Try to do a blog post today. Most days I think it, but I rarely follow through. It’s not because I’m not dedicated to Say Hola Lola, it’s just that my free moments are few and far between these days. Anyone with young children knows this to be true. For those that would like continuous Lola updates, I’d recommend following Say Hola Lola on Facebook or on Instagram.
It’s hard to believe Lola has completed her first full year of school (she started halfway through last year). On her final day of school, I sobbed like a baby throughout the entire day. I couldn’t articulate into words where the tears were coming from, I just knew I was proud. I watched the video of Lola walking to the bus on her very first day and every video in between.
Because the year felt like it flew by, I wanted to absorb each moment all over again. My husband often jokes about my inability to delete photos or videos from my iPhone and clearly it was for emotionally charged days like that. I wanted reminders of when she accomplished a goal for the first time or what cool adventure she had went on with her school. I went through all 900 + pictures on my phone and beamed with pride. Our little girl is growing up.
All of these pictures were taken at Lola’s school (minus the one of Lola walking with her daddy to the bus) and do you notice a theme? Lola is smiling from ear to ear! When you have a child with special needs and who has limited speech, you have to trust those that surround her. Are they taking care of her needs? Do they accommodate her? Do they gently challenge her to try harder? Are they nice to her? All of these things that you assume will happen in a school setting yet unless your kid can tell you or unless you are there, you have to rely on your instincts. My instinct told me Lola was in good hands and this was confirmed when I noticed Lola’s general demeanor when it came to all things school-related. They say a picture is worth a thousand words and, for us, it couldn’t be more true. Lola’s face says it all. She is loved, she is well cared for, and clearly, she is happy.
This year has been medically challenging for Lola. Last August, her seizures came back after staying dormant for three years. She was put on a new anti-epileptic drug that brought out Lola’s (how can I say this politely?) inner resilience. She was agitated, irritable, angry and kind of mean. She was an altered version of our daughter yet the medication seemed to be working against her seizures. But then her seizures began to creep back again. First only on weekends then they started to occur while she was at school. We made the decision to wean her off of the drug for two reasons 1) it wasn’t working and 2) our daughter was like Jekyll and Hyde. So between the seizures, the medication side effects, the blood draws and the dreadful 48 hour EEG…well lets just say it was a rough year for Lola. But thankfully, she is in a school environment where they understand the challenges that go along with epilepsy. They were supportive, helpful and clearly concerned about what they could do to assist in any way necessary to ensure Lola’s health thrived. In spite of this rollercoaster year, Lola has continued to blossom in every area of her development.
I can remember the very first report card Lola ever received. The rubric for grading students was different so Lola’s report card had nothing but N ‘needs improvement’ and P ‘progressing’. More N than P actually. It felt like a dagger being lodged in my chest. The next day, without prompting, her teacher reminded me to look at how far Lola has come by her own standards and not that of an ominous scale. My mindset quickly changed and has stayed that way ever since. The most recent report card was full of ‘satisfactory’ and ‘progressing’ grades. Her biggest downfall was mathematics, but I’ll take the blame for that one as my math skills have never been the greatest. So while she isn’t counting numbers quite yet, she is expressing her feelings, she’s correctly using words with objects, she follows directions, she likes to give hugs and kisses, her self-feeding with utensils has improved, she is clearly focusing when she tries to stack blocks and use shape sorters, she can communicate her wants and needs, she shows self-control, she is getting better at potty training and she is just becoming an independent little lady. In my eyes, she is ‘progressing’ in all aspects of her life not just at school.
We owe our gratitude to Lola’s teacher and aide. Both women have shown our daughter nothing but compassion, patience and love. We are thankful for all of Lola’s therapists who helped her expand her skills on a daily basis. We owe thanks to Lola’s AWESOME bus drivers who continue to check on Lola even though school has been out for over a week! To the school nurse who had the daunting task of calling me many, many days this year to tell me about Lola’s seizures — thank you for taking on that unfortunate task. And to every other person at the Indiana School for the Blind and Visually Impaired who has helped our daughter thrive, we are thankful you are all part of ‘Team Lola’.