There is something so refreshing and encouraging about spending time with people who know where we're at (because they've been there) and know what we're going through (because they're going through it too). Although Joey and I have always felt supported and loved by our community of friends and family, there is still something unique about shared experience. It's hard feeling like we always have to explain things. Sometimes I feel like a poorly written medical textbook trying to give definitions of diagnoses and reports on doctors visits in understandable English (I don't expect you all to be reading up on Aurelia's medical manual). Last weekend, Baby A and I had a chance to feel "normal" by attending the Baby Jamboree at the Washington State School for the Blind in Vancouver. It was basically like going to summer camp for visually impaired babies. And we had a GREAT time!
Just a quick course in some terminology:
-Visually Impaired or VI. This is the umbrella term for any person with a vision loss that cannot be corrected and is significant enough to require additional support and reduce capabilities. Underneath this umbrella you'll find total blindness, legal blindness, low vision and partially sighted. Aurelia falls into the low vision or partially sighted category.
-CVI or Cortical Visual Impairment. This is Aurelia's visual diagnosis, I've talked about it here and here. CVI is a problem with how the brain processes vision rather than a problem with the actual eyes or optic nerves. People with CVI have some sort of brain damage and often have other disabilities or delays.
-TVI or Teacher of the Visually Impaired. This was a new one to me. I always called our TVI our vision therapist, but apparently they are two very different things. A TVI is an educator that is specifically trained to teach blind or VI children.
-Early Intervention is the name of the national program that provides support for kids birth to three that have developmental disabilities or delays. All of our IFSPs and therapies come through our early intervention involvement.
Man, our life has a lot of acronyms: CVI, TVI, VI, FRC, IFSP, PT, you get the picture.
Ok, back to our weekend at the Baby Jamboree.
There were workshops on early literacy, healthy development, specific diagnosis, and even one on toys. There was a panel of adults who are blind or visually impaired and parents of older children who are blind or visually impaired. It was a weekend full of information, resources, and a whole lot of support. How great to have a room full of specialist at our fingertips, all ready and willing to answer questions and give ideas. And did I mention that childcare was provided for all of it? So I was actually able to pay attention, eat meals with two hands, and have uninterrupted conversations (all of which revolved around Baby A, of course). There were so many happy and willing arms wanting to hold my baby.
We stayed in cottages on the campus, grouped together with families that had similar diagnoses. All of the babies in our cottage had CVI, and it was wonderful to compare notes, ideas, challenges, doctors, fears, hopes, goals, on and on. All of our children are very different with very different challenges and strengths. But we found commonality in CVI and having children with multiple disabilities. We've all spent a lot of time on Dr. Google. We've all dealt with the reality of a very unknown future for our children. We've all had a lot of the same conversations with well meaning observers (two common phrases we've all heard often "She looks so sleepy" and "She seems to see fine"). And just like at summer camp, we exchanged information at the end of the weekend and hope to stay in touch. A quick shout out to any of you mommas reading this post! Our time with the other families was by far the biggest highlight of the weekend.
Another highlight for me was the workshop on early literacy. If you know me at all, you know I love the written word. I love to read, write, research, and read some more. And I have to admit, when we found out about Aurelia's eyeballs, I cried when I realized she might not be able to share the joy of a good book with me. In fact, it's one of the areas I see her struggle the most visually. She cannot process the images in the board books I try to read her. The one book she loves is, "I Am a Bunny," although she only likes the back cover with Nicholas in his red overalls and yellow shirt. The early literacy workshop opened my eyes to a wide, wide world of possibility for Aurelia, regardless of where her vision level may end up. We were given resources for braille, large print, experience books, story box books, tactile books, and so much more. And I am so excited to begin introducing my little lady to literacy.
I walked away from the weekend pretty worn out. There were a lot of late nights, just like at summer camp. Although instead of chatty campers, we were dealing with fussy babies. But I also walked away feeling refreshed and excited. Visual impairment doesn't seem quite so scary or lonely. Oh, and apparently Aurelia needs an IPad 'cause that's where the cutting edge technology is for CVI treatment. Her birthday is tomorrow, maybe when she turns two.