Horrible weekend! Dd was a nightmare................

[detoxneedednow]

She hasn't been like this for over a year.

Hi everyone. Sorry this is a bit of a rant more than anything.

Ok, so we decided to have a funfilled weekend for dd as she'd done well at school recently and a good report(ish) at parents evening a while ago and we could finally afford to treat her properly. I was actually really looking forward to it. Cineama, followed by lunch out on saturday. Leisure park on sunday followed by her favourite sunday roast chicken with all the trimmings. Sounds lovely. What could go wrong?? Afterall, dd's behaviour has been so much better recently. Cut to me putting dd to bed last night and punching the air with pure relief that the weekend was over!!

Saturday in the cinema she spent the whole time shouting and singing and kicking the persons chair in front. Ok, she wasn't doing it to be naughty, but she's normally really good at the cinema, so we were shocked. We thought ok, we'll let that go, let's forget it and go for lunch. So we went to Frankie and Benny's where she spent the whole time jumping up and down on the chair and screaming/growling at me "NOOO!!" everytime I told her to get down. Usually followed by a slap round my head. We left before desert and she didn't get her usual baloon.

Sunday we went to our local leisure park and she kept running off far too fast for us to be able to catch up. She kept getting herself stuck on the climbing frames and shout at us to get her down which was virtually impossible, she would scream at all the other children what games they were going to play only for them to walk off one by one. At one point we even lost her for about 2 minutes because she ran off round the corner so fast. Eventually we found her in one of these mini houses and I was so angry at her. She understands me when I say don't run off, but she then went on to have a full meltdown which she hasn't had in over 6 months with kicking, screaming, headbutting, growling etc etc. Everyone was staring at us like we should be locked up. It was absolutely awful. She's a big girl and controling her when she's like this is impossible.

It's like she's zoned out, gone somewhere else. She's been talking absolute nonsense, is completely defiant and just want stop bouncing, twirling, singing and it's sending me mad. I thought she'd stopped doing this. We always have minor set backs but this was mammoth! She was just how she was a year a go. I feel sorry for school today. I hope she's not the same there or i'll be getting a phone call no doubt.

How can she revert back to this kind of behaviour which she'd stopped for so long? Nothing has changed. Not her diet, routine, nothing. It makes no sense.

I'm dreading picking her up later. I'm feeling so on edge and anxious.

Sorry, thank you for reading.

detox

(((((((((((((detox)))))))))))))

I remember you writing about your DD before now.

If your DD, as you have previously suspected, is on the ASD spectrum then this type of issue is going to keep happening and unfortunately people will judge (you need to learn to ignore them). ASD is not going to go away; it is a part of her. The main problem you have is that you're surrounded by people who have failed both you and her to date.

ASD in girls is hard to spot; she probably has not stopped her stimming behaviours at all but you have come to regard what she does at home as "normal" as you are with her every day and react to it.

HV is absolutely not the person to see here; your GP must refer your DD to a developmental paediatrician. You need to see the GP to get that ball rolling. Diagnosis takes time but if you do not act yourself no-one else is going to. You are her best and only advocate here!!.

She needs further support at school otherwise you will keep on getting phone calls from them. Have you seen the Special needs coordinator there regarding your DD?.

detox, its bloody hard I grant you but you need to act decisively for your sake as well as hers. If she is struggling socially at school her ability to learn will likely be compromised as well. Teachers are also not trained enough to recognise ASD in boys, let alone girls and her needs there too are not being met.

Keep posting here and seek further support. Ignore any naysayers who say wait and see; well you've tried that and its not working. Act yourself and solely to get her the help and support she so badly needs.

Ranting is all very well and good and you need to get it out of your system but if you do not act decisively, no-one else is going to do this for you.

What did your man make of her behaviour or did he shout at her like he has done before?:(.

Thanks Attila, you've given me lots of good advice in the past.

