Been thinking for a while that DD has sensory difficulties or on autism spectrum. So difficult and finding it so hard.

[Falulah]

My DD has just turned 4 and since she was little she has always been a very lovely but very difficult baby. 0-60 screaming as if she was being murdered because she wasn't being held or ...well for many reasons that didn't seem to be colic related. Didn't sleep through the night for a long time and for a while every night 2 hour screaming marathons where I would comfort her, she'd fall back to sleep and 10 mins later she'd wake up screaming again and repeat for 2 hours.

She used to freeze and shake with terror when I changed her nappy under fluorescent lights in a public bathroom, as well as jump out of her skin, even though we lived in London in noisy city, whenever a moped or loud car/van drove by outside the house, or whilst we were walking along she would jump and run away from the noise sometimes not even to me just a survival type panic and run ! Also recently she was watching a small pirate show at a kids fair, she joined in the beginning with running from side to side with the other kids, and repeating the pirate phrases, but then when a slightly scarier pirate with a bit more of an angry voice came out of a treasure chest, every other child sat down watching - of all different ages - she jumped behind me in terror and wouldn't even let me sit her on my lap to cuddle her and watch with me, she then jumped up and bashed her head on a wooden pole and same time bit her lip, I tried to reach out comfort her but she was so overwhelmed/terrified by all this that she just started running away from me, the whole scene, running out into the field away ! None of the other children had this reaction.

She was and is developmentally very ahead with speech and has fantastic memory, looks you in eye when speaking, understands many many concepts and sometimes I think cleverer in terms of rational and critical thinking than me ! When she was 1 year old she could say 20 words, at 18 months she could count to 10 and say stuff like point at a tree with different coloured birds in a book and say "3 blue birds".

Her tantrums were SOMETHING ELSE though...I have nannied for a lot of children and her tantrums blew me away, over seemingly very insignificant things. She still finds it intolerable sometimes to not be in control or to be told no. She often asks me a question, and I give her an answer - very simple and then she repeats the question over and over even if my answer was yes. And she talks about it on repeat and makes sure it is going to happen even if I said yes.
She's very rough with me and climbs all over me, pulls on me, constantly needs cuddles and clings, sometimes regresses to baby talk & has been regressing a lot with night terrors and starting to poo in her night nappy since she has been going overnight to her Dad more. She seems stressed. She's chewing on her dress and when we were at a fair the other day she couldn't stop pulling up her dress and chewing on it all the time over and over and over no matter how many times I asked her not to. Also fiddling with everything and having to touch everything eg. starting to swing an ice cream sign whilst waiting in a queue, hard to get her to stop.

Now with her clothes it's getting ridiculous it's so difficult to leave the house because she can get herself ready but she will try and wear just one pair of knickers (hand me down from years ago with very soft edges - don't know where I'd buy more!) and constantly says clothes are hurting her/itching her/uncomfortable - she has huge meltdown. Socks have to be worn inside out. Shoes have to be fastened the exact right amount of tightness or meltdown. No cap sleeves, buttons, motifs or seams without a vest under which has been hard with hot weather. It's been getting worse since she started going to her Dad overnight again I do think, these past few months even skirts I thought she was fine with and wore a few months ago, or knickers she was fine with that still fit her, she has now refused to wear and screaming meltdown etc and pulling clothes off herself as if they are made of acid. Managed to find school polo shirt she will wear for school in Sept thank god but she will have to wear a vest under. Thinking of buying really expensive sensory socks just to make it easier to get her ready.

Also with her tantrums she finds it very hard to calm down - mostly she can and I think she is getting better but she needs a lot of input from me to calm down. Once recently she had a tantrum and only calmed down when I wrapped her in a blanket and rocked her like a baby to calm her ! She makes herself sick or hurts herself by stamping on her own feet hurting the tantrum. She also had a huge meltdown when we were in an art gallery recently and she saw the lady take in the sign from outside and she maybe heard her make a comment that they were closing soon and she went to run outside in terror because she thought we could get trapped inside !! And had a huge tantrum in a split second !

