An unexpected first post

On what this subtstack will be about

Hello! I saw some of you subscribed, even though I set this page up over a year ago, but have never written anything here. Thank you for joining me in this empty space and in this silence. It felt comforting. Now - I am ready to write.

Today is my son Wilfred’s birthday. I started writing a post about it on Instagram, and I ran out of word space pretty quickly. I realised I finally needed a space where I could really speak. And not just about the topic I am expected to speak about: Food, Ukraine. I finally felt a natural drive to share fully about things that really matter to me in my personal life. I did it to a degree on my Instagram and in all of my books of course, but this year there has been some kind of a massive shift. In me definitely, and I think - perhaps within the flow of the universe? The world? Let’s hope that’s true, and for the best in both instances.

I suddenly have inner resources, even an urge - to tell you more, to share more, but not in a gratuitous way. I am hoping that perhaps something that I say here might help somebody. I might create more content if my inner resources continue growing. In this case I will create a subscription to compensate my time and effort doing extra posts. For now - this is an experiment. If you are here solely for the food, please consider googling my patreon page - there are hundreds of recipes and videos there. Otherwise, if you, like me, can hyper focus but your hyper focuses flinch from one space to another, from one information well to another - stick around. I plan to speak whatever feels urgent and important here, sometimes it may of course still be food.

Right, now with the inspiration source or - the catalyst to start writing here, which is (to the minute as I type this) Wilfred’s Birth Day, and my family’s story of Fragile X and neurodivergence.

This is the original, too-long-for-Instagram post I wrote this morning:

“A post for the neurodivergent community and their family and friends.

A short version: 6 years ago my younger son Wilfred was born in our bedroom. As you can see from our faces it was one of the happiest days of our lives. As soon as I held him in my arms, I instinctively did a scan of his body and immediately noticed that one of his ears was a little folded on top. I figured it will straighten itself out! Then the midwives examined my placenta and gasped. They said they’d never seen one like this before. To this day - I have no idea how it was special, they sadly didn’t save the photo.

When Wilfred was 1.5 years old I knew something was up. But I was told by the professionals it was too early for any diagnoses. I hyper focused and researched autism, which I knew very little about (or so I thought!), to the bone and realised he showed the signs and so did I (from childhood).

I didn’t wait for diagnoses, I insisted we look for help there and then. We met Keena Cummings who helped Wilfred using VERVE therapy. Keena gently guided us in how to help him maintain eye contact and learn how not to overwhelm him by speaking at him constantly (as is normally advised to parents with neurotypical children - to encourage speech).

I kept pushing. When Wilfred was 2.,5 years old we finally found out he had Fragile X Syndrome (and I had the FX premutation and consequently - early menopause). Information available pointed to the fact that Wilfed would never be fully independent, that he would never have a family of his own, that he would never have higher education. It felt like the end of the world. The world that was comfortable and understandable anyway. Now I feel differently. And - I am full of resolve and full of hope, and - of immense love.

Dear parents, the earlier you seek help, the more chances you have of helping your kids. But it is also never late.

Early intervention, however is key. If you have a suspicion of autism and/or adhd or if you even have the diagnosis of those for your child, don’t stop there. Ask for a genetic test, especially if you notice the following:
• a white descent child has epicanthic eye lids - a single eye fold that covers the inner corner of the eye. An epicanthal eye lid in people of white descent alone does not indicate a genetic disorder. But it may if combined with other characteristics of neurological or genetic divergence. My eldest son Sasha is half Thai, and I have Asian heritage in my DNA test, and my grandmother Vera most certainly had native Siberian ancestry, so an epicanthal fold just didn’t seem unusual to me.
• any other physical peculiarities (doctors call them ‘facial dismorphia’ which I hate). Like Wilfred’s ‘folded’ ear. Also, in Fragile X - ears often stick out, especially as the kids hit puberty.
• delays in development - sitting, crawling, walking, talking
• child’s mum is neurodivergent. I recently have been diagnosed with AuDhd (and my husband Joe too). To be honest - the relief! The final understanding of self, of our struggles and strengths.
• child’s mum has an early peri or full menopause (mine started at 38). 1 in 120 women have Fragile X premutation. 1 in 120! A lot not diagnosed.
• the grandfather on mother’s side suffers from neurological tremors. It’s called FRAXA tremors - look it up to see if you think your elder male relatives may show signs of this.

Anyway, this post has not been written to scare anyone. On the contrary.

I wish me today could teleport back to the day we’d been given our diagnoses (sadly - insensitively). I wish I could tell myself it will all be ok, brilliant even. It’s a struggle, don’t get me wrong. Especially getting Wilfred help he deserves in the UK, EHCP (funded education support) etc.

Wilfred is the most incredible human. I cannot express in words how amazing. I thank Fragile X UK society for helping me in those difficult first days. And thank you Joe Woodhouse It is such a huge credit to you how Wilfred is doing, to your nature and your nurture. Thank you my love. Please spread this information far and wide. And Happy Birthday my Vilfiks. How lucky we are to be your parents.”

Here are two videos and one photo to finish this post with. I hope, after everything you’d read above, they give you much much joy and hope.

The best bits

PS If you would like to listen to the story of our diagnoses, you can watch it HERE. When I recorded the above interview, I was still in the difficult stage, pre-acceptance, so I may look sad and forlorn. Things have shifted now, and I see so so so much light. Just look above.