Actually dp was really good with her. I'm not saying he wasn't cross with her, but he managed to keep his cool. I think he's better when things are really bad as apposed to just a little if that makes any sense. I know I lost my rag though. Mainly because we lost her for those few minutes which felt like a few hours!! By the time I found her I was nearly physically sick with the anxiety. I was so angry with her. Why wasn't she listening to me?! I know she can help that part of her personality, she chooses not to.

With regards to the stimming, she hadn't stopped completely before, but she'd definitely improved. This weekend though it was rare to get any kind of response other than shouting "YES!!" or "NO!!" or constantly blowing raspberries. The rest of the time she was in a little dream world talking gibberish, singing gibberish or dancing around knocking into people or knocking things over. She really didn't care, she was like a whirlwind.

We had one IEP meeting when she first started foundation class over a year ago. The SENCO by the way is the headmaster, who had to take over that role as their SENCO before had to leave out of the blue. They said at the time that she was doing really well and that she didn't need 1 to 1 and that at pre school she was obviously just a little behind and she had caught up. Her problems don't seem to be academic, but social. At our last parents evening a few weeks ago, the teacher, who is very fond of dd and I do like overall, said that she was doing really really well. She was a character(which we hear all the time) and that academically she was average. I mentioned our concerns with her social skills again and she said that she was doing really well and that she was a popular member of the class and is playing more now with a mixture of children. She always used to gravitate to a little boy with Downs Syndrome, which obviously I was fine with, but not at the exclusion of her mixing with other children. She then came out with "are you thinking she's special needs because she isn't.................if that's what you're thinking, she definitely isn't". I know you'll say she isn't qualified to make such an assumption, but at the time dd wasn't really 'standing out' anymore and was coming on in everything in leaps and bounds.

I've mentioned so many times on here that it's like I have two little girls. She could come home from school today calmly and talk to me all the way home about what she's done and who she's played with at a completely 'normal' level. It's just so confusing. How could she have weeks at a time of being this way and then have such a set back as we've had this weekend?

HI detox,

Your DDs current school is to my mind is failing her and she will go onto have more problems there (both socially and academically) particularly as she goes through the years with the academic pressures mounting. Her needs there are not being met at all and additionally they seem neither interested or actually able to meet or to want to meet her additional needs. As mentioned before, many schools and teachers within them are simply not trained enough to recognise any child on the autistic spectrum and your child is going unseen and unnoticed by this lot (look at the uninformed comment her current teacher has come out with). They may only act themselves if she starts becoming disruptive in class and that may also lead to her being excluded or you having to collect her every lunchtime. Neither scenario is one that you or she want or deserve but I have seen this happen all too readily personally and on here too.

It was also not their decision solely to state DD did not need one to one. They did not want the work!!.

What has happened with the IEP, was the last one really done over a year ago?. Such things should be done termly and with your prior imput beforehand.

Your DD really needs to see a developmental paediatrician; what are you going to do about making that appt?. You are her mother, you know there is something badly amiss here and you've known this for a long time. Your problem too is that you've been surrounded by the naysayers who think there is nothing amiss. What if they are wrong and you are right?. You are better off starting to seek proper answers now rather than in say 1-3 years time when you will soundly kick yourself for not acting earlier and really feeling like crud to boot.

You have not failed your DD at all, not one bit of it but you must act and now because no-one else is going to do that for you. Honestly they will not, all I can do from this end is give you encouragement and an impetus to see this through now for your sake as well as hers.

"She could come home from school today calmly and talk to me all the way home about what she's done and who she's played with at a completely 'normal' level".

That may be also because she is with you and regards you as "safe". Also many children whose needs at school are not being met bottle up all their frustrations of the school day only to take it out on the parents at home.

Have you actually seen her play with other children in the playground; is it playing only on her terms?. Does she actually interact with them or plays in parallel?. Has she also been invited to class parties?.

I am wondering if your weekend was a disaster because either, she was over stimulated and toi much excitement just made her flip or that she is working so hard to fit in at school that she just cany hold it together at the weekend.

