Where's my little girl gone?! I can't get through to her atall!

[detoxneedednow]

Morning all

It's as simple as that really. My dd (5) is more than likely on the spectrum and her issues are mainly with her social skills. Random and out of context speech paterns and she struggles to keep friendships going. She's always been bouncy and twirly, but recently it's none stop and i'm finding it really hard to cope with.

I know many of you have so much more to cope with on a daily basis, so I do feel quite silly for even posting. It's just that I feel like i'm gradually losing her. Her good points are being masked by all her "odd" behaviour recently and she's starting to really stand out. We went out for dinner at the weekend for the first time in ages.............i'd forgotten why it had been so long. She wouldn't stop singing at the top of her voice and waving her arms around. She talked about completely random things and was constantly quoting from films at one point. She can't just sit and eat her meal, she has to have a bag full of toys and plenty of paper and crayons. She draws constantly and she does have a talent for it, but sometimes it hits me like a brick that she's acting so strangly. I can't seem to have a conversation with her anymore and it really hurts, because at one point she was coming on so much with her social and communication skills. They seem to be evaporating now though.

I've had her on Omega 3 for the last couple of weeks, but if anything i've noticed that she's become more dreamy, grumpy and fidgity. That makes absolutely no sense to me. I didn't necessarily think they were going to make a huge difference, but I wasn't expecting this. It could, of course, be a coinsidence, but i'm not sure whether to keep going with them or possibly switch and just stop them all together.

Feeling so low and deflated today. Dropped her off at school and it was like I wasn't there. She ran off on the way and didn't listen when I shouted her to stop. Even when I said goodbye she just looked at the door and waved goodbye with this strange look on her face. I feel like there's a piece of her missing. I just don't understand how or why everything seems to be getting worse.

Any advice or just comforting words much appreciated

Thanks for reading.

Just read that back. Should actually point out that I wasn't standing at the door that she was waving at. She looked straight past me, but didn't pick up on it atall.

:(

Very sorry to hear she's getting worse. AFAIK 5 is an unusual time to get worse.

How far through the diagnostic process are you?

What brand of Omega 3 is she on?

Have school noticed anything? Is anything going on at school? Or at home?

Hi Indigo

I know you'd suggested a specific brand, but i started her on a brand called Eskimo kids, which is an oil rather than a syrup. It contains Omega 3,6 and 9 and vitamins D and E. I got it from a health food shop and the woman there was really helpful. She was saying how amazing this oil was and actually, dd took it very well, but like I say, I can't understand what's happened since taking it. It may have nothing to do with it, but it certainly coincided.

She's been discharged from the SALT's and they even said that some her of speech was ahead, but I can't say I agree. She's not currently being assessed for anything else. The way things are going at the moment though, i'm not sure i'll have a choice.

Nothing's happened at home and as far as i'm aware nothing's happened at school. She's won star of the week a few weeks ago and her reading and writing is coming on really well. I think from their point of view, as long as she isn't being disruptive and is able to learn, they don't see a problem with her.

Eskimo Kids is a good brand, and should have helped.

I think I'd stop using it and see if that changes things or not.....

Then in a few weeks I'd probably try a different supplement with her.

Sorry things aren't going well for you / her at the moment :(

I would also start to push for an assessment for Aspergers. Go to your GP and ask for a referral to a paed.

A dx might help at school.

That's the problem though, every time I bring it up at school they agree that she's a little dreamy and struggles to keep friendships going, but don't understand what i'm getting at when I express how concerned I am. Bear in mind though she's still in reception year so there's still a lot of play based learning going on. I'm sure this is going to suit her more than when she moves up in september. I'm not sure how she'd cope, but school say she's coping fine. Is it completely irresponsible of me to take their word for it?

Yes, you can't trust school :( - you know that really.

Nor are school qualified in anyway to dx Aspergers.

Only a paed can tell you if she does or doesn't have it.

Write down a list of concerns, have a cry, and if the list is long take it to the GP.

I feel like i'd be doing it alone though. Nobody really agrees with me. I know i'm her mum and it's my job, but I need some kind of support and I don't think i'd get it.

I waited because school didn't agree with me.

We've been having problems with DS2 for years, but school weren't :)

He's in Y3 and I just got him a dx of Dyspraxia a few months ago. I went to a private OT because I just couldn't face the NHS.

I think he also has ASD, but decided a dx of Dyspraxia would provide enough help :) - and it has. School have now done stuff for him.

You can wait.

Do you have a partner? Or any family?

Yes, but overall they don't agree with me. They think that i'm looking for something to be wrong with her and that I should just accept her quirks as wonderfully individual rather than a cause for concern, or in this case, a diagnosis.

It's very, very hard if your partner doesn't agree :(

Lots and lots of threads about it on here, so you're not alone.

