to write to DDs paediatrician insisting she see her sooner?

(23 Posts)
LissaLoves Sat 09-Apr-16 00:08:56

DD is 4 and under a paediatrician as she has an array of sensory processing difficulties and what I'm 100% sure is autism. I have taught children on the spectrum - I know what I see. She didn't speak until a year ago so is under SALT, too. I received a letter today saying reports from nursery and SALT sound positive so no further steps are required other than a routine review in six months time. This means DD will start school in September with no support in place and will struggle immensely.

I disagree with the nursery's opinion that she's fine. She plays alone and doesn't join in with activities 90% of the time, as her teacher told me. She won't eat, drink or toilet there or even enter the toilets to wash her hands - they let her do it in the classroom. On days where routine has changed (I.e. Christmas party, guests in nursery) she has been hysterical when I've collected her. She carries a bag of favoured items which she doesn't put down all day and checks obsessively. Those things alone, as a teacher, would have me concerned for her. However, her teacher said the first year of nursery is about survival rather than blossoming and reported no concerns to the paediatrician.

Similarly with the SALT; I agreed that DDs speech had improved massively and the SALT could understand 80% of the words dd said in relation to the pictures she pointed to but admitted she was absolutely clueless when listening to dd speak in sentences to me yet she's reported fantastic progress to the paediatrician.

DD eats six foods only. She's getting fed up of these and losing weight. She can only be cared for by me. She flaps and stims so bloody obviously and completely ignored the paediatrician at every appointment. She has no friends and has never played with another child. She increasingly doesn't want to leave the house and isolates herself. I've never had a hug or a kiss from her. Ever. She can't bear smells, loud noises, bright lights. She wakes twice each night for an hour in complete meltdown.

Aibu to think she is struggling and needs support and to write to the paediatrician to ask that the review be bought forward? There was talk of her organising an ADOS last time but it seems like this has been ruled out now.

MattDillonsPants Sat 09-Apr-16 01:46:09

YANBU but OP post this in special needs too....there's a LOT of experience there and someone will be able to advise you exactly how to approach this and get DD what she's entitled to.x

OrangesandLemonsNow Sat 09-Apr-16 01:57:44

YANBU.

I agree with Matt. Maybe ask MNHQ to move the thread for you?

OneMoreCupOfTea Sat 09-Apr-16 07:42:34

Have you considered self referring for her to have an education health care plan to get support in place? Can be done through your local council site

Sirzy Sat 09-Apr-16 07:45:07

Yanbu to want her seen sooner.

But support from school shouldn't be dependant on a diagnosis. When you find out the school next week phone the school and make an appointment with the SENCO to discuss your needs and how you can work together to support a smooth transition and settling into school.

hazeyjane Sat 09-Apr-16 07:59:28

You need to talk to senco at nursery and discuss putting in a request for an ehcp
If the senco is delaying or obstructive you can put in the request yourself IPSEA have model letters to help formulate this www.ipsea.org.uk/what-you-need-to-know/model-letters/model-letter-1

I think as it will take some time for this to go through (it is a loooooong process) you need to talk to nursery and primary about transition to school and what steps will be put in place. Have you met with reception teachers and discussed your dds needs? It may be that nursery are thinking that the process should be started by school (which is frustrating) if this is the case, school need to at least be prepared in how they can support your dd while the lengthy ehcp process is happening, and how to make her start to school as happy as it can be.

As pp have said you don't need a diagnosis to get support for your dds needs.

I would also try to call your dds paeds Secretary to ask for an earlier appointment.

BillSykesDog Sat 09-Apr-16 08:14:51

YANBU, I agree about posting in SN.

I don't know much about it but my DS struggled with speech at the same age too and also had a SALT assessment. He's been discharged but exactly because the SALT worker saw him doing things like playing with other kids, interacting well with adults and joining in with play etc alongside an improvement in speech. She did say if he'd had problems with those things along with his speech it would have been taken further to give him support BEFORE starting primary. So I don't think what you're experiencing is standard at all and you should push given the timings.

I know my DS's nursery for the same age group are really active looking for any potential issues before school starts so they can be supported, so this 'just settling in' attitude isn't typical of supportive schools.

Good luck and I hope you get something sorted soon.

AnchorDownDeepBreath Sat 09-Apr-16 08:19:12

I dont think you'd be unreasonable to push for an earlier appointment but if the overarching belief is that she is making progress and doing okay, a quicker appointment is unlikely to help you.

I'd put my efforts into an EHCP and collecting evidence of why she isn't fine, ideally from third-party experts but anything that you can show which illustrates that whilst she might be improving, she still needs help, is likely to support your cause. Then worst case you can return in six months with enough evidence to avoid being fobbed off again.

Zazz101 Sat 09-Apr-16 09:05:44

Write a diary, to show what day to day struggles she has. Would it be worth a second opinion ? If so, ask GP for a new referral. I hope you get things sorted, it sounds incredibly stressful.

LissaLoves Sat 09-Apr-16 22:23:09

The nursery says I have no chance of getting an EHCP plan based on just toileting and eating issues and that they're only for extreme cases?

I'm happy for this to be moved to special needs board but not sure how to move it?

I'm happy with the paediatrician - she seemed totally on board after speaking to me and observing DD but I guess if the teacher and SALT say the opposite she has to listen to them. I was thinking of detailing her difficulties in writing, including a daily diary and food record to try and push for an appointment sooner than six months. But would she even bother reading it?

