Own the Equinox Day 8: My Usher Journey – One Parent’s Perspective
August 30, 2016
by Chloe Joyner
Chloe Joyner lives in Manchester, England, and is mum to 2 children (son Emery, aged 9 and daughter Xanthe, aged 6). Xanthe was diagnosed as profoundly deaf when she was 2 weeks old, and with Usher syndrome at 18 months old. Alongside voluntary work for various hearing/vision-related charities, Chloe works as a freelance nutritionist, specializing in children's nutrition.
As with my experience of parenthood in general, life post-Usher diagnosis has consisted of a series of phases. I‘m going to confidently suggest that 2016 may just have been the year in which I have graduated to phase 2. Let me rewind to fill you in on my phases theory…
The period following diagnosis (‘phase 1’) is intense for parents of young children with Usher. Let’s not forget that, increasingly, parents are receiving an Usher diagnosis hot on the heels of the initial deafness diagnosis. Which itself now happens pretty quick off the mark. All this can happen before their child reaches their 1st or 2nd birthday, while the physical demands of early parenthood are at their most relentless.
Early diagnosis of hearing loss prompts intensive monitoring and support for children in reaching communication milestones. Many families attend between 1-3 appointments per week. While carrying out 24/7 language activity at home, whichever communication mode they choose. Time well spent definitely, but an additional physical and emotional drain none the less. Cue the Usher diagnosis. Good timing? Not really! No wonder it took us a while to bounce back, we certainly had our hands full!
So now, 5 years into Xanthe’s Usher journey, where do I find myself as a parent in the post-diagnosis landscape? How can I be sure I have left behind the roller-coaster 1st phase and transitioned to steadier ground?
Xanthe and Chloe
Happily, there are several home-grown tests I can apply to find out…
Do I find myself blurting out the news of Xanthe’s Usher diagnosis entirely inappropriately to friendly-but-unknown shop assistants? Nope.
Do I feel my heart miss a beat when I catch glimpse of a guide dog in service or a televised appeal for a blindness charity? Nope.
Am I now able to answer my children’s questions about vision loss without having to hide behind a book for fear of showing my tears? Yes.
Phase 1? Tick!
So, what does phase 2 hold? Well, having only just arrived I’m yet to find out, but here’s what I think.
I now feel able to talk about Usher within our close family with a positive outlook and an open mind.
I now choose who I share the news with, and how much I let them know.
We now have conversations in our family about Usher syndrome on a ‘little and often’ basis – we’ve ‘welcomed’ Usher into our family vocabulary and tell our daughter as much as she is keen or able to know and understand.
I now look forward to my daughter being able to influence how we approach Usher as a family.
I can see that it is probably overly-optimistic to think the clouds of uncertainty and unpredictable emotional ups and downs of the first phase are behind us for good. I recognise that we are lucky our daughter’s vision is currently relatively stable. We feel braced for change, but aren’t having to live with the reality of it just yet. However, whilst an Usher diagnosis imparts almost lifelong uncertainty, I can see how much easier it is to live with when you feel like you’re on steadier emotional ground yourself.
I am determined to make the most of this calm period amidst the storm, to do more for our community, connecting with others for us to learn from and lean on each other as the journey continues. The daily habit I choose to adopt for the 26 days leading up to Usher Awareness Day is to reach out and connect with our wonderful Usher community. I would love to help create a network of connected and empowered Usher families here in the UK, so that the next generation of children grow up confident of their identity, inspired and connected to a solid web of support. On 17th September I will be holding an event in Manchester for families of children with Usher syndrome living in the UK (details below), and I hope this event will be a first step in making that network of support a reality.
My views are only that of a parent, I cannot speak for someone who has Usher – child or adult – but as one of the growing number of parents who find out the news about Usher long before their children. I hope this gives some hope to newly-diagnosed families that the haze does lift, that phase 1 is exactly that. Going through that period of grief and uncertainty gives you the armour and firm-footedness you need to begin on the journey ahead with confidence, strength, determination and optimism.
For details of the event, please see below and/or email firstname.lastname@example.org.
When: Saturday 17th Sept 2016, 1-5pm
Where: Genie Networks, 229 Winchester Road, Stretford, Manchester, M32 9PT, UK.
What: An event for families of children with Usher syndrome to celebrate the 2nd Annual Usher Syndrome Awareness Day.
Everyone is welcome - there will be activities for younger children, films and a chill out area for older children, and a chance for parents and carers to get together. This is an event organised by families for families and will hopefully be a fantastic opportunity for children and families to meet others with similar experiences. Lunch buffet to be provided at 1pm and coffee/tea and cakes at 4pm. Please let me know if you can attend, or if you have any questions/would like more information. You can reach me by email (email@example.com).