Negative association / over reaction?

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Today's meeting with her teacher was very interesting. First of all she went over her upcoming SAT tests and she said her reading and writing is well above average and she expected her to get top marks for those but her maths is below average so she didn't think she'd do too well. She then brought up the problem of my daughter not listening properly, that sometimes she will instruct the class to do something but then my daughter will go off and do something either completely different or add things that she shouldn't, particularly with writing she always has to add fantasy elements to it; fairies, castles, unicorns etc even if it's just a story about pancake day. When I told her that my daughter keeps saying she doesn't always hear the instructions because of the noise or lights are making her feel 'dizzy' the teacher straight away said "oh so she's having a little bit of sensory overload, that explains alot".

She then talked about how my daughter sometimes needs questions explained to her, they had a mock SAT test last week and she sat next to my daughter the whole time because she knew she might have problems. Every few questions my daughter would read it and not understand what was expected of her, when the teacher explained it in a different way she knew it and got the answers right.

I noticed in alot of her workbooks she's getting bad marks for not explaining things properly or misunderstanding the questions. For example on one maths problem they had 6 flowers and the question was "How many flowers are there?" she got the answer right and same with the next 4 questions then the next page said to cross out the numbers (it was relating to the numbers on that page) so she went back and crossed out her answers, the teacher of course assumed that she thought all her answers were wrong and had crossed them out and not put any other numbers so she didn't get any marks for that just a big question mark and a note asking why she hadn't done it properly.

The teacher has put her in an extra maths class on a Wednesday afternoon, she said she knows she has the ability to do it and she's confident she could get above average in maths but it's the terminology(subtraction, take away, higher, lower etc) and the wording of the questions she seems to be struggling with the most. The teacher is going to try her best to double check with my daughter that she understands the work before she goes off to do it but she did say she may not always have time for that so if we can just remind her to check with her classmates or come and ask if she's not sure so that hopefully we can get on top of her misunderstanding things.

Another issue I had was that my daughter said she wasn't always allowed to use visual tools to help her with maths like the number strings, cubes etc etc. When I asked the teacher about that she said they were allowed to use whatever they wanted, unless they were doing specific work that they were not supposed to use tools with. My daughter had specifically said it was her other teacher who refused to let her use things(she used to have Miss L Mon-Wed and Mrs W Thur/Fri, Mrs W is teaching another class now so it's just Miss L) she did say she wasn't sure about the other teacher but she herself did not mind the children using whatever means necassary to understand and complete their work. We then had a discussion about my daughter retaining memories like that and that if she's told she can't use something one time then she will think that she's not allowed to use it any other time, so again the teacher will re-assure her that she can use it another time just not that particualr time and she'll explain why.

Have to say I'm really pleased with her teacher, she seems to understand what sets her off, how she will react to things etc etc and is trying as best she can to work around it. I'm also glad the other teacher is gone she was a horrible woman who my daughter hated and she used to dread Thurs/ Fri but now she doens't mine because she has Miss L all the time. We're supposed to be going in to see her again in a month or so just to see how she's getting on and talk a bit more (today was parent consultations so she was short on time).

We also had a very positive evening at the hospital yesterday visting granny, partly because of the smurfs game (dreading sunday when she has to give that back) and partly because it was the last time as granny went home this morning. She was very at ease laughing and joking and telling granny about her day, then she remembered the blood incident. She told her dad off and asked him why he said what he did, he tried to explain that it was a joke and then she got her serious face on about how that is not a joke, not funny at all and don't ever do it again. Then she went back to her game, granny didn't have her cannula either so my daughter was completely relaxed and then she started to get "silly" as we call it when she gets hyper and starts jumping about and spinning and dancing etc etc and at that point we decided to leave. She was skipping all the way along the corridors pointing at things and saying stuff like ooooh look at that. Then we went past one of those electric trolley things a bit like this;



and she squealed and said "look at that mummy it's an electric tug, don't go near it or you might get electrocuted, see the sign up there, it says warning be careful of electic tugs so don't go near it okay" I said okay and she repeated that it was dangerous don't go near it, pointed at the sign again and said see it says there not to, she did this a further 3 times before I said we had to go (we'd stopped next to it). I explained to her that the sign was warning you to be careful incase someone is driving one along the corridor but no one was driving that one so it was okay. She still insisted that we had to be careful and she then did her TV police walk checking around corners to make sure no tugs were coming before she'd shout "okay it's clear you can go". Every corner we came to in the halls she'd hold her hand up to make us stop, use 2 fingers to signal she'd be looking around the corner(hard to expain what I mean but like a TV detective would) and then she'd shout clear etc etc. It was so funny to watch, I love it when she's like that because we have so much fun and she makes us laugh so much.

momsparky - Sometimes I wish I didn't have AS (or the traits anyway, I'm not officially diagnosed yet), you know times when I can't socialise at all, when I can't stand going to certian places because of the smell and noise etc etc. But then alot of the time I'm actually quite glad I am the way I am because it enables me to help and understand my daughter so much.