Maybe just keep talking to him about your concerns and hope that in a year or so he'll change his mind?

Does he know many other kids her age? Maybe engineer it so that he can see how 'quirky' she is?

And keep making lists / diaries. So that in a year you will have more evidence than you do now.

Or maybe you could agree that neither you nor he are qualified to dx, and that is why you'd like her to go to a paed. Just to stop you worrying...... If she doesn't have ASD then the paed won't dx it........

Ahhhh, well actually I think that's one of my concerns. What if I am wrong and she doesn't have ASD. There is part of me that worries that if I take her to see a paed they will find something to diagnosis her with even if it's not right. I know that may sound a bit loopy, but I believe that we'd all have something if we were assessed.

The more I talk to my mum about my behaviour when I was a child and teenager, the more it sounds as though I had severe behavioural and emotional problems. She admits that she knew that but didn't think it was necessary to get professionals involved and can say now, I told you so, because i've turned out ok. Whatever that means. I actually suffer from depression and mild social phobia, so i'm not sure i've come out of it completely unharmed.

I think I will start making a list of my concerns though. I get increasingly concerned when I read how these "quirks" become more obvious the older she gets. I guess because she won't have that 'she's just a little immature' or 'she'll grow out of it' sheild to hide behind.

shield

It is really scary going to a paed.

I'm the same, school offered to do a language assessment on DS2 (which I asked for!) and now I'm worried that he doesn't have a problem and school will think I'm looking for problems......

I don't think a paed will dx her with anything if she doesn't have it. They are normally reluctant to dx even if she does have a problem.

You don't have to share the dx with anyone. Certainly not your Mum :)

Nor do you even need to tell anyone that you're seeing the paed.....

It doesn't sound like you came out 'unscathed'. It sounds like you'd want to support your DD more than your Mum supported you.

I know what you're saying.

I guess I need some courage.

I didnt approach my GP til ds1 was 7.5 to may great shame

He was great.

Told me he thought I was right to be concerned and referred us to the comm paed (didnt help us personally but that another matter!)

A lot of dc with asd (like my ds1) do not tip toe walk, flap, twirl etc whist at school...they wait til they get home (there is a thead about this in fact thats ongoing atm)

You are her mother. You know her best. If you think there is a problem (and I can see why you do btw) then take her to the GP.

xx

My DD has got a bit worse with more stimming recently, and she is 5, I think the stress of school has got lots to do with it...

beca, I know I know her best, but there's still that doubt in the back of my mind. I did actually take her to see my GP and she suggested waiting til she was at school to see how she coped there. That's the point we're at now, but like I said, the school don't seem to think there's a problem. When she first started she was actually having 1 to 1 because she had problems at pre school so the TA was appointed as her 1 to 1. We had one IEP meeting and it seemed official that she was classed as having SN. Fast forward a year and she's not having 1 to 1, i've spoken to the teacher so many times who insists that she isn't SN. She's just "a drama queen and a bit of a loner". What did the school think about your ds before you went to your GP?

fanjo, the stimming can be so difficult can't it. I try and switch off, but if it's not irratating me, it's really upsetting me. I hate the ever increasing stares she gets when we go out. I just get so protective of her, but at the same time, i'm ashamed to admit, I get quite cross with her when I can't 'snap her out of it'. If she really can't help it and I don't think she can, then why on earth do I get cross with her?!...........

Same as you, OP.

"no problems"

My son has asd and severe dyslexia. Took a private EP report to get the dyslexia dx and it has changed nothing...no 1-1, no interventions, nothing.

Your dd was on the SEN register? Is she still? If she has an IEP then she is still on the register.

It absolutely infuriates me when a teacher who has known your child in onw setting for a few weeks make these sweeping, pointless statements!

If you agree with the teacher thats fine, but as you have posted I am guessing you dont?

I wish I had started the process of getting a dx much sooner, but I let myself be fobbed off by so called "professionals" for far too long.

Detox

Simply put, you are your child's best - and only - advocate. No-one else is better placed than you to fight her corner for her and this is also because no-one else will.

I would insist to the GP that your DD is referred to a developmental paed asap and do not take no for an answer. It is all too easy to be fobbed off by others but equally what if you are right and DD is somewhere on the spectrum?. You owe it to both of you to pursue this further and seek answers. Extra support too that is not legally binding i.e via a statement is too easily curtailed as has happened to your DD.

BTW many school staff are simply not trained enough in any aspect of SEN let alone a girl who may be on the ASD spectrum. It will go over their heads and if she is quiet and complaint she will get missed in a classroom with the result that her needs there go unmet. Her class teacher seems particularly unhelpful; I'd be asking to speak to this school's senco now. Ultimately if this school remain unhelpful you may need to find another school.

Yep.

