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Original poster

Could really do with a friendly ear :-(

52 replies

Blossomhill · 01/03/2005 16:28

I am just sitting here with tears running down my face (sorry to sound so dramatical). Went to pick dd up and saw her SALT who wanted a quick word as she had received some info from Bibic. Anyway she said that she had re-tested her language skills and that they were really good. So I asked her if she still had a language disorder and she said "not, really". She then went on to say that dd's problems had changed and were all in the social/communication area. She said she had a communication disorder. Again I feel this is a dressed up word for asd. As I have said before I am fine with asd, absolutely. What I am not fine with is people chopping and changing there minds about what is going on with dd and her difficulties. Although I also appreciate that this is a very grey area too.
I just feel sick today, sick to my stomach.
I have also been very aware myself that dd has been displaying a lot more autistic traits recently, such as:

humming
covering things over with her hand when she looks at them
still eating weird things
fingers in ears (although not as bad lately)
generally talking/singing to herself
She also seems socially to have got worse, to the point that I have to prompt her to say hello to people

I think I as a mum have always known it and have been open to it but have listened (stupidly ) to the professionals. Do they not realise the enormous strain this has on us as parents.

I have been dealing with this for nearly 4 years and I have seriously had enough. I am so scared of the future. I just have this vision of dd walking around as a loner, being poked fun at for being weird.

I just want to run away from it all. I really don't think I can take much more to be honest

OP posts:
Original poster
Blossomhill · 01/03/2005 19:49

I know it's such a shame isn't it coppertop. Will have to make do with a virtual coffee/wine instead

I know Saker I do try and think of how lucky I am as dd is on the very mild end. It's still very scary though!

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Saker · 01/03/2005 20:06

BH

  • I do understand how you feel. I can talk about ds2's problems in general okay now but the one thing that makes me dissolve into tears immediately is when I describe to anyone how other children refuse to play with him (already! and he's only 3 and a half) and how he doesn't understand their games. His future being bullied and left out and lonely looms up before me just the same as you describe and it's the thing I would give the most to know how to prevent. It seems highly unlikely he is autistic now, but for a while it seemed like a possibility and again, to me it seemed like his chances of having a normal life were lower if that was his diagnosis. But I'm not sure it's true. And I don't feel any more confident of his having a happy future even though that isn't his diagnosis because he still has the same problems. What I am trying to say (very badly) is that in the end the diagnosis doesn't determine your dd's future, it just describes her at the moment. Nothing has changed except the SALT's description. Sorry I'm sounding really "preachy" now and I have no right to - it's easy to be clear-sighted when it's someone else's child but I'm sure I would react like you in your position. I'll shut up.
Jimjams · 01/03/2005 20:06

BH sorry to hear about this.

If it's any help I find it makes sense now to think less about actual diagnosis and more about prognosis. Despite the change in dx (or potential change) your dd's future chances should still be the same- she sounds as if she is doing very well, and had a fufilling life ahead of her with lots of chances. So look to the future.

I went to a coffee morning at ds1's school today- the children all have very different dx (severe autism, cp, wildly different dx) but all the broadly same prognosis- ie all will need lifetime care. IN fact I had more in common with them than with some autism groups thart I go to (where the children are much higher funtioning). That would have surprised me initially (that I could have lots in common with children with severe cp for example) but I think goes to show that the overall picurte of a child is more important in defining who they are than the dx.

Hope that makes sense- its just that ds1's dx doesn't really matter much these days....

Jimjams · 01/03/2005 20:06

sorry sorry has not had!

Jimjams · 01/03/2005 20:07

I think we're saying the same thing Saker

Saker · 01/03/2005 20:11

Glad we can agree on something

roisin · 01/03/2005 20:50

BH I do think you are absolutely right to go in and chat to the SALT in some more detail. And have an opportunity to ask the questions you need to ask and hear the answers.

It is a shock isn't it when someone says something rather flippantly, which comes as a surprise to you; As though they view the news as something which is obvious to everyone and shouldn't be coming as a shock to you. It somehow makes the 'news' even harder to bear.

