I'm so sad . I feel like i've lost her.

[Floopytheloopy]

First of all thank you for reading.

I have a dd(4)who is more than likely on that very broad and varied autistic spectrum and each time I think i've got my head around the probability I lose it again and I go into mourning mode. I wish I could just snap out of it and pull myself together. But like dd doesn't have the tools to do certain things, I don't seem to have the tool to just move on and accept it.

I've had my concerns about dd for a long time now but it was the classic situation of family members and hv's saying that she was just behind and that she'll catch up etc. Pre school showed their concerns and she has recently started foundation class at school. This is going ok. We have a home/school book as she has had a few tantrums and sometimes been very defiant, but never the less, it's going better than originally assumed.

You're probably wondering why i'm feeling so low if things are going better than originally though. Well, dd seems to have becoming more aggitated at home and her tantrums, although much shorter, are much more intense and for completely bizarre reasons(to me anyway).

I don't want to dwell too much on her behaviour as much as my feelings. I can't get over the fact that i've essentially lost a daughter that I assumed I had. I try to get things sorted in my head and then I just think "will we ever go out for coffee and talk about boys when she's a teenager?......will she have any friends atall?will she get married, or have a job?" The second these questions come into my head I burst into tears and I feel like i've been hurtled back to square one again. I can't bare to think that this is just going to be a constant life long struggle for all of us. I can't stand the thought of people making fun of her and laughing at her disabilites, which thankfully at the minute she is blissfully unaware of. I see them though and it's like someone has just shot an arrow through my chest everytime.

Everyone always said it would get better, but the older she gets the more apparent things are become, so therefore does this not mean it gets harder?

Any words or comfort or experiences would be greatly appreciated.

I'm sorry if I have rambled on, but was really struggeling to cope.

Thanks again.

trouble I can see myself probably going down that route because it's all I can seem to think about. I've had depression several times in my life, so i'm definitely prone to it. There's such a huge waiting list to see a counsellor isn't there?

I completely understand why this period would be a normal one, but I just can't get my head around accepting that from now it's just going to be an uphill struggle. I've struggled enough in my life before all this and i'm just wondering where i'll get the strength from.

Non of my friends have kids so I can talk to my friends about it but they don't really understand where i'm coming from.

Goodness, I sound such a mess don't I!!

Do you get a chance to go to any support groups to meet families in similar positions? It might help to see how different people come to terms with this grief in different ways. It will also show you how much love these parents have for their DCs. And the plans they have for their DCs - even the mightily revised - often changing plans.

It is recognised that finding out your child has some sort of special needs triggers a process very much like grieving. You need to say goodbye to some of the future you thought you had and come to terms with a new picture. This process involves denial, anger, sadness,... the same as any other grief.

I think that not knowing what the future holds for you may be making it worse. How can you come to terms with the new future if you don't know what it is?

Has your DD been through a formal assessment/diagnostic process? If not I think it would probably help you to do this. It could also help her to get the support she needs.

You could also see if you can find an ASD or AS support group in your area. The parents their will be willing to share their experiences with you and help you build a picture of the future.

I totally understand how you feel right now as I am going through the same thing with my ds and I am only at the assessment stage! For AS and yes it is breaking my heart so I sympathise with you 100%

Firstly you are thinking to far in advance and that is going to do you harm and put you at a low eb.

Look at your lovely dd..........you gave birth to her and she is still there :) nothing will ever change that. You havent lost your dd what you feel you have lost is her future and how she will progress in it. And yes some ppl are cruel and stare etc but that is just human ignorance. I have learnt with my ds to look them straight in the eyes with that "is there a problem?" look and they soon go about their business after that. And I have found if I am relaxed with it then it doesnt pass bad vibes onto my ds.

Dont think on the down side. With the extra help she just may go through life in leaps and bounds knowing her own limitations as she matures and with your support I am sure she will do well :)

Your love and support (which I have no doubt you give :)) will give her the confidence to deal with her future battles!

Take each day as it comes. Today is a good day for me :) tommorrow? who knows I just dont beat myself up about it anymore and take each day as it comes (bad days need chocolate! )

auntevil I wasn't even sure that you could attend these support groups if your child didn't have a diagnosis.

I suppose because she's not always obviously got a problem we've held off from seeing a specialist. I know many of you wont understand that, but we did take her to the gp and she suggested that giving her a label would do her no good what so ever and that a lot of children are wrongly diagnosed and it can ruin their lives. She suggested that we waited for this term to be over as school was going to be the real test.

