Maybe ASD, maybe ADHD, maybe nothing, maybe something Aaargh!!!!!

[geeandfeesmum]

Ok, this is my first time posting on here so please bear with me. DD has always been different. DH and I have always said that she's not normal ( oh god that sounds awful). Her behaviour has always been wild. She jumps and climbs and throws things. She doesn't really sleep. Maybe slept 2 nights in her own bed all night. She does weird things like eating soap and putting things on her head or in her hair. From when she was born, she has always been extremely clingy to me. She cried for the first eleven months constantly unless I was holding her, day and night. Of course that was fun for the relatives that looked after her when I went back to work. After she stopped having milk she seemed to cry less. She never really liked it anyway and was often sick after it. She is still clingy though and follows me everywhere I go. She can cope at the relatives houses that she is at regularly during the day and she is at preschool as well. I don't take her to the preschool so that might help her with that.

We took her to A & E when she appeared to have a reaction to the antibiotics she was taking. I'm still not entirely sure that it wasn't a tantrum although what it was about I still don't know. The doctor we saw obviously had concerns as he asked a lot of questions about her behaviour and her speech etc. Whilst we were the tantrums finished and she was going crazy trying to run up the halls of the ward, we wouldn't let her so she had another tantrum and was throwing herself on to the furniture etc. The doctor reffered us to the paediatrician. The paediatrician mentioned ADHD on the first visit but she wouldnt be willing diagnose that as she is so young (3.2 at the time, 3.8 now). She also prescribed Melatonin for her sleep issues, but I've been reluctant to use it as yet. On the follow up visit she mentioned ASD and gave me some websites to check out. She also said she would like to arrange a multi agency meeting to discuss it but I'm not sure what that means.

I mentioned the comment about ASD to her Early Years teacher and she said it has crossed her mind as well. She wants to arrange Statutory Assessment and hopes that the EP will suggest it after preschool visit but I haven't heard anything from her at all. Her preschool are concerned about her and feel she will need extra support in school. At her parents evening they basically begged me not to send her to special school. I hadn't even thought of it as an option. They also suggested deferring her from school for a year. She will be a very young 4 when she starts school in September. But then her preschool teacher seems keen to downplay her issues as well as they "don't want her to be labelled". I just want her to get the help she needs.

I feel kind of odd about the whole thing as well. ADHD has been on my mind since day 1ish. But, ASD, well that?s something new to me. I have read up on it and I'm still a little unclear as to where she fits in.

She has no issues at all with eye contact, certainly not with myself or people she knows. I'm not sure where she stands with that with people she doesn't know.

Her imaginative play is very good indeed. She plays with dolls all the time, almost exclusively, she occasionally uses toothbrushes as doll substitutes (I can't tell you how many times we have had to by new toothbrushes. It is at least once a week lol).

She loves to dress up. She pretends to drink from a toy cup after pouring pretend tea. The other day, she lapped up her drink as if from a bowl on the floor and then she came over and said "woo Woo" which is Woof Woof.

She still doesn't really play with other children. She prefers to do her own thing and will usually push other kids away if they try to join in. She has played alongside one child in the same area at preschool, but the child is apparently extremely patient with DD and if DD wants something she has, she gives it to her and if DD wants her to go away she does.

She still kicks, bites, punches people. She also kisses random strangers.

She has regular tantrums if things don?t go the way she wants. She still doesn?t seem to be able to sit still for long although, she did recently let me read a short book to her when I added interactive bits into it.

She can match colours and can point as if to count but doesn?t say the colours or numbers.

She is still very clingy towards me and it took a while to get her settled at preschool. Once she had attached herself to a certain teacher she got better with it. I don?t take her to preschool, my family do, so I?m not sure if she would be ok with me leaving her. Once we get to preschool to pick her up she just attaches herself to me the whole time.

She still has sleep issues. She will sometimes fall asleep at around 8ish though which is an improvement. Even now, she still wakes up and gets into our bed. I have tried the usual sleep tactics. A few nights ago, I attempted to keep putting her back in her own bed each time. I lost count after 150. She thought it was a game. It went on from 11pm-1:30am. I eventually fell aseep in her room and she did too. At 4:15 she came into our room. I would have tried the same again but we had to be up at 6am so by the time she would have gone to sleep we would have been up.

She is still not potty trained. I have tried leaving her with nothing on, but she just holds it all day and then if she falls asleep, either at night or for a nap I will put a nappy (diaper) on her and she will do her business. She is quite happy to sit on the potty or the toilet but nothing ever happens. I don?t think she really gets the point although I have tried to explain it to her she doesn?t understand.