I try not to give in to the neurosis about the clothes sometimes as I know she was fine with certain items but the amount of items she will wear now is dwindling I feel massively ! Sometimes I just let her wear the soft pyjama shorts and tshirt and stuff but for school I am worried and I don't want to encourage this if she is just being picky or anxious I want to show her that it's ok and that she'll get used to the clothing items if she relaxes. But other times I just lose it and tell her she's wearing it and there's no question about it. Then I feel awful because she cries and says "But you're my Mummy you're supposed to understand how I feel !!!!"
She also was very funny about food texture & types but seems to be getting a bit better....nursery encouraging her etc.
She also seems to press with pens far too hard and ruins them, she runs and bashes into me very hard sometimes not realising it will hurt herself or me, she sometimes bites me when she gets very excited or headbutts my hip/leg if she is nervous/shy. But at nursery she is very bright, doing really well, in all areas she is above her age range etc. She does seem to have friends at nursery and they say she shows empathy to babies and younger children but I think she is quite controlling with other children in a game. She shows empathy to me. But also she tries to dominate me physically eg. if I'm talking to someone, she starts having a tantrum, stepping on her own toes to hurt herself, climbing on me and trying to sit with her body in front of my face and the other person, putting her hand over my mouth - turning my head with her hands where she wants me to look. And other times she deals with this fine and just sits quietly or plays but that is very rare.

This morning I said right lets get dressed (dreading it) and she happily said "Ok Mummy, you know what clothes are comfy for me" with a happy smile on her face and then by the end of it all, her rejecting a skirt that was perfectly fine a couple weeks ago and me worrying I'm going to be late for work I just shouted at her and said you're wearing it I can't deal with this, I feel like I'm walking on eggshells. She's at nursery now wearing the skirt and I can tell she doesn't like it but she's being distracted at nursery and stuff so she didn't complain again about it especially after I just said over and over that she is wearing it and I don't want to hear any more complaining about it at all. So maybe she just resigned herself that she has to wear it. Not sure if that was the right move but :-(

Sometimes it can feel like I'm a prisoner in my own home as sometimes I can't even go upstairs to the toilet without her screaming for me and needing me to be with her cuddling her etc. She is 4 ! She's always been like this and it's getting worse and I don't have a problem with buying sensory socks for her and really soft clothes but it is all so difficult, and I need to know - does she really need these special allowances and do I need strategies to help her? Or do I need to normalise and not pander to neurosis / is she just being controlling because she's finding other aspects of life difficult. Her Dad never gives her any boundaries at all and is a very different parent to me. He lets her do whatever she wants - she's always in control of him .Then he loses it and screams at her and frightens her/punches something in front of her/ perhaps has been abusive from what she's said in the past but CAFCASS did not listen to me about this and court have ordered her to go to him 2 and 3 nights a week alternate weeks :( She's building up to it but starting overnights with him again has increased her anxious/controlling/obsessive behaviour, increased her stroppy ness and clingy ness with me, increased her sensitivity to clothes, night terrors started again (but could just be because it's really hot ?!) she has done a poo in her night nappy 2 times now as well the last month.

I don't know what to do...speaking to GP later. Me and her Dad don't communicate except about practical parenting things through a contact book or emails as he was abusive to me and is very manipulative and my wellbeing deteriorates the more contact I have with him or it did in the past anyway so trying to protect DD from that. I am in a really good place in myself now - have done lots of healing and therapy for myself but could do with more probably. But I just find DD so difficult sometimes and overwhelming/exhausting. I am very patient with her 90% of the time but sometimes just cannot deal with it and end up snapping at her and feeling awful :(

I didn't want to read and run, and some of what you've written rings true for my DD, although not to the extremes that you seem to be experiencing. I would definitely be pushing for a referral to the paediatrician for support and diagnosis. In the meantime, a book that I've just found and is really helpful at explaining things is "Understanding your child's sensory signals" www.amazon.co.uk/gp/product/1466263539/ref=oh_aui_detailpage_o00_s00?psc=1&tag=mumsnetforum-21&ie=UTF8
Those things that don't make sense to me such as the clothes, and food are nicely explained, as well as suggestions for ways to cope with them.