Sometimes she will say something or do something that seems so strange and my husband will either ask me what she's on about or give me the puzzled look and mouthe 'WTF?' and 90% of the time I can explain her thought process and how she came to that point...particularly when it comes to meltdowns. Like the inicident with the magazine and the doll, he couldn't understand why she was so upset but I sort of knew and whilst she was crying and slightly hyperventilating I calmly asked her some questions to figure out what was wrong, she wasn't able to speak but could nod or shake her head.

Or like when I explained to her Teacher that if my daughter is not allowed to do something one time but will be allowed to do it again she needs to explain that to her or she will focus on being told she can't do it and will convince herself that she will never be allowed to do it again. So when she is told she can do it she may get upset or arguementative because she'd previously been told she can't, you have to make things very clear to her.

I've become fairly good at preventing full blown meltdowns, example we all sat down yesterday evening to do her homework, it was about shapes, so there were images and at the top were examples of shapes like a cuboid, cone, sphere etc. So whilst my husband made himself a cup of coffee I began with her and I told her to just start with the ones she thought she knew, so the image of the football she said was a sphere, the image of a gift she said was a cube, image of a mountain a pyramid. Then my husband came in and saw what she'd written and told her off for her bad handwriting and made her rub it out and write it again neatly. We continued and then when she got to the last section and was writing 'triangular prism' he told her to do it again because she'd started writing triangular too large and it wans't going to fit on, then when she was writing prism the tail of the p was over the line not under it. At that point I was basically getting really ticked off with my husband becuase he was being so picky so I told him it didn't really matter this was not writing homework, as long as she got the answers right I don't think the teacher would mind if her writing wasn't perfect. He disagreed and ranted about how she needed to get her writing right now and the more she practised the better. So we carried on and he kept telling her she was writing incorrectly and made her do it again, I could see her getting worked up(she has a slight stim in which she either twirls her hand or twirls her hair around her finger when she's anxious) and she looked at me after he did it again and I just shrugged and rolled my eyes and she smiled, we both just knew my husband was having one of his moments when everything has to be right (he has alot of aspie traits, which usually compliment me and my daughter but sometimes sets us off). So she actually said to him daddy your being picky and mean stop it, so then he got in a big huff about that, we finished the homework, she ran off he shouted at her to come back and explain why she was being moody. So I intervened and said she just needed a few minutes to wind down becuase she was so worked up, I asked her if that was right she just nodded and then ran off. She was face down on her pillow when I went in to check on her, took her about 5 minutes to snap out of it and then she was fine and we all played together writing riddles.

If I hadn't explained he would have kept pushing her to explain why she was being moody and naughty etc etc which would have made things worse and she would have had a big meltdown. Same with the homework if I hadn't of been there she'd have gotten more and more worked up until she blew, but I helped her by reassuring her that daddy was being silly which gave her the confidence to tell him to stop. I also helped her by reminding her to keep her letters small and spelling out the words for her so she didn't have to keep stopping to check how to spell them. That's the short version, we all had a big discussion on how the wording of the homework was mis-leading, my daughter and I have similar problems with misunderstanding the wording of things, luckily my husband does not have that problem. So when we were sat laughing our heads off trying to work out why there was such a thing as a triangular pyramid and square based pyramid when they both look like triangles he was trying to seriously explain to us that one had a square bottom the other a traingle bottom but we were hysterically laughing because it sounded so ridiculous...typing it out it doesn't really seem that funny but we were in tears laughing at the time because it seemed so silly.

Or sometimes we'll be in the car and we may be talking about one thing and my daughter will say something that seems unrelated but because my brain works the same speed/same way as hers I can 'see' how she came to that point and then I can explain to my husband/mother in law/whoever what she's talking about and why.

It also enables me to pander to her obsessions and dream up ideas and new games around them, last year she was obsessed with meerkats. She loved them so much, we used to go to the zoo and she would watch them for ages, pretend to be a meerkat(her favourite game), collected meerkat teddies etc etc. Her birthday was coming up and I knew what would make it amazing for her; some sort of meerkat interaction. So I looked around and managed to find an exotic animal rescue centre type place who also do parties, school events etc etc. So on her birthday her and her friends got to hold snakes, lizards and she got to hold a meerkat, I've never seen her so happy and speechless. We didn't tell her what she was having at her party just that it was extra special, when she saw them bring in the reptiles she was smiling and then they brought in a pet carrier and she wasn't sure what was inside, when they told her her face went like this for about 10 minutes and then she jumped up and down squealing. She got herself so excited when she was holding one that she almost wet herself (she had to run off to the toilet as soon as she passed it back to the handler).