Anyway, I still don?t really know where we are. Clearly, she has issues. Clearly, she will need help at school. We are not currently sure why or what is the issue. We are not currently sure of the best course of action.

I?ve been reading up so much about ASD lately that I feel like I?m going crazy. On the one hand, it really does sound like DD. On the other hand, it sounds nothing like her. DD has always had great eye contact. She has always been fine with imaginative play. Although, she didn?t used to hug anyone but me, unless she instigated it. She now accepts hugs and kisses from others. She will bring toys to people. I have known her to point at things although it is rare. Her speech is improving as well. But then, there is something that is just not quite right about her. She does do weird things like putting stuff on her head, going cross eyed all the time, having meltdowns, really struggling with being separated from me. Her speech is still markedly behind. And there is just no way she will cope with school. Having said that, I?m shocked with how she copes with preschool but then again they work with her a lot. And they give her a lot of leeway on things. Her preschool teacher said that the other children are very patient with DD and that helps.

That just won?t happen at school. I almost wish they hadn?t mentioned ASD at all, then I wouldn?t be sort of pinning my ?hopes? on that, if it isn?t that at all. Is it that? Is it something else? Is it nothing? I really need to know soon otherwise I?m just gonna crack up!!

I don?t even really know how I feel about it all. I think on the one hand if she was diagnosed with ASD and/or ADHD it would be awful because of the obvious reasons but then I think I would feel relieved that it?s not just that I am a hopeless parent with no clue how to teach a child the basics and no clue how to discipline bad behaviour.

I guess I just wanted to talk it through with people who are not involved but may know from their own experiences some of the issues we are facing. Sorry this is so long and disjointed I am just getting it all out of my head.

Dd3 also appears to play imaginitivly[sp] but when you actually listen over a period of time she is reinacting situations she has been in of things off the telly.

Great advice from ellen about keeping language simple, I sound like a sargeant[sp] major barking instructions at Dd3, but she gets lost in wooly language and ends up doing nothing.

Something wrong with my spelling tonight, am eating an ice lolly and cant type.LOL..

No its ear plugs you need and an iron wiil, a headscarf won't help you sadly.

Hanan book will be ideal, then. Also, to give choices, give her pictures of the options, let her point or touch. You say the words for her. If it's a drink give her the picture choices (or have the actual cartons if she can't manage the pictures) Say "DD (her name first to get her attention) orange juice or milk?"
Hopefully she will indicate a choice. You say "I want milk." Use the language she should be using, eg "I" and keep it simple so she doesn't think milk is a "please" etc. Then give her the milk. Repeat "Milk, I want milk."

That's sound I will try that. Her Early Years Teacher said that she prob can't grasp the concept with pictures yet and to try using actual b
objects. The example she used was that she prob wouldn't understand that a picture of a bed would mean time for bed but if I put a doll to bed then she might learn that's what she does. As it goes all it did is tach her to put her dolls to bed but hey ho. I'll give it a try with juice or water tho. She doesn't really do milk and when she does it gives her bellyache and horrible poo.

Ha ha! Just an example! My DS (11) only likes apple juice and coke!

But start off with the physical (concrete) objects, choice of her toys as well. Then once that's established you could try (slightly more abstract) photos of her toys or photos of your juice carton, then if she starts to get that you could try a picture of her bed (rather than a symbol of an even more abstract generic bed) for bedtime, or your local park etc. Small steps, gradually. I bet she'll come on. [busmile]

Ooh, I am going to get started on that right away. Thanks so much!!

And get the book! Hanen 'More than Words' from Winslow. It's about £35 but so worth it. (I'm not on commission [bugrin] )

EllenJane1 is right, use photos of your DD's bed, table, chairs, items she will recognise and know and then when trying to re-inforce what you want her to do use the photos. get a cheap laminator and some blu-tac. You could have a 'now / next' sheet that you stick the photos onto on the wall. Have some in the dining room, bedroom, bathroom, wherever you think she needs help. It will take time but hopefully this will start to help your DD's understanding of what you are asking her to do. My DS's speech is coming on, but he still has some difficulty with his receptive language so we use these, and he's still getting to grips with them, but sometimes we get a breakthrough.

geeandfee there's nothing to stop you applying for a place in the other school based on your daughters current needs. The current school could back this up with their concerns. However, you would have a much better chance of getting a place if she was SEN. Stick around here, there's always a good ear and great, practical advise. Good luck

Well, she is SEN based on her S&L anyway. I've been wagging her a lot lately and especially her imaginative play. She seems to always wrap the dolls up in something or wrap string around them and then get another one to unravel that one. I've noticed her wrap things around herself as well. Is that what you mean? On the plus side her speech seems to be improving she pointed to a star on one of her toys and said night night and then pointed to a sun and said good morning but I'm not sure anyone else would understand it.

