Help new CVI diagnosis!!!

[Mo819]

Hi my 9 year old son has just been diagnosed with CVI he was being tested for dispraxia and this diagnosis has come out of the blue . We know nothing about this condition and are still waiting on the full report from the consultant.
I was wondering if there are any other parents here who can give us advice and how best to help him at home.

I'm so sorry. It's not something I've ever heard of before

Same.

My DS10 is awaiting assessment for autism, dyspraxia and ADHD. As is procedure in our area, a QTVI came to see him at school and immediately flagged him for CVI. It was a complete shock as he goes to the optician regularly and wears glasses, but being a neurological condition his visual impairments were not picked up. This was back in October. He has not been seen by the paediatric opthalmologist yet as the QTVI is building a report to send to the paediatric opthalmologist. It's a slow and frustrating process, knowing that he has CVI but not having a diagnosis.

The QTVI has been very supportive, although she's of course very busy. Fortunately DS already has an IDP (Wales equivalent of an ECHP) and the school has started to make adjustments. I don't think he has dyspraxia or ADHD but I still think he has autism.

In the time since I was told he has CVI I have read up on it. We were given no information. I've watched most of the videos on CVI Scotland and found the lessons so helpful. It's such an unheard-of condition and it's a lot to get your head around. https://cviscotland.org/

I did the Parent Pathways online course with the RNIB which was fantastic for helping me accept his visual impairments and for understanding that we are not alone. I found it- I'm still finding it- such a shock and have found that family and friends are not always willing to learn about or support the condition.

I also hooked up with RSBC and they offered emotional support sessions online for my DS, he'll be starting that soon. I'd check out Guide Dogs and CVI Society too.

Best of luck, I hope your DS is ok? Please let me know how you get on.

Would be great to know how and where his diagnosis came about? Does he have a QTVI and an ECHP?

From what I can gather, a good relationship with the QTVI (Qualified Teacher of Visual Impairments) is pretty important. I'm sure you have things more sorted since your OP and I'm sure you've already found this out by now but for anyone else who might be reading.. any child with visual impairments in the UK has the right to be assigned a QTVI whose role is to ensure they has access to education. I'm told that QTVI's understanding of CVIs can vary depending on your area.

The RNIB, RSBC and Guide Dogs have all been so lovely and helpful so if you haven't do give them a ring and give your DS on their systems. I was reluctant at first because I was so taken aback by the news and (silly I know!) but I felt in some way that because my DS has a fair amount of vision that we'd be taking up space that should go to completely blind children, or children with an eye condition. But what I found was that our situation is exactly what these charities are there to support. And as time has gone on, the more apparent it is how CVI affects every aspect of his life.

I really hope you are all doing ok and that he is now starting to get the support he needs.

Hi @GrandmistressGlitch I'm so sorry I completely missed your messages I don't know what a qtvi is can you elaborate please ?
No no further forward.
Fortunately we have one of the leading cvi doctors in the area who diagnosed him and it was her who picked up that he didn't have dispraxia but cvi however the after care is non existent x

A QTVI is a Qualified Teacher of children and young people with a Vision Impairment, essential to have one in order for your child to access their education. The school/local authority should provide you with access to one.

I'd get in touch with the CVI society who will be able to advise if your school/LA aren't being helpful.

Thank you for the advice hun ill get in touch with them x