Original poster
Blossomhill · 01/03/2005 20:57

Thanks Jimjams (and Saker ) - you are absolutely right. It's not the dx as such it's the messing about that has been hard for me. I still think she has a semantic pragmatic langauge disorder, so will see what the SALT says.
Roisin it really, really did. I cried all of the way home, I could hardly see. I just thought life is going to be so, so hard for you darling. Kids can be so bloody cruel at times and as a mum you just want to take it all away don't you. Unfortunately with this kind of thing you can't. Dd is getting all of the early intervetion and we are doing the best we can, so? What else can I do.
I just feel so sorry for ds. He was really upset and kept saying what's wrong mummy. It's okay mummy and was really hugging me. He is such a lovely boy, honestly. I am going to take him out just the two of us as I need some time with just him. He needs it and so do I. He gets lost in it all and I just want to make sure he knows how loved he is .

OP posts:
bambi06 · 01/03/2005 21:20

i`m passing you a large glass of red wine and theres a cyber bath waiting for you full of lavender oils ..have a good wallow and anytime you want to chat you can CAT me , similar ways in that as my son gets older things change in him too and were getting him reassessed(sp?)
love and hugs

Original poster
Blossomhill · 01/03/2005 21:25

Oh Bambi - yes thanks I will CAT you now. It would be so nice to have a chat. Thanks for that xxx

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Original poster
Blossomhill · 01/03/2005 21:25

Oh I have a alarge glass of wine but the cyber bath sounds like heaven (hugs)x

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bambi06 · 01/03/2005 21:31

you`re welcome

Original poster
Blossomhill · 01/03/2005 22:00

Bambi - I have catted you xxx

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beccaboo · 01/03/2005 22:05

Blossomhill, hope you're feeling a bit better. I know that sick feeling very well. I really feel for you - I remember you saying that you'd asked if she could be on the spectrum and were told definitely not. But it is good news that she no longer has a language disorder, that's such a major hurdle.

She is obviously bright, and hopefully that will mean that she is able to fill in some of the gaps as she gets older - even if social skills don't come naturally to her, she will be able to learn.

Saker, my ds is about the same age as yours, and other children don't want to play with him - and he's not interested in them either! I took him to soft play today, and there was a boy he knows there, but he just didn't know how to play with him. It's the thing I'd really an answer for too - the language skills etc you can work on, but I don't know what to do about the social side. I'm so worried about him starting school, I think he'll be completely lost in the playground.

Saker · 01/03/2005 22:19

Beccaboo

I know what you mean about school - I am so worried about that for my ds2 - I can't see how he can possibly cope yet it's by no means certain he will get any help. By bad luck his birthday is August so he is due to start in September. We are planning to hold him back a year but Cambridgeshire LEA are really strict so he has to have an assessment with an educational pyschologist and we have to go through a formal process to get permission. They can't stop us legally but otherwise they will put him straight into year 1 when he does start which would be even worse.

My ds2 doesn't always want to play with other children either but I think it is partly because he is used to knock backs. But it is so difficult to work on because you can't make other three year olds understand. Even his older brother who adores him and is incredibly patient with him gets frustrated with him and I don't blame him. I spent all evening today trying to prevent ds2 knocking over his brother's pretend farmyard and stealing all the animals.

Gone on long enough. It's just that it's my major worry at the moment and from what I read here so many schools are ill-equipped to cope with it.

Sorry BH to rant in the middle of your thread.

Allycat · 01/03/2005 22:31

Hi there. I know this feels really scary at the moment but things will get much better once you have a good idea about what your dd has. Our ds was diagnosed 3yrs ago with mild AS (asperger syndrome) and at the time our world changed - but for the better. It give you access to a million different courses where you will meet normal people going through the same things as you are - and you will be amazed at the tips you will pick up. Our local Autistic trust is an absolute godsend and they hold lots of courses to help. Our ds is now 6y and although he is still rather different, we now know how to approach him to get the best of him back. He has been on courses for social skills which have really helped. The best thing of all though is that it made US as parents understand that he was not being naughty or rude, and that really changed the way we parented him. My dp was a bit tough on him but now he understands and he can actually see a bit of himself that may be similar - which in turn took a lot of pressure off of me as I was previously always having to defend my ds. One thing I would say though is with ASD, diet can play a major part and many of the people on the course had taken gluten and casein (milk and dairy) from their kids diets with fantastic results. Please don't be scared - things can only get better!!