Watching not wagging. Stupid phone!!

do get your paed to initiate a multi-discip asessment - it will give more evidence for stat assessment, and hopefully get her bumped up the waiting list for slt too. and call the lea and ask to speak to the area early years inclusion co-ordinator, and ask them if they have knowledge of dd and how she will be catered for in school/ whether the inco will be involved for transition planning.

we used makaton rather than pictures with dd2, but often the actual method is a bit trial and error - she's clearly capable of making the link between pictures and actions, (the sun and starts thing) so i wouldn't bother with restricting choices to concrete objects, just go with the laminated sheets and you're off.

Thanks for the advice so far. The EP is off until next week so I think I'm just gonna have to wait until I see the Early Years Teacher next week. She said to mention statutory assessment to the EP because she could get the ball rolling before the Early Years Teacher was back at work. Since she's not going to be, the early years teacher said she can arrange for it.

DD has seemed "normal" this weekend. Which kind of highlights to me how "not normal" she can b. We've had tantrums but for her they were fairly mild and short-lived. One thing we have noticed from writing the diary is that she hardly had any dairy all weekend. Yesterday she was back at the inlaws and was drinking milk and eating yogurts and was definitely acting more wired and spent ages switching the lights on and off so much so that I thought she was going to fuse them!! She also seems better when outside as well, although she has a tendency to strip off. We were in the garden most of the weekend. I'm wondering if these could make a difference or not if it was either a speech and language issue or something more. I'm avoiding google at the minute since it just makes me more confused. Would these behaviour patterns happen with a speech delay?

Oh the sun and the star were objects not pictures btw.

behaviour can be linked to speech through frustration - just a different way to communicate (often in undesirable ways ) but difficult to say. there can of course be links between food and behaviour as well. there are a few posters on here who do know a lot about it... i'm just toying with the idea of dietary changes.

it would be interesting to keep a diary (inc food) to see if there appear to be links. it isn't recommended to withdraw specific foods without specific advice, but it would be interesting to see if you could find some links to discuss?

Thanks, yes I have been doing a food and behaviour and sleep diary for about 2 weeks now. Not sure if we will find anything out by doing it or not but it's worth a try.

Just go ahead and request a statutory assessment. Then speak to the EP, teacher etc. It takes 6 weeks to get a decision on whether or not the LA want to assess anyway, so you might as well get some of that waiting out of the way now... which will take you up to the middle of the summer term.

Ideally you want the assessment to take place just after half term while she's in her familiar preschool environment (so no-one can say, well she's just settling into school, let's wait and see shall we?). The LEA have the summer hols to write the report, if she gets a statement you name the school you like best so she gets the education and help she needs. And voila, your other dc also gets first refusal on any place arising there too, cos of sibling preference.

Do you think it would be worth writing to the school we would prefer to go to? We didn't apply there in the first place because we didn't know about it. If so, do you think we should just stick to mentioning the speech and language stuff or do you think it's worth mentioning the stuff about ASD as well?

Geeandfeesmum, it's getting pretty late in the year to get a statement sorted before Sept. They normally take 6 months, by which time your DD (and DS) would have already started school. So I'd get cracking. You can request statutory assessment, as I think someone has already said. Go and see the schools you are interested in, find out if they are suitable, you'll get a good feeling from the SENCo. Be upfront about your DD's needs. Ask each one about deferring a year. It seems to be a really good idea. Once you get a statement, deferring a year shouldn't be a problem. She doesn't legally need to go to school until next Spring term as she has an August birthday, but you wouldn't want her to start reception already 2 terms behind. Starting reception next Sept is a much better option. Talk to the nursery, find out who to speak to in the LA. Is it Early Years Inclusion in your LA?

as i said on weds at 06.48 - call the lea and speak to the early years inclusion officer (or whatever the title is in your area. just say early years sn to the switchboard).

too late for statement by september, really, but if you speak to the lea they can get the inco to do an in-setting visit for her current setting and advise. i'm assuming with her communication difficulties she has some 1-1 for that anyway, so in theory the lea should be aware. the inco will also be able to advise (once she has had been in) whether SA is appropriate. you can apply for SA yourself, but tbh it is much easier if you have the backing of the setting. and the inco should know whether you have a chance of getting a specialist setting. ime specialist settings will not discuss availability of places or likelihood of getting a place without lea advice (ie sa).

