First child development centre appointment- what to expect?

[SinkGirl]

Have posted about my DS before but was hoping others would have some experience to ease my nerves!

My twins are almost two, one has been very healthy but the other has had health issues from birth. Back in February things were improving and then he suddenly had a big developmental regression so we were referred to see the community paediatrician at the CDC (I think other places have similar systems).

Since then he’s been diagnosed with a vision disorder and mild scarring in the white matter of his brain. The consultants we’ve seen haven’t been especially forthcoming and after recent appointments I’ve lost confidence in them to be honest. I was pretty convinced they’d be thinking he has ASD, but have recently found out that vision disorders can cause a lot of the same behaviours (even though his vision doesn’t seem to be too badly affected).

The letter about this appointment tomorrow said it would be 1.5 - 2 hours. Does anyone have any idea what they’ll do? What can I do to prepare or make things easier? I’m so anxious about it.

Is this the appt with the paed, speec, o.t etc?

If so it's absolutely nothing to worry about, theyll ask you questions about dc speech, ability etc while they take turns to play/interact with the dc to assess them.

Be prepared for lots and lots of questions! They will take a detailed history going back to pregnancy. Take your DC red book with you too.

Thanks - yes, that’s the one, although the letter said we would see the consultant and at least one other person, so not sure how many people we will see. He used to be under OT, they discharged him when he started walking, and then the regression happened about a month later. Not quite sure how I’m going to hold it together, I find it quite difficult to talk about it as it’s so upsetting. Hopefully they won’t judge me too harshly!

They won't judge you at all! I used to work in something similar (not similar enough to be of much help to you with this) and there'd have been no judgement of the parent, particularly not for things such as finding it upsetting or feeling emotional.

In terms of what to expect, I think the professionals will want to ask you lots of things as at this age, his history will be really important in helping them piece together possible diagnoses.

Some of the questions will feel trivial (or unsettling because they seem irrelevant so it makes you wonder why they are asking). Usually this is just so they can make sure they've got the whole picture, can rule things out, and also what might be irrelevant to your son's issues would be relevant for a different set of issues so they've got to check.

There won't be any right or wrong answers you can give so don't censor yourself or worry that the questions are leading.

Parents sometimes come away feeling like they've just given lots of information and not received anything back. If so, it's helpful to think of it as being the first stage in the process and to realise that you'll recieve more information or advice further down the line.

One tip would be to make sure you get with contact details of a named person who you can liaise with in future. Sometimes they have social workers or family support workers on the team specifically for this (don't worry or feel that this is the mythical "social services will judge my parenting" role), other times there isn't a specific role so it's helpful if you can get a named person. I have found parents have had difficulty making follow-up contact if they have questions or are confused about something after the appointment... usually because it's a "team" clinic so phone messages etc can end up being passed around a bit. Much better if you can call and ask to speak to X.

Anyway, hope that your appointment goes well. Good luck.

Thank you, that’s super helpful - I really appreciate it

Appointment went well - the paediatrician was lovely and really helpful. She wants him to see SALT and have some metabolic and genetic tests before they decide anything. She mentioned fragile X syndrome which honestly scares the shit out of me, but then everything scares me at the moment.