Just need to sound out feeling very confused & alone right now...

[MorningCoffee]

This is all very new to us, dd is 6, she is the most amazing funny little girl with a great spirit & we adore her.

Dd was always difficult from about 9 months old, i say difficult but i always use to say head strong, strongly independent & a "typical" girl.

Walked at 9 months, spoke from about 1 and could ride a bike at 4.

However as the years have gone on things have got harder & to cut a long story short her school teacher explained to me at parents evening that dd was struggling, i was also seeing many signs which were now becoming more apparent as she grew up.

School say - DD is very behind in everything, there is no eye contact, no empathy, can not process information, struggle socially, cant sit still, extremely clumsy.

Things we have at home -

Tantrums - Only way i can describe this is like a 2 year old, she will throw herself on the floor, kick and scream and keep going and going what feels like forever, it can be 40 mins it can be longer.

Very obsessive with her clothes, wont wear certain things if it clings in the wrong place, has a button in the wrong place, for instance school morning, happy to put knickers on, socks i have to do and the seam has to put across the toe exactly in the right place, polo shirt then goes on, all 3 buttons must be done up straight away, skirt then goes over head and polo shirt has to be pulled tight (no creases) cardigan then goes on top 2 buttons done up, rest left undone, we have this with ALL clothes. We also have a problem with her hair, dd has to state how she wants her hair and it has to be done this way or she wont leave the house.

DD controls our house,I know she cant help it, its part of her, she especially has to control where ds will sit, this could be on a sofa at the dinner table or in a car, dd has her own seat if anyone sits in then melt down, ds has to sit where dd says or melt down.

Anxiety - Terrible, this started in the school holidays, if i say we need to go to the shop, dd instantly gets tummy ache, feels sick, doesn't want to go, cries, sometimes i have to make her come as i need to get some bits but i know we will end up in the toilet with dd feeling sick.

I have also noticed dd has started controlling her friends, if they are playing dd has to be in control, some friends are fine but i am noticing people are starting to not like her and leaving her out, she can also be a bit ruff.

Clumsy- She is terrible clumsy, always spills drinks/dinner, falls over all the time, in fact my sister says dd does not pick her feet up properly when walking, which i am starting to notice, school say her clumsiness is very bad.

At home she will cuddle me and her Dad she will also shows her emotions if we are upset, however she won't do this to anyone else, not even ds.

Worries - She worries, i;e if she cuts her finger, she then will cry and ask if its going to fall off, if she eats something like a chicken wing she will ask if she accidentally swallowed a bone is she going to die, she gets herself into such a state she starts to feel sick.

Hates the word no, in fact no is not in her vocabulary, also seems to be in her own world a lot and you can speak to her but she won't be hearing you.

I am sure there is more from reading this what do you think?

Dd has been referred to a pead i think it is, i also have an appointment with an educational physiologist next month and she also has SENCo at school involved, does anyone know what the expect, what will happen now, obviously we are aware that dd is needing and help & thats why i have pushed with the school (who i have to say have been fantastic) to get this help and maybe a dx at some point.

Just thought of something else, dd goes through shoes like nothing before, its costing us a fortune, 2 weeks she has had her school shoes and already needs another pair, i am dreading winter because EVERY day she comes home with holes in her tights

I am struggling a bit, i can get very frustrated but i also know dd can't help it, most days i just about deal with it, the tantrums are hell if i am honest & i get them every day mainly before school and as soon as she comes out, i am also noticing dd is struggling more and more socially and children seem to be getting annoyed with dd and don't want to play with her dd just cries cause she doesn't understand.

I have so many questions, feel quite alone & just don't know what to expect for dd and the future we love her so much & just want to make her life as happy as possible, i think the school are thinking Aspergers & maybe Adhd, i think i agree, if you have any wise words please let me know.

Thank you.

I would also consider dyspraxia. When you get your appointment ask for a referral to ot especially for sensory issues which could explain her clothes etc. speech and language could also be good especially to check her understanding of language. She does sound like she could have aspergers. Diagnosing girls is especially difficult as they tend to hide it better ie good at copying social skills etc. with her not liking the word no, sounds like its a control thing so reduces her anxiety. My son is like this and we have had to change how we use our language with him

You sound lovely, dd is lucky to have a mum and family who loves and cares for her so much.

I think you have done all you can - the wheels are in motion and you have appointments with the right people coming up.

I don't have a lot of personal experience although ds struggled a lot in his early school years and I got so much support from lovely people on here. Hang in there, someone will be along to help you more soon.

Thank you bjkmummy, i agree about the control & the no.
I will ask for the referral to an to, thank you i wouldn't have known to do this, its things like this that make me feel so useless.

