Another school year has come and gone. It feels like just yesterday we were getting Lola ready for her first day back to school and now here she is ready to move on to a pre-k/kindergarten class. That thought in itself is enough to send me into a blubbering pool of tears, but I’m so very proud of how far she’s come this year. She continues to make such progress each and every day and I can’t thank her support system at the Indiana School for the Blind and Visually Impaired (ISBVI) enough for all they’ve done to foster her development. She had Mrs. Tubbs again this year and now that’s all we hear at night, “Tubbs! Tubbs!” It’s really sweet because clearly Mrs. Tubbs has had an impact on her life…actually on all of our lives. She’s an incredible lady who is patient, kind and loving with our daughter. Lola may be confused next year when she is placed in another classroom, but she’s always up for new adventures so I’m sure she’ll adapt just fine. This year we’ve seen Lola’s language expand, her understanding of demands improve and her compassion for her peers develop. She loves her classmates and there’s one particular little girl whose name can be said and Lola’s eyes just light up with joy. I’m sure she will miss them all over the summer.
What I like about ISBVI is that everyone is involved in Lola’s education. She has the best teachers, teaching assistants, administrative staff, therapists, alternative teachers, dietitians, and everybody else who helps her succeed. I often talk about our village and that is so true at ISBVI. It brings us great comfort to know we can send our child with limited speech to a school for eight hours a day and know she is in good hands with the staff. We thank each and every one of them for continuing to be a champion for our girl. She has blossomed this year and it’s been a true joy to watch.
But this school year has not been without its challenges. The week after Lola gets out of school, she will be admitted to the hospital for a five day video EEG (vEEG) so we can try to capture a seizure. In all of the years and all of the EEGs, an actual clinical seizure has never been documented through an EEG. While we never want our child to have a seizure, we truly hope she has one soon after she’s hooked up. Knowing what type of seizures she is having will give us insight as to what we are up against and it will help us know what the best treatment options are for her. We are impressed with all of her improvements given the fierce battle she’s had this year with her epilepsy.
During spring break, we enrolled Lola in an Applied Behavior Analysis (ABA) program with Access Behavior Analysis. I’ll explore ABA in a more detailed post later this summer, but ABA has been so beneficial for Lola. Because Lola has a hard time communicating, she has developed some behavioral issues. She’s frustrated because she can’t get her point across. She can’t always articulate her wants and needs. She hits herself or others (primarily me) because she’s upset. It’s hard as a parent when you have no idea what it is that your child is asking for and how to better accommodate her needs. Is she crying because she’s hungry? Tired? Thirsty? She’s in pain, but where? Or is she not in pain? What does she need? Why is she so upset? It’s exhausting for Lola and it’s exhausting for us. I’m thankful we happened to be at a neighborhood playground on a Sunday afternoon where we met Alysia, the owner of Access Behavior Analysis. We needed experts in communication and behavior and we found those experts at Access. They have gone above and beyond to help Lola (and our family too). In my heart I know ABA–just as ISBVI–is helping lay the foundation for Lola and her independence.
Access arranged for an ABA therapist named Kristen (who adores Lola and who Lola loves just as much) to be paired with Lola at ISBVI all day, every day. We owe our gratitude to ISBVI and Mrs. Tubbs because they were so open to having an outside provider in the classroom with Lola. It’s not that ISBVI wasn’t providing what Lola needed because that wasn’t the case at all. It’s just that Lola’s behavior was getting worse and if she couldn’t follow simple directions without throwing a tantrum then how on earth would she be able to learn. We wanted to not only help Lola find the most successful way to learn, but we thought it could be beneficial for ISBVI as well since we were afraid her behavior was becoming disruptive.
Kristen and Access have begun to unlock a part of Lola that was very difficult to tap into. We’ve seen Lola’s problematic behaviors start to diminish, her words begin to emerge, her hitting decrease and she just seems to be comprehending what it is that is being asked of her. It’s been so beneficial which is why we are elated Lola will be attending Access in the clinic setting all summer long. We have found more people to be a part of our village and much like ISBVI–they are all helping Lola thrive in life…and she sure is thriving.
Pictures courtesy of Mrs. Tubbs and Kristen.