Today is the first day of school for kids going to the Indiana School for the Blind and Visually Impaired (ISBVI). Lola would normally be waking up at 5:45 a.m. I’d be trying to get her to eat a little something before her long ride to ISBVI. She’d wait patiently outside, knowing the bus would be coming to pick her up soon. She’d ride with her friends and listen contently as her bus driver, Terri, and bus monitor, Toshua, sang to her. She’d be greeted at ISBVI by familiar faces and welcoming voices. She’d know she was back to her pre-summer routine.
But today Lola is sleeping in. We will still rush around because nothing is more chaotic than corralling two young kids in the morning. We will get her excited for the day, but not for the same reasons. The bus will be near and her friend, Jeremy, will be confused when they continue on past Lola’s house. Jeremy really began to take to Lola last year. Terri may cry a few tears. Toshua will shed more. That bus will pull up to ISBVI and one little girl will be missing this year — Lola.
As a parent of a child with multiple disabilities, you carry a great deal of weight on your shoulders when it comes to school placement. We don’t worry about the how students are performing on their ISTEP tests. (An Indiana form of testing children’s aptitude in school that was recently discontinued.) We couldn’t care less about the shiny reputation. We don’t let words like “Magnet” and “Charter” influence our decision. We have a different set of criteria. Is my child safe? Do I feel comfortable with the staff? Is there open communication? Is my child included? Are they making the proper accommodations? How are the therapists? Does my child with limited language squeal with happiness when we talk about school or does she make a fuss? Much like any parent, we go on gut instinct. We don’t have the luxury of hearing about the day from Lola. We need to trust. We need to feel confident and comfortable with where she’s going for eight plus hours a day. And with ISBVI, we felt we had found a good match for our family. This made the decision to pull her out ISBVI that much harder. Rob and I talked about it a lot. We debated. We weighed the pros and cons — always using Lola as our guiding light. It wasn’t easy, but we knew we had to do what was right for her. Therefore a couple of weeks ago, we withdrew her from school (with the door left open to return to ISBVI) to continue on the path with full-time applied behavior analysis (ABA) at Access Behavior Analysis.
Since Lola began attending Access’ clinic over the summer, we have seen incredible and I mean incredible changes. Access focuses on increasing Lola’s communication and expanding her language so that her problem behaviors will be eliminated. Once those problem behaviors start to dissipate (slapping, dropping to the ground, screaming, tantruming) then she will be more capable of succeeding in an academic setting. The underlying question has been — how best does Lola learn? What motivates her? Once they began to figure out how she learned, she started responding in miraculous ways. I think that’s what I love most about Access. They understand not all children learn the same and they modify their program to match the child. It’s cliché, but they are definitely ‘Access’ing Lola. We have witnessed a bright and curious little soul emerge out of Lola. No longer stricken with the inability to make her own choices. She has a say. She always has, but now she can voice it.
Lola has begun to use words we didn’t even know were in her, but clearly she has been paying attention. She can now spontaneously tell me what she wants to eat (cheese, sandwich, apple, banana and countless other food associated words), if she wants me to chase or tickle her, if she prefers milk or water with dinner, if she wants ice in that drink, if she wants to sing a particular song, if she wants to sleep, if she wants to play or go out front, and so much more. These may be basic for most five-year-olds, but they are monumental in our world. And these are just a few examples of her growing language. This weekend she told me to hurry up and said, “Mom, let’s go!” I honestly couldn’t believe what I was hearing. I’m not surprised, but I’m in awe. Since she was an infant, we’ve always spoken to her as if she understood every word that came out of our mouths and I’m so glad we did. What is emerging out of her is a testament of her ability to learn, and our commitment to always challenge Lola and her development. Now she still gets frustrated when we don’t get what it is that she wants, which we understand. We get frustrated for her. But with time and the expertise of the incredible team at Access, I’m sure those frustrations will start to disappear because she’ll have either the words or other forms of communication to explain her wishes. Sebastian even notices she is talking more. He’ll say, “Mommy, Lola said she wants to eat. You need to fix her something!” His compassion and eagerness to help his sister are traits we could never teach him — it is just who he is and we couldn’t be more proud. He is exactly who she needed in life.
In addition to the language, Lola is listening and following our directions. I’m no longer stricken with the worry of taking her to the store. It’s a work in progress, but each time we go, it gets a little bit easier. She now stops when we ask her to (making the world much safer for her) and her ability to wait patiently makes outings not as stressful. She and her brother are getting along better because she now understands what it means to share. It doesn’t mean she always does it, but she’s learning to give up her favorites or items she has taken from him. While our house is still in a constant state of disarray, she is learning to pick up, put dishes away in the sink, and put her clothes away. She’s just so much more aware of her surroundings and what is being asked of her. By far, Lola’s biggest challenge she has taken on this summer is becoming potty trained. I hesitated sharing this private news, but that is part of the journey and I don’t think she would have been as successful if it weren’t for Access. They had a very stringent protocol they followed with her and we were a huge part of it as well. But we weren’t alone. They sent therapists to our house every day for a week while we worked on potty training. Access wasn’t just supporting Lola’s success, they were supporting us as a family as well. And I’m proud to report she has been in big girl underwear for two weeks now! She has done remarkably well!
Now look, we know Lola having a one-on-one ABA therapist forever is not realistic. That’s the one thing I hear the most from people when I talk about pulling Lola from school. We get it. We don’t want her to need an ABA therapist forever. Our goal is to utilize ABA to its fullest extent now so we can set her up for future academic independence (and lifelong independence) later. At Access, they will help us transition her back into a school setting. And much like we have done evaluating ISBVI as her school placement, we will do the same with Access. We will use the same evaluation tools each year to determine if she is getting everything she needs from Access. When she is ready to move on, I know they’ll be behind us 100%, just like ISBVI has been. Everyone wants what is best for Lola and we genuinely appreciate the support.
So today will not be Lola’s first day of Pre-K at ISBVI. Instead Lola’s daddy will drive the mile north, past ISBVI, to drop Lola off at Access. She will get giddy with excitement when she sees where she is going. She will say things like swing, ball-pit, Kristen, Janice and Audrey because she knows Access awaits her. She will walk in the doors and be greeted like the little celebrity she has become. While the familiar faces have changed, the welcoming voices are just as genuine. She will see her new friends and she will leave her father without the least bit of a goodbye. She has found her new place at Access and we couldn’t be more elated to see what is next to come.
Anyone who has followed this blog knows how much Terri and Toshua mean to our family and that meant telling them this news was extremely difficult. But our bond will continue long past Lola’s school days as they are two of the best women we have ever met!