Can i ask what sort of Language do you use, I also try to divert dd attention quite a lot which i find does help but not always.

VonHerrBurton - Thank you, I have to say dp is very good with dd so if i am pulling my hair out by 5pm i know dp will be back about 6pm so he can concentrate on dd.

Thank you hotheadpaisan i will look them up. We ride a lot of things out with dd, although i wont say we always let her have her way we pick the battles as some really are not worth it, i am learning the whole school morning routine and we had to good mornings this week, i try to help dd and explain to her situation as best i can and also try to pick my words wisely at times.

We never have a break as no one seems to be able to cope with dd very well so, i also feel quite protective of her.

Hi

I was in your position 7 years ago and I know how scary it is.
I agree that you sound like a great mummy and your dd is lucky that you are so perceptive and aware of her needs.

Your dd sounds exactly like mine. She still has the majority of the traits you have mentioned, although some have eased with time.
My dd has Asperger's, dyspraxia and Sensory Processing Disorder. Traits can overlap from one condition to another, which makes diagnosis difficult.

It might be an idea to have a word with your GP and ask for a referral to your local Child Development Centre, where her issues can be assessed by a range of professionals.

I know how frightening and worrying it is. However, even if your dd does get a diagnosis such as AS, it certainly doesn't mean that she won't have a happy, fulfilled life. She will still be able to reach her potential-she will just need to do it with support and she will have more challenges to face.
Good luck, I hope you manage to get the ball rolling x

Your post rings every single bell with me.. Ds was very similar when he was younger . Ds ( now 15) has dx of aspergers/ hfa and dyspraxia.

The only difference is that for ds tantrums stopped at an early age( 3 ish) We had to be very very strict with him and not let him control everything and win . He still occasionally tries to do this ... particularly with his younger sister. If he could ,he would build people ,like objects ,into the routine of his day. When he was younger,we had to work on his need to control his environment daily. He had to come to terms with what things were his to control and what things weren't ... Also making him realise that he couldnt impact on other people like that. ( this is still on-going)
Everything else though.. Speech,clothes, eye contact ,anxiety,worries, socks ( omg socks!) , clumsiness etc is spot on
You didnt mention any sensitivities to noise ? Is your dd ok with this? This is a biggie for ds. Haircuts? Nail cutting? These are common meltdown areas ! taste ? Foods? ( luckily we missed out on this one)

Bless your girl... If she is having to hold in all that lack of control and frustration / anxiety all day at school ... Then no wonder you are getting the fall out at home.
V.v hard on you too

We were referred via gp to CAMHS who did a multidiscipline assessment. He had a ADOS test which diagnosed aspergers /hfa and then was passed onto another team to diagnose dyspraxia.

Hope you get some help for your girl soon.

Oo forgot to add ! ( this bit v. Important)
1.It will get easier

1. She will be ok ,your girl. She sounds like she has a great mum in her corner.

Thank you siblingrivalry i think its the fear of the unknown for me, i worry about all sorts too.

We orginally went to the GP because the school advised me to, after speaking with the GP they asked me to wait 6 months to a year to see how dd got on.

However through the school holidays i decided things were actually getting worse and dd was struggling alot more, i also thought as she is going into year 2 and was really struggling in year 1 i didn't think it was very fair and wanted her to have some extra support, so i spoke to the teacher and then the SENCo who gave me a referral to the school nurse i think it was.

I then went to see my own GP & explained about dd, i got a call on wednesday from dd GP who had spoken with dd new teacher, who had only been teaching dd for 2 days at when the GP called and said she had already noticed the no eye contact and her clumsiness, the GP said as the school had referred her blah blah then mentioned CAHMs i think it was?

Its so hard when its all new to you and trying to understand who all these people are and what they do and all the different dx that it could be.

What is Dla for please?

I could have written that. Even down to the pulling the shirt straight sad going through school shoes. (and riding a bike at 4!) and being hugely fifficult to live eith.
DD is 14 now. it was always glaringly obvious things were not 'right' so started down the 'what should we do?' route. Finally got labelled with Aspergers at 13.

Thank you troutpout you made me laugh with the omg socks, yes socks omg it drives us bonkers every morning, i also have socks still in packs cause she just wont wear them, there not right, the line isn't right etc etc (love her)

Forgot the sensertivities she hates it if ds makes a loud noise, she gets upset, she also can not under any circumstances brush her teeth first thing in the morning, HATES the smell of bleach in a toilet it makes her sick, in fact i have always thought her smell is heightened if that makes sense?

Food she is not to bad, i think we are lucky with this one is fine with hair cuts/washing and ok with nail cutting.

Its funny cause the more i read this i am seeing things about ds now, although he is 10, he has sleep problems, hates loud noises will hold ears, is hyper, picky with food textures, maybe i am reading onto things.

