About this time last year, I was preparing for Elena’s Annual Case Conference (IEP Meeting for Elena’s school) and had a complete moment of panic and desperation. Elena’s team at school has ALWAYS been amazing, supportive and loving with her but I had also been advocating for years for training and consistent use of Elena’s vision, believing this to be a major “key” in unlocking Elena’s ability to communicate.
Let me back up a second…you may remember from long ago posts about Elena’s vision impairment. For a refresher, you can search my blog for “CVI” or I’ve linked HERE and HERE some previous posts. The Cliffs Notes version of this is that Elena CAN see but requires loads of specific adaptations and accommodations for her to be able to utilize her vision. I had been advocating for these for years, but despite my best efforts, I knew the level of understanding and purpose was just not there.
During my panicked frenzy, a crystal clear memory popped into my head about a visit we had taken around five years ago to see Dr. Roman, who is the country’s leading researcher and doctor on Elena’s specific vision impairment (CVI). She had mentioned another name to me during this evaluation of someone who could help with communication. Throwing up a Hail Mary, I quickly fired an email off to Dr. Roman explaining my desperation for Elena to be able to reliably communicate with us and my lack of progress in advocacy for Elena’s vision. Miraculously, Dr. Roman emailed me back within minutes with a name and an email for the same person she had mentioned five years ago (Dr. B)!
Wasting no time, I launched another email to Dr. B (what I felt) the internet universe, certain to never be read. My jaw dropped to the floor and my heart began to pound when a short time later, I had a response asking me to call her immediately. I gathered my thoughts, dialed the number and was talking directly with Dr. B! We quickly ran through the list of concerns I had, a brief description of Elena and her abilities, when she said to me, “It’s so perfect that you called, because I have been working with some colleagues on developing a program for this VERY issue. It’s based on years of research that I have done and is in its infant stages, but would you and Elena be willing to be our guinea pigs for this pilot program?”
It was all I could do to hold in my sobs of disbelief and relief. YES! And a year later, our lives have changed as a result of this perfectly-timed, indisputable miracle.
We are still navigating through this collaboration and pilot program. I want to wait to share the whole story until I have all appropriate permissions, and perhaps a more specific outcome. I will say it has been life changing. It has poured copious amounts of hope back into my tank and worked to douse the fear and grief that arise in its absence.
Over this past year, Elena’s school team and quite frankly, Chad and I, have been able to step inside Elena’s world, understand it better, see how it works, uncover the ability that often lies behind the more obvious disability. What we have found is our girl, whom we knew and was there the whole time. And Laney is loving it. It’s like she knows she is finally being understood. At last, we have identified what environments and accommodations support her enough that she can show us what she knows and what she is capable of. We have all been in awe of her response to our adaptations.
Last week during a meeting, her SLP (Speech Therapist) who has worked with Elena for many years, spent some time reminding of us just how far Elena has come. Despite her inability to verbalize with us, she highlighted all the other amazing ways Elena has learned to communicate over the years, a true miracle in itself. Through these various modes of communications she has been able to demonstrate an understanding different expectations and the differing roles various people play. She knows to be silly with some people and others who need her focus. She lets us know when she doesn’t like something, and very obviously when she does. She answers questions, and even more so, doesn’t answer questions when she doesn’t want to! And my favorite, she not only has the greatest sense of humor, but she understands humor. She is able to communicate through her eyes, her body, her vocalizations, her switch (which you also hear in the video below), all meaningful and all miraculous. It is so marvelous to see how, without ever stringing together words, a human being can communicate so much about who they are and what they know.
I often spend so much time and energy of desiring more for her, wishing she could do this or that, longing for things that make sense to me, and what I often miss is what she can do, who she truly is, how her differences shine, how she is a living miracle. Laney’s life is full-to-the-brim with purpose and meaning and beauty, a finite example of God’s mercy, His love and His redemption of her tragedy that had burned down all our hopes, dreams and expectations for her. In the ashes of our hollowed out dreams, of all that she has endured, of all that her broken little body must accomplish each day, she still brings joy and intention and love and depth into those around her. Her brain and her body, though not able to do things the way that mine do, are STILL able. Chad and I have long known these things about Elena, but this collaboration with this incredible team over the past year has been affirmation to keep going, keep trying, keep pushing the limits we set for her. Every inch of progress is celebratory and sends me to my knees in humble gratitude for these cherished gifts.
This past year has been tedious for a number of reasons. It has felt overwhelming at times with the sheer amount of work and attention Elena has needed in a variety of differing areas, but I am reminded that it is ALWAYS worth it. She is ALWAYS worth it. I learn so much along the way, and perhaps the greatest lesson in this past year of advocacy, learning and adapting is just how much we can learn when we set ourselves free from the confines of our own perspective. It was us, that needed to step inside Elena’s world. It was us, that needed to learn her language. We needed to adapt ourselves to her.
Her SLP sent me the video below of one of their recent sessions. You may remember Elena saying, “I love you” on video a couple years ago. She still loves to verbalize and “talk” with us. Lately, she has really been working to mimic certain words. She will say “oh yeah”, “bath”, and my personal favorite, “mom”. It’s just one of the ways Elena uses to communicate with us, but for all the times I felt certain I would never hear a word from my beloved daughter’s mouth, “Mom” has never meant more.