Passing for Normal

October is Rett Syndrome awareness month so we dedicated this episode to things to be aware of, in regards to Rett syndrome, particularly what you CAN do to make it better.

First and foremost, we talk about the 9th World Rett Syndrome Congress. Very exciting! Sept. 14 is R U OK day in Australia, an effort lead by a suicide prevention group. We talk about why this is so important and how having a child with special needs doesn't exempt you from all the normal stuff in life.

In this episode we talk about how each of us uses social media differently and how complicated our relationships with it are. We also give a quick update/ follow up on Chloe's school.

Special guest Chloe wanted to come on and talk about how stressful school has been and how this is impacted by being an immigrant with a dead sister but nobody notices that. We also talk about how a love for accordions is getting her through and why Colleen irrationally went to great lengths to purchase a 90 year old German accordion.

After an eventful trip back to California, we are settled back into winter to talk about how the trip home was in reality after we discussed what we expected in the previous episode. Spoiler, we had a great trip. We also talk about how happy we are to be sad.

I know we said we were taking a break but surprise! We decided that we wanted to share something that was a little more raw while we are in the space to talk about it. In this episode we talk about some of the reasons that made the last place we lived with Claire really hard. In our typical lighthearted way, we discuss some very heavy topics closely related to Claire's death and how going back to this place feels very different for the two of us. We realize this is sensitive and may upset some but we hope that it will also help others in similarly difficult situation feel less alone. We recognize it is not common to talk about circumstances around a child's death, but the fact of the matter is this is our story and talking about it helps to remember the reality of what we are working with. For those of you that choose to listen, we appreciate it and would love to hear your thoughts. You can message us on instagram @passing_for_normal

In a special Friday evening episode, we discuss Chloe not needing us, how crazy winter in Australia is and the complicated feelings around social expectations of grieving parents. This will be our last episode until August. We are looking forward to a break and coming back with some fresh stories.

In this episode we talk about self care, how ridiculous a lot of the messaging around it is and what we have found to be helpful. We also give a little update on what we have learned about the Australian high(er) school situation and talk about how awesome ASCEND, the upcoming conference hosted by the International Rett Syndrome Foundation.

We talk about how music has played a role in many of our more challenging times and how weird it is to be in a fairly normal little groove.

In this episode we discuss learning a whole new school system, which moves graduation up by two years and how Colleen can't cry so she's incredibly overwhelmed by dress shopping, which should be a fairly simple and straight forward process. We also talk about learning how to podcast and not delete 8 minutes of a show. So much to learn, thank you for being here.