Starting a new school is a big step for any child and for families affected by congenital CMV (cCMV), it can bring extra challenges and emotions. From finding the right school setting to making sure the right support is in place, the journey can feel overwhelming at times.
At CMV Action, we know how important it is for families to feel heard, supported, and understood. That’s why we know how important it is to share stories from parents who’ve been through it. Parent’s like Paul, whose son John is living with the effects of cCMV.
In this blog, Paul shares his family’s experience of starting school with cCMV – the tough decisions, the small victories, and the pride that comes with watching your child thrive.
Starting School: John’s Story
by Paul Denny
Thinking back to his first year, we had to really fight to get John into a specialist school. The authorities involved were happy to place him in a mainstream setting, which would have been completely unacceptable for his needs. That fight brought many sleepless nights, but we didn’t give up, and eventually, we got him a place at Lime Academy, Highams Park.
As a little side note, there’s a mainstream junior school right next door and we managed to get our daughter Evelynn in there, so the two of them are right next to each other. Honestly, it was the best decision we ever made.
Even after securing John’s place, we were both nervous and worried. How would he settle in? John is profoundly deaf in his left ear, has vestibular hyperbole function, is non-verbal and autistic, so he has a lot of additional needs. But once he got into the routine and got used to the teachers, he began making so much progress.
The teachers have been absolutely brilliant and John loves them. We’re far more relaxed now, though our hearts still skip a beat whenever the school calls, usually because he’s bumped his head again – something he’s prone to with his balance issues. But the school and staff have done so much to ensure a smooth transition for him. They’ve also created opportunities for us to be involved, with plenty of open mornings for parents, which really helps.
They’ve put a good plan in place for John this year. He’ll be going swimming, which is fantastic, because he loves the water. Although I know I won’t be able to relax until he’s safely back from each trip! Still, we trust the teachers 100%. After six weeks off, I know it’ll take a bit of time for John to get back into routine, but we’re confident he’ll get there. He is absolutely thriving.
John is such a happy boy. While he hasn’t really started interacting with other children yet, we hope that will come this year. It’s something the school are actively working on. I know in my heart he’s happy, but I still worry. What if he never has any friends? I often work myself into a frenzy thinking about things like that.
To any parent whose child is about to start school – you’ll probably feel apprehensive, nervous, worried, but that’s all completely natural. Speak to the teachers. Let them know your concerns. For example, we’re still trying to toilet train John, with no success yet. One of my biggest fears at the start was the thought of someone else having to change him. Now? I don’t even bat an eyelid. The staff reassured us it would be fine and it really has been.
Make sure you get a development plan in place with the teacher. Share your hopes and goals for your child. There is support out there. We’re always happy to offer advice, too.
Trust the school. Trust the teachers.
I can’t speak for every school, of course, but we have found they truly look after your child. As we move into John’s second year, we still hold onto the hope that he will start to speak one day and continue to progress. We know it can be hard. You’ll feel sad, angry, worried and also happy. You’ll feel all these things. We do – but more than anything, we feel overwhelming pride and love at how well John is doing.
And we will never, ever give up.
Need Support?
If you’re preparing for your child to start school or nursery and are feeling overwhelmed, you’re not alone. At CMV Action, we’re here to help.
📞 Call us 0808 802 0030 for advice, guidance, or just a listening ear – we understand what you’re going through.
✉️ Email us with your questions or concerns: support@cmvaction.org.uk
💬 Or join our WhatsApp Community, where you can connect with other families affected by cCMV, share experiences, and find support from people who truly get it.
Together, we can help you feel more confident, informed, and supported every step of the way.