A seizure rollercoaster ride….

I’ve learned a lot of things the past few years dealing with Rett Syndrome. First, every time I write Rett, it gets auto corrected to Rest, which is hilarious. I wish she had Rest Syndrome  A syndrome where everyone is well rested, sounds amazing. Secondly, Magnolia’s perseverance is unwavering. Every once in a while, I’ll Read more about A seizure rollercoaster ride….[…]

Back to school on April 11

We have been homeschooling Maggie this year, for various reasons – mostly, because she had a rough year last year.  She was constantly getting sick, which in turn caused more Rett symptoms, and though she has fought so hard to gain back her strength, balance and walking ability, being at home has allowed her to focus Read more about Back to school on April 11[…]

How does a regression happen?

After witnessing Maggie’s struggles with communication, I’ve become more aware how complex communication really is.  People who knew her when she had access to a few words are still, as are we, confused about how it can be there and then next thing you know, just as easily, be gone.  That’s a regular point of Read more about How does a regression happen?[…]

Memorial Day and Communication

We’ve been trialling a different eye gaze computer for the last few weeks.  Susan Norwell, one of the respected experts in Rett Syndrome communication, came to visit and gave us a real kick in the pants – in a good way (video forthcoming).  We’ve become very adept at reading Maggie, understanding what she wants, understanding what Read more about Memorial Day and Communication[…]