SheelaNeGoldGig - at first when dd used to be like this with her clothes i used to think she was just being a pain, i then realised it got worse and worse, i have clothes that we have brought that she wont wear, they sit with the tags on, i try to take dd shopping (although because of this new anxiety not sure what we are going to do now) she then picks, trys them on and if i know anything is bothering her i will not buy it, it seemed to be a bit better, although i beought her a school summer dress once, she tried it on loved it, it was fine, got home, next day school, puts it on and its creasing when she sits down in the middle, or the button isn't in the right place, dress straight off never worn again.

Can i ask what PDA,HFA and dyspraxia is please?

Hi morningcoffee, PDA is pathological demand avoidance, HFA is high functioning autism (aspergers similar) and dyspraxia is a developmental coordination disorder.

DD2 is just 5, in year 1, and I think she's a year behind your DD, in terms of the process. I've noticed things, but so far the teacher its putting my concerns down to 'August birthday' and 'lacks confidence', but I know that my DD1 at 2.9 was 'immature', diagnosed with epilepsy and GDD 3 months later, brain malformation 6 months later and now goes to special school

DD2 also had many sensory issues, lacks social awareness, etc.

It's a good thing that you have Ed psych already.

Thank you Lougle, dd can be very shy as well so the gp was putting some of it down to this, it goes beyond this though as dd shyness has moved on a bit and she seems to be getting a lot better with it.

The school have been fab,when i had a chat with the SENCO on the phone she mentioned seeing the Ed Psych and said she would try to book me an appointment when they were next in, next thing i knew i had a note in dd book bag with an appointment for next month then i got a letter in the post from them, with a form to fill in etc.

Have just seen DLA is disability living allowance, do you have to wait till the process is over or once dd has been assessed to claim for this? could really do with some help especially with the ongoing shoe/tights nightmare

Just looked up PDA and this is dd to a T

DLA is awarded after you fill in a massive form. The Cerebra DLA guide is invaluable, because it helps you to consider areas of difficulty which have been 'normalised' in your life. For example, a 6 year old girl should be able to get dressed fairly swiftly and independently in the morning. If you are spending 10-15 minutes ensuring items go on in the right order, that seams are smooth, that buttons are just so - that's not normal. It's normal for you, but something that would set your DD apart from the typical child she will be compared with for DLA purposes.

I would claim as soon as you have an official report which mentions any difficulties. The reason I say this, is that you could apply now, but your only evidence will be you, and perhaps a small note from the GP saying 'parent expressed concern'.

If you wait until the ed psych comes, you'll have something to back you up.

DD1 got DLA before official diagnosis. She was 2.9 when I applied, and she got High Rate Care straight away. Then she got her official diagnosis, started special school, etc., and was upgraded to High Rate Care, High Rate Mobility. She's due for renewal next Christmas. I'm not sure what she'll get. The High Rate Care will stay, but she may get down-rated to Low Rate Mobility, or stay at High.

I think before we do anything, we will go to the meetings and get dd assessed and then see what comes back from them, thank you

Hi morning I have just been reading your thread, I too have a Dd with HFA/Aspergers.

She is 10 next week and has many issues with clothes, buttons are only allowed if they can be left undone or if clothes can be slid on and off without undoing them.

She is extremely controlling and can be aggressive if things are not going her way.

She was diagnosed last year after a long fight. I would recommend that you keep a diary of her issues/difficulties, what causes them[if you know] and how you deal with them. This was one thing that really made the proffs sit up and listen.

Good luck with the assessment and keep coming on here for support and advice

Hi morning coffee, PDA fitted my son to a T too, he was 3 when. Found out about it and diagnosed at the Elizabeth Newson centre Nottingham at 4. Try using PDA methods with her , they help , but it's not easy. Video her and do he daily ( almost) diarys , be prepared , give them as much help as possible.

Thank you i am going to start keeping a diary as i think this will also help me see things more clearly, its so easy to just accept that this is normal because this is all we know so to us this is just how dd is, obviously for the school and other people its not.

Just had a meeting with dd teacher.
It was good to hear how dd is in her new class and also what her new teacher has picked up on.
She says dd does not do eye contact, also says dd struggles to interact with the other children, she said she wants to but doesn't know how to, so dd will go over but she will do something like tread on there foot to get there attention!
Dd is very behind and is not processing any information, her concentration is also zero.
It was good to be able to speak and find out what is now happening, she also explained what the Education psychologist will be doing.

Its all just a waiting game, I am really struggling with the control thing with dd at present, mainly with her friends where we live, she is VERY controlling and her friends are getting very frustrated with her, does anyone have any idea how i can deal with this best?