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.

Epsom Bath Salts contain Magnesium which you may well be deficient in. So you just add them to your bath and increase your magnesium levels.

Helps with stress, detox and all sorts of other things. (Google...)

We really notice the diff when you put them in a bath.....

I have googled and this is really informative re epsom salts

Floopytheloopy - I really empathise with you and know that many of us here can. You must get a diagnosis in order that your DD gets all the help that she can.

My DD has had severe dyspraxia and learning difficulties since the onset of difficult to control epilepsy. We have. Sen told that she is likely to grow out of her epilepsy, so at a recent appointment I asked (DD not present) I asked whether the other issues would go if the epilepsy ceased. The GP told me that we would not get the little girl back that we had before, but said with the right help she would improve. She told me this so that I push for a statement.

We moved schools a few months ago and the new school have put in place strategies to help her. They have made a dramatic difference to her both academically and in forming friendships. Save to say I know I have to push for the other help that she needs.

My DS, we had assumed was NT but he has behavioural issues. We'd put this down to attention due to DD, but deep down I know it's more. I think he is AS and several people have suggested the same. I almost don't want him to be diagnosed as I can't bear to think of him having needs aswell. But I can't help him unless we get a diagnosis.

Whilst I'm sad for both DD and DS and have moments of worrrying about the long term, on our trips to GOSH I've seen so many really unwell/disabled children that I feel lucky and guilty at worrying about my DC.

I know this doesn't take the pain away and I hope you can find the strength. Getting a diagnosis will help - your DD will be more likely to get the help she needs at school which, in turn, may alleviate some of the problems at home and you will know which support groups to approach for help.

I have to say i'm actually quite moved with the amount of response and support i've received from you all in such a short space of time.

Obviously it helps when you know people understand and are going through something similar themselves or have done in the past.

I knew when I first posted that you've probably all read something very similar hundreds of times before and I know my feelings are normal(ish), but you do sometimes need to hear that you really aren't alone and then with help things will gradually get better.

Attila-I was only being sarcastic with the whole "i hate being quoted"thing. When I read it back, I knew I sounded like a bit of a dummy. Certainly didn't take offense.:)

Indigo-Will definitely try the oil over the tuna thing. Does your dc ever notice? I'd definitely try the bath salts, but dd HATES baths at the moment so it's a stand up wash everyday now It's not always practical.

Hey Floopy
Sounds like you're going through the process of grieving for the child you thought you had.
I remember it well!
But she's stil your child first and foremost with her own uniqueness and qualities- her personality will outshine any difficulties she faces.
She is a child who has autism, not an autistic child.

As for what others think, who gives a flying hoot.
One line I tend to say when people comment or stare etc is 'my children might have Fragile X Syndrome but I thank the Lord every day that they don't suffer from ignorance.

Sometimes when my boys are jumping up and down flapping and whooping, I join in. If my girls are there they do too.
People generally run a mile then and it gives us a good laugh! ;)

Just take your time. You'll find an abundance of strength, determination, patience and love that you may never have known you had in you before your precious baby came along.

Haven't really got anything to add, as is the way with this lovely board, everyone has given you some great advice and support.

Just wanted to say, I'm another one that's been through it and totally understands. You will get there, I promise. My ds was diagnosed with Aspergers a fortnight ago and while I had a bit of a wobbly week, overall I had by then come around to thinking of his diagnosis as a valuable tool to getting him the help and support he needs. He's still my boy, lovable, cheeky ... annoying, noisy etc. Nothing has changed.

Oh and yes I do still get cross with him and sometimes I snap when it all gets on top of me - I'm not a saint, I'm a Mum and only human. He knows - and is told all the time - that he is loved for who he is and always will be and if/when I do get cross I take the time to apologise and explain that I make mistakes and wrong choices sometimes because I am only human, but that even when I am really cross, it never changes how much I love him - nothing can ever change that.

Stick around, read lots, cry and laugh with us and ask for help and support whenever you need it. It really does help.

unpa1dcr3r I like your style!

It is very very tough. Have you been offered counselling? balked at the idea at first but it was extremley helpful. DS was assessed by a fab childrens centre who offered it, but the national autistic society can help.

I don't think I came out of the grieving process until DS was about 5, and I had known since the very early days that he had significant disabilities.
I then went through another 'grieving' process as he entered his teenage years and I realised that again the goalposts had moved and we would all have to go through another reality check with regard to what he is likely to achieve with independent living etc.
I made use of counselling and anti-depressants when necessary both times. I wasn't grieving for what definitely positively would have happened. I was grieving for what I thought was going to happen. There were never any guarantees that even without his disabilities DS was ever going to follow the path I had mapped out for him.
Yes, you do have to play with the cards you're dealt. And also, as in 'We're Going on a Bear Hunt', you can't go over it, you can't go under it, you just have to go through it.
As others have said, you must keep pushing for a full assessment and dx, and please look after yourself too.

Floppy I think we've all experienced that kind of grief that you're going through.

DS is nearly 13 (diagnosed at 5) and I still have moments of looking at him and feeling so sad for him when I think of the life that he should have.

But then with the right support I know that he will be the person that he wants to be and live a life that makes him happy - it may not be anyone elses idea of conventional happiness but so what?

