i just don't know anymore

[misdee]

someof you may remember the questions marks about dd2 and possible ASD stemming from when she was a toddler to when she was 5 and was told no, def not, it was al linked to her frustrations with her speech. (2 years of intensive salt)

well since then, dd2 was almost 'normal'. she has always been quirky, and i think she always will be.

but lately, and i'd say it was just before she turned 7 (that horrible age for girls IME), she has been sliding again. her speech has got more monotonous, except when reading loud when her tone and expression comes alive. she has no friends, and it doesnt bother her. it bothers me when other dd's tell me dd2 hasnt played with anyone at lunchtime. they have buddy groups, but she just doesnt seek out people.

she is having more toilet accidents again, and we're back to the 'wee wee dance' stage we hit a few years (involves lots of shuffling and bouncing and groaning before going to the loo). she is headbutting things. fortnuatly the soft furnishings and sofa, and not the hard stuff. has been hitting herself.

i jut dont know if this question mark will ever go away.

misdee- i would say if you are going to get it looked into its best to do it now (before she's old enough to refuse to see anyone). She sounds a little bit like dd1, dd1 has Aspergers and was diagnosed at the age of 4, she's now six and doing well at school, dd1 is quirky (a bit different) she has friends but no really close friends (apart from the older ones who mother her), she often plays alone or hangs around with teachers and we had some toileting issues.

What does the school think?

I would talk to your GP again and ask to see a pead, she may not be on the spectrum but it will put your mind at rest. You know her better than anyone and if you feel there is something wrong then you need to make your GP/Pead see this.

You could keep a diary of all her behaviours and even video her (to show the pead).

If you're in any doubt I would go ahead with asking for an assessment.

For some reason 7 seems to be the age when previously hidden difficulties become a lot more obvious. I don't know if it's because behaviours that could've been explained away before are suddenly no longer age-appropriate or because school suddenly steps up a gear, or something else entirely. It was the age when ds1 seemed to stand out more, and now it seems to be ds2's turn.

thank you.

i went to baby clinic with dd4 today and collered my regular HV and asked what age they dealt with, as i wanted a chat about dd2. she sat and we had a chat, and she says it could be something there, but it could just be quirkiness, which is what i've been saying for the last few years. dd2 is quirky, no denying that, and i think we all need a bit in our lives. However as its been eating away at me for a while now, she has suggested to speak to the GP, if they arent forthcoming with a referral, then try and get hold of the school nurse, have a chat with dd2 teacher as well, and go from there.

so looks like we're back on the referral route

feel like i've betrayed dd2 in some way.

misdee- your not betraying her, i felt the same a few weeks ago because i spoke to the hv about my concerns for dd1 (i'm worried she may also have dyspraxia).

Are there any other traits that she has? does she sleep well? Does she like routine? Does she eat well? Did she (or does she) line toys up?

I think you should write a list of any traits you can think of for when you see a pead.

she used to match up all the cups and lids in my cupboard. would spend ages doing it.

she is very 'gangly' when she moves. arms and legs flailing everywhere, and she is very clumsey.

she eats well, but messily. is still more likely to use her hands rather than knife and fork. when she eats finger food, we have to remind her to take a bite and move the food away as otherwise she keeps it there and 'gnaws' at it like a hamster does.

she is never still. she cant seem to sit on a chair. even asleep she is figeting. she sleeps ok, not brillianly, but tends to wake several times a night.

her tone of speech is monotonous. except when reading aloud.

she also still does a low growling noise if you tell her off or ask her to wait a minute. this is normally accompniad by foot shuffling and spinning.

theres loads more, but thats it off the top of my head.

Misdee, I recognise a lot of the behaviours you mention.

My dd is 9 and has AS -she was 7 when we got a referral for her.
I agree that this seems to be the age when difficulties become more apparent. I suspect it could be because the more 'quirky' behaviour can no longer be explained away, as it can be when children are younger.