rivers · 01/03/2005 22:32

Hi Blossomhill, Sorry to hear about what you are going through and I really understand about how difficult it is when people keep changing their minds on what difficulties your child is facing. I also find it very difficult to think about my DD and her life as she gets older and I just wish I could give her a life where she is no different to others. From reading your posts on here I agree that you sound like a great mum.
Take care,
Rivers.

coppertop · 02/03/2005 11:33

Just checking in to see how you are today, BH. xx

JaysMum · 02/03/2005 11:45

Bloss.....I got lost last night!!!!! I went to a different room in the Bar and then I couldnt find my way out of it!!!!!! Went round ages trying to find everybody and couldnt....so I made a quick leg for the door....went outside and then tried to get back in. Only problem was I wasnt allowed back in!!!! Only 7 allowed at a time!!!!!!So I hung around in the old bar for a while one or two popped by....all waiting to get back in to the new hi tech bar!!!!!By the time I had queued up and got back in.....you had left...
catch up sometime.
Hope your feeling better today.
JM.

Original poster
Blossomhill · 02/03/2005 11:51

Hiya everyone

Well went into school and the SALT has today off. So started speaking to dd's TA and then the unit head came along and I just burst into tears at the main school doors

I just said how much I wanted to wave a magic wand and take it all away.

The unit teacher said that dd defintiely still had a language disorder but when she first came to them it was a ld she was presenting with. Now it is becoming more obvious that it is more than that but she did reassure me 100% that she is still going to stay in the unit as it was defintiely the right place. I said why did the last salt reassure me it wasn't asd and now the new one is saying it is. She said no one is saying dd has autism at all. They are saying that she does have autistic traits but lots of the children in the unit do. They also went onto say that they have 5 other children like dd in the school.
I went on to say that it's not fair to muck about with parent's emotion. We cling onto (well I do!) every single word they say to us and take it all in.
I just feel so embarrased that I cried. I feel even worse that ds saw me like it again. I shouldn't have let him see me like that or hear us talking. He looked so sad. He then went on to say it's okay mum you make me feel better when I cry and I want to do the same for you bless him xxx
I will see the SALT tomorrow. To be honest I feel like a zombie at the moment. Just want to run away, but where to???

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coppertop · 02/03/2005 11:56

BH

It's no wonder you're feeling upset when you can't get any straight answers atm.

Your ds sounds like a little sweetie. Bless him.

bundle · 02/03/2005 11:59

blossomhill, is there anyway they could put you in touch with the other parents who have similar problems? (obviously there are issues of confidentiality but it sounds like you really need someone to talk to who can relate to your side of things)

Original poster
Blossomhill · 02/03/2005 12:01

Yeah Jaysmum - where were you?????

I got a bit fed up with noises going back and forth but did have a lovely chat with S. She has been so supportive, bless her!!!

Speak soon though. Don't worry about not seeing us when we are Bibic, you've obviously got a lot going on and so will we have!!!!

I also haven't got a car atm as the brakes are playing up. A firend is taking me to .... Asda (woo, hoo!) and I am going to hopefully find something, maybe a game cube game for ds.

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Original poster
Blossomhill · 02/03/2005 12:03

Bundle - I have actually spoken to the school about setting up a coffee morning for us unit mums. I know many mums that feel the way I do and it really does help to talk so hopefully that should start soon. I'll be organising it all as well so should take my mind off of everything!
Am also starting counselling at the carers centre on Friday. I know I need to address the fact that I am finding it all so hard to accept/ deal with. At the end of the day she is my little girl and I just want what's best for her, like we all do.

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Original poster
Blossomhill · 02/03/2005 12:04

Just also wanted to add how so supportive and helpful you have all been on mumsnet. I don't know what I would have done without you all to be honest.

Love Blossomhill xxxxxxxxxx

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