When your weekends are calm and unexciting she has time to defrag from the week at school but becausr you went out she just couldnt keep a lid on it.

Also some places can over stimulate children with sensory issues. Asda does it for my Dd3.

I have seen her play nicely from afar, ie when she doesn't know i'm there. We live quite close to the school so it's easy for me to have a nosey at what's going on. Although, I usually resist the temptation because I don't think it's healthy really. When I drop her off at school she usually will run around with the boys and pretend to be a pirate or a cowboy. Lots of "bang bang! She doesn't ever play with the girls at drop off time come to think of it. She's very much a girly girl, but she also has an amazing imagination and loves the rough and tumble kind of play which she has with the boys. She has had quite a few party invites and when we had her 5th party at the end of last year 90% of her friends which were invited, came. We were over the moon! She played really nicely, was very popular and had a great time. We've not had a great deal of play dates though. That's partly my fault though as i'm quite shy(currently having CBT) and wont really mix with the other mums as much as I really should. The few play dates we have had have gone quite well apart from a few tears when they leave or we leave.

Yesterday though, it couldn't have been a more different story. She seemed to have no clue at how to interact with the other children. She was rude, intimidating, completely random and hyperactive beyond words. We left on a high though. We gave her a warning that we were leaving in 5 minutes so she had to choose one more thing to do and then that would be it. She thought about it very carefully and said she wanted to go on the big slides. She did and then we walked out to the car with her calm and happy and more importantly, keeping to her side of the bargain. She even apologised out of the blue. She apologised for running off and being grumpy. She knows what she's doing, but it's like every now and then she just thinks sod it, i'm not listening to you. I'm going to do what I want today!!

You see, all this is why i'm so confused because nothing adds up! I know i've said it all before and i'm sorry for being repetative. I irritate myself with this.

Ineed, i've got no doubt that she has sensory issues. That's so obvious to me. Also, about 6 months or so ago I posted about how over the moon we were because she finally started to ride her bike. Unfortunately that was short lived and she doesn't seem to be able to peddal for no longer than about 20 seconds. Scooters are a definite no no. She will just stand on it and tap her other foot on the ground and then get cross and scream that she can't do it and that it's rubbish. She has co ordination, but not with everything. She said the other day that her teacher always says to her "have you been drinking beer?!" because she falls over all the time. I never would have described her as physically clumsy before, but school have never mentioned this to me. It could have just been a one off comment which they made and dd just took it to the next level, which by the way, she's very good at. To say she's a drama queen would be a huge understatement!

Not long to pick up. My stomach is doing somersaults.

If she falls a lot you might be able to get a physio assessment for her.

Dd3 used to fall alot, it turned out that she is hypermoblie and needed orthotics in her shoes.
In Tony Attwoods book the complete guide to aspergers he says the many children with ASD have lax joints and difficulty with co ordination.

Would school back you uo about co ordination issues. If they will i would go back to your gp and ask for an OT and pysio assessment.

Sorry if you have already done this.

I don't know if they'd back me up actually. Like I say, it wasn't actually school who told me about the drinking beer comment, it was dd. I think they would have mentioned it before if they were concerned themselves. Having said that, I will ask them. Unfortunately, I think dd has very much fallen into the class clown role and she's very happy to be that. She loves the teachers and her classmates laughing at her impressions and her over dramatic ways. Everytime her teachers talk about her they've always got a big smile of their faces and have a little giggle to themselves, which on one hand is really nice to see, but on the other, like I say, I worry that they are missing something simply because she's funny and she isn't disruptive and to quote the teacher "always tries her hardest with her work". So I guess they're bound to be happy really, or at least satisfied that everything's fine.

