ds just diagnosed with aspergers

[beckytuesday]

Hi everyone,
My ds who's 5 has just been diagnosed with asperger's (mild). I'm really down about it which is a pretty normal reaction, I guess. I've had quite a helpful handout sent through the post from the consultant but apart from that, am struggling to know what to do. What once looked like a difficult or naughty boy now is a kid with special needs. I don't know how best to cope with him and I feel angry, upset, terribly sad and so worried for him. If any of you are further down the line with this I'd really appreciate your thoughts and what works for you. I just made the mistake of inviting ds "friend" home for tea and it was carnage -ds was HORRIBLE to the poor little chap and then ended up sobbing hysterically in distress after I told him off. Should I just pack in all thoughts of a social life for him - or could he somehow learn to share, take turns and not throw wooden trains at visitors...? Help!

Hi Becky,

I just wanted to let you know that i know exactley how you feel my DD also 5, has also just been diagnosed with Aspergers over the summer. I have also been given no support from the officials (so to speak). But just to let you know that you have found the right place here, there are loads of fantastic parents here, whom have helped me loads.

beckytuesday, there are quite a few of us here who have children with autistic spectrum disorder dx's, including me!

What you are feeling now is a perfectly normal and understandable reaction, so don't beat yourself up, and don't give up thoughts of a social life for your DS - absolutely not! Children on the autistic spectrum may progress differently to children who are not, but they can, and do, make progress - don't doubt it for a moment!

Have a look at the National Autistic Society website as a place to get started - and look around for support groups in your local area. And keep posting on here!

Best to you

Dino

Thanks for getting back to me so quickly! It's so nice to think there's a mum out there in the same boat. How are you getting on?

I'd love to know what have you found helpful in terms of dealing with tricky behaviour, if you have time...Have just had the evening from hell with ds and feel so bad for seeming to tell him off constantly for things I suspect he can't help doing, poor little chap.

Oh there's two of you - thanks guys! This is lovely!

I find with my DD that i need to explain things about bad behaviour really slowly in very simple terms, its really hard as this is still very much a learning curve for us, its hard because DD is extremley smart people often just expect her to understand whatever is said to her, but she very rarely has the ability to express herself freely. And this quite often can lead to tantrums.

My main problem at the moment is school (i have posted a thread).

How your DS doing at school ??

Well. I stand in the playground in the afternoons in absolute trepidation, knowing that ds will emerge like a pressure cooker waiting to go off, desperate for a wee (won't go at school unless he has to) and almost always furious with me over something. Getting him away from all the yummy mums, with ds2 in pushchair, without a meltdown is just so stressful.

He seems to be doing Ok in all the work. It's just the social side. The whole parties issue makes me feel physically ill. He only ever gets asked if it's a "whole class" one. I'm tempted to tell the other mums he's aspergers to make them feel bad so they invite him - is that a really terrible thing to do? He just gets so upset and obsessive if he's left out, and goes on and on about it for weeks - months - afterwards.

School wise, I am very fortunate that it's a pretty regimented school which suits him very well. I really hope you get your school sorted for your little girl, one way or another.

Yes becky we definatley seem to have similar problems, DD has had alot of accidents getting to the loo on time, she says that she doesnt mind using them, but i know that she hates to lineing up for things. And as the teachers line the kids up before breaktime to use the loo, i think the DD probably just takes off into the yard so that she doesnt have to line up with the other kids.

I also dread picking up time, i also have a younger DD to deal with who is more damanding than DD1 to be honest.

Ive not yet encounted any problems with the other mums yet!! however i would have no problem in setting them staight , so no i dont think its wrong of you to let them know about your sons SN, as long as you are ok with that.

beckytuesday

I knew that feeling of treipdation all too well when my son was in Reception. Dreaded every afternoon and the wagging finger from the class teacher.

Your son is likely to be acting as he does when he leaves school because he can barely cope when he is there. He is bottling up all his frustrations.

I would seriously consider applying for a Statement of Special Needs for your son from the LEA. It may go some way to address his social skills.

Look at IPSEA's website - www.ipsea.org.uk

beckytuesday
my son is ASD but pretty severe so I cannot completely realte to all the issues you will have to deal with. But had to post about how isolated you are feeling.
It is such a difficult time when you first realise that your child has special issues and you will feel very emotional, and guilty, and protective and worried etc etc. But please don't see everyone else as being outside and indifferent. I bet that some of those 'yummy mums' are dealing with stuff too. It is easy to feel that you are fighting the world but you WILL find allies in strange places.
My DD has just started at school and i was anxious about what the other parents reaction would be when they got a look at DS2 in all his glory !! First time I had to take him to pick up I got a wide berth from the mums and some very odd looks but at drop off the next morning i just found a way to mention that he had autism and that evening one of the mums came up and started quizzing me and asking questions as she had just been told trhat her eldest DS may have aspergers. And another mum came up to chat as she used to work in a local special school for ASD .
You are not as isolated as you feel and some people will want to help. The others can whistle .
I lost a couple of years because i went out each morning prepared to stand in front of my son and tell the world to f-off. I think people were more alarmed by me that concerned about DS

I would fully agree with all of pagwatch's comments.

Some people do try and reach out. A so called "yummy mummy" came up to me after school a few months after I had managed to get my son a Statement. She went on to say that she had seen me get called in time after time during the reception year and had felt for me.

You do find allies in many places, often when you do not expect it.

Thanks so much for your messages, so helpful. Attila - I did ask his class teacher about a statement and she said he wasn't having enough problems - I suppose that's a good thing...?! What do you reckon?
Thanks everyone with everything. I am now goign to be brave about this and also go to teh support group near us - if the parents there are like you guys, it'll be great!
Also - I did tell my arch nemesis, she of the perfect docile little daughters, that Luke had Aspergers and suddenly she's being ultra nice to me, as are several of her coven. Instead of hissing at me, drawing their children away in fear and making the sign of the cross when ds and I pass by!