So much intervention just now, statementing 3yo dd, very hard...

[piffle]

dd is 3 with noonan syndrome, speech delay, nystagmus of the eye causing poor visual definition/acuity. She has other issues fearful and cautious because her eyesight makes her feel very vulnerable.
So now she is 3 we have suddenly got a raft of people in our live, well more rafts of people
portage is ending as nursery and statementing is taking over now...
Ok dd is being tested for lenses in dec to see if they can help (unlikely but...) she is having a special hearing tests to test what tones she can hear in case this relates to her particular speech problem. If not then she gets intensive SALT twice a week one in nursery one at home/clinic. She also has a peripatetic teacher for her visual problems to interpret what "we" can all do to make her life better and easier. The area SENCO is also doing observations at her nursery and so is the Ed Psych (apprently you need ed psych evaluation to get statement?
Add to that the physio, the cardiologist, the ortoptist and genetics team, I'm just wondering if I could just politely bugger off and leave it all.
Add to this that the ed psych thinks dd shows signs of being very numerate, a few of us understnad her language and she is couting to 40 and adding and subtracting, in her own little martian approximate language, so now of course they are hot on my heels to bring out her potential
FFS she was only 3 less than a month ago...
I'm crying all the time - this is doing my head in.
I have an older boy ds 11 who is a very high achiever and he was hard work and he has not difficulties.
I don't want it to be work, I just want to be a mum to a very sweet, happy little toddler with blonde curls and blue eyes and lots of kisses.
Am I going mad...

Hi Piffle,

I'm thinking of you at this time as the statementing process is very druelling and can seem to go on forever with OT, SALT, Peads, ED Phsyc etc....
I think it is good that they are focusing on her numeric ability but at 3 years old i would be asking would they do this to a child with no problems at this age????
I think you are right to let her be the little girl that you know and love, but also regarding the statement, they have to have knowledge about her strong and week areas so that it can be as beneficial as possible for her needs.
When dylan went through the process last year, they were amazed at his level of concentration for a 2.5 year old and despite him having severe learning difficulties etc... thay said a child of normal ability would not be able to sustain the level of concentration that dylan could and they took this very much into consideration when doing the statement as one of his strenghs and to try and stride on it.
I hope they are quick with the process and if you need to ask anything, then please don't hesitate to cat me if need be.
Thinking of you.

Butty.xxx

Thanks Butty
It is vexing as the Develpomental Paed (sorry forgot her out of the original line up earlier) told me that if an NT newly 3 yo could not draw a circle or a cross it would not flag up as anything spectacularly wrong but it's compounded with everything else isn't it?
I mean essentially dd is doing really well IMO, her comprehension is good, she knows shapes and colours and can describe things - tall blue etc..
but no one but me can understand her
I'm sure they think I'm lying at times.
I feel this urge to tell them about her skills as I am no good at taking the things she cannot do
I'm still in denial a lot of the time tbh...

God i know exactly how you feel.
Dylan cant speek, well he says No, Yeah and Go, none of which are very clear but those close to him know what he is saying.
When i told the SALT etc... that he totally understands every word that we say to him, they just look at me as if to say "yeah Whatever"
He is very clever and also vey determined and when i ask him to things or if he wants things he responds with yeah or No and also for eg; if i ask him to sit on the sofa he will, if i ask him to get his cup he will, when i ask if "its all good?" he puts his thumb up whilst saying yeah which is really funny!!!
I think because they only see them in sessions they cant possibly see what we do as mothers and yes i agree it can be very demening at times!!!
Dont let them tell you whats what, you tell them!!!
Butty.xxx

Ah - 'the burden of early intervention' is how I have started thinking of it!

It sounds like you are getting a lot of 'help' which in some ways is fantastic but if you are feeling overwhelmed with it all then you know, you can say 'no' (easy for me to say I know).

I think in your position I would maybe just think about the things that you feel are really important to your dd right now. If that is SALT then concentrate on that. And try and put the other stuff on hold - or at least let the professionals do their bit but don't feel extra pressure to do more yourself. Forget the 'potential' stuff. If she has that potential there then it will always be there and it sounds like she is doing fantastically without added 'intervention'.

You are not going mad.... all of us just want to be 'mum'. And she has done so well so far I would imagine that you 'just being mum' has helped her the most.

I sometimes feel guilty if I spend time just cuddling dd on the sofa (how is this helping her development? should I be doing physio? etc etc) but then I remind myself that really the greatest gift I can give dd is to let her know she is loved (sorry, bit gushy but I do believe that ).

Hello Piffle sorry you are having a time of it. We have a DD with DS which is a comparatively well-understood condition, but getting the statement is still a mountain to climb. What I found hardest was essentially focusing on the negative in order to make the best possible case for your beloved child to get the support you know they need. We had a lot of help from an incredible lady who was our Portage worker, find someone who you trust to go through it all with you, they will know where you need to lay it on with a trowel.

The ray of light is once you have your statement you have it - it is a legal document and tho it is reviewed every year it is hard for the LEA to withdraw the support your child is legally entitled to. If you are not happy with your statement it is incredibly hard to get it 'improved' - the opportunity is at the issuing stage to get what you want - which is why we were urged to emphasise the difficulties DD faced rather than her achievements to date.