Just come back from picking her up and she seems a little calmer. It's still quite hard to get through to her, but i'm just backing off for a bit. Just watching the Gruffalo so all is quiet.....................for about 20 minutes anyway. She's putting all her toys in order as I type. She's got all her little princesses in a line. All princesses with dark hair are together and so on and so on. Is this just her creativity shining through or just another red flag? Just thought i'd use that as an example as that's what she's doing right now. I've done lots of lists on her with all her other quirks and possible traits.

Have you ever taken your lists of quirks to your GP and talked about them?

I had to fight hard to get Dd3 on the radar and it took 3.5 years to get a dx. But i am so glad i pushed because she soo needs it.

Just to add, my Dd3 wears a smile at school even sometimes when she is really struggling. If you are smiling no one asks you if you are ok!!

Detox,

re your comment:-
"She's putting all her toys in order as I type. She's got all her little princesses in a line. All princesses with dark hair are together and so on and so on. Is this just her creativity shining through or just another red flag?"

I would have to say that is another red flag indicator amongst many re your DD.

Your DD does warrant further investigation from a developmental paediatrician and you need to get this process started asap for your sake as well as hers. Children with additional needs who are both quiet and compliant in class are more likely to get missed and thus failed within a classroom setting.

Am I surprised that the school have missed all this - not a bit of it. Many schools do not notice such because they are not trained to recognise such areas of special needs let alone ASD. And now they've got her down as the class clown:(. She is being failed by this school. Please take heed of all the comments here.

Ineed, yes I have taken in lists to my GP, but she said that a lot of what I was describing was just immaturity and something that would simply get better with time and general maturing. This was pretty much everyone elses opinion, but it's gradually changing. My mum, who we live with so she sees dd all the time, is starting to wonder herself, if everything is ok. Until now she would always say that I was being paranoid, dd hasn't mixed enough with other dc's, she'll grow out of it, she's a good kid etc etc. Now, however, she's starting to agree with me more when I talk about my concerns. She doesn't think it's as much of a problem as I do, but I think she'd be more supportive now if/when we do get her assessed. When I first mentioned my concerns to my Nana 18 months or so ago, her answer was "darling, she's hardly backwards." Ok, she's of a different generation and that was a reguarly used word, but come on! Times move on don't they. It's comments like that and comments like my mums a while back, that fill you with confusion, anger, sadness and more confusion.

I will definitely be going back to the doctors in the next few days. I just need to get things right in my head first. At the minute, I just feel so emotional and weak. I know if I was to talk to my GP now, i'd break down the second I started talking about dd. I'm just dreading the battles that i'm going to have to face. I also know that if and when we get a diagnosis, I will then be angry at everyone who told me not to be silly, but even more so angry with myself for not listening and trusting my instincts. Not to mention the rocky road ahead of 'officially' having a child with SN. Sorry, i'm so sad about this. I'm ashamed at how weak I am sometimes.

Hello detox, I just wanted to say that your posts have struck a chord with me. The way you describe your DD sounds similar to my DS, e.g. the episodes of overload - spinning, twirling, bouncing, talking gibberish etc, and being very impulsive/defiant. He also runs off... He once ran away and hid from me in a busy supermarket (when he was 3), and I just couldn't get him to come back - still gives me nightmares!

Yet, in between times he can be the most grown-up, thoughtful, helpful boy and we have lovely conversations about what he's doing and learning. We can't work him out - he is like two different children.

I can really identify with how sad you are feeling. My DS is 5.5 now and he has been referred to a paediatrician for assessment. Our referral came about after the school nurse spent an hour talking to DS and to his teachers. I have had suspicions for such a long time that something was wrong, but I am still shocked someone else has taken it seriously.

Please keep posting and let us know how it goes with the GP. BTW, I have found it helpful to write a page of notes about DS's behaviour so I have everything clear in my head. Otherwise I know I will get emotional or forget things in the appointment. Good luck :)

Oops, sorry, you did say you had already written lists to take to the GP. From what you are describing though, I would expect the GP to take this seriously now and I would really fight for an assessment. Keep us posted :)