Everything attila said

detox..yes, it does get very wearing, my DD waves a pen back and forward in front of her eyes as often as she possibly can, gets upset if we are away from home without a pen too long :(

and she doesn't do it at school, she waits until she gets home, as Becaroo said

Detox, I really feel for you. Its a horrible situation to be in and lots of us here have been there.

I have to agree with Beca and Atilla.

Not one teacher I know of, including the really good ones, would be able to spot AS in a young girl. Girls present very differently to boys with AS and it can be hard even for the qualified professionals to unravel what's what and give an appropriate dx. There's no way they would dx your dd with anything unless she has it. Dx are hard to come by, often even for children with obvious and clear traits.

Historically, teachers don't even have to complete the SN module of teacher training, as its one of a number of optional modules and even if they do, if wouldn't give them enough knowledge/information to be able to easily identify AS in a 5 year old girl.

I went through similar with my ds. I was fobbed off from Reception year right through to year 3/juniors, when he had a breakdown from trying to cope and hold it together at school every day. He is now 9 and received his dx of AS in January 2011. Since then things have improved no end for him and he's gone from an anxious, stressed, unhappy, school-refusing boy to one who is happy and thriving at school. I really wish I had gone to the GP sooner.

The route we took to dx was GP - referred to Community Paed - referred to local ASD Assessment Unit. We also brought in the emergency Ed Psych team into school and they contributed to the assessment process, but this was because his emotional state was so fragile at that time.

My ds loved school right up until the end of year 2, despite being constantly bullied for 'being different'. However when he went into year 3, he couldn't cope with all the additional responsiblities and changing social aspects of school life and it was heartbreaking to see the result. If I could have my time over, I'd have him down to the GP in Reception year in a heartbeat in order to protect him from what he's been through in the last few years.

My dh was also of the opinion that I was over-anxious and probably wrong to start with and his family are completely unaware of ds's. He did however, realise how wrong he was by the time ds2 was at the end of year 2 and has been supportive, in a kind of hands-off-ish way ever since.

My best advice would be go to the GP with a list of your concerns and ask/tell them to refer you to a paed. In the meantime, perhaps book an appointment wiht the school SENCO to discuss your concerns, as she/he would be better placed to have some idea, although still not qualified to dx.

If your dd does go through an assessment, you don't have to tell anyone that you don't want to know and that includes your Mum and any other naysayers. You have to do what you feel in your own heart is right and fundamentally, its no-one else's business.

Teachers don't have much of a clue. My DS (5) is in reception and has moderate classic autism, it could not be more noticeable, he has massive speech delay. He has specialist 1:1 support (put in place by Tribunal at nursery) and initially the teacher made stupid comments about how she did not understand why he needed it etc etc and when we referred to his social skills she would in one breath say how she had never seen him interact or look at another child, and in the next say 'oh but lots of them need help with social skills at that age', as though zero interaction with another human being was normal. After a few weeks she started saying 'lots of toddlers do that', so she at least recognised he was delayed and like a younger child, and by Xmas she was saying how she wished all the children on the spectrum could have the help by DS had and was cursing the autism outreach for not bothering to come in and assess another child she was concerned about. There is also a view that nothing can really be done, or conversely that they just need to play alongside and the social skills will magically rub off. Now I suspect DS teacher would be able to see all the work his 1:1 has put in to increase his social interest in others is starting to pay off. The point is teachers are not experts on social skills, they get zero training on this and social skills will not just happen, and as friendships get more sophisticated - which happens early with girls, it will be harder to understand the rules. It is hard to access the right kind of help, but once you have it it can make a big difference.
Another good thing about a label is that you can explain to the other children, I cannot tell you how big a difference this makes. Teachers may not 'get it' but 5 year old children certainly are accepting and understanding. Once they know there is a reason for why DS does not look, respond, flaps around etc then they just get on with it and accept it. Our main worry now is that so many of the girls mother and 'help' him they are starting to get in the way of him being independent! Invisible disabilities can be confusing to children as well, but once it is explained to them then at that age they are usually fantastic and inclusive. So far from helping to keep it quiet, our experience has been that the opposite is true.

Agnes, that's interesting about the mothering by girls in your ds's class.

The other children in ds's class (year 5) haven't 'officially' been told that he has AS, but obviously have noticed the extra support he has etc. They've been together as a class since Nursery, but when I was on a school trip with them the other week, I noticed that all the girls are really kind and supportive of him, going out of their way to bring him into their conversations and ask him questions etc.

I used to help out in his class in infants and they definitely weren't like that with him then. In fact they were usually quite irritated by him, whereas now they really seem to have accepted that he has a good reason to behave the way he does and are supportive/make allowances as a result.

It was lovely to see and goes some way towards being one of the reasons why he is so much happier at school these days.

Actually, the boys are also a lot more naturally inclusive with him these days and I've noticed there's a core group of them that are particularly protective and supportive of him