Her current obsessions are monster high and teddy bears (well that's been a lifelong one) so I'm organising a build a bear party with monster high decorations, plates, cake etc etc (this has become a mini obsession for me and I'm checking prices and finding supplies for hours on end). I think up new things to do, like our currently most played games are monster high sweet 1600 dance (but the majority of the time we have to put the dolls into groups,fix their hair, make sure all the accessories are with the right people ready for when we actually play, ). The other is teddy bear fashion show in which we line up all the teddy bears ready to go down the catwalk (except we call it a teddy walk), we build a little stage out of cardboard boxes, get lots of lamps and fibre optic lights etc as the stage lights,put some music on and get them all dressed and have about 5 minutes of actually playing the game but we both enjoy the preparation of it all.

Eureka - Thankfully the enevlope thing has gone from her mind but thanks for the suggestion. I think the smurfs helped as the more she's played on that the less she's been so focused on other things. Although I'm sure tomorrow when I give her one she will remind me that I forgot to give her one the day before and that I need to give her one the next day like last week. I'm not sure if the verbal explanation is getting lost, she retains information, memories etc etc very well and is obsessed with things being fair and the same so I think it relates more to the fact that she had them on those 2 days and so it SHOULD be the same the next week and so on.

It's like rules, she doesn't quite grasp that rules can be bent or changed, she doesn't think in a very flexible way and will get annoyed....unless it suits her,i.e... if it's something that benefits her in some way. Example taking her granny into hospital last Friday for her op, we all had to get up a little earlier then usual, she couldn't sit and take her time eating her breakfast either and by the time we were dropping her granny off she was in a foul mood because her routine had been interrupted and it wasn't in any way that benefited her. Now a few weeks ago when we were all up super early and rushing around for HER appointment she didn't mind so much becuase she was going to build a bear after the hospital, so even though it was bad that her routine was messed up in her mind that was okay because at the end of it all was a really good thing which is part of her obsessive interest, I don't even know if I'm explaining this right so I'll just stop here.

You should look up auditory processing disorder. A lot of kids with ASD have this....I have an NT with auditory and sensory processing disorder but then again ASD is very genetic in my family so her having a "part" is not that odd. They have these little ear plugs, looks a bit like a hearing aide, and then the teacher wears a little microphone. It makes it easier for the child to hear the teacher. There was a little girl in the program in Cali where I used to take my kids who had one of these. Her Mother said her daughter missed more than half of what was going on in school even where there was no noise but the lights and even an occasional pencil falling of the floor.

I'm not sure if it's auditory processing disorder as the list of characteristics doesn't sound like her at all. She doesn't have low academic performance, quite the opposite (except maths but the teacher thinks it's the terminology causing problems), she doesn't have behavioural problems, she doesn't have any language problems and is well above average for reading, writing, etc.

When she says the noise makes her feel dizzy I know what she means because say I'm in a waiting room with only 2/3 other people then I'm okay and can usually pick out their conversations. If there are lots of people and they are all talking it just becomes one big hum and I feel so overwhelmed and slightly sick and I go into a sort of trance to block it out (I usually stare at the wall or posters and really concentrate on whatever I'm looking at, sometimes I count the ceiling tiles) I can't have a proper conversation myself in that kind of situation and I don't know about as a child but as an adult I would probably have a little trouble keeping up if someone was trying to instruct me with that kind of noise.

Having said that, whether she does or does not have APD the treatment / help would probably work for her so when I see her teacher next I'll ask if they have anything like that available at her school. Thanks for the information

Little update as we've had her results and I'm a little worried about what's going to happen. Basically both her kidneys are damaged but her left one is very bad, she basically has 1 and a half kidneys. Anyway the doc said she needs to have another type of scan to see exactly what's happening in there live, rather then a static image, plus depending on the outcome she may need a few operations. So that means in a few weeks time another cannula, more radioactive stuff and one very bad situation again. I'm really nervous about it and how she's going to react, she was okay going to see the doc because I'd explained to her that he would not be doing anything to her just talking to us, she kept asking and I kept telling her he would just talk, she was nervous but okay. As soon as he started talking about scans and operations she gripped her teddy close to her face and started to rock a little on the chair and I knew she was getting upset. I just know we are going to have another hysterical, traumatic day and it's upsetting me that there's nothing I can do about it. I wish I could make her understand that it's a little bit of pain (although she will have numbing cream and gas so should be too out of it to notice) and then lots of good stuff (watching a dvd during the scan, toys, junk food) and ultimately that this has to be done to find out what's wrong with her.

