My new piece on Maggie’s style

I wrote another article for Rett Girl magazine and I hope you’ll give it a read.  It’s been hard to try to figure out Maggie’s own personal style, since both AJ and I have our own ideas about what style she likes.  But this year, I’m taking her back to school shopping, and she’s picking Read more about My new piece on Maggie’s style[…]

How to talk to a non-verbal kid

Talking to a non-verbal kid is a complicated endeavor.  They can’t talk and so we don’t listen.  But what we’ve learned is that they do talk.  She doesn’t use words.  She doesn’t use hand gestures (consistently) but she does talk.  You just have to know how to hear her. Our daughter has very consistent ways Read more about How to talk to a non-verbal kid[…]

Symptoms of Rett Syndrome | Share for Awareness

  Rett is a progressive disorder – it will get worse and worse until there is a cure.  In other words,  we are never out of the woods.  Every girl’s Rett syndrome is different. These were Maggie’s Rett symptoms last year. Maggie has lost her speech. Maggie’s arms & hands have Parkinson’s like tremors. Maggie hasn’t Read more about Symptoms of Rett Syndrome | Share for Awareness[…]