I'm still concerned about DD2

[Lougle]

She's 5 now. Turned 5 on Sunday.

She wanted roller boots. Really wanted them. She had been trying to use some hand-me-downs that were far too big. So we bought roller boots. She was delighted. Then I tried to take her outside. I was holding onto her the whole time, but she was scared. So far, so normal. But her reaction was out of this world. We were stood in the street, with her yelling at the top of her voice that she couldn't do it, she was too scared, etc. She wasn't even moving, and I tried to reassure her. Then I told her that she needed to lower her voice (Sunday morning, relatively early). She just couldn't do it. She completely lost control of herself. I can't describe it properly...but it wasn't just a tantrum. She was beside herself.

She was sharing a room with her sisters (recently moved, boxes everywhere) but we'd managed to sort the house out so that DD2 and DD3 could share a room, and DD1 has her own room. She was delighted. So Mum and Dad come to visit. Dad very jokingly says 'ooh a lovely room, just right for me.' She went wild. She was red in the face, shouting at him that it was her room, that they couldn't live here, that he was being mean to her. I said 'oh darling, Grandad was only teasing' but it didn't pacify her at all. She was furious with him for teasing (he really didn't mean to wind her up, he didn't know that she would react like that, because normally I quietly prep her about jokes, etc., although I hadn't realised that I do it).

She's got obsessed with 101 Dalmations. Wants to watch it every day, several times a day. I decided to put on 102 Dalmations instead, earlier, and she said 'I don't like 102 Dalmations because it's not the same as 101 Dalmations.'

She still seems to mishear, or just not hear, when we talk to her at times. I can't work out if it's an attention thing, a hearing issue, or an understanding issue. She's quite bright, I think, doing well at school, but I wonder if she self-selects activities that she copes with.

This afternoon, her cousins visited. I asked them not to go upstairs. But DD2 and her cousin of similar age sneaked upstairs. DH didn't know, and started drilling a hole in a wall for a curtain batten. DD2 was so frightened by the noise, that she ran full pelt into her room, jumped onto her bed and sliced her back on a radiator bracket. She had been going fast enough that it sliced through her t-shirt, into her back, and I had to use stop spray to stop the bleeding and steri-strips to close the wound.

Now, it was upsetting for her, but her reaction was once again beyond reasonable. She was yelling at the top of her voice, completely irrational, completely unreachable, if you see what I mean. It's not just the screaming and yelling...it's the way her eyes go...like flashing fire.

DD1's home carer was here at the time (a really lovely lady, experienced and extremely good with DD1, who is a tricky character at times) and she said that there's 'something not right'.

What do I want you to say??? I don't know. I don't know what to do. I mean I can hardly go to the GP and say 'DD2 is throwing hissy fits when things are slightly unpredictable', can I? At least DD1 was falling over. That gave me the excuse to say 'what's going on here?'

I think you can go on your instincts. My dd is almost 5, has such bad tantrums over the littlest thing she has even given herself a nosebleed! I also have ds who is almost 6 and has asd, and I am absolutely certain that dd is NT.

Trust your instincts I think. Not saying there is anything to worry about, but actually I think you can go to the gp and say just that.

Can you video the episodes so that other people can see what you are trying to get across? I can see what you mean, saying "Her reactions are extreme" just doesn't paint a vivid picture. If your DD1's carer can see something amiss, then I'm sure professionals should be able to, if you can get some visual evidence.

Otherwise, your parental instincts are telling you that something isn't right, and that's the most reliable pointer. If I were you, I would be making an appointment. Because I would need to know.

She needs to be seen by a child development paed

So Go to your GP and say you think she might have ASD and ask for a referral to a paed.

List all of her ASD symptoms - as you did here. (meltdowns, unable to understand jokes, excessive anxiety, sensitivity to noise) And I'm sure you'll think of some more.

I'm not saying I think she has ASD (she may or she may not) - I just think that may be a good approach to take with the GP to get her seen by the paed.

Justa! Broken arm? I thought you had a very bad back. Have you become even more broken?

Well, even being a write off isn't the end of the road - you can buy write-off's back

Incidently, it's the same carer who's said she's not right twice, rather than two carers. But my Mum thinks there's something 'not quite right' too.

I also think you need to go with your instincts.
Some of the things you describe remind me of dd1 -particularly the episode with the roller skates.

IMHO, your dd sounds like she's really stressed, too -dd1 also has this. Could it be that the holidays have unsettled her?

