This image invokes so many thoughts! I saw this after sitting in an IEP transition meeting and collaborating with a team that recognizes our client’s potential… they get it… they see a wish. In contrast, I have been in other IEP meetings and been told “it cannot be done”, or “that is not district policy”, or my all-time least favorite, “this is how we always do it”. They see a weed. What continues to perplex me is why there are so many contrasting experiences? Shouldn’t we be searching for effective techniques for all children? Isn’t that what school is about?
The news regarding Taysha Gene Therapy trials really left me with no words, much like every other Rett announcement I have experienced in my life. Those who interact with me as a communication coach know of my sister Kristi who had Rett Syndrome. Kristi was born before Rett Syndrome was Rett Syndrome, and I have watched as the gene was discovered in 1999, and Rett was reversed in mice models in 2007. And now, we have this huge announcement from Taysha. We all see that glimmer of hope, looking past the weed and seeing the wish a bit more clearly. It is exciting and a bit mind-blowing.
The strides accomplished in Rett research continually have Susan and I asking… are we preparing your loved ones for the cure? Are we giving them all the communication and literacy tools they need when the cure comes? When Rett was reversed in mice Kristi was 47. My mom was so excited that Kristi could have a cure. It was exciting, but to be honest, the realist that lives in my head was already thinking of the ramifications of 47 years of very little education, 47 years of wear and tear on her body from medications, and 47 years of being trapped, knowing what was going on but with no way to express it. Educational opportunities and support resources are better today, though still inconsistent around the world and even in the USA. For us at Rett University, preparation means playing the “long game”.
So, we are celebrating this amazing news of a potential cure with you but, we are also taking a beat to make sure we are communicating what preparation looks like. We know that communication and literacy are vital. Solid communication techniques, together with reading and writing skills will prepare them for the future that holds the cure. We are working hard to define and redefine strategies to make sure your loved ones are ready. We are here to help you navigate how to dig out the “weeds” and reach for that “wish”. Please let us know if we can support your loved one’s team in their communication and literacy journey.
#WeArePreparingForTheCure #RettUPreppingForTheCure #RettUAreYouReady
-Kourtney