I still haven't heard anything from the children's mental health team, my husband says it's not worth chasing up because what can they do? But still maybe there is something however small they could do to help her in some way because I really don't know what else I can do. The only thing I can do is make sure it's not that same nuclear nurse again. Hopefully that will keep the upset to a minimum. She's pleased she'll be seeing the play specialist again but apart from that she will not talk about it, if you try she walks away or covers her ears or tells you to stop and starts crying.

It's the same with her swimming lessons, she didn't want to jump in the pool one time the coach made her jump in which caused a meltdown that evening when she got home. My husband told the coach not to force her to jump in and explained how upset she'd got but the damage was done. When it got to that part of the lesson and the other kids were doing it she got herself so worked up and convinced herself she'd HAVE to do it that she became hysterical and my husband had to go and get her out. She refuses to go back and won't talk about it, I said we'd get a different coach, a different pool, wait until next term, whatever she needed to get over it but she just says she's scared (she says that about anything she feels she can't do or that upsets her in a way she can't explain). The coach called me up at the weekend asking if there was anything she could do, she could have one on one lessons, she could use any equipment she wanted, they would do everything at her pace the coach just doesn't want her to give up and lose her ability.

I think it's all related and what I was trying to say in my first post about focusing on all the negative and convincing herself that it will be exactly like that no matter how many positives there are she will always pull the negative to the forefront of her mind.

Any advice would be helpful because I really don't know what else to do or say to help her through this. Plus because she is not yet diagnosed with AS I can't tell anyone that she's reacting in such a way because she may have AS (so the sensory issues etc make things 100 times worse).

I think, prepare her as much as humanly possible for as much as you can, and let her know to TELL you when something is different or not what she expects. If you aren't going to be in the room, designate somebody who is as the person to TELL, and ask that person to explain exactly, step-by-step, what's going on.

FWIW - we had the same experience in the pool, things were going great with DS and then once he and DH were horsing around and he got water up his nose. Constant meltdowns for quite a while over water.

Eventually, he did get over it with some really kind and patient swimming teachers, and he's at the top level of swimming classes now. I don't think they used any special techniques, they just let him go at his own veeerrryyy sloooow pace.

It's difficult preparing her at the moment because she refuses to talk about it, if we try and bring it up she just walks away or asks us not to talk about it or she'll cover her ears. I'm getting around that a little by sneakily dropping it into the conversation, like we were playing with her monster high dolls yesterday and I said "oh we could take some of these to show the play specialist couldn't we?, I bet she'll love them". She loved that idea and spent about 10 minutes deciding which ones to take, then I asked if she was looking forward to the gas again as she liked the gas and she just shrugged and then made her upset/angry/frustrated noise and said "can we not talk about this please it upsets me".

She has no problems telling us when she doesn't want something, she will quite happily tell anyone when she's not happy about something, hence alot of the screaming and telling the nurses to get away from her last time.

I think I'm just at a loss as to what else to do as they explained everything to her step by step, every last little thing they did they told her what they were going to do and why before they did it and didn't do it unless she was okay with it (apart from the nuclear nurse). She did say to her dad in the car yesterday that she doesn't want the same nuclear nurse again but I was going to request that anyway.

I don't think there is much else that can be done really, I'm desperately trying to think of ways to avoid the same outcome but it's inevitable really and if it wasn't so serious I'd ask them to put it off for a while.

I think there is only so much you can do.

You might try creating a stick-figure social story series that she can look at in her own time, but the truth is sometimes kids get upset and there's nothing we can do about it.

One other thing: we've discovered that "bribery" is a big help for my son, as it gives him something else to focus on: it doesn't make the thing less hard, but it does soften the memory of the bad thing a bit. A toy she's always wanted, a trip somewhere, something...

I never thought of making a story for her, I'll make a quick comic strip using photoshop and monster high characters, thanks for the idea.

We always use bribery in situations like this, although I don't see it as bribery, more balancing out the negative with a positive. The first time she had the injection when they botched it we went to build a bear afterwards, she got a teddy and a few outfits she loved it. We kept reminding her that it was kind of worth that bit of pain for the great build a bear experience and at the time she agreed.

After the second injection she wanted to go to build a bear again so we were ready to go, I tried to get her to calm down and focus on that, even the nurses tried saying that the quicker they got the cannula out the quicker she could go get herself a bear. At one point I said she could get 2 bears and 2 outfits if she let them take it out after the count of 3, we got to 2 and she screamed no and to stop.

We have talked about what she wants and she said she wants the monster high doll she hasn't got yet, so we ordered that the same day and it arrived yesterday. I'm also ordering her the Michael Jackson wii game (another obsession of hers) so she can have the doll before we go and the game when we get home.