Maybe you are like me and feel deep emotions when you hear a family’s story of their child’s initial diagnosis with Rett Syndrome and their journey so far. I am excited that families are getting the word out about Rett Syndrome, boy or girl, yet, saddened that another family must go through this experience, as we patiently wait for treatments and cures.
The most recent story of Richard Engel and Mary Forrest’s son was no different. Here is a committed and engaging couple opening their hearts to the world in such an incredibly public way – giving us a glimpse into their pain, hard work, and hope. As I watched both parents being interviewed on the Today Show, this amazingly engaging little boy came on screen and played and interacted with his beautifully interactive parents at home. He truly lit up the screen with his smile, made amazing eye contact with his parents, crawled joyfully, and I witnessed pure bliss as he rolled a ball back to his folks with such a sense of pride.
And then, I heard it. That phrase that likely came out of a professional’s mouth, rendering their own (we know, incorrect) verdict of what life would be for this beautiful young boy. It was said, “he won’t advance, intellectually, past toddlerhood.” That phrase was like a gut-punch to me, as I am sure it was to these incredible parents and the hundreds of thousands of families who have received a diagnosis of Rett Syndrome over the years. Unfortunately, those words have lasting impressions and consequences. Having worked within the Rett Syndrome community for more than 30 years, I know there are parts of his sweet self that may not advance. But those parts all revolve around motor abilities. I carry the firsthand knowledge and experience that countless girls with Rett Syndrome (and even the few boys I have been blessed to work with) are learning to communicate purposefully and fully through eye-gaze technology. That individuals with Rett Syndrome are learning to read and write when they are given the chance, the appropriate education and creative materials and technology that circumvent the motor apraxia lying at the cornerstone of this disorder. With this firsthand knowledge, comes the tangible hope that all these kiddos have the opportunity to communicate, learn and participate in life.
And I feel for these parents. It is yet another example of how to level the playing field is when you are faced with devastating news about your own kiddo. Being famous, having the means, and education to search out therapy does not protect you from dangerous assumptions made by professionals. How is a family really to know any differently if professionals, charged with supporting and guiding them, do not learn any differently?
So, in my more perfect world, I would love to have a new family with Rett Syndrome instead hear, “This is a very difficult diagnosis, and many areas of their life will be impacted. But the cognitive implications of this diagnosis are not as devastating as was once thought in the past. We have experience with children with Rett Syndrome reading, included in general education classes, learning to write with ABC Flipbooks, and communicating with the use of amazing eye-gaze technology. And we’re ready to help you learn how to help your child succeed in this life by assuming competence and advocating for him/her to have access to true and authentic learning.”
Then, a video is played where that engaged and joyful little face I saw on the screen would have his same two loving and beautifully interactive parents modeling language on an eye-gaze device. It would be their clear hope, based on knowledge, that he would learn to communicate, to read, to imagine, and possibly write about those things one day. That his parents would read a book to him and, by watching his eyes as though they acted as clearly as a pointed finger, they would have the comfort of knowing their son hears and understands everything about the world around him.
So, yes, we still have work to do, and I look forward to doing it together, hand-in-hand, and on behalf of all our kiddos across the globe.
We sincerely thank Richard and Mary for sharing their story. To read the full story published by NBC, click here.
Susan Norwell is co-founder of Rett University, an educational services organization aimed at empowering parents, educators, and therapists with the strategies and techniques needed to help Rett Syndrome students reach their highest potential.