Please help me help my DD

[Nodecagon]

This time last year, after 2 whole years of 'challenging behaviour' in school, the SENCO asked me to agree to begin SA for DD. I agreed because at that point DD was falling further and further behind academically, had developed a serious hatred/fear of school and I could see her self-esteem was suffering badly. I also thought (hoped) that the process might finally shed some light on what the actual problem was. Maybe that was just me being selfish but I think I wanted (still do) someone to say 'you are not a terrible mother, DD's problems are caused by X, not poor parenting skills!'

So various experts came into school to see my DD. A behaviour therapist, whom DD loved, and picked up straight away on DD's sensory issues and anxieties about transitions. she also noted DD was struggling with certain aspects of 'playground politics' and was socially lagging behind her peers slightly.

DD also apparently saw an EP at school, but the report I received honestly could have been about a completely different child; and a Speech and Language therapist who said that DD was of average ability, but was using language in a way that was between 18 months to 2 years behind her chronological age. Neither gave any explanation why this was or recommended any further action be taken.

I got an appointment through the post to take DD to see a paediatrician as part of the SA process. He asked about the other reports mainly and recommended DD saw an OT for the sensory stuff and also refered her to ENT as he thought she had Auditory Processing Disorder. He also noted that DD presented as immature for her age (she told him at the time she was getting bullied at school for watching Peppa Pig/Cbeebies) and also said she seemed to have some issues with co-ordination and motor skills.

So we went to ENT who basically threw a leaflet at us (about APD) and said there was nothing he could do, so it was pointless us coming. Went to OT who said her fine motor skills are great (so why does she reuse to write with a pencil/use knife and fork most of the time?) but agreed she had problems with balancing on 1 leg and throwing a ball too hard/too soft. Recommended I get ear defenders and an inflatable cushion for DD to use at school as well as carry on using the pencil grips. the report she sent after said that the school let my DD use a laptop instead of writing and that she had lots of sensory toys in class. As far as I know this isn't true and was never mention before, so no idea where it came from.

Statement arrived in the post over the summer holidays, but as far as I can see it doesn't actually change anything at school. DD has had her own TA (currently shared with another little boy in the mornings) since year 1 anyway, and actually the statement didn't even say this was necessary. In fact I can't really make out what it is for, other than it being official and the school getting some extra funding I suppose.

DD still has good and bad days at school. When its bad it can get really bad and in the last week she has hit, bitten, kicked and spat on several occasions. One of my main worries is the amount of time she spends out of class means she will keep getting further behind, but after speaking to the teachers last week they say that is the choice DD is making. I know my DD though and know she isn't simply choosing to behave this way at school for no reason. Yet no one can tell me why she does. Of course it could just be bad parenting (still suspect the school believe this) or the fact I am a single parent and DD doesn't see her father (school counsellor's theory) but I seriously think she has some undiagnosed SN but after reading pages of diagnostic criteria online, I am still clueless as to what and all the experts who have seen her seem to think the same.

So where do I go next to get my DD the help she clearly needs? Please help me understand her because at the moment I feel like I have failed her badly as a parent.

Lots of the things you mention are associated with ASD. No-one can make this diagnosis over the internet but I do suggest you visit your GP and ask for a referral (some areas via CAMHS, other areas community paediatrician)for this to be investigated. Perhaps write a list of you daughters problems to take with you.

It is good you have a statement in place but it sounds like it needs a review to put better support in place.

My son (10 years, AS) has similarly challenging behaviour and is very anxious about school (often school refuses). We have just changed school for him to an ARP unit and they are working hard to try and reduce his anxiety levels. We are hoping the smaller class size and increased adult support will help. The school really need to address the causes of the challenging behaviour and try and reduce these rather than just taking her out of the classroom when incidents happen. My son rapidly learnt that the quickest way to get out of situations he found stressful was to behave badly.

I also feel like I have failed my ds's..... You are not alone.

I have wondered about ASD too as there is some family history but then again there are also things that don't fit and I'm afraid that if I asked for a referral the GP would think I'm just a neurotic mother wanting to label DD. Surely if none of the other professionals have suggested it then a GP won't take my words over all of theirs, will they?

Things that I don't think fit the criteria are- she is a really social little girl, even if she's not always particularly good at it. Loves talking to anyone and everyone most of the time, unless she is anxious about something then its just whispering in my ear. One on one situations, where it is nice and calm etc. (like they are at all the meetings with experts) are no problem to her so they never see that side. She has made friends with other children, both in and out of school, and most adults think she is lovely. Yet there is something about how she interacts that I can't quite explain, but have a feeling its not right. I can see already kids her age don't want to play the 'babyish' games she does, but DD will either find a younger child who does or an older kid who kindly indulges her. Also she tends to get a bit obsessive if she gets a 'best friend' and wants to be with them all the time, gets angry if they play with someone else. She has a current 'best friend' a new girl who moved here a few weeks ago, but already I can see the cracks in the relationship appearing. DD however is blissfully unaware.

