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Could really do with a friendly ear :-((53 Posts)
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:
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
oh blossomhill, i'm so sorry for how you're feeling, especially as the people around you keep changing the goalposts. i have no direct experience of asd, but as you know there are plenty of people on here who can give you good advice. i just wanted you to know i'm thinking about you & your family, x
Blossmhill.. I just want to send you (((((((hugs)))))) and lots of them - for what's they're worth. I don't have any experience in this area of SN (although DS does have serious langauge 'challenges' as part of his condition) but I bet some other MNers will have advice.
I know how you're feeling though.. completely identify with that type of nausea!
Bloss......you know where I am.
Sometimes the goalposts do change. Little E is growing and developing. When I think back to 3 years ago and my J had almost no speach at all.....now he natters along all day.
He was far more sociable when he was 5 than he is now and what difficulties he had as a wee man really were nothing compared to how he is now.
J is now at an age where he can recognise himself that he is different to other children. His one and only friend can read, can play the games on the playstation, can go to the park along the lane with out his mom in tow.......J cant do these things and in J's words....It's NOT fair.
Dont worry....I know thats easy to say when I am sitting here and you are there....but it's not long now till BIBIC and I'm sure they will help you so much.
((hugs)) from me. I know how you feel when the professionals chop and change their minds. We are waiting for the results of an EP assessment on ds2 wondering if it will change his diagnosis from specific speech and language difficulties albeit with some motor delay (as they have been telling us for the last 2 years) to speech and language difficulties AND general learning difficulties. The SENCO has dropped some hints but hasn't come out with it. It will dramatically affect ds2 opportunities. It's almost as soon as you come to terms with one diagnosis you are thrown something else. I get scared of the future as well.
I hope you are able to make sense of this and get the help and support your dd (& you are parents need)
I am sorry how upset you are bh.
From my pov I don't think they are chopping and changing as such. Possibly when dd was younger langauge disorder was her greatest area of need so therefore the most apropriate label. Maybe as time has passed her langauge skills have improved but her social difficulties have become more pronounced. Remember that Aspergers children are often not picked up until they are in school, usually when they have been at school a while and not outgrown behaviours that are socially immature or unacceptable.
My ds3 was diagnosed with autism at the age of three which we were told was "fairly classic". However at the age of six and a half I would now say his autism is mild but he has language disorder, APD and short term memory difficulties. He has none of the above as a diagnosis except the original diagnosis of autism. No one has misdiagnosed him or chopped and changed, over time he has changed and his needs are different.
I suppose it is comparable to peeling away the layers of an onion. You deal with one aspect of your childs needs but another is there under neath.
I know you have had concerns about asd for some time and it must be upsetting to be told social communication when I think a SALT reassured you a while ago that it was not.
I am so sorry that you feel so down about it all, but remember it in no way changes dd. You are probably getting the best provision you could for her in terms of education.
As for the future none of us know what will happen to our children SN or not.
Big hugs to you. I have never given one of those before
Hi BH, just been looking for you on MrsF's thread. So sorry to hear that you are upset and feeling disorientated. Is there any hint that they will suggest changing her educational provision? Hope you can come to the SN meet up (whenever it is!) so we can all give you a big hug (and I NEVER give those even virtually!).
well as you know my daughter still has no 'official' diagnosis age 5 and she shows 'auti; traits too
it is bloody hard 'not knowing'
I dont know what else to say
If your dd has got autism, it really isnt going to change anything if they tell you that or not. You are getting worked up because you are most probably like me and a control freak. But when push comes to shove you are scared of the 'label' ( or signpost) and I suppose that is normal. Please dont keep letting it eat at you xx
Mucho sympathy Blossomhill. I know exactly what you mean about worrying. Ds1 is doing fine at the moment but I can really see him being a target for bullying in the future
But we just have to keep supporting them and each other as best we can.
Best wishes from another non-hugger!
Thanks for all of your lovely messages it was just what I needed to be honest.
Secur & bundle - thanks for your kind words, much appreciated!
Sleepy Jess - what kind of language difficulties does your ds have? Thanks for your hugs!
Jaysmum - we must try and sort something out. I could probably chat about 8ish? Thanks again though, you are so kind. Just can't wait for Bibic now. I think it will be so nice to be away from everything though and I am ready to hear what they have to say. That is if they do dx as soemtimes they can't promise.
Maddiemo and mum38 - I know that dx can change. I just wish that instead of putting in black and white on dd's statement that she was not on the spectrum they should have adopted the wait and see approach. It would have saved all of this heartache tbh.
Davros - no, she is still in the irght place. Apparently it is a communication unit, well that's what the SALT said instead. She did say they are working really hard on her social skills so I should be grateful that she is in the right place. It's just so scary seeing her social skills getting worse but academically she is soaring. Honestly I am not boasting but she is so bright (all part of it I know!) Hugs back to you. I will do whatever it takes to get to that meet up - I promise!!!!
Keane (is that you Fio) - I think I asked you a while back if you had a dx yet? So are they looking into asd with dd now? I am not scared of the label it's just I want to know. The last SALT sat me down and said there was no way dd was on the spectrum 100% I will have to dig out the thread for that. I just want to know what can be done to help dd reach her best potential.