For example, my dd has always jumped on the spot when she's excited or happy. This wasn't totally uncommon amongst her pre-school friends, but she started to stand out as she got older.

Whether you get a referral is very much an individual decision and can depend on whether your dd is experiencing difficulties as a result of her quirks. However, a dx can help in the future, should she need additional support.
Good luck with everything -I know it can be a very stressful time.

we get foot-hopping when excited or happy. usually results in her falling on her bottom, but its still there.

she also toe-walks a lot. not all the time, but enough for me to notice it.

dd1 does the growling thing when she does'nt get her own way/told no .

dd1 is also very gangly (arms and legs everywhere when she runs) and is slow on her feet.

Dd1 gets bad anxiety, worries about the smallest of things, worries that she will fall down drains or the plug hole .

oh, and no matter how many times i've told her, or how many times i drag her away, she walks on the kerb. and inevitably falls down it and onto the road. am surprised she hsnt been run over yet tbh.

I think it would make alot ofsense to have her assessed,the positive about ASD is that none ofthe assessments are risky- no drugs orhorrid ops,just lots of nice peoplechatting to you and playing (not somuch fun foraprents natch but we're grown ups).

if there's a chance then its better to find out than miss it and regret it later on.

I would say you have enough red flags (and I remember your original threads) to go with, but do you want links to the two ASD kids screening tools?

well, that all starts friday. HV called the surgery and got dd2 an appointment.

dd2 doesnt present in the same was as lisad123 dd1 (they are cousins), but i know that no 2 children are the same.

both my dd's are on the spectrum (dd1 has Aspergers, dd2 has ASD/HFA) they are totally different.

Absolutely right Misdee: all ASD is really is a termmeaning three things are there (possibly four at a future point, sometalk about sensory being included). Apart fromlangauge which is quantified,there is no real criteria for how that allpresents, at what levelthe strength and issues are, and what fills in the gaps around it.

Every time I watch my two ASD boys I see that. They are as unalike as possible, despite the shared DX.

I hope it goes OK for you Misdee. I still remember a post from you the day DS3 was referred, so if there's any info or anything you need just yell. I know Lisa will have plenty, but I do have a few good books and similar I can lend.

thanks. had a v vv quick chat about dd2 with her teacher along the lins of 'any concerns', but aside from her being quieter than normal, none.

i just dont want to push it if its all my imagination.

if i take a moment of her day, and one thing, it can be explained away easily as developmental or because of xyz. all together and i'm worried.

no idea on what i said peachy, i hope it was all good lol.

am feeling a bit down atm, and worried in case i've done the wrong thing by going back down this path, when i've done it before and hoped i would never have to do it again.

all this stuff doesnt bother dd2 btw. it bothers me. she is perfectly happy as she is. am i doing the wrong thing by starting all this?

My dd1 is happy at school, the school say she has no problems and shows very little signs of having Aspergers. Some children with ASD thrive at school as they like the set routine (dd1 loves routine). Dd1 has more problems at home with change of routine, food issues and sleep issues which the school never see's.

You are not doing the wrong thing, its better to sort it now rather than later. Don't beet yourself up about it.

were you abl to get a diagnosis easily if the school reported no problems?

Luckily dd started the diagnosis process before she started school so the school had no say in it, now i am trying to get her checked out for dyspraxia and the school are just saying 'she's fine' even though she is struggling with sport and is very slow on her feet, i need the school nurse to refer her (apparently) before i can get to see the pead. I will be seeing the HV next week so will be pushing for a referral without going through the school.

Dd1 was referred to the pead at the age of 3 because she has so many phobia's, anxiety and hated change in routine, we were told by the pead to expect a dx of Aspergers. In the 1.5 years it took to get her dx a lot of her traits had disapeared (or she had learned to hide them) but other traits are now more obvious (such her anxiety).

dig out your old videos sis, they will ask no end of questions if you geta cdc referral about young ages and too far to remember back. DO keep a diary its helpful no end and just keep going. If your worried, then do something. Whats the worse that could happen? Just be prepared to fight, especially in our area.

