Grace For Rett Syndrome

Grace has #rettsyndrome and a bad case of sass. Newly diagnosed? ⬇️ You can sit with us.

[Grace For Rett Syndrome @GraceForRett]

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 —> https://t.co/GsjGObz1Fy

#rettsyndrome

[Grace For Rett Syndrome @GraceForRett]

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

[Grace For Rett Syndrome @GraceForRett]

@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 https://t.co/5gXailqeNd

[Grace For Rett Syndrome @GraceForRett]

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

[Grace For Rett Syndrome @GraceForRett]

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

[Grace For Rett Syndrome @GraceForRett]

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

🔗 https://t.co/SCeDK9f05r

[Grace For Rett Syndrome @GraceForRett]

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

[Grace For Rett Syndrome @GraceForRett]

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

[Grace For Rett Syndrome @GraceForRett]

In Rettrospect, I could see she was different. https://t.co/TydRk5hTuh #rettsyndrome

[Grace For Rett Syndrome @GraceForRett]

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

[Grace For Rett Syndrome @GraceForRett]

If someone you love is newly diagnosed with #rettsyndrome, this one's for you --> https://t.co/B177riJfAC

[Grace For Rett Syndrome @GraceForRett]

Today on the blog. A post 6 years in the making 💥 https://t.co/NcpkM15uBa #rettsyndrome #rettsyndromeawareness

[Grace For Rett Syndrome @GraceForRett]

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. https://t.co/v3A3pHNUbL

[Grace For Rett Syndrome @GraceForRett]

When you tell special needs parents that we're "too busy", you shame us for just trying to keep it all together. https://t.co/fKmWQXgI1f

[Grace For Rett Syndrome @GraceForRett]

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?

[Grace For Rett Syndrome @GraceForRett]

This. ☹️😢 https://t.co/pKuVvy9Si3

[Grace For Rett Syndrome @GraceForRett]

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 https://t.co/lj1dwbq1cK

[Grace For Rett Syndrome @GraceForRett]

Breathing problems are one of the mysteries of Rett syndrome and they're often misdiagnosed as seizures! https://t.co/ONWKsazLEh

[Grace For Rett Syndrome @GraceForRett]

Is Rett syndrome a learning disability? That topic and more in today's post with contributions from @hminto and Susan Norwell. https://t.co/rAFdyI1NFa #rettsyndrome #apraxia #learningdisability

[Grace For Rett Syndrome @GraceForRett]

Is Rett syndrome a learning disability? That topic and more in today's post on the Grace for Rett Syndrome blog. #rettsyndrome https://t.co/rAFdyI1NFa