Today I had a 15 min catch up with soldier’s teacher, he has only been in school 50% of the time since school returned after summer. A mixture of illness (bowel related), tiredness (gene flaw related) and just not wanting to go. He refused his last two respite visits too. He’s a big lad now…

As the U.K. starts to open up from lockdown many families like ours find life more restricted than ever. Years of hard work to get our very sensory Angel and Soldier able to cope with the world undone in 5 months of shielding and the subsequent lockdowns. As most children relish their freedom again, ours…

So SWAN UK is 10 years old! 🎶 Happy Birthday to you A wonderful crew Happy Birthday dear SWAN Without you what would we do!! 🎶 Who they? Those that know me don’t need to ask. My best friend even ran a marathon for them. When you have an undiagnosed child (or 2 like us)…

As your kids grow up they should get stronger, more capable, more resilient.... but not always... We were told when Angel and Soldier were young and we had no idea what was causing their delayed milestones that their path was not known. Then again when we found out the gene flaws causing their issues that…

It’s a few years since I shared in this blog. Angel and Soldier are now young adolescents and life is definitely taking a new path. Both are in High Schools and we are navigating our way through the COVID pandemic like everyone else. Me, my thoughts are turning to adulthood. I’ve started a degree in…

This morning Soldier lit up my world. Such small things to most families but such major communication for Soldier. We have been away for a few days and since coming home Soldier had been getting up early.. so I have been telling him if it is still dark when you wake up go back to…

Here we are heading back from what should have been a bit of family fun to celebrate soldier's 9th birthday but in true ASN family style it never worked out that way.... we should have left home yesterday morning all excited for our night away at our favourite hotel  instead Soldier was in serious pain his…

So you're on the railway, it's been a tough journey and you've finally got there then you see the lights coming towards you at the rate of naughts and 'bang' you're hit..... Reality has just slapped you across the face.... Your child (Angel), that you have sought mainstream interaction for has just reinforced her difference!…

Was not so long ago I posted about how heartbreaking it is for Angel who would love friends to be in an environment where that wasn't possible. A friend I made since coming across to Edinburgh messaged me on the back of that post and offered a play date with her daughter who is the…