Anchor her teacher admitted to me that DD isn't progressing but is 'surviving' and she thinks that the best I can hope for in her first year at nursery hmm

MoonriseKingdom Sat 09-Apr-16 22:38:23

To get it moved report your own thread. There's a button at the bottom of each post - clicking it gives report as an option. Alternatively just copy your post and just paste it into a new thread on the special needs board.

I've got no clever advice - you must feel extremely frustrated. I hope you can get some things sorted in time for school. Do you know the Primary School she will be going to? Could you contact the SENCO there to discuss her likely needs (sorry if you have already done this)? Good luck

annandale Sat 09-Apr-16 22:42:56

I personally think you should write back to the paediatrician with a streamlined version of your first post, requesting an earlier review. The fact that she is losing weight is a huge deal, surely? The SN board is likely the best place to help sort out a text though.

EmmanuelleMumsnet (MNHQ) Sat 09-Apr-16 22:52:51

Hi OP, we've moved this to SEN, where we hope you'll continue to get lots of support flowers.

kittentits Sat 09-Apr-16 22:53:39

"Surviving is the best you can hope for"?! God do you really want her to stay there? They sound awful. It's not "just toileting and eating issues" either is it, clearly.

For perspective, my son has a few of the issues you describe of your daughter. I don't think he has autism, possibly some sort of sensory disorder which would make sense as I am dyspraxic with sensory processing disorder myself. His speech is delayed, he is utterly solitary in his play and he is very sensitive to noise and stimulation. His nursery have been fantastic with him, they understand and work with his issues, he has no formal diagnosis apart from the speech delay but he sees their Senco and other additional staff for help with things he struggles with.

I certainly don't think you'd be unreasonable to try to push the consultant appointment forward, but I do wonder how much good it would do you in this school, if the nursery is representative of the whole school.

Thisismyfirsttime Sat 09-Apr-16 22:56:39

Don't write. Call and ask to speak to the Paediatrician. You'll get through to the secretary so explain that you need an appt as soon as possible to discuss issues that have been ongoing and (ime) you'll get one sooner than the 'routine next appointment' that you'd otherwise have.

tethersend Sat 09-Apr-16 23:00:03

If nursery were qualified to decide who did and didn't get an EHCP, then they would be handing them out- quelle surprise, they're not. Nobody in your daughter'so nursery has the skills or qualifications to assess her, so for them to decide that you won't get an EHCP is absurd.

Request an assessment yourself. Template letter here.

tethersend Sat 09-Apr-16 23:01:31

Also consider videoing your DD when she's flapping/stimming/not interacting with other children etc.

And consider changing nursery. 'Surviving' is too low an expectation sad

LissaLoves Sat 09-Apr-16 23:16:52

Thanks for moving it smile

I want to move nurseries but worry it'll look like I'm moving because they've disagreed with me and prolong the process for dd even more so.

I've considered videoing her, but would they really take the time to watch it?

I will find out where she's going to school next week and arrange to meet with the SENCO then.

andsoimback Sat 09-Apr-16 23:23:20

Ive been sent teacher for years and completed countless similar forms. I have always met with parents before completing them and usually share what I'm writing before sending it off. It sounds like they decided to minimise it in the same way friends can but they're not friends and it's not their job to decide if everything is OK. Good luck.

hazeyjane Sun 10-Apr-16 07:56:16

You can also ask for cancellations, I did this yesterday and ds is being seen next week. When you speak to the paed ask them about a referral to a dietician who deals with children with asc and extreme food issues, and an OT who can help with sensory issues.

Nursery is completely out of order saying that. Every child deserves to get as much as they can out of preschool /nursery, and it is there job to ensure this and to help your child prepare for school. What does the SENCO say about support?

My ds had a 1-1 at preschool without any diagnosis, and has an EHCP without a diagnosis.

I am now a 1-1 for a child at preschool and also work with the senco supporting those children who need extra support but don't have an EHCP, or 1-1 funding. We have a plan for each child and how we will help them in school transition, including talking to the reception teachers about their needs. This is the sort of thing your nursery should be doing.

Zazz101 Sun 10-Apr-16 08:27:58

I just wanted to give you a bit of advice regarding the diary, from my own experience. No the consultant would not read it, but before I visit my daughters consultants, she has a couple, I read through the diary I have written myself. I do this for two main reasons, firstly, just in case there are any incendents that have happened that I have forgotten about, that I feel would be helpful to tell the consultants. To be able to give solid examples of things that have happened seems to be more impactful. Also to see if there is a pattern developing for anything. It also just confirms in my mind that, no, this is not 'normal'. And I have more confidence to disagree with Drs, medical professionals, when I have reminded myself of the last month, and all we have being through. I do hope this helps.

LissaLoves Sun 10-Apr-16 22:16:59

That's all great advice; thank you flowers

I'm definitely going to write explaining why it can't wait six months and requesting any cancellations. I'll include a few examples of incidents and explain the worsening food situation. It may not work but it's better than doing nothing!

AntiquityReRises Sun 10-Apr-16 22:30:50

I would definitely move nurseries and tell them why. My child with autism has bloody well blossomed at nursery with the fabulous support he has. About survival my arse.

I have 6 weekly meetings with the nursery SENCO for progress reports and targets.

Honestly, you can't make a willfully ignorant/incompetent nursery better but you can get another nursery on side, documenting issues and working on support through to primary.

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