Other things is her brilliant imagination. Something else that makes her stand out a bit from the others her age as she will happily run around playing in some imaginary pretend world she has created, while they are more interested in chatting about 1 direction (or whoever the latest craze is) songs and who is the best looking. Part of me wants to believe that she will catch up with them eventually, and of course I don't want my little girl getting all growed up too soon, but what if she doesn't. When the other girls are moved onto boyfriends and hair and makeup, will my DD still be riding a pink unicorn in fairyland? Or will she move on too, but just always be that little bit behind the others? If I leave it and she doesn't catch up I feel I'm going to regret not doing something sooner.

Oh and I meant to say, OneinEight, about the quickest way to get out of stressful situations is misbehave. Yes! That is exactly the same with DD. Even yesterday when I asked her why she was spiting at the teacher, her reply was 'to get mummy to come, they always phone you when I'm bad'

The other professionals who have seen your DD have all not been able to diagnose ASD because they are not qualified to do so.

What is the statement like with particular reference to parts 2 and 3; it should both specify and quantify provision. If it does neither then it needs to be rejected as it is actually unlawful.

Given the family history as well, I would ask your GP to refer you to a developmental paediatrician. I cannot of course diagnose anything but I did think ASD on reading your initial and subsequent post about your DD. A "label" as well should be seen purely as a signpost to getting more help.

There is alot of evidence around now about girls with Asd not meeting the same criteria as boys.

There is an interesting piece on the NAS website about it.

I have a Dd with Asd and her diagnosis has been very helpful but wasnt easy to get.

You havent failed your Dd you are just starting your journey. You will have to fight for her and be her advocate to help her get the support she needs.

Good luck

Well after posting here today, DD came out of school this afternoon saying she was fantastic all day :) although she did mention missing one lesson 'cos she was doing a helpful job round the school' which kind of makes me wonder a bit but overall I'm happy it was a good day.

See this is part of the problem I think, some days are good, some ok, others bad and some truly awful. there doesn't seem to be any pattern (I can see anyway) like cause and effect so I can work it out.

I know other professionals weren't able to diagnose, but if wouldn't they say something if they suspect it? You know like recommend I get her assessed for X because they thought it would be helpful, or do they not think that way?

Tbh I have read the criteria for asd (in girls and otherwise) and I find it quite confusing to try to work out what it means and try to apply that to DD. I worry that I might be trying to make things fit the criteria when they are not really there and start doubting myself. then she will have a good day like today and tell myself everythings going to be ok from now on and believe it- until the next bad day happens!

Nodecagon - I see so many similarities in your daughter and mine. Especially the immaturity and being in a fantasy world of unicorns and fairies!

My DD is 9 and just recently saw the GP who is going to refer her to CAMHS for assessment for ASD, but he said he thinks she is 'borderline' Aspergers. (?)

Like you I worry sometimes that I'm trying to 'fit' her into the criteria for Aspergers, but when she is curled in a ball, non-verbal in bed after a bad day at school I know I have to see this through to the end (whatever that may be) to get her the help and support she needs.

I know its not a bad thing and there could be far worse things she could be doing and its definitely a part of her personality that endears people (adults) to her. I'm sure if it was just the bad stuff on its own they would have a lot less time for her. But it is something that is starting to set her apart from other kids her age and is becoming more noticeable the older they get and DD still has the same interests she did age 4 (she's now nearly 8 btw) where as the others have all moved on.

This morning DD was desperate to find her Hello Kitty gloves (organisation skills are not a strong point in our house) before school but we couldn't find them. I sent her to school anyway without them-much protesting, but she went in after I promised if I found them I would drop them into the office. I didn't find them but around morning break time I get a call from school saying DD is complaining of tummyache. A tummyache that started apparently as soon as she went into the classroom. And stopped as soon as we came home and DD recommenced her hunt for the Hello Kitty Gloves.

So far this week that is 1.5 out of 3 days at school she has missed. Its not hard to see why she is falling behind academically, is it? Yet if I had refused to collect her they would put me in the nasty uncaring mother bracket and if they had ignored DD and tried to get her to carry on with work, she would probably of kicked off and ended up in trouble again, so its a really difficult situation to know what to do for the best.