Anyone with recent AS/ASD DX for your child? How are you feeling now?

[Buckets]

Just felt like a rant and thought others might like to join me for a vent/rant/share/burst of feelings .

Cross with DH for nagging me about DS's disability allowance application which yes, I have been procrastinating about. Said I need help, he looks at it and slags me off for procrastinating and offers to do it himself. Not what I asked at all. I want us to sit down and do it together, it's really hard to quantify the care that DS needs as well as quite an emotional thing to list all your child's shortcomings.
I'm also finding it quite hard to face up to my importance in his life, now that I am not just a parent but a carer too, thanks to his DX. It's just a bit scary and makes me weepy when people say nice things (so don't, all right?) I dunno, maybe I had this concept of SN parents as some kind of saintly higher beings and suddenly finding myself considered one makes me feel a bit of a fraud.

Yep,I understand everything you are saying.
My DS has been diagnosed in the last few weeks, though we realised long before that what his problem was- AS. It is scary and overwhelming realising how important you are, but you are a still mum - just as you were pre-diagnosis. None of us are saintly, we are just ordinary people muddling through, though I would like to think our children teach us the really important things in life - family. I certainly feel a better person - not because of what I do, but because my eyes have been opened to a new perspective on life that is not about money and materialistic things. I can make some almighty cock ups which result in meltdown with my DS, and yes there are some rows about what we are doing with DH. But my DS still wants his mummy before anyone else, saint or not.

Filling out DLA forms is always a nightmare -
we spend our lives been positive. We want to shout it from thre rooftops when they do something fantastic but no one enjoys sitting and describing our childs every little difficulty. Hey, and getting your DH to do them sounds like a great result to me .

Don't beat yourself up. You are not a fraud, or you wouldn't be posting on this board.

well my ds has no dx (yet) but I have filled in the forms, sent them away and got dla, middle rate... filling in the forms was really awful and I had the help of an expert.... it is brutal stuff about your lovely child that is all negative.

you need help to fill the forms in, really, there is no way I could/would have done it without the help of my ds's early years support teacher, who had seen these forms and knew how to say what level of care etc was needed and what phrases to use.

I am weepy whenever I talk to people about ds and his asd type issues... really trying not to say anything nice, I think weeping is part of the process of coming to terms with it all. .... but is there a good person who helps with your child's needs that could help you write the forms?

(I feel like a fraud too)

Hi buckets,hope you are feeling a bit better today.

I wanted to give you some positives as i felt exactly like you did when we got dx for ds1 (AS).

You suddenly have to make a lot of mental changes of how your life is going to be and change the dreams you have for your dc.

I spent ages putting off the dreaded dla form because it is so negative and that is so hard to do when you are already feeling low.
There are people who can help with the form and we have a Welfare Rights office here who are part of the CAB.It is worth asking if they can help as you take it for normal what you do for your child and i bet you anything it isnt what nt families do!!

Anyway we are now just over a year on from dx and i feel really ok about things and have come to accept the dx and the person that ds is and always will be. It has taken a lot of time but we are there now and I know that you will get there too. Dont forget to take any offers of help because you need to stay on top form or you cant help ds as well as you could.

You will get there!!! Good luck.

We don't have DLA (live in France) but there's something very similar. Downloaded the form the other day. I felt such a fraud even looking at it, even though I know that there are probably things that DD can't do as well as a child her age (like I would know. She's my eldest! How can I tell what a NT 4 year old is capable of). Even so, we're really struggling right at the moment with SALT payments and private school for two days a week next year, so asking for money would be really sensible but I can't FACE doing this form. This morning I emailed a local autism charity (DD prob isn't ASD, but similar in many respects) in the hope that they could talk me through it. Met one of my new neighbours today and DD pushed her daughter over. Ended up running over trying to explain about DD, then thinking, why did I do that? They've only just met her and already I'm telling them she's different! What do you tell people when you meet them for the first time? Do you say nothing and give them a chance to see DD as a person first, (in which case they'll probably wonder why she behaves so oddly) or do you tell them and have them ignore DD completely as she's obviously going to be weird? Sorry, off topic i know, but since knowing that DD is "different" I'm trying to work out how to handle other people's expectations when we're out and about. I've only just moved here so I really WANT people to get to know me and DD properly!

My Ds was diagnosed 3 weeks ago, we're just starting to get our heads around it.
We're not applying for DLA, I don't see how he would be eligable, but I have seen how scary the application form is!
Can you get help from someone who knows the 'system' for these things?

Good luck

I am just applying for DLA and ds was dx'd six months ago.
The specialist advisor gave me tips. If you look on cerebra website it has a fantastic guide to filling in the form.

I also feel like a fraud,but have realised I am having to give extra help, for example not being able to take ds to the barber [sensory problem] and always having cut his hair myself at home, I never thought of as extra, but of course it is, most people can go to the hairdresser!
Good luck

Well, we had a go at a first draft last night and I burst into tears on the first page so DH sent me off (doesn't help having 8m pg hormones I guess LOL.) He says he's got about half of it done (I'll look when he's finished and then we'll seek help for things we're stuck on) and we had a really good talk afterwards.
I just kept repeating like a mad woman "it's not my job" because it really goes against every fibre of your parenting being doesn't it? You've spent the childs's whole life trying to be positive about them - I guess I've been worrying that I might not be able to get back there once I start listing negatives like this.
Also, it really does score up your family needs and suddenly put you firmly in a box marked SN Family. I hadn't considered that I would be labelled myself and how I would feel about that. Obviously it's true and we'll get used to it but I had really underestimated the effect this DX was having on me.
Anyway, onwards and upwards, we'll get the bloody form done.