Ask school nurse for stengths and idfficulties questionaire for the school and ask them to complete it. You might be surprised what they write if they have to think about it.

DD2 doesnt present like my DD1 your right, but you also know my DD2 is going though the whole thing now and she is a different kettle of fish

call me if you want to chat

we started the process when dd2 was 3, and didnt talk at preschool for 6 weeks. by the time she was seen at CDC she was talking so preschool said they had no concerns about her . so after a griffiths test scored her 2 years ahead in most areas, but delayed in speech and social, 2 years of intensive salt we never saw anyone about it again.

educationally, she is fine. is working well and is good at school. she has scared her teacher several times by falling down the steps, but getting up unhurt.

i dont know if a diagnosis will change anything. or if it just 'label' her.

she does need slightly more help than my other dd's, as she is a bit more impulsive and daft at times. doesnt have much in the way of comman sense. she doesnt understand that i cant get her a drink when i'm dealing with another screaming child, things like that.

she is happy. and secure in being the way she is, and we love her regardless. am worried doing this will change things.

I would say getting a dx for dd1 has not made a lot of difference, dd1 doesn't really understand that she has AS but has started asking questions about her sister (asd). I am please that we got a dx though as i know as she gets older she may have other problems/traits and i would like to be able to explain to her why she's different.

Dd1 has no speech problems and scored high when tested by SALT (her score was that of a 12 year old). She's also 2 years ahead at school (reading and maths age of a 7-8 year old) but her main problems are with the social side of things. She likes people to play by rules and if they are broken she gets very upset.

Dd1 seems happy at school, sometimes she gets upset because she is slow on her feet and takes longer to eat her lunch but she enjoys school.

Dd2 was a lot easier to diagnose as she has sensory traits, very poor speech (was non-verbal a few months ago) and doesn't respond to others (she does now), dd2 is also very bright and loves numbers and letters. Dd2 will need a lot more help at school (full time 1:1) when she starts in sept. Basicly she is the opposite of her sister apart from them both being good with numbers.

My DD was dxd at 4yo, but it didn't become a HUGE issue until she was 7yo and went up into Y3 (Juniors). That's the point at which the other girls...stepped forwards?...in their peer friendships and social skills. And she didn't. She's JUST starting to make THAT jump now, at 11.10yo! Meanwhile, her peer group have jumped forwards and are getting boyfriends, going to town in groups etc. She is mentally (in socialisation respects) at 7yo. It's awful, and TBH, I found that was also the age when she realised herself that she 'wasn't quite the same' as everyone else. And she became quite isolated as her peers were chatting/ playing in a way that she's only just beginning to understand now. I hope you get somewhere with a dx, as it can (in a good school) help them to try harder to 'integrate' your DD. (my DD's school didn't, but her primary isn't a good school...)

And also, thinking back, that's when her complete lack of organisational skills became more apparent, as from Y3, they are supposed to be a lot more self-sufficient with things like deadlines for homework, remembering to change their own books etc, coping with a lot more structure to their day. And she didn't.

And DS2 presented in a fairly different way from DD. Although the early signs were the same, he was people-phobic unlike DD, who would(and does still) talk to anyone without any thoughts as to safety. DS2 is less likely to scream and throw things (as DD does) when having a meltdown, rather he hides under tables and cries silently?! Neither can cope with routine change, DD completely just doesn't get rules and conventions, they don't exist in her world! Whereas DS2 thinks the world is going to explode if someone runs in the corridor (or any breach of the rules) at school and goes mental! It makes for some interesting times when DD doesn't grasp the concept of rules, and DS2 lives for & by them....

I hear you Misdee. Going through assessments is not a neutral/objective process. What's the worst that can happen? Well, it can change your family for ever. I may be with you in a few years as I've declined dx for DS2 (4.4). I think the SALT and paed. realised it was the right thing to do for our family at the time but told me I might come back when he's about 7 - your stage.