I just look at her and think why you???? I sometimes just wish we could go to the cinema and have a pizza afterwards, if only... Silly I know
Poor ds was so lovely though. After I had spoken to the SALT I held in all of my tears and the minute I got out I just couldn't stop crying. Dd (not suprisingly) didn't notice but he was like oh mum are you okay and was hugging me. It affects the whole family doesn't it?
yes it is me, i think we all want to go to the pics and have pizza. IO wish I could do that without the kids aswell though
no they dont think dd has autism, havent said yet. Just 'auti' traits
latest scenario is 'strustural brain abnormalities' Stiull waiting for mri
Hi Blossomhill. Glad our messages helped. It's weird isn't it, how MN can make such a difference. I remember when I first posted.. last Nov I think - about all the stresses related to my boys.. and the sleep deprivation..and the life span thing relating to DS1 (who has cystic fibrosis..) I rattled it all out on the keyboard.. was really down at the time.. thinking 'these people don't know me..I can say anything.. and what I really feel for a change..) and went off to have a bath. When I came back half an hour later about ten people had replied and I sat here with tears streaming dowm my face (with my back to DH.. trying not to let him see.. don't let anyone see me crying!).. and you all helped SO much.. just by 'being there'.. and I didn't know any of you from Eve.. still don't really!
DS2 has dystonic cerebral palsy.. but it's just a description really.. no dx... he has a funny mixture of things wrong with him.. probably has a syndrome.. but everything tested has been neg so far. He can say lots of single words now.. and some small sentences.. although not that clearly.. and uses a lot of Makaton.. coming on great guns since starting fulltime mainstream school last Sept. The speech will improve I think.. and he is just SO sociable.. and doesn't care a bit about his disabilities!
Good luck with finding the real answers for your DD
sleepy jess, you are in faversham arent you? i am in herne bay, come to the meet. it was your eldest who has cf isnt it? my sister had it i think i said before. Sorry just realise who you are!
Hi Keane/Fio-type person! Ah yes.. I forgot you were from one of the original-nice-people who replied to my original-stressed-thread! (Was only kidding about being ignored on the meet-up thread before..I don't have thread-killing issues. Other issues.. but not those! )
WHEN is the meet-up? The thread mentions several dates! And IS it a Wetherspoons? I will try and come..
Yes. eldest now 12 - with CF. youngest, age 4 with cp etc... (DD age 6 healthy, much neurotic toucbing of wood!!)
Blossomhill,I never had any problems with misdiagnosis with my ds, but do know where you're coming from regarding the worry of your dd being a loner. I can also imagine the not knowing of a diagnosis might actually be worse than finally receiving one. I remember being very tearful when it finally dawned on me that my son did have ASD. But at least I could then start concentrating on what was best for my child. Good luck
bh Have you booked to see the Psych at BIBIC as I think it is only he who can make a diagnosis. As far as I remember he has to be booked in addition to your package and costs extra.
However you can ask for a CARS assessment to be carried out by her therapist at BIBIC. This gives a points score of how autistic a child is although I am not sure if it would be classed as an official diagnosis.
Sorry I wasn't around earlier, BH. It can't be easy for you when just as you get used to one dx something else comes along. xx
Bloss Maddiemo is right about the EP giving a dx at BIBIC. Its extra to the cost and is not covered by any bursary. You would need to book him asap if you wanted a dx.
When we saw him he charged £450.......but its gone up to over £600 now!!!!
He is very good and excellent with his reports. He is recommended by NAS.
Have got a telephone appointment booked this evening with IPSEA guy at 8.15pm........if its not too late when I finish with him I will mail you and you in the bar later?????
Hi BH! Sorry to hear you've had a lousy day. It just pulls you up short when you feel you've come to terms with one thing, and then they come out with something different ...
No wise words I'm afraid, but thinking of you.
Really sorry to hear you're feeling so low BH
Blossom,oh, I'm so sorry honey that you're feeling so crap. That must be so distressing, to get one 'dx' and then be told it may be something else. What does this mean for your dd's education? I know the language unit is fantastic but does this mean they will do more work on the social side, if you know what I mean? It's fantastic, though, that she's doing so well and is so bright. She sounds like such a fantastic little girl and you are such a fab, proactive mum. Sending you lots of love X
Thanks again everyone for all of your lovely messages, you really do not know how much they mean.
Have been talking for ages on the phone to a very good friend whose son is in the unit with dd. I think I amy go in and ask to speak to the SALT again. I mean she was quite flippant to be honest and I want to talk to her in more detail and go over the language test results etc. Do you think i am right to do this???
Jaysmum - yes that's fine. I am watching Shameless at 10 though!
Sending lots of <hugs> to you all for being so kind and supportive. I really wish we all lived nearer to each other though. Would make life so much easier to be able to say right all come to me for a coffee (or even a glass of wine )xxx
I think that talking it through with the SALT is a good idea. It may help give you some peace of mind and give you a clearer idea of where you stand.
I'd love to be able to nip round for coffee/wine too.
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