I’d also been wondering why she was leaving fresh OJ some days, and devouring it on others. It transpires that she can only drink fresh OJ straight from the fridge. The moment it warms up by a few degrees then she can’t handle the taste.
The above are just a few little insights into a variety of sensory sensitivities that G has. But you know what-she’s decisive, she likes what she likes and we know where we stand!! I’d love to be that decisive...
From nothing to the everything
G has had a variety of assessments recently. Firstly an online assessment for autism (one hour, over Teams - no I’m not convinced either), an assessment for ADHD (suggested by the autism team not ourselves) and is also awaiting an assessment by an educational psychologist at school next week. It has taken years to get to this point, but I’m pleased we’re being heard.
Now don’t get me wrong, I’m not after labels at all. The all encompassing medical diagnosis of Turner Syndrome ensures that G will have a lifetime of support, but purely medical. And as I’ve found out over the years, only when you fight. Only last week did Ear, Nose and Throat try to discharge G off their books for the umpteenth time, not appreciating that girls and ladies with TS need a lifetime of multi-disciplinary care.
The ADHD testing showed G did not hit the criteria required but that didn’t surprise me. I feel her impulsive, fidgety tendencies are more about seeking proprioceptive input and craving movement and stimulation than attention deficit disorder.
Interestingly her two year awaited occupational therapy appointment was an eye opener and highlighted far more than I’d expected: hyper mobility of joints and visual-perception processing problems (yep we had to Google it too!). G’s scoring in this area was way below average-that is her ability to receive, interpreting and acting upon Information received via her eyes. Not an eyesight problem, but more so your brain knowing how to act upon what it’s just seen. The above has been highlighted in a report to ourselves and school, and school are in the process of putting the recommendations in place to best support G. I’m incredibly glad that I fought for that particular assessment.
Gymnastics galore
G has been obsessed with gymnastics since lockdown began, even earning a Blue Peter sport badge for trying a new hobby. Three weeks ago G finally joined a gymnastics club and she couldn’t be happier. Maybe that hyper mobility could prove beneficial!
No more tears
G had her regular bloods taken and for the first time EVER did not cry. Super proud of her. She’s been jabbed every single day since the age of 4 with hormone injections, and blood tests would send her over the edge. Not anymore. You go girl ❤️
So that’s a wrap... she’s a happy bunny at the moment, and so are we. Happy that we’re blessed to have G and H.