As I type this my heart is beating so hard and i'm feeling sick with anxiety. It's all I ever seem to talk about and it's almost becoming an obsession. I wish I knew what the best thing to do was.

Hello, i feel ur pain and ur hurt..my DS had brain injury at birth caused by the hospital..as a result suffers from a rare form of cerebral palsy..
I want u to be strong..ur DD needs for u to be there for her..u need alot of patience to win this war..never doubt..always believe ur DD will turn out just the way u want.
Quit crying..it only makes things worse..think of things that excite ur DD and activities u both enjoy.I experienced all these from my DS(5) and living each day at a time..all is going well..one of the things that helped me was reading my DS body language and loves music..which really helps to calm them down..
Just hold on, be strong..this is ur storm..go through it and hold on!HTH!

Al1 and coff Thank you for the support.

I do have days when I look and her and think "I don't care about what you may or may not have, I am so proud of you and love you more than I thought was possible". Those days I feel strong and I genuinely don't care about anything else(to an extent obviously), but on the bad days I feel like I must be a bad mum, because i'm not focusing on what I need to be focusing on which is now. I can get very resentful of her differences sometimes i'm ashamed to say. When she does the repeating a phrase thing again and again I sometimes just snap and shout at her to stop. Sometimes she does and sometimes she'll throw something and say "no mummy, i'm just saying.............."and then repeat it AGAIN! This kind of repetative behaviour can really mess with your head can't it.

Apparently nobody wants to play with her at school, which doesn't bother her at the moment. It's killing me though. She's had no invites for teas etc. She had a party invite once and she had a meltdown just before we were due to leave so we couldn't take her.

I have been there myself and the only things that helped me were a family in a similar circumstances and a homeopathic ignatia, which is a shock/bereavement type remedy.
You will learn more as you go on and life might be different but it will become easier the more you learn and you are prob bound to discover lots of things that will make a difference.

Don't get me wrong, she really does have her good points. She's loving, bright, has a great sense of humour and loves helping and sharing. Every now and then she'll make a friend and I have seen other children talk to her, but she gets overwhelmed and will usually lose the friendship with being overexcited and will want to hug them and hold their hand all the time. She'll come home from school and say "so and so doesn't want me anymore. The don't like me. Nobody does". What do you say to that?

Floopy

i totally understand - you are not alone. It is hard to let go of the simple and modest dreams we had for our lives isn't it?

I'm still in grieving mode - my ds is 5 and we first starting looking for answers nearly two years ago - but I do feel more at peace in my own mind than before.

I'm by no means out of the woods but it does get easier I promise.

"I suppose because she's not always obviously got a problem we've held off from seeing a specialist. I know many of you wont understand that, but we did take her to the gp and she suggested that giving her a label would do her no good what so ever and that a lot of children are wrongly diagnosed and it can ruin their lives".

I'm not doubting you whatsoeverbut if the GP really did tell you that, then this is absolutely appalling. She did you a huge disservice by uttering such garbage. "Labels" should only be seen too as a signpost to getting more help.

In your situation I would see another GP (change GP practice if necessary) and insist on a referral to a developmental paediatrician.

BACP have a list of counsellors and they won't charge the earth. Also you won't have to wait an age to see someone. NHS counselling is very limited in scope and can last only 6 sessions.

She is still your DD even if she is on the autistic spectrum (which seems likely), you haven't really "lost" her. You are grieving and that is natural. You can grieve and should do so but you cannot let grief get in the way of helping your child through the maze that is school. You both need answers and additional support. Look at the NAS's website. You've had such concerns about yoru DD for years but have been dismissed by people who really do not know what they are talking about. You know your child best of all and your concerns should not have gone unheeded.

You need now to become her advocate because no-one else is better placed than you to fight for her educational rights. Also no-one else will.

I put it to you that your DD could be now becoming more aggitated at home because she is now internalising all her frustrations of the school day. She is likely finding it almost impossible to now manage there without additional support. I note with sadness she is becoming socially isolated there. School need to do something and so do you.

Is your DD known to the SENCO or on the special needs register they have?.

What Attila said is right. Labels don't ruin children's lives, lack of support does. If she starts school and needs lots of additional support you then need a diagnosis and a statement. My DD1 started high school in Sept 2009 and couldn't cope. She got a diagnosis of Asperger's syndrome in May 2010 and a statement in September 2010. That's a whole year of education needlessly missed.

