PVL and language problems

[ScottishInSwitzerland]

Hi. I am not sure this is the right place to post. And I may ramble a bit (sorry).

DD is 5.5. Was born at 31 weeks, very poorly, and when a few weeks old we were told she has PVL - periventricular leucomalacia. Docs told us she was quite badly affected (is that the right word? Lots of damage) and we needed to prepare ourselves that she may not walk etc. (But nobody knows exactly how the brain works, can't give exact prognosis)

Turns out her motor skills are just fine.

But she has speech and language delays, some fairly minor sensory issues and anxiety.

We now live abroad and I am trying to negotiate the school system and sort out support for her.

Anyway - I had always assumed her PVL had nothing to do with all this but her private speech therapist said to me today that actually the language processing issues may well be to do with it.

Does anybody know anything about this? The main reason for my interest is that one of the professionals dealing with DD made a comment to the effect that she could get more or different support if we can actually pin her needs on a specific 'condition' or on her brain damage

Sorry this is a bit all over the place. I know I am incredibly lucky after her horrid prognosis that we are only dealing with a collection of more minor issues. But I really want to do the best for her

[ScottishInSwitzerland]

Thanks. Emailing the speech therapist is a very obvious and practical thing to do. I am just not thinking very clearly or well! I have emailed her. Will see what she says.

[LetTheRiverAnswer]

Hi ScottishinSwitzerland I don't have anything useful to add, just wanted to commiserate with you as your situation sounds rather similar to mine. DS1, born 32 weeks, several complications at the time. He had speech delay and ongoing speech problems (he's 6 and very difficult to understand although his comprehension is good. He's struggled immensly with reading and can barely write). He developed hearing problems and these have been attributed to the CMV infection he had as a newborn. CMV infection can cause calcification of the brain and specific learning difficulties...
It's like peering into a muddy puddle to try to see a reflection: there's bits of information there, a bit of a picture emerging, but it's so difficult to work out

[LetTheRiverAnswer]

Oh, and I meant to say, DS school is also very keen to get a specific condition to explain hearing/speech difficulties as that would almost certainly bump him up from "Should see" to "must see" the Ed Psych, and without seeing the Ed Psych he can't get the HEP that would lead to extra funding...

[ScottishInSwitzerland]

Hi. Sorry I haven't been back for a while. I have been feeling quite overwhelmed.
Thanks very much for your posts both of you.

Our chat at the moment is wait and see. The wait for an appointment at te speech clinic in the neurology dept seems very long so no idea when she will get seen then.

Regarding moving forward, we have made an appointment for mid march where the educational psychologist, speech therapist, her kindergarten teacher and the head teacher of whichever school she's been allocated will decide how best to help her transition to school.

I don't do uncertainty very well and wish I could fast forward. But I know I'm very lucky that all these people are involve and trying to do the best for her

I hope you get proper support for your son soon river