Category Archives: Special needs siblings

A Trip of a Lifetime

I recently took a trip with Katelin. A long, boring, exhausting trip- more than worth it for the end result, but the getting there and getting back were tough. Katelin threw up on the way back and that was the … Continue reading

Posted in Acadia, Communication, cure, hope, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness,, screaming in rett syndrome, Special needs siblings, Talking, Trail to a Texas Trial, Trofinetide, Trofinetide Phase III | 2 Comments

One Moment in Time…

To be honest, I had to wait over a day to try and write this post. And still, I start crying; I ramble; I’ve looked at what I’ve written and while to a special needs’ parent it may look coherent, … Continue reading

Posted in America's Got Talent, boys with Rett syndrome, Communication, hope, Kodi Lee, Music, Rett Syndrome, Rett syndrome Awareness, screaming in rett syndrome, seizures in Rett syndrome, Special needs siblings, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , , , , , , | 3 Comments

Grieving a Child Gone, yet Still Here

For many parents, I’d almost dare to say all, Life can be categorized as “Life before Rett syndrome” and “Life after Rett syndrome”. My daughter, Katie, is 24 now. For 22.5 years I have loved the child in the “Life after … Continue reading

Posted in boys with Rett syndrome, cure, fund-raising for rett syndrome, Rett Research, Rett Syndrome, Special needs siblings, Trail to a Texas Trial | Tagged , , , , , | 139 Comments

A Month of Awareness

  October is Rett syndrome Awareness Month. This means of course to make OTHER people aware of Rett syndrome; for us parents, siblings, grandparents, caregivers the whole YEAR is awareness month.   So, how to make people aware? There are … Continue reading

Posted in Army of us, cure, fund-raising for rett syndrome, Rett Research, Rett Syndrome,, Special needs siblings, Trail to a Texas Trial | Tagged , , , | 5 Comments


In case you are slow to know, there’s a new show out there. One that speaks for US, the families of the speechless. It’s funny! Hey, we have incredibly funny lives at times. It has great lines like….”Other people’s opinions … Continue reading

Posted in Communication, Education, Special needs siblings, Speechless, Trail to a Texas Trial | Tagged , , , , , , , | Leave a comment

Conference Post 3-It Ain’t all about the Kids.

Dr. Kaufmann (who will be getting a few posts here) gave a presentation about the behavioral issues in Rett children and adults. I’m going to do it in two parts. I can’t find the booklet today that gives the title of … Continue reading

Posted in anxiety in Rett syndrome, Dr. Walter Kaufmann, Rett syndrome conference 2016, Special needs siblings, Trail to a Texas Trial | Tagged , , , , | 1 Comment

A Rett Syndrome Mother’s Day

As special parents know, holidays are almost always a let down. Christmas usually sucks so bad it borders on travesty. Mother’s Day is a complicated day for us mothers. First of all, you can almost guarantee that whole eat in … Continue reading

Posted in cure, hope, Neuren, Neuren Pharmaceuticals,, Special needs siblings, Trail to a Texas Trial | Tagged , , , , , , , , | 4 Comments

The unseen- siblings of special needs kids

Originally posted on seizinghopedotcom:
Emily and I on a rare 1:1 lunch date The unseen-siblings of special needs kids Invisibility. That’s the superpower that siblings of special needs kids cultivate. Even if they wanted a different one like being able…

Posted in sibling sounding board, Special needs siblings | Tagged , , | 1 Comment