If someone offered me the opportunity to get everything in place earlier I would bite their hand off.

Floppy - you need to get her a dx now.

And you need to decide what your first thing to help her is going to be. If you read over diff threads there are loads and loads and loads of diff things we are trying to help our kids. Some of us have had so much success that our kids are pretty much almost 'normal' now.

What you can try depends on where you live and how much spare money you have.

Here's a list of things I have done, which have all helped my DS who has a dx of Aspergers

• Omega Fish Oil
• Epsom Bath Salts
• Reflexology
• Auditory Integration Training
• Retained Reflexes Therapy

DS got a dx of Aspergers easily a year ago, and yet now I am absolutely sure he wouldn't get a dx.

I'm not suggesting you do those therapies, other people have tried many other things. Just showing you there is no reason to despair. No reason to think you can't significantly improve her life - if you start working on it instead of listening to people who tell you 'labels' are bad.

You can do this. We're all here to support you.

Your DD will have a fabulous life.

Hi Floopy, totally sypmathise with you. it is a grieving process when you find out your child has a disability. My ds is 10 tomorrow, after lots of tests etc, had to end up going private for diagnosis. he has severe autism, pica, low muscle tone, gdd. I found out about this when he was just 4. Although i have accepted it, it does still often get me down. Have another 2 ds one age 12, 1 age 8. They are fab with there brother, however i always say what if, n how can he not be like them. I love my ds with all my heart as you obviously do with you dd too, but it doesnt take away expectations n worry. I feel lucky to have him and know there are lots of people worse off than me. My ds doesnt communicate, so being 10 tomorrow i tell myself maybe this year he'll say even 1 single word. The older he gets, the harder it is because to me i feel i have a baby in a 10 year old body. I would never be without him. Keep smiling, never say never. Your doing a wonderful job, maybe your gp can give you something for short period to get through this bad time. Hope you perk up soon, and even if friends etc dont understand you always have here to come on to and we will all understand where you are coming from. I only joined a recently and for me it is a godsend to know there are other people out there in same situation, and i am not alone. Take care, :)

Attila-Hi. First of all I hate being quoted! Mostly because it makes me sound like a complete idiot! I actually did write that wrong. What I meant to say was that because she has had weeks at a time when she seems to be where she should be for a 4 year old we haven't got anybody else involved as of yet, apart from the health visitor and inclusion support, both of whom said they thought she was just a little behind. The gp's comments on the otherhand are unfortunately true. I have to admit at the time there is almost a sense of relief as you think they must be saying that they believe that nothing is wrong with your child. Normally I trust this gp and only ever go to her. Her point was that she's seen her lots of other times for various reasons and she has never had any concerns about where she was developmentally.

So to sum up, I suppose I did agree with various people that I should see how this first term goes. As I said before, that will be the real test.

I understand that I have to be strong for my dd, but it's very hard to find the strength sometimes as i'm sure you're more than aware. You sound like a very strong and knowledgable woman. That is to your credit and thank you by the way for the advice. However, not everybody is as strong and knowledgable as you may be. Believe me I have done my research. Sometimes to the point of obsession. Naturally though, I have to admit I am not a strong person and whereas I understand that I have to find that strength from somewhere, it's going to take some time and ajustment to do so.

Ohhhh Floppy.

It's OK to grieve, and it's OK to take time to find your strength.

We didn't all use to be strong. We found our strength on the way.....

Def try and find a local ASD support group. I think you need a hug in real life, which we can't give you.

Take everything one day at a time. It will be OK.

indigoBell-thanks for that. I have always been a huge believer in the benefits of omega3, but I wasn't sure which ones to give my dd. Mainly because when I had a look round the chemist the childrens ones where packed with additives, preservatives etc. Can you suggest any specific capsules? Thanks.

shazian-that was beautifully put. Thank you for your comforting words and they really were. I wish you and your ds all the luck in the world too. :)

I know what you are saying regarding the GP. I have only come to terms with the fact that my ds needs help in these last 7 days. School has been endlessly telling me he needs help and he has been constantly 1 to 1 for the last 4 months now and still I refused to recognise the signs. Simply because I can handle him at home and are used to his "querks" I thought I was being bullied into signing for a EP to come and see him. NO ONE was labeling my son and he was just being naughty thats all was constantly going through my head.

