Griffiths assessment

[Felinewoman]

My daughter had a Griffiths assessment a week ago and scored at around 1% across all domains. She's 5 and has a speech delay and SALT referred to paeds for assessment.
I did not expect her to be so delayed and it is quite a shock to the system to have a globally delayed child.
I was not present during the assessment but my partner said that she did not cooperate well. They said they took that into account but how can they then score/assess it?
Maybe I am just in denial as she is such beautiful and emotionally clever child.
I am so worried about her future.
She now has this label in her medical records.
They want to do genetics and maybe a micro array. They suggested to test for fragile X although she does not have any of the phenotypical features. She does have a small head and big ears ...so some syndrome stuff there but nil else.

Sorry for the blurb but I am sad and scared.

I can totally understand you being sad and scared and this coming as a shock to you. If you look in the SN Children Section there may be other MNers in there whose DC have GD who might be able to share their experiences with you.

Personally I wouldn’t worry too much about it being on her records. Hopefully now you can push for some more support.

One of mine has had genetic testing and so far, the benefits have outweighed the negatives.

Can I ask what lead to the referral to SaLT and if she’s been referred to any other services, like Occupational Therapy?

I know this is all a bit new but now is the time to apply for DLA, if you haven’t already and for an ECHP.

Is she in school yet?

Thanks for your reply.
Back story is: speech delay, recurrent glue ear, otherwise completely on track with milestones until at least 2.5 or so. Had SALT after I asked for referral.
She now had her second NHS block and they asked whether I had other concerns apart from speech. I said I think its mainly speech as shes pretty much as any other kid her age.
So we got a paeds appt and they did the assessment.
I am not sure her score is reflective if her abilities though hence my concern.
I am also a medic and when I see LD on patient notes it does bias me...that's why I am so terrified of her future with a label.
Same for genetics: it will always be there. What if she turns out fine but gets denied life insurance for instance because there's a mutation somewhere.
Anyway, I digress.

There are multiple worries here:

1. If she indeed has a rather severe GDD: I am terrified for her being vulnerable. How will she cope when I am not longer there? All those thoughts are keeping me from sleeping.
2. Can I ask for a re assessment? I do not think she's as delayed in all the domains as the test suggests. Gross and fine motor always seemed fine to me. Language is such an integral part of being human that I am not sure how accurate an assessment is in a speech delayed child? After all it is a snapshot of 1.5h

She does generally not interact with strangers and takes a while to warm up so I am not surprised she didn't draw what was asked of her etc

Maybe I am in denial. I don't know.

She is about to start schoolinchool in a few weeks....I am not sure they have 1 to 1 help etc

What is DLA and ECHP?

I forgot to add: she was born with a small head. Had CT and MRI and brain looked fine. And she developed fine.
No other health concerns. Happy and healthy child.
She loves dancing and rock climbing. She draws a lot and loves pretend play and dressing up and putting make up on.
She is independent with self care. Dresses herself, toilet trained, brushes her teeth, can make scrambled eggs etc
It just doesn't seem to fit with a child who essentially is falling off the chart in the griffiths

Are you in the UK @Felinewoman?

DLA is Disability Living Allowance and Education Care and Health Plan.

Scotland

Ah I’m not sure you have ECHPs in Scotland but I think you have something similar.

It can take a while for a diagnosis to sink in. Both of my DC are ND and we were fully expecting them to be diagnosed when they went through assessment but they were much older than your DD and we’d had years to accept that they were a bit different than their peers.

I can imagine it’s so much harder to accept if you weren’t expecting a diagnosis at the appointment.

I do think though that you’ll find SN Children Section on MN useful. The MNers in there should be able to tell you what things you can apply for in Scotland and any services that may be able to help.

Diesnt look as though you have DLA but you do have Child Disability Payment

As a scientist and medical doctor I know how inaccurate tests like this can be hence me questioning the accuracy.
I see all the things my daughter xan do and it just does not fit with what they found.
I will wait for the letter they are writing and then set up an appointment with paeds to discuss.
I was working and wasn't able to go to the assessment and also wasn't there when they called with the results.
I only got a summary from my partner.

I think I need to speak to the paediatrics team. I also need to ask about the available support etc , mainly at school.

With no family nearby and relying on currently nursery and soon breakfast and after school club I am not sure how to support her while doing my job which is shift work. My partner is also a hospital doctor. I am already working LTFT at 80% which is the equivalent to a normal person's working week. going down even further is financially not viable for us.

I think I need to take a few deep breaths and wait for paeds to write their summary etc
Then speak to school.
Weirdly every time I asked nursery for feedback they said she's doing great and developing completely normally.
When watching her play with her friends, especially her bestie they are just the same. Her best friend is also speech delayed but definitely not globally delayed...but who knows. She didn't undergo a test from the 1960s when they used to do Pavlov style experiments on little kids.