Grace For Rett Syndrome

I've found in my decade-long career as a Rett parent that there's a lot of misinformation about the condition. 💥 Get the skinny —> graceforrett.com/about-rett/ #rettsyndrome

When Grace was last in the hospital I specifically requested that no chaplains visit us. They did anyway and this can be triggering to recovering victims of cults and spiritual abuse at an already vulnerable and draining time. Cc: @Nemours @orlandohealth @APHospital

@caitmosc @NYMag This is really great and a story I’ve been following too. You said the reasons they changed their mind to adopt a more special needs child are “unknown”. Actually, Myka made it clear (in an interview) why they changed their mind which I discussed here graceforrett.com/rett-syndrome/…

@Ramsfan19731 Yes! Once a dr pretended to know then went to the nurses station and was reading out loud from MY WEBSITE 🤩

@GraceForRett That it’s OK to not know every disorder and step out of the room to talk to someone who knows Rett Syndrome. So many Doctors don’t do it. Like it’s a pride thing. Meanwhile I’m listening to them knowing what they are saying is not going to help Emily. Thanks for doing this!

We’re in the hospital and they’re sending residents to Grace’s room for me to teach them about Rett syndrome. If you could teach new doctors anything about Rett, what would you want them to know? #rettsyndrome

Examining the issues surrounding the rehoming of an #autistic child #adopted from China. Issues like: ✅The fashion of international #adoption in #Evangelicalism ✅The emotion I'm actually hiding with a mask of anger toward #mykastauffer 🔗 bit.ly/Myka-stauffer

Reminding you all to put yourself in isolation because if we don’t get this thing under control NOW it’ll last till July and over 2 million people will be dead. Thank you for coming to my TED talk. #graceforrett #covid_19 #rettsyndrome #flattenthecurve

Please follow the guidelines to protect the most vulnerable in society. Do it for Grace. #graceforrett #rettsyndrome #covid_19 #flattenthecurve

In Rettrospect, I could see she was different. graceforrett.com/about-grace/ #rettsyndrome

@jiysea Thank you so much for taking the time to tell me xx

If someone you love is newly diagnosed with #rettsyndrome, this one's for you --> graceforrett.com/newly-diagnose…

Today on the blog. A post 6 years in the making 💥 bit.ly/stop-raising #rettsyndrome #rettsyndromeawareness

These thoughts blow through me like a breeze on a regular basis, especially when I hear songs. I actually keep a playlist of songs perfect for her funeral and as dark as that is, this post helped me know I’m not the only one. colleenenglish.com/2019/04/16/a-p…

When you tell special needs parents that we're "too busy", you shame us for just trying to keep it all together. graceforrett.com/rett-syndrome/…

The little vent on graces feeding tube was open all night long and her mattress is soaked in a liter of feed 😫 Can I please be allowed to hate my life today?

This. ☹️😢 themighty.com/2016/01/when-c…

Listen in on this conversation with psychotherapist @JoshuaMagro to discover the differences between pain and suffering and how I’ve allowed #rettsyndrome to affect my life graceforrett.com/rett-syndrome/…

Breathing problems are one of the mysteries of Rett syndrome and they're often misdiagnosed as seizures! graceforrett.com/rett-syndrome/…

Is Rett syndrome a learning disability? That topic and more in today's post with contributions from @hminto and Susan Norwell. graceforrett.com/rett-syndrome/… #rettsyndrome #apraxia #learningdisability

Is Rett syndrome a learning disability? That topic and more in today's post on the Grace for Rett Syndrome blog. #rettsyndrome graceforrett.com/rett-syndrome/…