I was at the end of my tether on Monday and phoned the GP myself and the answer I got first was do you have any other children? (as if I had to prove I was not an over reactive mum! grrrr) Then I was told there was nothing he could do or referal he could make. It was up to the school to sort it all out and is there anything else I can help you with while I am on the phone?

I really wanted support but got none and came off doubting again that I was going over the top.

DS has been seen by the EP and she still has to see him again before the actual assessment is made. However she is getting in contact with CAMHS for us so for her to do that I feel I was right to ring the docs! If all his assessments come back fine then at least I can rid the niggling thoughts and help him to overcome his probs. If it is revealed that my ds has issues........then I am going to be upset still BUT relieved at the same time that it was detected early and he has the best possible chances and help so he can lead a near normal life.

My son is 5yrs old and yes I can protect him at home but he has no friends at school and I cant make friends for him and no there is no parties for my ds either. Nor can I live his life. I dont want him to get to his teens and breakdown because he doesnt know how to deal with the real world where I cannot protect him.

As for losing patience.........its human......I do it. Got 2 other Cs with no problems at all and find myself wishing he was the same and yes I snap due to frustration that you want all this to disapear. That doesnt make you a bad mother :)

If you are thinking about it all the time and talking about it all the time then MAYBE it is a good idea to get your dd assessed properly. THEN there are no what ifs. Just speak to the SENCO in dd school and she will point you in the right direction :)

Attila-Just wanted to add that I didn't want that to sound defensive in anyway. I was just trying to explain exactly what I meant. I'm not saying that if we're not naturally strong then we never will be and i'm sure you were screaming at your computer not all of us have a choice!! I respect that. It's just going to take some time like I said.

she's only 4, you've not had time to get your head round it yet

it's ok to feel sad

it's ok to get annoyed about annoying behaviour - with any child, lol

at the moment, you're at the - oh shit! panic part...

you don't start off with everything you need, the knowledge, the experience or the strength to cope - but you get there, mostly because there isn't an alternative, rofl

I use Nature's Own Fish Oil. I get the liquid brand and pour it on Tuna. They also do capsules etc.

See - already you're starting to get your head round it and starting to think what you can do to help. :)

Hi Floopy - I'm not totally new on here but have just name-changed recently. I am at the opposite end of where you are so hope this helps us both. I have just received a diagnosis of Aspergers today for my 13 year old DS. I understand completely what you say about grieving and loss; about fear for the future. My advantage is that I've had 13 years to get to know my DS and so I can see the diagnosis as much more of a tool - by which I mean that it doesn't change who he is in himself - he's the same person he was yesterday without a diagnosis - but it can be very useful. Trust me, without a diagnosis, it is harder to get help, harder to define difficulties. We've waited 5 years for this and in many ways that label will help others more than us by now - it's shorthand, which those less experienced need. Everyone's heard of it; it's easier to explain when you need to. There are programmes the schools can access when you can show need. And the sooner you can define where your dd's issues lie, the sooner you can start to help your dd and so can the school. Take your time over this. Each child and family is so different and how you manage it and how you cope with it is entirely up to you at your own speed. Take care. We're all in this together.

My son is at senior school now so is a lot older. But I have been through this and have come out the other side, not entirely unscathed I might add, but both am older and wiser now. I once thought, "why us?" but I have come to now think "well why not us?". I have to deal with the cards I've been dealt.

I was not screaming at the computer btw, I never do that besides which I today have too much of a headache!:).

I did not mean to directly quote you at the beginning so am sorry about that. I was mainly referring to the GPs awful comment. She did you a great disservice by saying that to you. GPs as well are generalists; many of them are not at all trained in ASD and therefore do not recognise any possible indicators. It takes a paediatrician to spot ASD markers and eventually make a diagnosis (its certainly not a quick process).

As Al1son rightly says labels don't ruin lives, lack of support does. (I've seen that at first hand in some of my DS's peers, the damage that overall lack of support from schools can do).

Oh course it will take time as it did for me and it will for you as well. But you will get stronger eventually.

But my advice stills stands re your DD; you need to become her advocate. This is because no-one else will be that for her. You will learn that also in time because many of the professional people you will come across are all talk and no action!.

Her school may not readily apply for a statement for her additional support needs even if needed (and I would argue she needs more support and sharpish), you will have to do that for her.