Oh and I so agree that a diagnosis opens so many doors to getting the right support

Floppy it's 13 years since I got a diagnosis for ds and 14 plus since I realised something was really wrong. I remember the pain and grief really well. It's normal to feel sad for the loss of your child's exepected future. It's normal to feel sad because of the difficulties your child faces. My only advice would be to look after yourself whilst you go through this process and don't be surprised (as I was) when these same feelings come back and bite you on the bum periodically.
Really second everyone's advice to push for dx and support as that's the one way to ensure dd achieves her full potential.
Take care

Hi Floopy, I haven't really got any advice to add to the already great stuff other people have written, but just wanted to say I know exactly how you feel. DS2 is now 7, and I began to feel that something was wrong at about age 3 when he started nursery. Despite grandparents etc saying "he'll grow out of it", he hasn't.

He's been assessed for ASD /Aspergers but is apparently "borderline" according to the professionals - perhaps because he can manage to hold it together for an hour in a hospital!!

We have times when everything seems fine and I begin to have hope for a "normal" future and bad times where it all seems to go wrong again - like this week when he has wet himself at school every day, completely out of the blue.

I totally understand you grieving for the DD you thought you'd have because I've done it too - I constantly worry about what life will be like for DS2, will he ever manage to get a job, will he ever be independent? Will he ever have friends? (no invites or playdates here either ). Sometimes it's harder because to an outsider it doesn't seem there is very much obviously wrong, but when you are living with it every day it can be almost unbearable at times.

When I'm feeling down I just try to focus on his good points, he can be lovely, sweet and funny too and I couldn't be without him. I suppose we have to be grateful for what we DO have, rather than what we don't. xx

lifeintheslowlane- Really well put I thought.

On the good days like I mentioned earlier that's what I tell myself. That she has so many good points and that I should just focus on those. I think the thing that is really getting me down at the moment is the friends thing.

At pre school children can blend in a bit more and friendships(I found) were easily formed because the age group was so varied. Now I see the same children who may have struggled slightly at the same pre school as dd coming out of school coming on so much and dd seems to be falling behind so much. Academically she is still moving forward, whether she's behind or not. It almost feels as though she's gradually being outcasted and not just by the children, by the parents too.

Lets face it, most mums don't want their child mixing with a child with problems. You get the odd one who really makes an effort, but they can't force there child to be friends with yours can they.

Last night dd told me that this girl who she actually used to be friendly with has joined the rest of them and wont invite her to her birthday party. Dd said that she asked her if she could come to her party at her house and the girl said "no, you definitely can't". Dd after telling me this just wondered off and played with her toys like nothing had been said. :(

Where's that magic wand when you need it.

Floopy, in haste so I haven't had time to read the whole thread. Give yourself time. Dx can knock you for six, as all your hopes and dreams suddenly feel like they've gone. You will accept it, over time and come to see that your DD is still the same person she was before. It took me at least 6 months if not a year to do so.

Ok, so our kids are a little different. They can be funny, eccentric and downright blooming hard work sometimes, but they are ours. Their paths may be different from other kids, but I know that when my DS grows up, if he is happy, healthy and reaches his own potential, I will have done a good job. Now, we surround ourselves with people who do understand and don't worry about other people. Many of them have kids with additional needs and to me it is easier sometimes than forcing friendships with NT kids. We do what works for us and don't worry about what other people are doing - if it keeps your DD happy, then that's right for your family. I'd start finding mums who are sympathetic and invite a child for a playdate. Keep it short and sweet and build on the friendship, then when you have a couple established, have a small party for DD's birthday. You'll get a few invitations over the course of the year, and OK it is painful when your child gets left out, but build her confidence with a few strong friendships and don't worry about the rest.

HOLLAND
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Sorry, meant to say that the the 'Holland' story really helped when we got our dx

Wow! troublewithtalk, that's such a lovely story about your son.

I have actually heard the holland story before. It was on the Wright Stuff of all places and it was Amanda Lamb who read it out because it was Autism awareness week and her friends son had recently been diagnosed. At the time my dd was showing no signs so I was blissfully unaware of the fact that it would be relevant to me one day. It's beautifully put I think.

I think sometimes I push her too much with the learning to write etc and I find myself having to walk out of the room and remember that there are certain things that she really does not understand. I can be repeating myself again and again and it wont sink in. For example numbers seemed to be a real problem. This time last year she recognised numbers 1-10 and pretty much the whole alphabet. All of a sudden she can't seem to remember any of the numbers and her abc's are just picking up again. It really is an emotional rollercoaster isn't it.

It was lovely to read that your son is settled in a mainstream school and that he has some friends. You must be so relieved, even though as you say, he still faces many challenges.

Don't worry floopy. My DS's learning is in fits and starts. he's just started school and you do see them 'forget' some stuff when they are faced with new challenges. It does come back, though

thederkinsdame - I love the Holland story, I'd heard it before but forgotten it

It perfectly describes it, I think

This is my first post, just signed up last night. I was urged by my family to find others who know of the exhausting cycles of grief, hope, worry, despair involved in Mothering a child whose future is not the one you had imagined for him, but changed by 'organic difficulties'. My son seemed fine as a baby, it is hard to think that a condition was waiting to re-set the course he would take, a course that sets him apart from the friendships and experiences of other children. He is four, is on the waiting list for the Autism Assessment Team, has attended an educational assessment center which endorsed another year in nursery school. This is an incredibly difficult time, can't make my peace with this yet.
Am already heartened by the posts I have read, could have written a few of them myself almost word for word.

Welcome Bryson! I hope that you will find lots of useful advice and support here (and no doubt you will be able to give it to some of us too ) Today has been a hard day for me, had appointment with camhs in the area we have just moved to. They had three sessions with DS2 and are offering us more psychotherapy for his anxiety and social skills development although there is a long waiting list apparently. We are due to have a follow up assessment at GOSH soon which may or may not give us an ASD diagnosis but in the meantime the therapist at camhs only succeeded in making me feel like a completely rubbish mother .