ask your current setting's senco for copies of the ieps that they are using, (these should be smart targets with input from specialists ie slt), and she should already be listed as school action plus as she has inout (or requires input) from external professionals.

you need to start keeping the ieps etc in a folder (along with copies of all assessment reports esp slt) so that you can start building up an evidence base for sa. without having this evidence there is little point in attempting an sa application without the backing of the setting and lea.

and call your paed's secretary and ask for a cancellation appointment to request multi-discip assessment.

it is really pointless to be attempting to get a specialist placement, or statement, without having these assessments in place. you need the evidence. even for sa, there would have to be a number of assessments, which might end up in a dx and label in any case. it's often very difficult to get the support needed with a label and dx...

you will get used to the fact that you will be the one doing the leg work btw. professionals are too busy trying to focus on their enormous caseload to be able to prioritise your child, so you become the one trying to bump them to the top of the list.

don't write to the school. get on the phone to the lea and your paed and start pushing for some action. the more intervention in the early years, the better chance of outcome.

sorry if i sound a bit harsh - it's really difficult to know where to start, but usually, once you have made the first 4 or 5 phone calls (and been passed through to other agencies) you become quite adept at working the system. the sooner you start talking to people and pushing for assessments in all areas, the better.

you should still carry on with the hanen etc, but you need to start getting other people to do their jobs. particularly if you want to get school sorted. these things take time. impossible for anything in the sn world to happen overnight.

Thank you both for the advice. The Early Years Support Teacher is the one who suggested Statutory Assessment to me. She said it wold be best to get the EP to start it as otherwise the EYST wouldn't be able to get it started until she is back after the Easter break. As it goes the EP is off on annual leave until next week anyway!! So I guess I can get the ball rolling and then the EYST can step in and add anything necessary when I see her next. The paediatrician is also on annual leave u til next week, but I will ask her to set something up asap. The preschool have never shown me anything like an IEP to my knowledge although I'm not sure what it looks like.

I spoke to her preschool teacher today. She said that DD had had a good day at preschool but they were in the garden mist of the afternoon and she was free to do her own thing. In contrast, she was really bad at our relatives today. She pulled down the curtains and was having tantrums and head butting the wall.

Her pre school teacher mentioned the EP visit as well. She said that while the EP was there that DD was completely non verbal, playing by herself with the sand. The EP spoke to her and DD acknowledged but didn't really bother with her. She said DD was really good though and didn't throw any tantrums or take any toys off the other children. I really can't tell if the preschool teacher is trying play down her issues and sort of justify the way she acts to avoid a label or if she is trying to spare our feelings about it all.

I am so confuse about the whole thing. I really didn't know where to start getting her the help I need and although some of the professionals have been very good, others seems reluctant to admit there is an issue. Maybe they think that the issue is purely down to her speech.

I have been worried about her behaviour since long before she was ever expected to be talking. Then her speech was delayed and it caught everyones attention then her behaviour was noticed as well. I can't see her improving dramatically when she can talk if she had behaviour concerns long before she had speech delay. But then I don't know that much about all this stuff.

I just wanted to say thanks for setting me on the right path with regards to what I need to be doing to get her the help she needs and also help her as much as I possibly can at home.

ask the pre-school senco about her ieps as well, then. at her age they should be reviewed and new targets set every single term (and you should be invited to termly iep meetings to review and update). this changes to six-monthly at 5yo. asking them for copies of the iep will also let them know that you are on the ball and expecting them to do their job .

it's just a matter of turning the temperature up a bit. at the mo you've got them all on a nice low simmer. you just need to bring them to the boil.

Okay, so I spoke to the EP today and she seems to think DD will have issues at school as well. She mentioned limited eye contact and the fact that she doesn?t interact with the other children. Obviously, she has the speech issue as well. She said that the preschool explained DD has outbursts when expected to be involved in more structured activities or when told she can?t do something. They mentioned DD climbing up onto table and how she acted when she was told to get down.

She brought up getting her statemented and having a multi disciplinary meeting to sort this out. She said they may consider phased entry into school. She is going to contact the paediatrician and the Early Years Support. She is also going to chase SALT up as we have still not had anything from them other than an assessment.

After reading all of your reports about how the EP said there was no issue that they could see or having to convince the EP to see the truth, I was expecting something similar. Now that she has said she can see concerns herself I sort of feel relieved but at the same time I keep thinking ?How bad is she that it is obvious enough for the EP to comment on it??

I?m having mixed emotions at the minute.

Ah don't worry. Probably a great EP rather than your child having enormous issues. There are some fabby professionals out there.