Changes in routine are major issues, and seem to be an problem from what I have read above which could explain the escalation in behavioural problems before/after she goes and stays with her dad.
We are only human, and if you do feel like you're going to snap at her, it might be better to just walk away (if it's safe to do so) and calm down. Contrary to what you'll be thinking at the time, she isn't doing it to annoy you.
Hope all goes well with the GP and you get the help and support you need.

Thank you so much I’ve just downloaded that book to my Kindle. What kind of things do you have with your DD? Does she have SN diagnosis ?
Obviously it’s so much easier if everyone around DD can be sensitive to these signals and her needs and then not have to feel that we need to fix her or teach her what is normal but just to help her and understand her. My family don’t really have that viewpoint. They think I let her walk all over me and that she has behavioural problems maintain because her Dad’s side of the family don’t give her any boundaries and the entire time she’s with him/them everything revolves around her & they very much emotionally manipulate DD as well by a lot of the things she has said when coming back from him sadly.

I do think though that she needs some help and support and me too so I can help her & a diagnosis would be helpful maybe but I know her Dad would be very against her getting a diagnosis though.

My DD (9) has a diagnosis of DCD, but has a lot of sensory issues as well on top of that, so we're still trying to push for some kind of diagnosis for that as well. It's been a learning curve for the whole family, but fortunately everyone in the family and extended family are understanding of her additional needs.

There is no fixing them, but hopefully as your DD gets a bit older she'll begin to understand that there are boundaries.

Transitions are one of the main issues we have as she doesn't cope well with changes in environment or routine, so everything has to be planned well in advance with as many home comforts as possible so that everything is as familiar as possible. She won't even stay with her grandparents overnight unless we're there as that's too stressful for her. I hope you find the book useful - I was amazed how many of the things in there were things that we'd already done or had been thinking of doing without even realising it!

I spoke to the GP on the phone and described a few things of that I said here and she said the is happy to refer me to the community paediatrician and that I will get a letter. She said I should keep writing things down anything I notice or stuff from the past that I remember and patterns or behaviour. She said also just have a research online with how you can help her with sensory stuff.
What is the next steps? What will happen with we see the paediatrician ? Not sure I want to talk about it all in front of DD as don't want to worry her or make her feel self conscious. She is only 4 but she's very aware. I feel quite scared and sad about this.

Also her Dad doesn't know I've spoken to GP... am I allowed to do this without him or should I inform him about the appointment with the paed or give the option of attending. Not doubt he will derail the whole thing and he will kick off about me asking doctors for opinion or help as he won't want her to be labelled.

I'm glad that the GP appointment went very well, it sounds as though she's set you on the right track. If you can write things down that you notice are particular triggers for certain aspects of your DD's behaviour, then this will definitely help.

The paediatrician will usually at the first appointment (from mt vague recollection) ask for a general history of your DD, so the usual milestones and if you noticed if any in particular were early or late (probably easier with a first child than a second, as our DD is no.2 and we hadn't got a clue about milestones!) Then they'll discuss all the issues that you've been referred for and you can also mention any additional ones that you might have forgotten to mention at the time. Our paed appts always usually check height and weight as well, but as we have issues with height I don't know if this is usual for all paediatric appointments!
It's up to you as to whether you include her Dad or not - if he's not going to be any help then I can't see why you should include him, as far as I am aware there is no requirement that he has to be involved, and as for labelling, if it will help your daughter to get the help she needs, then why not? It's just unfortunate that some people don't seem to see it that way.