinking outside the boxness'
His kindness..he hasn't got a malicious bone in his body
His loyalty..
His honesty...

i could go on and on...
He's wonderful (and i am missing him very much this week as he is on a week long activity holiday with the school )

My DS is 3, has DX, still in nappies as has chronic diarrhoea so I'm not even going there until we've seen a nutritionist.
As a baby (after 6wks of reflux hell) he was incredibly chilled out and unemotional, he only cried when he was hungry or had hurt himself, only laughed when Pocoyo was on tv. As I had a toddler only 20m older it was very easy to forget about him and push the feeling of unease to one side. He's always slept fantastically and eats like a horse (steals fruit at other people's houses) but wasn't interested in speaking for ages (but understood tons of vocab) or engaging with people. I had to teach him to hug and set up affectionate rituals (eg 'ram, nose, kiss') in order to get anything out of him.
What we love:
His enormous vocabulary and precise speech mean he comes out with the most hilarious and surprising things.
Not an aggressive bone in his body.
Watching his social skills improve is a daily joy, hearing the shrieks of laughter and fun when he and his big sis play.
Knowing that one day he will be an incredibly useful person to have around!

Um I think you might live near me??? Not sure why I think that though. (south-west UK???)

If you do I can introduce you to some parents of kids with AS.

Ignore that I think I'm confusing you with someone else (although if you do happen to be down this way I could still introduce you to others!)

btw DS was a happy smiley if slightly passive baby.