Before I start serving up the main course for this week’s topic, I’d like to start with a deeply joyful appetizer. For those of you who are unfamiliar with some of the risks for individuals with Sotos Syndrome, approaching 40% of kiddos with this genetic disorder have congenital heart defects. Because he was not presenting
Cat painted by me, printed by Andy. Dragons also printed by Andy, on my soon to be painted list. Photos by Ariana. Andy Sometimes it feels like these are times that want to clutch at every stray thought and drag them into the stream of consciousness depths via a concrete encased torpor. An epoch, it
I would love to tell you that this was going to be an orderly and comprehensive post. Alas, I spent far too long trying to make some sort of headway in producing a more cohesive blog appearance, and therefore… We’re just going to do a Jackson Pollock style splattering of updates and hope at least
I had put a “T” on his whiteboard as an example for our son to practice drawing one of his own five days ago, and he wrote the rest of the letters without any sort of example or guide instead. Him and I at school in mid-November. Photos and screenshots by Ariana. A Quick Note
To Tony My sweet Tony, I know impulse control is something you have to fight to improve every day. For you to remember without mistakes the kind of things you couldn’t do around me when I was recovering was a feat that many might not recognize, but I do. I know you don’t speak often
Miss Emily Somehow even when I know the way time can slip through the fingers and the mind, I still struggle to math that there have been enough days to add up to nearly 9 years now that we’ve known each other. From Tony’s second music therapist to one of my closest friends, you will
The biggest challenge for me as a mother, the one-to-one aide for our son Tony, and his hab therapist has been keeping me functional while neurological evaluations and diagnostics are happening. What has been happening with involuntary movements and muscle twitches has been impacting my sleep when the medication balance isn’t working, and when that
A few months back, they replaced our local swirly slide with the above…and Tony’s been afraid to go down it because the decline angle comes with increased sliding speed, which is harder for him with his sensory differences. This past week, he worked up the courage and found a way that worked for him to
For all the weeds of life (i.e. identity theft), I want to acknowledge the varied blossoms of happy moments I have experienced lately and gather them into the tidiest bouquet possible for this post, from the most literal (being able to wear a perfume with strong floral notes without sneezing, wheezing, a runny nose, or
Second screenshot is citation source, photos and screenshots by Ariana. Allergies can come and go. For an item to which a person can avoid exposure, sometimes in as little as a year a person may no longer react to the item. My life has taught me this many times over. My earliest memories are filled
