going round in circles

[jetcat32]

please bear with me - this may be long!

my DD1 has always had problems socially, way back in nursery comments were made that she would spend all day by herself, usually under the table. Nothing was done.

Fast forward a couple of years, after a lot of pushing from me, she was finally assessed by an OT, who diagnosed a sensory processing disorder. She gave excercises etc to do.

Fast forward another few years, she is now is Y7, and still really struggling socially, as well as poor communication, problems following instructions, very poor motor skills etc, and finds the hustle and bustle of 'big school' very frightening. I have lost count of the times she has came home not having had any dinner, due to too many people in the dinner queue - she will simply leave the line. ALl this is really affecting her self-confidence, and i feel more could be done to help her.

A year or so ago my GP referred her to paeds doc, but at the time of her first appointment, she was actually in hospital - and after a year or so of tests, scans etc she has been diagnosed with renal nepropathy (sp!) She has seen the paeds doc a few more times, but tbh, the kidney problems kind of became a priority. I did manage to have a quick chat with him re her difficulties, he told me to chat with school. I did, they said to go to CAMHS via GP, as that would be quicker than they referring her. I have been to GP this morning, who said no, its a paeds thing!!

I have a few health issues myself, which means i am not the most assertive person, but i am getting really fed up now and worried. DD has an app with the paeds doc in May - but i am thinking that is another 2 month away, and she will continue to have problems in the meantime!

My sister's DS has aspergers, and while i can see a lot of familiar traits in my DD, i am not sure if i should be arguing the point with the paeds doc - in case he thinks i am stepping on toes etc!

Any outside points of view would be great, and sorry it is such an essay!

Could you write to the paed requesting a referral to Camhs, (with the points you have made here) pointing out that you have asked the GP who wishes to leave it to the paed.

GP did say that if the paed wanted to refer to CAMHS then he would support that. Sorry for stupid question, but is it ok/allowed to write to paeds? That would make my life a lot easier!

GP was saying that CAMHS was for mental health problems, not developmental problems, and basically i dont want DD to get lost in the shuffle. Can CAMHS assess for Aspergers, developmental problems, dyspraxia etc as that are all conditions that have been mentioned in the past - not saying that she has all or even 1 of those, but those are closest to her difficulties.

many thanks

Just to recap, if I can...

problems socially
spends all day by herself usually under the table when younger
poor communication
problems following instructions, very poor motor skills
finds the hustle and bustle of 'big school' very frightening
too many people in the dinner queue - she will simply leave the line.

Yes, that sounds well worth a developmental paediatrician. I think you're right to ring/email/write to ask whether there is a faster appointment available, though I feel they're very likely to say no. There's often quite a wait for a good DPaed.

What's your dd like if there's a sudden change of routine, or something unexpected happening, can I ask?

I have written to Paed on several occasions. I find it hard to say some things especially infront of ds! In our area the community paeds diagnose but ds had to be referred to CAMHS to rule out other causes (ie they recommended an ASD Dx but referred us back to paed to actually do this).

thanks for all your replies. Amber, no she is def not good with change, though not as bad as she used to be!

I think i will prob have to wait until the May appointment, but in the meantime, i am going to arrange another meeting at school, as after the last one her head of year was suspended so nothing got done! They were going to set up a circle of friends for her (she had one in primary) but nothing as yet. She is being allowed out of lessons 5 mins early to avoid the crowds, but her teacher keeps reminding her that that cant go on for ever - which stresses DD out!

I am getting the impression that many parents have to go round in circles - best wishes to you all!

hi again

i thought it best to post here again, rather than a new thread - saves me having to explain myself again!

DD has come home from school today distraught - she cant find the pe kit she left at school yesterday. She has also lost her dinner card! As her losing uniform was a regular thing at primary (not sure why - she either just forgets, or remembers later and then doesnt want to ask to go and get it!!) i resorted to not buying the school uniform (after she lost her 10th school cardi @ £11 a go!) and school didnt really mind.

At senior school, they are a lot more strict - the pe trousers were £15, pe socks £5, not forgetting her trainers! I simpoly cant afford to keep replacing this, as i am sure this wont be a one off.

I am in the process of arranging a meeting with school, but not really sure what to say about this - as when i explained that she HAD to go to toilet regularly due to kidney probs and that she wasnt going because she wouldnt ask - they simply replied that they cant force her to go! I am getting the impression that they will way re the pe kit that they cant force her to remember to pick it up! She does take it from the pe area, and then i think she simply forgets she has an extra bag when leaving the following lessons.

ANy tips on how to handle this would be great, as i am now stressed that i have to fork out at least £30 for a new kit!

Is it possible that she could change for PE in the medical room or in a side room - that way she might avoid some of the hustle and bustle which is causing her confusion. Another thing to do is to find her a friend - a nice mumsy girl - there will be one in a her class - who can look after her and mother her a bit. Girls can be bitches but there are nice ones and you might find that they pick out a nice lass who is a bit solid and sensible in nature so isn't in the throng of the 'popular' girls who is only too willing to have a job/friend combo thrust upon her.

A way to get round the loo thing might be to issue her with a coloured card that she just shows the teacher - that way she doesn't have to talk or explain.

Hi. Your daughter sounds like she could fit the profile of Dyspraxia or ASD-they are on the same spectrum.My son,nearly 11, has Dyspraxia and has problems following too many instructions at once,with concentration,is very disorganised, has motor difficulties and struggles socially-hes in the process of an assessment for ASD-so it would be quite possible for your dd to have both.I think you need to arrange an appoint. wiyh the school asap-with her year head and guidance teacher and head of SN if there is one-usually connected to the Pupil Support Base.She does not need to have a dx of anything to be given additional support-it sounds like the school recognise she is struggling and to say she cant have an extra 5 mins indefinitely is nonsense, if thats what she needs.My ds needs 5mins at end of day to put things in his schoolbag etc as he gets even more disorganised and forgetful if he has to hurry,(he is still in primary school).I also asked his teacher to write achecklist for him, for the things he needed to bring home-homework, glasses,etc.This could be done at Big school, by providing her with a daily diary, that the teachers could write in if she has h/work.She could be given 5mins to get to the dinner hall 1st,ahead of everyone else-such a small thing, but it could make a big difference to her anxiety levels which are probably through the roof around lunch-time-or could she take a packed lunch?The school should be putting in place the Circle of Friends for her, or, if she doesnt want to be in the playground, she could be allowed to go to the pupil support base.Insist the school address your dds needs-and get something in writing-ask to be given copy of minutes.Re the PE-Kit-sounds like you may have to replace it this time, but in future could you write her a note to remind her to bring her kit home-or if she has a mobile, could you text her at end of PE lesson to remind her to pick up her gym bag? Agree with above re school finding her a friend in her class to remind her re kit or even accompany her to the dinner hall. Think you should also put in writing your concerns re your dd to the pead-ask him to explain the purpose of your next appoint-is he considering a dx? An OT can dx Dyspraxia and a psychologist can test for ASD, so dont think you need to go through CAMHS route. Hope some of this(very long) post is of help. Good Luck.

thanks so much bigpants - that was great! With your permission, i am going to use a lot of what you said in my letter to the school. Her head of year - who i had my last meeting with, has now been suspended (!) so i'm not sure how much of what was promised has actually been started IYSWIM.

Thanks again, and we will get going with all your great tips!