hand holding and a shoulder needed...please

[tooearlymustdache]

that's it really

i've just dropped DD off at school and she looked so vulnerable and lost, that i wanted to take her back home again.

she's only wanted a girl in her class to agree yes that her gloves were the same sort of things as mittens, but it didn't happen. she seems blissfully unaware she is different, as long as she can dance and sing all day she's fine, but how long before she realises her peers are looking at her with narrowed eyes and don't 'get' her?

our initial assessment yesterday confirmed that yes, it's highly likely she is high-functioning ASD or has Aspergers, and now i've dared to open the National Autistic Society website i'm just crying and crying... everything on there relating to Autism is her.

please come and tell me she isn't now destined for a life of misunderstanding and confusion?

I remember reading up on ds in the early days when I first realised something was different about him. It's a really horrible feeling and I too cried and cried over it. Your reaction is totally normal.
If I remember rightly I think from your other post she is quite young (?). There is SO much that can be done to help her and facilitate her learning at any age but if you're able to start early so it will be even more effective. She has a loving and concerned mum, that is what she needs- you will support her brilliantly.
I have to rush off now, but I'm sure that lots of people will come and hold your hand soon. This place is so incredibly useful for that and for tons of fantastic advice too. Keep posting.

Hiya

I have to pop out now but will post properly later.

I understand and know how you feel.

thanks, i've been trying to get to talk to an adviser on the NAS helpline, but there's no-one available when i call. a really lovely lady took my details and is sending me some info through the post though.

i just feel so...useless i think the word is. and sad for her. she's only 4 and so vulnerable

Take time, breath deep and don't look too far ahead.
If you have concerns, speak to her teacher, write down your concerns and keep talking on here.

I really do know how you're feeling right now. I'm not as far down the line as you are. Although my dd I think is a similar age to yours. She's 5 the end of this month. What do school say? Do they agree with the latest assessment findings? I may be in a slightly different boat as school really don't think there's a problem. They say that she struggles to maintain friendships and her attention wanders off at times and needs a lot of reminding, but in their eyes, she's not SN. We are at the rather controversial wait and see stage.

I really know that helpless feeling. Our job is to protect our dc's and as soon as they're in school and under someone elses care and supervision it's always very hard. But when you're child has SN of course it's doubly hard.

From what i've heard on here from mums of older dc's with SN is that generally and overall it does get easier in a lot of ways. Do you have a dp/dh to support you?

I haven't seen your previous post I don't think. What traits concern you the most? Do they cause a problem at school? Are her teachers partiuarly concerned?

i've got few minutes while she does a jigsaw with her big bro, yes i have a DH, he's in a different place to me, physically and mentally right now.
(he's had to go away for work, but will be back on Saturday)

mentally he is dead against telling family members and the world in general about what is going on for us, although he's really open to the idea of support groups and maybe even courses. DD is his only child, i have adult DSs, and i think he's feeling very precious about her. i am too, of course, hence the tears.

her teacher is very much giving me the face whenever i mention any of her quirks, he says he hasn't noticed anything, but then again i've picked her up and found she's been sat in urine-soaked clothes for most of the day and he hadn't noticed that either

being only 4.5yrs now, DH and i did have reservations about her starting fulltime school, and now i'm wondering if she's gaining anything by being there right now.
i don't want to HE, i want her to go to school, i want to get a job eventually (i don't go out to work right now), i need the space

has anyone any experience of taking a child out of school after having started reception?

this is helping me so much, i could ramble on for hours...

I took my ds1 out in year 2 and HE'd and he went back into year 3 in a different school last year. He has been there a year and is happy.

Not sure if that helps you or not as you have said you dont want to HE...are there any other schools she could go to if you are unahppy with this one?

I'm so confused as to what i want really, the school itself seem really supportive - on the whole the 'institution' is fab, it's attached to a children's centre so the resources are all there (for now at least )

oh i don't know, if it came to it, i'd do anything to help her out

Go and buy a nice notebook and start writing everything down. Just do that for a couple of weeks - how you observe DD in and out of school, what she says, want teachers say, how you observe other children reacting to her. Don't prejudge it or filter it, just write it down.

A) it's cathartic
B) you can treat it like a kind of project but at the same time it will distract you from the shock and worry of the dx process.

After a couple of weeks you can start analysing what you have written down. It should help you spot any patterns (eg, does DD always have a melt down when she leaves school) and will hopefully help you work out some priorities (DD is always super-anxious in the playground, from my notes it seems to be the worst part of her day - so how do we fix that?)

What you need to focus on is getting any dx confirmed and absorbing that information. The battles (and there will be battles!) will come later. Cut yourself some slack and allow yourself some time to grieve. I think very few posters wouldn't agree that the time around the dx was one of the very worst times emotionally.

And come and hang out with us, shoulders, arms, hands, even wine are in plentiful supply!

Hi OP, we are exactly 12 months on from where you are now. We have 2 DS's and DS2 was 4 in aug and was dx with ASD on March 7th this yr. 12 months ago we had concerns over his development and speech and his nursery teacher took me to one side and said she had concerns as he was 'in a world of his own'. She didn;t use the A word, but I had no doubt what she was getting at. I cried all the way home and have pretty ,much for the past 12 months. It has without a doubt been the worst yr of my life, coming to terms with diagnosis and all the worry about school and the future, but things are getting better now. DS is still ASD but he has a full Statement of SEN and gets 1-2-1 support in mainstream school, without that he would not cope. I have to dash off now as i'm off out, but I will post more later. Have lots of hand holding from me too, I'll post later with some more stuff. You cry as much as you want, it's such an awful place to be getting a dx and 'coming to terms' with it, if that is possible. MN is a great support to me, and I hope it will be to you too.

Hugs to you and your DH xxx :)

The first time you are told your child could have x or y is a world stopper. You go through phases of accepting it, then no way everyone is wrong, then back to reality again and it hurts.

Let yourself be upset about it and a good cry wont do any harm but release you of some pressure at least :)

Your DH has also had this shock. I will say it took my DH a whole lot longer to come to terms that his son wasnt "ok" and needed help. It was the meetings he went to with me that helped it sink in slowly. I think we as mums tend to accept first.

She is still your lovely DD regardless of what could be wrong. It wont change her lovely ways. Look at it that now she just needs that support to help her with her future and having that help early will do wonders.

x

so many lovely replies, thank you

we kept a diary/notebook before our CAMHS appt, we left it with the nurse as we didn't get time to disuss it!
all our concerns came flooding out and..well...the rest is to be experienced i suppose.

i've spoken to DH this evening, he's coming round to it all now.

and she is lovely. she is charming, she's funny, she's super-happy and bouncy. and she probably has differing needs than we thought.