today we got the dx.

[drloves8]

This morning dd4 had her assesment and the peadi came back and told us that she has definatly has both autism and gdd.
Im a bit shocked because although both had been hinted at i was expecting a one or another, not a double dx.
The worst part is when she told me that dd4 is never going to catch up with her peers. Had a wee cry in the car comming home.
stupidly , i was hopeing that we`d be sent away with a " theres nothing wrong with her" ..
Peadi , gave us loads of papers to read , advice groups , support groups ect.... .... i really wanted to tell her to shove them...
However , dd4 was really good , had a lovely time ignoring the people there and drew a lovely scribble. .
Today i wish i was like dd4 - just a wee bit detached from it all, she doesnt care one jot and right now that seems ideal.

it is a huge shock even if exspected tbh. Give yourself a good week to get your head around it. I remember suddenly feeling lost and not sure what i should do next as hadnt thought past the dx stage.
How old is DD??
We are in herts and have a group especially for girls which is very helpful.
Also have a website but not very busy but might be helpful here
just click on chat.

So sorry to hear your news. It was a year ago that we got ours and despite knowing, we still had a glimmer of hope that the outcome would be 'Stupid neurotic parents!'

That hope was dashed and nothing has been the same since. However, during this past year we have learnt so much about our ds and how to help him and how to rework ourselves as a family for the good of us all and I no longer wake up in the morning wondering how the fuck it could have happened to him, to us.

My heart no longer breaks every hour (it still does now and then though) and I am beginning to come to terms with knowing that I will never come to terms with it.

I suppose what I am saying is that you can make your peace with it and things will get easier. There are some great ideas on this site for approaches to help your child develop and early intervention is key. When you've taken some time to recover ask questions, lots and lots of questions on here and in the SN world. There is a lot you can do to help your child. It really isn't as hopeless as you might feel right now.

Coming to terms with knowing i will never come to terms with it..... thats exactly it. I knew it was coming, loads of people (medical) have used the term "autistic tendenses" ... The hv gave us info on autism /lerning disabilities/special needs years ago. It just seems so final, like the last escape exit has been nailed shut and bricked over.
Its a bit like grief , but nobody has died....just all the dreams and hopes i had for my daughters future...shes not going to go to uni, or have a glittering carear, shes unlikely to get married and have kids of her own.Will she ever be able to live independently as an adult? . Why did she have to have both? her level of comprehension is so poor that they couldnt tell us how severe she is because shes not able to do the tests for it..DD4 is more disabled than we thought

lisad i signed up for spectrum girls the other week, hadnt posted there yet ,as i felt a bit of a fraud not having a dx then....see you there later.

Are you Glasgow/West of Scotland based ? I picked up the impression earlier that you might be ? Why do they think GDD as well as ASD ? I met a boy once with his mum that I assumed was ASD but turned out dx is GDD. I am quite confused by the distinction.

no , fife . am a glaswegian though .
The peadi has said she has gdd because she has severe learning difficulties, not just to do with autism. The autism i think is comming from the no eye contact, ignoring people , repetativeness , speach ,but repetative but dd4 doesnt understand what it means. the peadi is zoe claisse.Best in fife.

Gdd is to do with development in all areas . autism itself wouldnt mean a child would have nessesarily have problems when they sat by themself or crawled or walked,when they could self feed, when they show signs of toilet training reddiness. its like having a baby in slow motion iykwim?

DS1 was on track for all of above except was later to toilet train but I see what you mean. My parents live in Fife and from what i have researched Autism services are better than other areas of Scotland (but not sure about GDD). It will take , a lot of time for it all to sink in so don't push yourself to accept it.

Cyberseraphim i think thats whats getting to me, i thought you could only get autism or Global development delay, i didnt think you could have both. is dd4 just being greedy?

DD4 has a twin brother (ds4), he`s nt , never ill, funny bright sociable. when both of them are together it is very noticible how different they are. when its just me and dd4 (restof kids out to play ect), i forget theres anything wrong with her.... "wrong" , not the right word. Different is better.
just rambeling now, feeling sorry for myself. .... time to pull socks up and get on with it .... or at least make tea for kids.
Thanx everyone , your posts have stopped me being to negative, i think....i suppose the way im feeling is normal,and to be expected.

sorry that it's all come as such a horrid shock to you, getting two dxs like that.

drloves8- dd2 was diagnosed with ASD last summer, they couldn't say where on the spectrum she was, she was non-verbal, very poor understanding no imaginitive play. Next week i have to take her to the paed to find out where she is on the spectrum and in a way i am looking forward to it, Dd2 is now using and understanding at a 4 word level, she now plays imaginitive games with her toys (instead of lining them up), she can now write her name and dress herself. Things can change so never rule out things in the future.

Coming to terms with one dx is hard let alone 2, give yourself time and remember she's the same dd as before the dx. My dd1 has Aspergers (diagnosed 2 years ago) and now we might have to go through the diagnosis process again as we think she may also have dyspaxia, the thought of her having 2 dx's does scare me as its one more thing to worry about (and learn about).

drloves, it is a sort of grief, and just like bereavement (for the child you thought dd4 might be) it has stages of disbelief, anger, sadness,etc.

Give yourself plenty of time, and talk, talk, talk, to anyone who will listen.

And this forum is always here....

drloves, echoing others in saying that it is grief you are feeling. You have experienced a kind of loss and you will experience a lot of emotion on the path of coming to terms with the news. That path may never have an end, or you may think it will end and something will open it up again. Or, you may actually reach a stage of acceptance. There is no time limit or correct path, though.

I'm sorry you've had such hard news to take and I hope you can carry on being able to talk about it, if that's what you need.

I've just realised what I put about the two dxs might have sounded a bit tactless - sorry if my curiousity about GDD got in the way. I have 2 friends in real life with children with GDD and I have often wondered how it is diagnosed. I completely agree with Marne, professionals feel duty bound to give the worst case scenario, and not to build up hopes of great strides of development happening. However the average case is that most children will progress over time and reach their own milestones but it is very very hard to see that other developmental curve when all you want to see is the normal one. Personally, I don't think acceptance ever happens but you do learn to live on a daily basis without constant trauma. It's easy to say that is sour grapes but I do think some (not all) parents of NT only children can become consumed by trivial worries and can tend to be a bit selfish in wanting their trivial things prioritised by society. At least we are saved (however involuntarily ) from that.

cyberseraphim , , dont worry about the curiosity , i didnt think you tactless. in fact ive asked similar questions myself in the past, its how wee find out about stuff..... more likely to get a realistic answer from another mum , than from a doc- half the time the peadis talk in medic-english..
i agree with what you said about trivial things, before dd4 was born - i worried about very stupid things.
Feeling more positive today , dd4 and i just finished making cakes , she really enjoys the mixing (and sticking her fingers in the cake mix).very tactile child.

marne - i hope it all goes well next week for your family.
your post was very positive , and hopefully , we too will get there.

man...

well there is always hope

bear in mind that there is in fact a medical doctor lisened practising with downs syndrome.

unless she is so autistic that shes likly to always going to need hand over hand for basic self care tasks ,toileting eating drinking,

theres a good chance shell be able to eventually be semi independent

hope for rthe best prepare for the worst and enojoy your time together