Good luck, hope you manage to get some answers.

you can go and say (in effect) that she is throwing hissy fits when things are unpredictble - the key is how you phrase it.

the unpreditability/amount you have to prep her for jokes/slightly unusual situations/something out of the ordinary routine happening is what you need to emphasise.

after all, most of the range of 'odd' behaviours seen in developmental issues are standard toddler/young child bhaviours, but it is the extent to which they are present which counts - the llevel of obsession, or the amount of organising around the behaviours that needs to happen which is what counts.

fwiw, she sounds a lot like my dd2, and I am convinced that dd2 is not NT. she is high functioning enough to appear NT to most people, and she is bright enough to cope well enough at school for now.

however, we are under no illusion that it will remain this way for long, and so we are doing what we can now to work on what we know she will find hard as she grows up, school gets more formal, her peers get less (small child) rude and bonkers, etc.

sorry for crap typing and (probable) nonsense and waffle - have small wriggly baby on me

huge - was nearly 9lb, which was a bit of a shocker!

wriggly, and currently leaking (milk, thankfully)

and sending dd1 wild with jealousy over a stim/habit she has - she likes ot be patted/rubbed on the chest/back, and she has to put up with seeing ds patted and rubbed all day long

Oh a huge baby I think you ladies with babies are amazing. I always thought we'd have four, but right now the thought of it (while lovely and cooey) brings me out in a cold sweat. Between DD1 and her SN, DD2 and her 'quirks' and DD3 with her NT 3 year-old-ness...I wish I was a drinker sometimes!

"however, we are under no illusion that it will remain this way for long, and so we are doing what we can now to work on what we know she will find hard as she grows up, school gets more formal, her peers get less (small child) rude and bonkers, etc."

It's this.

I feel like there's a ticking timebomb, and I'm the only one who knows it's right under my backside!

With the rollerboots, the best bit was when she was yelling at me 'It's too fast, they're just too fast (she wasn't even moving) and I didn't want rollerskates (er yes you did) and I just wanted a stupid bike!'

Lougle, I felt like that for years -that I was the only one who could see that things were about to explode :(
With the benefit of hindsight, I wish I had just trusted my intuition (I took dd out of school to HE her when she was 8, after 3 years of her sobbing daily about school).

You have the benefit of 'having the t-shirt', so to speak, so you really should have your concerns taken seriously.
When dd1 was 5, I knew there were issues, but everyone was quick to pass them off as developmental. Maybe some of them were, but only a very small percentage.

I think it's so frustrating, because you have to desire to be able to say 'I told you so'.

Just to add, about the roller skates, dd was desperate to ice skate when she was 6.
So we took her, she was lifted on to ice and stood screaming, without moving.

Does your dd have sensory issues?

was a shock, lougle, as I only looked about 6 months pregnant, so god knows where he was hiding!

we have taken the approach of telling the school our concerns. they probably think i am neurotic a nd over thinking things due to dd1's asd, but it is out there, and they have seen just enough of dd2 switching fro, incredibly mature, sensible, precocious child to crumblling sobbing wreck over a slight non-problem to not entirely dismiss our concerns out of hand.

I think they still think she will fall in line and get on with evetything, and of course she might - but what they are not taking into account is what it costs her to cope. and as she gets older, and peer relationships get more complicated, and school expectations increase, i do fear this will result in more meltdowns at school - the classic case of eg AS coming from (to the lay person) out of nowhere.

OK, so sensory typee issues:

-Sucks hand constantly when tired/stressed/new situation/excited. Sucked hand from day of birth. Same hand, always, and sucks hard enough that a small callous forms.

Waistbands- ok with soft ones like leggings. Ok with ones that can be adjusted to be loose like her school trousers. Does not like jeans or similar. Cries if I ask her to wear them.

Noises - hates loud noises. I remember now that when I took her to hospital with diabetes symptoms, a doctor washed their hands and put the paper towel in the bin. The lid clattered and DD2 jumped so high that the doctor assessing her said 'does she always do that?'

Won't use hand-dryers unless I force her. Until recently would rather not use the toilet at all if she sees that there is a hand-dryer in the toilets.

Hates shouting - bursts into tears if someone shouts at her.

Cut her back quite badly yesterday running away from the noise of a drill.

Her voice is generally loud. Even when I tell her she's shouting, she says 'ok' and starts again with her voice at the same volume. When she's 'whispering' she either makes no noise at all (just lips moving) or 'whispers' at what I'd consider a normal speaking volume.

Her cry can be heard for MILES and she can't lower her volume, even if I beg her

Oh and sock seams.

Also, often makes a funny moany noise when something is not quite right, instead of using words to ask for help.

Lots of her sensory issues match dd's.
In particular, the sock seams and waistbands. Clothes are still a huge issue in this house.

I think there's enough there to justify an assessment.
DD was dx'd with SPD long before her AS DX.

Her sensory issues are similar to Dd3's lougle, she makes growling noises if she is not happy and will cry and shout randomly if she cant do something but never asks for help.

Waistbands are a biggy in our house and socks are only worn with shoes, so when the shoes come off so do the socks.

Dd3 cries really loudly too it sounds like she is being murdered

Do you think the roller skate thing could have been because she didnt know how to do it. Dd3 hates not being able to d something and has no idea about practising, if she cant do it straight away forget it.

I would agree that you should trust your instinct and get her assessed. It ws absolutely the best thing I ever did, I knew Dd3 had ASD and even though it took a while to convince the proffs I was proved right in the end.

If she was going into yr 5 without a dx, I think we would be looking at serious issues.

Interesting that you both see similarities.

Another one I noticed today. She's always been funny about being dirty. But today, she was on the rollerboots (with lots of encouragement) and she leaned out to the wall for support. When she let go, there was a tiny bit of dirt from the side of the house on her hand. She spent quite a few seconds wiping her hands together to brush off the dirt and was inspecting her hands, etc.