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Community paediatric meeting

4 replies

beautifulbrothers · 02/12/2023 00:25

Our first meeting is tomorrow and I don't know what to expect.

We've always known that DS1 was different. When he was 3yo, he started a new nursery full-time, and by the time he was 4yo, they were discussing his differences with us - notably, advanced literacy and numeracy, but socially and emotionally behind his peers (atypical interactions, dysregulation, etc.). He was observed by SENDCo and Sp&L therapist, but they didn't observe any obvious challenges. The SENDCo changed and it was then decided that he should start Reception in nurture group, but he stayed there all year (am - nurture, pm - mainstream). DS was observed by an Ed Psych - they saw possible neuro-divergence, but thought that he would have no difficulty accessing the curriculum, so no further assistance. SENDCo referred DS to Community Paediatric team at Easter (Reception) and we were advised that there was an 18-month waiting list. Then we were contacted during the October Half Term of Year 1 (this year) and invited to the Child Development Centre for an appointment tomorrow! We've had to confirm it at least 4 times by text and phone call.

We think DS is autistic, but no-one has ever said this to us, although they don't disagree when we talk about it. I see the HV team every few weeks about DS2 and they have been fantastic. We were advised not to prepare him for the appointment, which makes me feel very uncomfortable, but I am also really worried that the paediatric team won't see his additional needs. I love him and he is bloody amazing, but our lives (me and DH) revolve around managing his routine, structure and rules. It is exhausting and all-consuming. We are desperate for a diagnosis so that we can have support in place for him as he moves through primary and towards secondary school and beyond.

Sorry this is such an essay... I'm just up late worrying about what will happen tomorrow. We have no clue and the school don't seem to know either. I don't think it's an autism assessment because no-one has mentioned autism. I guess it's to see whether he meets the threshold for a diagnostic pathway, but I'm so worried he'll have a 'good' day. 😫

Will update tomorrow, but it would be lovely to hear from anyone who has experienced similar. Thank you.x

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BlueBrick · 02/12/2023 08:59

The process is different in different areas, so no-one here will be able to definitively tell you what the will entail. Although most generally take a developmental history and family history etc. as part of the first appointment.

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iwanttoscream · 02/12/2023 09:11

Possibly community paediatrician will do some base line tests to see what your ds can do.
Agree with bluebick about development history and family history.
The 1st appointment is always daunting, probably follow up appointments??
As ds will probably be as nervous as yourself.

My twins were under them as well as hospital paediatrics .
Ds discharged after a couple of years.
Dd was under community paediatrics until she got her statement of educational needs. Which eventually became an ehcp.
Was under hospital paed until to old..

Hope it goes well for you and ds.

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beautifulbrothers · 02/12/2023 17:02

It went really well. He's getting a referral for ASD assessment with SALT and Ed Psych. ❤️

DH and I are feeling really positive. She said that his nurture group teacher (also SENDCo) had written such a thorough report that he had pretty much done her job for her. 😅 He is amazing! 🏆 So it was just her observations to add really, and she had questions about DS' early development as well as any recent changes.

We should have a follow-up appointment with her in 6 months. 🤞

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iwanttoscream · 02/12/2023 20:40

That's brilliant news.
The 1st appointment is always daunting, hopefully she will sent you a report of her observations, so will have a phone number to contact if no appointment comes through in 6 months.
Though I reckon you'd be given a scheduled appointment for 6 months well beforehand.

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