Our DD is in Yr1 now, has had a statement in place since 2002, and is making excellent progress thanks to her incredibly dedicated LSA - for us it was so worth all the pain.

Hi Piffle - sorry you are going throught the mill at the moment. We are in the throes of having ds2 (26 months) statemented - the ed.psych was supposed to visit today but was ill and couldnt make it. Not that it was her fault -but I ended up feeling all cross and annoyed that I had psyched myself up for it and it didnt happen. I too know how you feel about all this intervention. I try to look at it as a necessary evil, but every now and then I want to scream.

Latest victim who nearly got a wallop was the OT! I appreciate we are very lucky to have OT, but she is Soooo Patronising! I do value all her ideas, but it is the way she says...you should be doing this...this..that and of course a child like yours needs lots and lots of stimulation.... I feel like picking up my family and running away sometimes. I mean...where, oh where are you supposed to acquire all this time, for all this stuff. Sometimes, we just want to be a mum! Rant over...

A question, where do you go for support for yourself
Today I dropped dd of at nursery where the peripatetic teacher is observing her today.
The nursery was just out of control toddlers running around screaming and puhsing littler kids over, dd clung to me - she is still quite unconfident on her feet, things moving fast frighten her, she has hypersenses esp hearing and flinches at sudden or expected loud noises.
Usually she trots off and leaves me happily, today it was awful
So I sat with her when they did days of the week what the weather was and what the month was.
DD knew all the answers as did them at breakfast, but she would only whisper them to me in her martian speak.
I fear that this is not the way forward for her, but that putting her with severely disabled, non verbal children might not be good for her either.
So when I drove home I just burt into tears and have cried for over an hour.
I need to speak to someone but feel portage worker not close enough to her. Nor DP as if he sees me worrying he'll lose it and thats not an option.
I feel so out of control and not sure for the fist time ever of what is best for my little girl.
Sorry bit of a rambling one today... Am just really struggling at the moment...

After a faltering start, I am quite close to my health visitor - what's your relationship like with yours?

Have you tried Contact a Family? They seem to be a mine of information and may know where to point you in the right direction.

Someone on here was also talking about a telephone counselling service a while back. I'll see if I can locate a link for you.

Take care Piffle.

Merlot x

piffle - sounds like you are really having a hard time at the moment. It is so difficult to know what to do sometimes. do you feel you just need someone to talk to? or do you feel you need help with making decisions about your dd? Do you know other people with children with SN in RL? could you talk to them?

The statementing process is supposed(?) to help everyone understand what your dd's educational needs are including what sort of environment she would be best in. That is definitely part of the ed psych's job. So they should help you with that.

I also really struggled to know where dd would be best placed. I looked at a really lovely local playgroup but, like you, was worried about dd getting a bit 'lost' there. I was really concerned about her going to an SN nursery as I was afraid she wouldn't have role models there but in the end we did decide for her to go there and so far it has been excellent. Have you looked at/spoken to any SN nurseries? What I have found is that actually there are 2 boys in dd's class who are a bit more able than her and she tends to have her sessions with them rather than the less able children so she is learning from them. Also, her SN nursery has a very small mainstream playgroup attached so the SN children get to spend time there. Its kind of a 'best of both worlds'.

Sorry, waffled on. Suppose, just trying to say there may be in between alternatives. Is there a possibility of a mixed placement? Or a different mainstream nursery that might be very small and less intimidating?

HERE is the link to the thread about the telephone counselling service Piffle.

Following on from HeartintheCountry - my ds2 is going to have a mixed placement. He goes to my local nursery school currently for 2 mornings a week - it is our hope that when he has a statement/or whilst he is under assessment for a statement he will attend a state funded mainstream nursery with a SN unit for 2 afternoons a week as well. It seemed to me to be the best of both worlds.

also...have you been to the Doctor to explain about your feelings. It sounds like you are depressed and you should be able to access some face to face counselling if you would like it.

Thanks - I've analysed and do not think I'm depressed and I cannot really complain as the people involved with dd (all 3 million of them) are fabulous and informative and kind and supportive and encouraging.
I think what is happening is for the best, I guess the ed psych wil be helpful in that area too?
I think I may call my HV, she is lovely and knows our history well.
My GP is about 85 and says take an aspirin for everything from vomiting to hives to ectopic pregnancies to gastroenteritis
I am also having alump in my breast checked out at the minute and I think perhaps that is tipping me over the edge, plus coming to the conclusion no more kids for us. I'm not sure I'm happy with that.
Sorry off I go again
.....

Ah Piffle - no wonder you feel tipped over the edge. You must be worried sick about the lump - I hope they can reassure you as quickly as possible, no wonder you feel more emotional than normal.

Dont worry about going off on one again...bloody hell I've done it often enough..and if you cant do it here..well where can you do it.

Sending you a hug. Merlot x

thanks merlot, you've been lovely
Decided to take a day off the diet and reach for....
a bottle of Merlot to go with our roast lamb - time for comfort of the gastro kind, will talk to do tonight too.
LOL

Enjoy!

been here.....it will get better!