In six months, Julianna will exit First Steps and enter the public schools.
It sounds like a long time, especially relative to her age: two and a half. But it’s not. The urgency in the way I view her development has really ratcheted up in the last month or two. Even before Julianna got sick, I was starting to get squirmy anxious about it.
This may seem excessive…and it probably is…but it’s not without reason. Seven months ago, Julianna took her first steps. Today, she’s still not walking. (Meaning, she still prefers to crawl. She can walk, she just doesn’t.) Six months doesn’t seem very far away to lose the regular, one-on-one attention that characterizes First Steps, with its home visits and our wonderful, wonderful therapists. She will get services at school, but not as often, and not as focused.
My goal has always been to have Julianna as far along as possible before she graduates First Steps and moves into the school system. But she is a child who takes her time and refuses to be rushed. And with my attention fractured as it always is, I don’t work with her as much as I should.
Yesterday morning, some friends invited Alex to the park. I was teaching lessons when he left, so it wasn’t until an hour later that I realized the magnitude of the change in the household. I came upstairs and sat on the floor with Julianna and Nicholas, and I pulled the ring stacker, which the speech therapist had been using with her, toward me. “Julianna,” I said, dumping the rings on the floor, “can you show me the blue ring?”
She gave me that big squint-eyed, toothy “silly” grin, and bounced a few times as she guffawed. And then she picked up the blue ring and put it on the stacker. I was floored.
I was hyper aware of the development of Alex’s play skills, because I would sit on the floor with him for ten minutes and work with him. Julianna’s never gotten that attention from me. I wrestle with her, do PT with her, work on spoon feeding and toilet training, read books and do signs—but I don’t sit down and play with toys with her. She gets so much focused attention from therapists that I have placed my focus on trying to make sure Alex gets some one-on-one attention to mirror it.
But sitting there on the floor, speaking softly to my little ones, relaxing into the quiet of the house, I realized how demanding Alex really is, how loud, how much of the chaos of our life emanates from him. Can you believe that? We have a daughter with Down Syndrome, who has five to six therapies a week, who has been hospitalized three times for illness, who hollers and shouts to get our attention because she can’t talk. And yet take Alex out of the house for a couple of hours, and suddenly I’m relaxed. I can give Julianna the same ten minutes of focused play time that her brother got when he was a baby and toddler.
I’m starting to wander. The point is: the next six months. It seems absurd, but now, at 2 ½, is when we have to start preparing for kindergarten. This might not be the case for most people with a child with DS, but we would just love for Julianna to be able to attend Catholic school with her brothers—for a whole host of reasons: one schedule, one fundraiser, one dropoff/pickup…but also because I want her to be able to attend Catholic school, and I want her to be in the same place as her brothers so they can protect her. However, our Catholic school is not set up for her right now, so if there is to be any chance, we have to start now.
Step one: find out exactly what kinds of things she might need. This is more difficult than it sounds. Rule number one about a child with a special need is that there is no way to predict how high or low functioning they will be; it simply unfolds as with any other child. So no one wants to answer the questions about what “a day in the life” might look like in elementary school. And they also don’t feel the urgency that I do. They get my phone message and say, crazy woman, her kid is 2 ½, she’s not even in Early Intervention yet. I’m not calling HER back!
Step Two: Find out if it’s possible to transport Julianna back and forth from the Catholic school to the public school for whatever she needs. Possible, and practical.
Step Three: Talk to the Catholic school and try to figure out a plan for what could happen, if.
Step Four: take the plan to the pastor and ask if there’s money for special ed.
Step Five: go to the other local parishes and find out if there are other parents who would send their kids to Catholic school, if the services were there.
Perhaps you’re beginning to understand the urgency now?